Riley Children's Health 2021-12-07T20:57:01-05:00 https://www.rileychildrens.org/connections/atom https://www.rileychildrens.org/connections/celebrating-six-years-with-his-new-heart Celebrating six years with his new heart 2021-12-07T13:40:00-05:00 2021-12-07T14:23:58-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Monday was a long day of tests for Michael Deiter. Not the kind of tests you take in school, but the kind that tell you your heart is doing its job.

Michael was at Riley Hospital for Children at IU Health this week so his care team could put his transplanted heart through its paces.

For the 15-year-old, it was hard enough to be up before dawn, but it was a chance to see old friends like cardiologists Dr. Robert Darragh, Dr. Marcus Schamberger, pediatric cardiac sonographer Nancy Kehlenbrink and so many others who have been by his side through the years.

“Long day with some of the greatest, most caring people we have had the pleasure of knowing for 15 years,” wrote Jennifer Gray, Michael’s mom, in a post on Facebook after her son sailed through his annual stress test.

It’s been a long 15 years too, Gray said, starting within days of her son’s birth. And if not for her mother’s intuition (Michael is the youngest of her four kids), his future might have looked very different.

Despite having no indication that there was anything wrong during pregnancy, Michael was born (at another Indianapolis hospital) with multiple complex heart defects that weren’t diagnosed until he was rushed to Riley when he was just four days old.

“It was a complete shock,” Gray said.

And it was only after she insisted multiple times that her son’s lethargy and breathing were not normal for a newborn that she was really heard.

ADVOCACY SAVED MICHAEL’S LIFE

“I kept telling the doctors that something was wrong because he was sleeping all the time. Everybody had a reason for him to be tired, but he would hardly even nurse,” she said.

Still, she and Michael’s dad, John, went home with their bundle of joy just as the weekend was about to start. That Sunday morning, Gray’s parents were visiting from Wisconsin, and she had Michael sitting on her lap.

“Michael was breathing funny. His nostrils were flaring,” she said. “My mom said it reminded her of my younger brother, who also has some congenital heart defects, though not anywhere near as severe.”

That night as her concern grew, Gray called the after-hours pediatrician, and the on-call nurse summoned an ambulance to their home. The paramedics checked out the newborn and determined there was nothing to worry about.

Gray admits to second-guessing herself for a minute.

“You start to wonder, am I crazy, am I sleep-deprived? No, I know what I’m doing,” she told herself.

She followed up with her pediatrician the next morning, and that’s when the physician heard the heart murmur and referred Michael to Riley that day.

Turns out, the little guy was born with multiple heart defects, including double inlet single ventricle (only one working pumping heart chamber), coarctation of the aorta (a narrowing of the aorta that can prevent blood from circulating to other organs) and septal defect (a hole in the wall between the heart’s lower chambers).

“We saw Dr. Timothy Cordes, and he was phenomenal,” Gray said. “He spent a couple hours with us, drawing diagrams and trying to help us grasp the severity of it. I completely get it now, but I didn’t back then.”

She shudders to think what might have happened if she didn’t seek more answers.

“I think that had we waited, he may have passed away in his sleep.”

Michael had his first of many surgeries the day after he arrived at Riley. It would be the beginning of a long journey in and out of the hospital.

“We’ve been in for every single holiday,” Gray said. “He’s had four pacemakers, he had arrythmias requiring cardioversion – 10 to 12 of those. He was a classic transplant case. They had done everything they could do surgically and with medication to make his heart last, and he was in heart failure.”

TIME FOR A TRANSPLANT

In the spring of 2015, when he was 8 years old, Michael was added to the heart transplant list and entered Riley to wait. On the 100th day of his admission, that heart arrived.

Dr. Mark Turrentine was his surgeon, as he had been for all but one of Michael’s heart procedures.

“We had a 100-day party planned that day, with cupcakes and everything, before we knew about the heart,” Gray said. “So it’s neat that it happened that way.”

Since then, Michael has flourished, she said. He has not had one inpatient stay since those months while he waited for and recovered from his heart transplant.

She would love to share more of his story with his heart donor’s family and hopes some day they might want to learn more. All they do know is that the heart of a little girl from Tennessee is beating in their son, and they are forever grateful.

“His dad and I both wrote a letter (sent via Indiana Donor Network), and we hope that someday we are one of those families that get a letter or something because I would love to know more about her,” Gray said. “I know it’s a gut punch. You don’t know what to say, but yet there’s so much to say.”

“WE ARE VERY LUCKY”

Now a freshman at Scecina Memorial High School, Michael loves video games and hanging out with friends, said his mom, who remarried the year before Michael’s transplant. All of the family has pulled together to support Michael throughout his health journey.

“We are very lucky,” Gray said of her family, her husband Sean’s family and her former husband and his family. “We celebrate birthdays together, go to doctor appointments together.”

She is also thankful for her Riley family, noting that so many of the physicians and technicians they’ve had since shortly after Michael’s birth.

“I think that is so rare, but it’s been so comforting because they have all treated him like he was their child,” she said. “It’s been amazing to have that 100 percent comfort in his care. That comfort, that peace and that total trust.”

Over the 120 days that Michael was hospitalized before and after transplant, the family practically lived at Riley. They had sleepovers with their other kids, movie nights, played board games and celebrated birthdays.

“We wanted life to go on for the other kids and for him,” Gray said.

The Riley team took care of them all through the years.

“Especially in the early years when he was so sick, there were times when I was a mess and completely broke down and there were nurses who sat with me,” she recalled. “They took care of our whole family.”

Michael comes back to Riley monthly for labs and every two months for transplant clinic, when he sees Dr. Darragh. In addition, he has annual heart caths and a stress test.

With Christmas approaching, the family is pulling out a few of their favorite ornaments for the tree, including a couple celebrating organ donation.

On his birthday cake every year, a green ribbon or balloon denoting organ donation honors his donor.

“We always remember her on his birthday,” Gray said.

His transplant anniversary is a little more quiet, she said, because Michael is humble and doesn’t like too much attention.

“He grasps how miraculous it is that he’s still here, but he doesn’t like to talk about it.”

Gray, however, loves to talk about it and is willing to share his story whenever and however it will help.

“Anything I can do to bring awareness to organ donation is what I want to do.”

To learn more about organ donation, click here.

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https://www.rileychildrens.org/connections/podcast-maternity-matters-stork-team-supports-patients-during-high-risk-deliveries PODCAST: Maternity Matters - Stork team supports patients during high-risk deliveries 2021-12-06T08:50:00-05:00 2021-12-06T08:54:03-05:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/maternity-matters-podcast Maternity Matters Podcast 2021-12-06T08:00:00-05:00 2021-12-06T08:57:07-05:00 Listen to recent episodes:

NEW: Stork team supports patients during high-risk deliveries - In the moments after a baby is born in critical condition, seconds matter. The Riley Maternity Tower Stork Team is at the ready to jump into action. This team includes highly trained neonatologists, nurses, respiratory therapists and advanced practice providers like nurse practitioners and physician assistants. They're present for high-risk deliveries that may require a baby to be resuscitated or other critical care strategies. NICU nurse Andrea Purdy is part of the team and shares more about their role in these types of deliveries.

Music therapy helps families find joy in the NICU - For many families in the NICU, music is a creative outlet that allows them to escape the day to day stress of the unit. Riley music therapists are there to guide them through sessions that help parents bond with their newborns. From writing personalized songs to creating meaningful playlists, there are many ways parents can use music to connect with their baby in the NICU. Music therapist Lauren Servos focuses her work on these patients. She chatted with us about the way music therapy sessions allows families to create happy memories even during a difficult time period.

The COVID-19 vaccine and pregnancy - The CDC recently released new data showing pregnant women with symptomatic COVID-19 have a 70 percent increased risk of death. The virus also increases the risk of preterm birth and admission of the baby to the NICU. We chatted with Dr. Lana Dbeibo, medical director of infection prevention at Methodist Hospital, about what care teams are seeing at hospitals around our area. Plus, she shares her personal experience as a mom who had a baby in May of 2020. She discusses her decision to receive the COVID-19 vaccine while breastfeeding.

When it's not just the 'baby blues' after giving birth - For many women, it's common to experience the 'baby blues' in the first couple of weeks after welcoming a new baby. But, there are those who actually experience a perinatal mood disorder such as depression, obsessive compulsive disorder or PTSD. Tracey McInnes, perinatal mood disorders program coordinator for IU Health, explains the signs a mom may need additional support and shares information about the resources available. From mom support groups to professional therapy, Tracey emphasizes that new moms do not have to feel alone as they navigate their mental health journey.

What to keep in mind when you bring baby home from hospital - So, you finally get to take your new baby home -- now what? Newborns do not come with instructions and first time parents may face a lot of uncertainty in those first few days. Dr. Pat Clements, medical director of well newborn care for Riley Children's Health, offers some advice for families about what to monitor once you leave the hospital. He offers tips on how to ensure your newborn is safe and when to call the pediatrician. Plus, he provides some advice on how to handle COVID-19 concerns.

Milk Lab at Riley Hospital for Children - This week, we hear from one of the NICU team members. Beth Dehoff is part of the NICU Nest team and provides support to families in the unit. She explains the ways they are able to provide guidance to families when they first arrive in the NICU, how parents are encouraged to be involved in their baby's care and what NICU parents should keep in mind as they adjust to life in the hospital.

What's it like in the NICU for families? - This week, we hear from one of the NICU team members. Beth Dehoff is part of the NICU Nest team and provides support to families in the unit. She explains the ways they are able to provide guidance to families when they first arrive in the NICU, how parents are encouraged to be involved in their baby's care and what NICU parents should keep in mind as they adjust to life in the hospital.

Riley midwives provide another option for expectant parents - What does care with a midwife look like? Can you only use a midwife if you plan to have an unmedicated delivery? Darla Berry, one of our Riley Children's Health midwives, debunks some myths and explains what midwifery is really all about.

Lactation consultants offer support to breastfeeding moms - In honor of World Breastfeeding Week, a Riley lactation consultant discusses the resources available to moms who decide to breastfeed. Jamie Kreuzman is an International Board Certified Lactation Consultant (IBCLC) who provides support in the hospital to families soon after they welcome their babies. She shares the top obstacles moms face with breastfeeding, options available to families whose babies must go to the NICU and how parents can get some guidance even once they leave the hospital.

Riley genetic counselors provide support to parents - Riley genetics counselors provide support to families before pregnancy and in the months leading up to delivery. Through different types of screenings, these counselors can help parents prepare for any obstacles their baby may have to overcome after birth. The counselors are trained in genetics, biology, statistics and psychology. Their expertise allows them to guide parents as they learn information about their child. This week, one of those counselors explains what it looks like when a parent opts for genetic testing and how the field has advanced in the last couple of decades.

LifeLine respiratory therapist shares what it's like to care for sickest babies - This week, we hear from a LifeLine team member who is part of the crew that transports the sickest babies to Riley Hospital for Children. Cathy Overley is a respiratory therapist with more than 25 years of experience. She opened up about her passion for this role and how the transport team is able to act as an intensive care unit for these babies until they arrive at Riley.

Pregnancy at age 35 and older - Many women are choosing to delay starting a family. And, there is a lot of information out there about what it means to become pregnant later on in life. In this week's episode, we chat with Dr. Amanda Underwood about pregnancy at age 35 and over. Underwood will be the lead laborist for the Riley Maternity Tower. She discusses what steps to take before becoming pregnant, the types of screenings that may be offered and other helpful information.

Postpartum recovery - What happens after you deliver your little one? Two Riley team members break down the process that occurs once mom, baby and support person move to Mother Baby unit.

What really happens when you go into labor? - Two Riley Children's Health labor and delivery team members share details about what laboring moms can expect once they arrive at the hospital. Can you eat while you're in labor? When do can you get an epidural? Are you able to give birth in a bathtub? They answer some of the frequently asked questions plus provide insight into what it' really like to work in this unit.

A new way to care for moms and babies - Riley Children's Health is changing the way mothers and babies are treated in Indiana. The new Riley Maternity and Newborn Health Tower will open this fall. For the first time, women will be delivering babies at Riley. Dr. Carrie Rouse, a maternal fetal medicine physician, chats about this new care model and what it will mean for families.

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https://www.rileychildrens.org/connections/riley-inpatient-rehab-unit-earns-impressive-three-year-accreditation Riley inpatient rehab unit earns impressive three-year accreditation 2021-12-02T09:38:00-05:00 2021-12-02T09:48:28-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

The news broke on the day before Thanksgiving, and it was cause for celebration on the Riley Hospital for Children inpatient rehab unit and in a home not far from the Indianapolis hospital.

For the first time in its history, the pediatric rehab unit earned three-year accreditation status from an international accrediting body, CARF, putting it in a select group of children’s hospitals around the nation and world.

For Kathleen Osborn, pediatric inpatient rehabilitation program manager, it’s a goal she and her team have been working toward for years. For Justin and Shanda Grounds of rural Morgan County, it is a tribute to the people who helped their son become independent again after a devastating injury left him paralyzed.

Osborn began working as an occupational therapist at IU Health Methodist Hospital in 2007, back when the pediatric rehab unit was housed there. It moved to Riley in 2011.

“They were talking about getting accreditation since before I was there, so it’s been a long conversation,” Osborn said.

When she moved over to Riley as manager three years ago, she was determined that the time for talking was over.

“We’re going to do it,” she said. “And it took every bit of those three years to get where we needed to go.”

Many of the processes and procedures were already in place, but it was a massive undertaking to document everything and be sure everyone was on the same page. That includes not only patient-centered goals but also incorporating caregivers into treatment goals.

None of it would have been possible without buy-in from the entire team and others throughout the system, said Osborn, expressing gratitude for the collaborative spirit.

“It required everyone, and that team is beyond the medical and therapy team,” she said. “It’s social work, child life, creative arts and many others who supported us system-wide.”

The achievement represents the highest level of accreditation that can be given to an organization and shows Riley’s substantial conformance to CARF standards, she added.

In its report, the accrediting body said the Riley rehab unit has demonstrated from every aspect of operations that it is fully committed to the care and well-being of patients, that the leadership team is experienced and actively involved in all aspects of the program, and that the team has established a culture of openness, trust and respect.

Those served in the program “benefit from the commitment, expertise and enthusiasm of engaged physicians, rehabilitation leadership and frontline staff, as well as ancillary supporting departments that promote and provide quality outcome-oriented services,” the report said.

An organization receiving a three-year accreditation has put itself through a rigorous peer review process. It has demonstrated to a team of surveyors during an on-site visit its commitment to offering programs and services that are measurable, accountable and of the highest quality.

That’s what so many patients and families have found over the years. Whether it’s 16-year-old Anthony Ingram challenging his therapists to a race in what they dubbed the Anthony Olympics, or Lucas Grounds getting a tour of Lucas Oil Stadium before his discharge, their stories don’t end with their injuries.

Lucas, who was critically injured in a dirt bike accident last year, spent 61 days in the hospital, much of that time on the rehab unit after surgery.

“The care he received at Riley was amazing,” Shanda Grounds said. “They had goals for him that I believed at first were going to be too lofty … but they eased my fears and talked me through it all.”

She and her husband, Justin, have a special place in their hearts for the physical and occupational therapists who worked with Lucas – namely Lindsay Schaefer and Whitney Kozlowski – who they said consistently went above and beyond to help their son reach an impressive level of independence.

“I met those people during the worst time of my life,” Shanda said. “It’s something a parent never wants to experience, but the entire time we were there, and still almost a year later, he has not had one bad day. it blows my mind.”

A lot of that is due to Lucas’ personality, but it’s also a result of the team’s compassionate yet demanding approach to therapy, she said.

“They are there to help you learn your new normal, to help you realize this is not the end of your life, this is something different and new. They treated us not like a number on the chart. They treated Lucas like a family member.”

Because of the dedication of the rehab team and of Lucas and his family, the high school junior has excelled since being discharged last February.

Read more about Lucas and his life since the accident in a story later this month.

File photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/after-runners-collapse-parents-praise-angel-nurses-physicians-by-her-side After runner’s collapse, parents praise “angel nurses,” physicians by her side 2021-12-01T12:32:00-05:00 2021-12-01T16:19:50-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

It was all Janet Mann could do to keep from running onto the course.

Her daughter had collapsed just yards from the finish line of a cross-country sectional race at Mount Vernon High School in Fortville. Emma Mann, a senior at New Palestine High School, tried to get up twice and fell again and again.

She was leading that race, her mom said. Even a broken leg wouldn’t have stopped her. But something had. Another runner, Ella DesJean, a student at Franklin Central High School, came upon her and stopped to encourage her. Helping her up, though, would have been grounds for disqualification.

That’s why Janet Mann held back too. She didn’t want to see her daughter disqualified after working so hard all season. But she knew something was wrong.

Emma has battled anemia since her freshman year and sees Dr. Allison Yancy in the hematology clinic at Riley Hospital for Children. She had recently received an iron infusion, though, so the fatigue her parents began noticing a few days before the race puzzled them.

EARLIER IN THE RACE

“She doesn’t look right,” Mann’s husband, Jeff, had said about halfway through the sectional competition. “She looks really tired.”

But still, Emma kept running.

The 17-year-old would tell them later that she knew something was wrong at the 2-kilometer mark in the 5K race. She told herself she could power through to the end.

She almost made it.

Mann, who was hobbled by a broken ankle that warm October day, decided to head to the finish line with her husband so they could greet their daughter at the end of the race.

Emma was leading when she came up on the last stretch. She looked a little wobbly, her mom remembers. At first, her parents thought her leg was hurting her. Within seconds, she was down.

“There wasn’t another runner anywhere around her,” Mann recalled. “She just went down. She started to get back up and fell again.”

A few seconds later, Ella DesJean came across her competitor on the ground and stopped.

“She’s an amazing kid,” Mann said of the FC runner. “She said, ‘Emma, come on, get up. You’re so close. Let’s finish together.’”

Meanwhile, Mann wanted to go under the flags lining the course to get to her daughter, but she held back for fear of Emma losing a shot at finishing the race.

“That was horrendous as a mom,” she said.

ROLLED TO THE FINISH

Emma didn’t have the strength to stand, and Ella was prevented by the rules from helping her up. Eventually, Emma rolled over the finish line and closed her eyes, her mom said.

That’s when Mann raced to her side and cradled her daughter, who was pale and weak, just as another woman came to help. Identifying herself as a nurse, the woman checked Emma’s vitals as someone called for an ambulance. Her pulse was rapid, so they worked to cool her down and reassure her before the ambulance arrived to take her to IU Health Saxony Hospital.

Emma would later be transferred to Riley Hospital after doctors identified a potential cardiac issue. Now under the care of Dr. Megan Wilde, a Riley cardiologist, she continues to undergo tests to monitor her heart function.

A Riley physician told her that first night that she was lucky. She had experienced just the sort of irregular heart rhythm that can cause sudden cardiac arrest.

She didn’t feel lucky in the moment, Mann said. Emma pleaded with the doctors to speed up the testing so she could be ready to run again – to compete at state. But after failing a stress test, it became obvious that she was not going to be running for a while.

That was the first time she cried.

LOOK FOR THE HELPERS

In the chaos after the race, Mann told the nurse by her side that she wanted to be sure someone thanked the FC runner for her kindness.

“I’ll be sure to tell her,” Mann recalls her saying. “I’m her mother.”

Mann was blown away by that simple statement.

“That girl has more character in her little body than a lot of adults do,” she said.

The nurse is Stacy DesJean, a former Riley nurse who says the compassion her daughter displayed comes naturally to her.

“She is a caregiver and is always looking out for others,” DesJean said. “Especially this last year has made her aware of other people’s situations.”

That’s because a year ago, Ella’s little brother, Will, was diagnosed with cancer and she has helped take care of him. Will, who was featured in another Riley story in October, completed his treatment and continues to regain his strength.

Health scares have brought the two high school runners from competing schools together, and they have forged a friendship. Emma presented Ella with the IHSAA Face of Sportsmanship pin at her cross-country practice earlier this fall.

Recently, Emma invited Ella to attend a breakfast for Camp Little Red Door, a program for pediatric cancer patients. For years, Emma has provided Peace Bears to camp participants and others, and she recently presented one to Will.

“Emma loves to help,” Mann said.

So, it takes a special kind of grace to receive help when the tables are turned. Emma is learning how to do both.

Until she gets clearance to be active – running, swimming and biking – she is focused on serving others. Her Peace Bear project is one way to spread joy, and she is working on a service project through school to get more AEDs (automated external defibrillators) into Hancock County schools. In addition, she continues to volunteer weekly with a special-needs choir at Butler University.

“Watching your child collapse is the worst moment you can imagine,” Mann said. “But Mr. Rogers is famously quoted as saying, ‘Look for the helpers.’ We had helpers at every turn,” she added.

GRATEFUL HEARTS

As her daughter continues to be monitored by her Riley team and awaits a cardiac MRI later this month, Janet Mann wants to put the focus back on all the people who have helped Emma these past two months – her friends and teammates, coaches and all the people at Riley involved in her care.

“I can’t even tell you how wonderful they’ve been,” Mann said. “When you go to Riley, you have no idea, in a circumstance like ours, how bad it is. And when you walk in the door, they treat you as if you’re the only person there. There’s just a comfort there that is a little different.”

That is all the more impressive when you consider the current pressures in healthcare, she said.

“The hospital has surely been understaffed at times, yet they continue to operate with grace and love while providing unbelievable care to children and families during their most vulnerable times,” she said.

“Riley does an amazing job of rising above the challenges to help patients feel safe, secure and cared for completely. In a situation that has been plagued by uncertainty, one thing is certain: Emma has been cared for in one of the nation’s best children’s hospitals right here at home, and we should never take that for granted,” Mann said.

“On the contrary, we should express our gratitude to those in healthcare who are likely overworked right now but certainly never show it to families who are feeling overwhelmed and afraid.”

“ANGEL NURSES” AND PHYSICIANS

She praises all of the “angel nurses” at Riley and singles out Dr. Wilde and Dr. Yancy for always going the extra mile and being generous with their time, helping Emma and her parents talk things through and feel confident they are on the right path.

“Both are amazing doctors and even better people,” she said. “It’s the human element that takes the care to the next level.”

Dr. Wilde describes the Manns as an “absolutely lovely family” who have been patient as doctors work to tease out any underlying illness in Emma that would have precipitated her symptoms. Initial tests were inconclusive.

“They have been very understanding as we have needed to tailor our treatment plan to Emma’s needs and symptoms,” the physician said. “This is a process, and we are going to learn it together. We remain hopeful that we will be able to get her to a place where she can do those things she loves so much. Time will hopefully allow us to better understand what her options are.”

In this season of giving, Mann wants to give thanks for all the helpers – at Riley and beyond – for their compassion, their kindness and their care.

That includes the IHSAA official who was officiating the race when Emma collapsed. After her discharge from Riley, he presented her with an IHSAA hat and a lap bell with her name and the race date engraved on it.

This is not how Emma or her parents expected her senior year to go. The teen, who wants to be a special education teacher, is still hoping to run in college on scholarship. Having to cheer from the sidelines while her teammates continued running this year hasn’t been easy, but she has handled it with grace, her mom said.

“Sometimes your parenting is revealed in the strangest spaces,” Mann said. “You hope you raise your kids to be graceful, resilient, hopeful and positive. You hope you don’t have to see it in the worst circumstances, but when you do, it does feel good.

“She’s going to be OK in life.”

Photos submitted and by Janet Mann

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https://www.rileychildrens.org/connections/bringing-cheer-to-kids-all-year Bringing cheer to kids all year 2021-11-29T13:38:00-05:00 2021-11-29T13:44:12-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Annastaj’sha Taylor has been a Riley kid her entire life, so the 15-year-old has received her share of toys and crafts, courtesy of the Riley Cheer Guild, during her many hospital stays.

Diagnosed with a gastrointestinal disorder shortly after birth, Annastaj’sha is well-known on the ninth floor of Riley Hospital for Children, where she spent Thanksgiving last week.

She might not have been thrilled to be back in the hospital, but the team on 9 East was overjoyed to see her, according to her grandmother, Fredia Taylor, who works in nutrition services at IU Health North Hospital.

“She gets along really well with everyone there … unless you’re trying to stick her,” Taylor said, with a chuckle.

Thanks to Riley’s Child Life team, which helps to keep patients’ spirits up by distributing LEGOs, Barbie dolls, UNO cards, art supplies, crafts and other items from the Toy Room at the hospital, the teen has plenty to distract her from IVs and blood draws.

A sophomore at Crispus Attucks Medical Magnet School, Annastaj’sha hopes to pursue a medical career after graduation, Taylor said, and ironically is taking a class now in phlebotomy – learning how to draw blood.

The Riley Cheer Guild depends on the generosity of donors to keep its Toy Room stocked with gifts for all ages. Check out its Wish List here.

All donations must be shipped to Riley Cheer Guild, 705 Riley Hospital Drive, RM 4510, Indianapolis IN 46202, or scheduled in advance for drop-off by calling 317-944-8705.

In addition, an anonymous friend of the Riley Cheer Guild will match all Giving Tuesday (Nov. 30) financial donations up to $1,000.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/evs-team-supports-riley-food-pantry EVS team supports Riley Food Pantry 2021-11-22T14:35:00-05:00 2021-11-22T14:39:53-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Kat Winton, Riley Hospital social worker and coordinator of the Riley Food Pantry, is giving thanks this week and every week for the generosity of donors and for the efforts of the three ladies pictured here to support the pantry.

EVS team members Bernice Powell, Michelle Williams and Dorothy Andrews can be counted on every Monday to check in with Winton to start the week off right.

“My Monday mornings in the pantry wouldn’t be the same without them checking in on me,” Winton said. “Not only do I get to enjoy time with them, but they support their Riley colleagues by walking them through the pantry, refilling the team member Snack Closet and ensuring that the pantry’s donation bins have been checked.

“I am so very appreciative of them for taking time out of their busy day to support their fellow team members.”

The Riley Food Pantry, which opened last year as a response to the COVID-19 pandemic, is on the first floor of the Downtown hospital, just down the hall from the Ronald McDonald House, Room 1511P.

The pantry has shortened holiday hours this week: It will be open Tuesday from 7 to 8 a.m. and 3:30 to 4:30 p.m. for team members. Patient families may visit by referral between 9 a.m. and 3 p.m. Tuesday, and between 9 a.m. and 1 p.m. Wednesday. The pantry will be closed Thursday and Friday this week.

To donate to the Riley Food Pantry, visit the RFP Amazon Wish List.

To give a shout out to a team member or department you think is worthy of recognition, email mgilmer1@iuhealth.org.

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https://www.rileychildrens.org/connections/former-iu-athlete-brings-joy-pride-to-riley-project Former IU athlete brings joy, pride to Riley project 2021-11-21T16:22:00-05:00 2021-11-21T16:36:48-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Delroy Baker Jr. is sitting in the atrium of the new Riley Children’s Health Maternity Tower. The glass elevators bop up and down behind him as he soaks up the sense of achievement that comes from helping open the tower.

Baker, a project coordinator with the Design and Construction team at IU Health, came late to the party, actually. He joined IU Health in August and was immediately thrust into the role of outfitting the new tower with the equipment and supplies needed for opening day.

That big day was delayed from September to November due to COVID-19, giving him more time to feel a sense of ownership in the new wing before moving on to the next building project.

“It will be sad to say goodbye to my first baby, so to speak,” he joked, as he considered the task of wrapping up the project and leaving Riley.

The expansive addition to Riley Hospital for Children focuses on new moms and their babies, bringing expert care for both under one roof.

For Baker, it’s part dream, part destiny how he came to be involved.

A first-generation American, he was born to Jamaican parents in Florida, where he spent his formative years. Those years were troubled by a health condition that had him and his mom in and out of hospitals.

The petit mal seizures he suffered as a child would strike without warning – he’d be crossing the street to the school bus stop and suddenly stop in place. Sometimes he would walk into walls. Brief, sudden lapses of attention were how they presented.

“I spent a lot of time at hospitals in Florida in the early 2000s,” he said. “It feels like forever ago to me when I spent nights at the hospital getting all the ice cream and video games I could stand.”

He took medication for a while, but the seizures eventually disappeared. The experience, however, shaped him.

He always knew he wanted to do something to help kids. Recruited to play football at Indiana University, the 6-foot-6 offensive lineman volunteered at Camp Riley and other places as a student athlete.

He graduated from IU with a degree in psychology and went into social work for a few years, before deciding he needed a career change.

“I have a natural affinity for people and felt I could use my degree in any field,” he said.

When he interviewed for the project coordinator role at IU Health, he was immediately drawn to the culture.

“They explained the IU Health values, and I’m like, ‘sign me up,’” he laughed.

Being assigned to the Riley Maternity Tower project in his first week on the job was an honor, said Baker, who is planning a July wedding with his fiancée, Madeleine Vala.

“There’s no better way to kick off my career here than with this project. I have a heart to help people, and I’m drawn to working with kids and parents.”

What are the odds, he thought, that he would once again be in a hospital, this time as an adult walking past neurology every day and seeing kids and parents going in for appointments, just as he did as a child.

In a social media post after the tower opened earlier this month, Baker wrote about how he feels connected to the children he sees every day at Riley, kids whose smiles persist despite the challenges they may face.

“I was once in their shoes, spending many days with my mother in and out of hospitals, countless trips to the doctors’ offices and testing to determine what was the cause of the seizures I was experiencing as a child.”

While most children born in the new Riley Maternity Tower won’t have those experiences, they will have access to the best specialists immediately, in the same building, should they require specialized treatment, he said, concluding with: “Indianapolis families, here’s to the best care designed for you!”

Baker has made an impression on the team in the new tower, according to both Nicole Toole, director of maternity and newborn health, and Paula Shaner, clinical program manager.

“Delroy is the quiet strength of the Riley Maternity project,” Shaner said. “He listens intently and performs so efficiently that I’m in awe.”

Quick with a smile and a helping hand, she added, “he is smart, kind, funny and has a gigantic heart.”

And about those IU Health values? He lives them, she said, displaying teamwork, compassion and purpose in everything he does and delivering excellence in his work.

“Strength, determination, commitment and joy are the things that Delroy has brought to this project. I am so excited to watch him do great things for IU Health.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/a-heartwarming-reunion-in-the-or A heartwarming reunion in the OR 2021-11-17T09:48:00-05:00 2021-11-17T09:57:53-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Keleigh Sims’ history with Riley Hospital for Children goes back 23 years, when she was an infant and needed lifesaving heart surgery.

She returned to the operating room recently, not as a patient but as an OR nurse, a role she recently accepted after working as a bedside nurse on the heart floor.

Now imagine her surprise last week to find out that one of the surgeons joining her that day in the OR would be none other than the esteemed Dr. John Brown, who retired from full-time work last year but still likes to come in to get his hands dirty, so to speak.

Dr. Mark Rodefeld told the OR crew about 15 minutes before the surgery began that Dr. Brown would be joining to assist.

Sims couldn’t believe her good fortune. When Dr. Brown came in dressed in scrubs, she introduced herself again from behind the mask, reminding him that he had operated on her for a rare combination of heart abnormalities called scimitar syndrome. She also was part of a research study he did on the syndrome.

He was as stunned as she was, and after chatting for a minute, he suggested they get a picture.

“He airdropped the photo to me and said, ‘you’ve got to send this to your mom,’” which of course she did.

“Just a casual Wednesday in the OR doing heart surgery with the surgeon who did my heart surgeries,” she said. “I’m just in awe that I get the chance to do what I do every day.”

Seeing a world-class surgeon like Dr. Brown take on an assisting role in the OR was amazing to see as well, Sims said.

“I think he just genuinely loves it. He’s holding the heart while Dr. Rodefeld is sewing a patch. He is such an incredible human.”

It takes a big person to assist after 40 years of leading in the OR, Sims said, but for Dr. Brown, the energy of the operating room and helping patients is the draw.

“He is still very much involved in the CV surgical world. It’s crazy how talented he is and how much of an impact he’s had. He saves lives, but he’s so normal.”

For Sims, working in the OR has been humbling.

“It’s like a whole different world down there,” she said. “Seeing what they do is incredible.”

She knew when she applied for and got a spot on the CV operating room team that she would likely be called in to work unplanned shifts. But she took what her mom said to heart.

“How mad could you be if it’s Christmas Day and you have to go in for a heart transplant,” her mom asked her. “That’s an honor.”

Sims agrees.

“My perspective is so different because I’ve been on both sides,” she said. “Just seeing how much these surgeons care, it’s humbling to be in the room.”

From heart patient to bedside nurse in the heart center to operating room nurse working alongside the surgeon who saved her – she really has come full circle.

“It’s overwhelming. It’s just so cool.”

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https://www.rileychildrens.org/connections/every-dog-has-its-day-at-riley Every dog has its day at Riley 2021-11-16T12:25:00-05:00 2021-11-16T12:43:36-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

They’re back!

Riley Hospital for Children’s most popular guests have returned to the hospital, ready to snuggle up to sick kids and weary staff.

Pet therapy was put on “paws” 20 months ago when the COVID-19 pandemic forced Riley to restrict access for the safety of patients.

But those fluffy fur buddies have finally begun to return, much to the delight of kids, parents and team members.

Last week saw the return of Maddie and Panda, two pups who are opposite in size but identical in their love for children.

Maddie is an 8-year-old Coton de Tulear, her white coat as soft as cotton (“coton” in French). Her human is Jane Bultman, a former Riley kid herself.

Both are tickled to be back in the children’s hospital after a long period of waiting.

“We onboarded just before COVID,” Bultman said.

In fact, they had just one visit under their belt before the shutdown. Today’s visit is their second since the doors reopened to four-legged friends.

“Maddie is so excited to be here. She knows we’re at Riley when we come into the parking garage.”

Maddie, who weighs about 12 pounds, started training with Pet Partners to be a therapy dog at 6 months. Every two years, she gets re-evaluated.

“I thought it was a great full-circle way to give back,” Bultman said about bringing her pup to Riley. “I love sharing my dog with people, and the kids just light up. For parents, I feel it’s a nice diversion, it brings out something joyful.”

Kim Ziegler, Riley pet therapy coordinator, is thrilled to let the dogs back in.

“It was a struggle,” she said of COVID. “Everything changed. This helps bring a little normalcy back.”

There are about a dozen therapy dogs who visit Riley. They take turns, generally coming once or twice a month for a couple of hours at a time.

Just the sight of them padding through the hallways of a unit makes people smile, and that alone is worth it. Though team members are not supposed to pet the dogs in the hallway, they have a chance after the pups visit patients to get some snuggles in a conference room.

Ava Leal is excited to see Maddie come through the door of her room on the ninth floor.

“Hi Maddie,” Ava says, grinning as the little dog settles into a spot on top of a cloth on Ava’s bed.

“She’s sniffing me. I love her,” Ava says, watching as Maddie does a trick near the bed. “That’s a good girl.”

Maddie and her therapy dog peers are social animals, so not being able to visit for so long during COVID was really hard, Bultman said.

All that is forgotten now as Maddie enjoys the attention of people big and small at the hospital.

The next day is Panda’s chance to greet fans. The 165-pound Newfoundland is named for her black and white coloring, and you can’t miss her rounding a corner.

In fact, it’s a parade led by Ziegler, pulling a Riley wagon packed with cloths, sanitizer and cards featuring the dog of the day. Behind Ziegler is 5-year-old Panda wearing a Thanksgiving headband and waddling beside her human, Vicki Reiskamp. Team members stop to smile and greet the affable Newfie.

“That just made my day,” one nurse said.

Like plenty of people who were in quarantine in the early days of the pandemic, Panda put on some COVID weight, Reiskamp said, so being out and about again is good for her health and her disposition.

Nothing pleases the big pup more than a good belly rub, and she’ll give you a high five in exchange for a treat.

Her first stop this day is to see little Knox Van Ruler, whose mom remembers Panda and Reiskamp from a previous visit.

“We have Panda’s card on our refrigerator,” she said, as her little redhead reached out to stroke Panda’s soft fur coat.

During COVID, the family celebrated Knox’ second birthday with a puppy dog parade. Friends, family and neighbors drove by their house with their dogs waving from the car windows.

After a couple of other patient visits, Panda stops in a conference room, where she is the main attraction before a team huddle.

It seems everyone needs a little puppy love.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/she-was-the-easiest-baby-my-only-baby “She was the easiest baby, my only baby” 2021-11-14T17:03:00-05:00 2021-11-14T17:27:19-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Sirena Nieves remembers her daughter’s smile, her laugh and her fight.

She remembers the joy she brought to those around her, in spite of the pain she knew in her short life.

And she remembers the exact moment her little girl passed away: 9:48 a.m. Tuesday, April 28, 2020.

Elliana Marie Rose Wright was just 15 months old when she died at Riley Hospital for Children after suffering complications related to multiple congenital heart defects.

She’s been gone now longer than she was on this Earth, but her sweet memory is very much alive in the halls of the cardiovascular intensive care unit at Riley, where she lived for so many months, celebrating Thanksgiving, Christmas, her birthday and all the special days in between.

“She was always smiling, always happy,” Nieves said. “She was the easiest baby, my only baby.”

The morning Elliana died, Nieves remembers how she had gone outside to get some fresh air. In that early morning darkness, she called out to God to take care of her child, who was running out of fight after multiple setbacks.

“Elli brought me really close to God, and I asked him to heal her completely, and if that meant she has to go upstairs (to heaven), she has to go upstairs,” Nieves said.

A few hours later, Elliana drew her last breath despite lifesaving measures taken by the team in her room. Slowly, quietly, they disconnected her from the monitors and gently placed her in her mother’s arms.

“I held her all day,” Nieves recalled. I don’t think I left Riley until about 5 or 6 o’clock. I had all of the Riley nurses who loved her there. They were absolutely amazing. They just loved her so much.”

HONORING A CHILD’S MEMORY

Family nurse practitioner Erica Vinson cared for Elliana during the eight months she spent at Riley before she died. Vinson, who worked on a medical-surgical unit before coming to the CVICU, didn’t have a lot of experience with patients passing away.

The little girl’s death hit her and many of her colleagues hard. The unit sent flowers, and Vinson and some of the team went up to northern Indiana for the funeral. But Vinson wanted to do more – not just for Elliana and her family, but for all of the patients who don’t get to go home.

“We always would send a card a couple weeks afterward that we all would sign, and I think that was very heartfelt, but I wanted to do more,” she said.

And in order to do more, someone had to be willing to take on that responsibility. That someone was her in those early days. But she’s been joined by a team of dedicated nurses and staff who want families to know how much their child has meant to their Riley team.

With input from Dr. Larry Markham, division chief of pediatric cardiology at Riley, other team members, the Riley Children’s Foundation and Mended Little Hearts, a bereavement committee was formed in the Heart Center last year. But it took until this year for the council to get its legs under it.

Carrie Davison, clinical manager for CVICU, is proud of the heart that her team shows, especially during difficult times.

“These are things that make nursing feel healthier when we know we are taking care of each other and we know we have a process in place to help grieving families,” Davison said.

TREASURED KEEPSAKES

Seeing Vinson and other members of Elliana’s care team, both from CVICU and the step-down unit, at her funeral last year meant a lot to Nieves. A card they brought with them contained notes from many nurses sharing how much her daughter had impacted them, she said.

Later, she received a “heartbeat plaque” with Elliana’s name and heartbeat image engraved on it.

“To go from watching monitors all the time and seeing the heartbeat in the hospital, then to lose your child but see their heartbeat in that way is very special,” she said. “That plaque means so much.”

She keeps it in a curio cabinet at home, along with her baby’s favorite stuffed animals, rattles, superhero cape and other treasures from Elliana’s life.

For Nieves, maintaining that connection with her daughter’s Riley team has given her strength to keep moving forward.

“I miss Riley so much; it was our home for so long,” she said, recalling how one doctor referred to Elliana as the “boss baby” of the unit.

“She would be in her exersaucer in her room, and she had to have attention from everybody in the hallway. If the nurses had a hard day, they would come to Elli’s room, and she would help them get through.”

“THEY HAD AN IMPACT ON US”

That bond is something the bereavement committee wants to honor, not just for one patient but for any Riley heart patient who dies.

“We want to let families know that however long or short their child’s time was on the unit, they had an impact on us and are not forgotten,” said Vinson, who funded the initial plaques herself before a donor provided funding through the Riley Children’s Foundation.

The committee also sold T-shirts and snacks in the breakroom to pay for postage and other expenses. They recently published a brochure that allows parents to opt in or out of the bereavement services, which include cards sent on anniversaries and other special days, in addition to the heartbeat plaques.

“People who do not respond are considered to opt out,” Vinson said. “We want it to be therapeutic, not triggering. If it’s triggering, we want them to be able to throw the brochure in the trash and not deal with it.”

Nieves received her brochure recently and keeps it in her curio cabinet with Elliana’s other mementoes.

“I thank Erica so much,” said Nieves, who appreciates that her baby girl is not forgotten. “So often with Riley stories, the baby gets better and goes home, and this story is a lot different.”

What’s not different is the love that was part of her young life.

And honoring that life is important to Vinson and her team.

“I always felt when it comes to end of life, I’m not very good in the moment in those situations,” the nurse practitioner said. “I feel like I don’t say the right things or provide enough support,” she added.

“But I feel it so deeply in my soul. When I leave, I cry, and it hurts that these families are dealing with this and I pray for them every single day. I feel it so strongly, but I don’t feel like I know how to express it or show it, and this is my way of doing that.”

RILEY WAGON FOR ELLI

Nieves sold bracelets in memory of her daughter and raised more than $2,500, enough to fund a Riley wagon through RCF in June. Now, when they see the #ElliStrong wagon around the hospital, nurses take a picture and send it to Nieves.

One day, the grieving mom was lost in a memory of her little girl, and just then her phone dinged. It was a message from a nurse sending her a photo of Elli’s wagon.

“Elli always lets me know that she’s here.”

This will be the second holiday season without her daughter, but Nieves still counts her blessings.

“I am grateful that I got one of each holiday with her. And the support I’ve gotten from Riley has been absolutely amazing.”

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https://www.rileychildrens.org/connections/his-heart-is-special-and-so-is-he His heart is special and so is he 2021-11-11T09:11:00-05:00 2021-11-11T09:28:52-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Jed and Dorie Medler were anxious. Who wouldn’t be? At that moment, their little boy was undergoing open-heart surgery down the hall from where they waited at Riley Hospital for Children.

“He’s the strong one. I’m the emotional one,” Dorie said of her husband, who was explaining in pretty good detail what Dr. Jeremy Herrmann was doing to fix their son’s heart on that Tuesday morning two weeks ago.

“Dr. Herrmann is going to build a wall inside his heart with a little hole in the center to equalize pressure between the chambers, then reroute the blood flow,” Jed said.

Josiah Medler was born Nov. 6, 2018, with multiple heart defects – dextrocardia, pulmonary atresia and double inlet left ventricle with transposition of the great arteries.

As renowned and now retired Riley heart surgeon Dr. John Brown put it to the couple when he met them before Josiah’s birth: “Your baby has a strong beating heart but some very bad plumbing that we have to fix.”

THREE STAGES OF REPAIR

Josiah is the first child for Jed and Dorie, who live in southern Illinois, and he has been a regular at Riley in his three years of life. When they are not at Riley, the family has received constant support from the hospital’s pediatric cardiology home-monitoring program, headed by nurse practitioner Dana Hartman.

On this day, Josiah was having the last of a three-stage surgery to repair his heart.

Up until now, Dr. Brown was the one taking the lead on the surgeries, with Dr. Herrmann at his side. In the past three years, the Medlers have gotten to know and trust Dr. Herrmann just like they did Dr. Brown.

“It’s strange with Dr. Brown not being here, but with Dr. Herrmann being by his side and participating in Josiah’s procedures, I have no concern at all,” Dorie said, pausing while she wrote a letter to her son to help capture some of her feelings from this day.

“I am so happy he’s here for these kids. The bedside manner, the intelligence and the way he genuinely cares about the parents and the kids makes him even more unique,” she said. “They chose the perfect person to fill the shoes of Dr. Brown.”

“YOU GOTTA BE BRAVE”

Still, sending your toddler into surgery is tough for any parent.

“He did OK this morning,” Dorie said, though Jed reminded her that Josiah yelled for him as he clutched his stuffed Spiderman when the surgery team was walking him back to surgery.

“We explained to him that they are going to give you a mask that will smell like strawberries – he remembers that from the last time – and they’re going to put Paw Patrol on, and you are going to take a nap,” Dorie said.

“When you wake up, you’re going to have some ouchies, but you just sleep until you feel better. You gotta be brave,” she told him.

“Brave?” he replied, shakily.

It will come as no surprise to hear that Josiah was not the only one shedding tears that morning.

“He’s the bravest little thing I’ve ever seen,” his mom said. “These kids are miracles. They’re stronger than I am.”

As she and her husband waited for word from the surgery team, other family members, who weren’t able to come up on the floor, stood vigil outside the hospital, keeping in close contact with Jed and Dorie.

MEMORIES OF LOSS

Dorie lost her dad a year ago, and grief still washes over her in waves. She remembers how he was there for her after Josiah’s birth, when she slipped into depression and did not think she would ever bring her baby boy home.

“It was a very rough time, and we were so young,” she said. “But you do eventually leave, and you do go home. We’ve made so many friends here at Riley.”

A former Riley kid herself as a teen, Dorie met a little boy in the elevator at the hospital the other day who was decked out in “Avengers” gear with his mom by his side. In conversation, she learned that the boy was being treated for Chiari malformation, the same thing she had as a youth.

When the boy told her he was scared, she told him she had the same surgery when she was a kid, and it worked.

“You be brave. You’ll be alright,” she told him.

“I have never met anyone else with that condition until that elevator ride,” she said, still stunned.

That’s why even though it’s hard to come to the hospital, “it’s amazing at the same time,” she said. “These people here are saving all these kids and I’m so glad. Years ago, they wouldn’t have survived.”

SURGERY IS COMPLETE

Hours later, Josiah was out of surgery and in recovery. Later that day, he was moved to the cardiovascular intensive care unit at Riley to continue his recovery.

Dr. Herrmann explained that his young patient was born with his heart underdeveloped on the right side, so the three surgeries performed in the first three years of life help improve its function. The most recent procedure Josiah had is called the Fontan, during which the surgeon reroutes blood flow from the lower body to the lungs by connecting the inferior vena cava to the pulmonary artery.

Josiah’s case was a little trickier, Dr. Herrmann said, because the boy’s heart is rotated in the opposite position, but all went well.

When we caught up with the family three days later, Josiah was riding a pink buggy outside his room with all of his wires and monitors stuffed into the car’s front end.

The boy with the beautiful smile was not smiling then – he was a little groggy from his medications – but to see him up and about three days post-op thrilled his parents and his care team.

“I’m really impressed with how well he has adapted after surgery,” Jed said. “This little guy takes it like a champ.”

TO INFINITY AND BEYOND

Josiah had a special visitor on the Friday before Halloween. Buzz Lightyear, aka Gil Peri, new president of Riley Children’s Health, popped in to see the little boy when he heard about his love for “Toy Story.”

Josiah was excited to see Buzz, but he did have one question: “Where’s Woody?”

As for what’s next in Josiah’s health journey, Dr. Herrmann said he may do well for several decades, but a heart transplant is a possibility at some point due to the long-term effects of the Fontan circulation.

“We are still learning how these patients fare over time, and there are many factors that can affect that possibility. Hopefully, he can continue to do well and get back to being a kid and riding his Big Wheel at home.”

And that’s exactly what Josiah did.

On Halloween, five days after his surgery and feeling back to his old self, Josiah said peace out to Riley and returned home to find some new wheels waiting for him – a Spiderman Big Wheel.

Just what the doctor ordered.

Previous stories:

“Being a heart parent is a privilege, but sometimes it feels like a curse” - In honor of Congenital Heart Defect Awareness Week, one young mom pours out her feelings about the ups and downs of raising a heart baby.

Mending tiny broken hearts - Seven-month-old Josiah Medler charms Dr. Brown, Dr. Herrmann and the entire heart team.

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https://www.rileychildrens.org/connections/a-little-poke-a-big-relief A little poke, a big relief 2021-11-10T07:57:00-05:00 2021-11-30T10:40:54-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

The kids felt victorious. Their parents felt relieved. And all it took was a shot in the arm.

IU Health leaders, physicians and other team members lined up to get their kids vaccinated against the COVID-19 virus over the past few days.

The smaller-dose Pfizer vaccine was approved for children ages 5-11 last week. Riley Hospital for Children at IU Health and its primary care offices received their first allotments of the vaccine mid-week.

“There’s nothing more important than my kids’ health,” Riley Children’s Health President Gil Peri said as he held his son Ari’s hand before the 7-year-old received his shot. “We want to do our part to end the pandemic. We feel good to know that we are giving them every chance to stay healthy by getting them vaccinated.”

Nearby, Dr. Sarah Bosslet was joined by her son Bram, 7, as he got his first shot. Dr. Bosslet, a pediatrician at Riley’s Georgetown Road primary care offices, and her husband, Dr. Gabriel Bosslet, have four children, all of whom have now been vaccinated.

“All of my kids, as soon as they’ve been able to get the vaccine, they want it,” she said. “They just want life back to normal.”

The two-part vaccine for younger kids, which is one-third the dose of the adult Pfizer vaccine, is impressive in its efficacy, she said.

“It works so well with so few side effects, I’m actually extremely excited … about its ability to protect us.”

Alison Isenhour works at IU Health Methodist Hospital and has two kids, 16-year-old Adam and 9-year-old Lauren. Adam, a cancer survivor, was vaccinated in the spring. Lauren’s turn finally came Monday at a Walgreen’s in Brownsburg.

She chose to get her shot in her left arm and sailed through the brief appointment, Isenhour said, grateful that her entire family is now vaccinated and that Adam is more protected.

“Lauren told the lady at the clinic that now she could have other fully vaccinated kids to our home. She’s never been able to go to or have friends to the house because of cancer, then COVID,” Isenhour said.

Bram, Ari and Lauren are among 28 million children in the United States newly eligible for the vaccine to prevent the most serious cases of COVID, a disease that has killed more than 755,000 people in the U.S. and 5 million around the world.

While the virus is considerably less deadly in children (700-plus youth in the country have died), that reality does nothing to ease the pain of a parent who has lost their child to the disease or who has seen a child suffer its sometimes debilitating effects.

Bram Bosslet was eager to join his older siblings in getting the protection the vaccine offers, his mom said, noting he is a very social child and is ready to return to his normal activities.

Dr. James Wood, an infectious disease specialist at Riley, was able to get an appointment for his two children, ages 5 and 7, at the Fishers Health Department last Wednesday, the first day the vaccine was available.

“From my standpoint, it is the best thing we can do for our kids to protect them,” he said. “It is still rare that kids get very sick and hospitalized, but every time I see a kid in the ICU … I just think about if they’d only been vaccinated, we almost certainly wouldn’t be in this position.

“Although rare events are rare,” Dr. Wood added, “when they happen to your child, it’s real. Seeing those kids, seeing those parents, thinking that this was preventable, it’s heartbreaking.”

The physicians and other team members who lined up to get their kids vaccinated hope their example gives confidence to parents who might be on the fence about the vaccine.

Meanwhile, Dr. Bosslett encourages anyone who needs more information to go to a reliable source, most likely their physician, to ask questions. And she recommends this website.

Riley will also host several COVID-19 clinics for kids ages 5-11 on Saturdays in November and December. Find the full schedule and additional details here.

Riley will also partner with The Children’s Museum of Indianapolis for a vaccine clinic at the museum, 3000 N. Meridian St., from 4 to 8 p.m. Dec. 2. Advance registration is not required.

To make an appointment for the pediatric vaccine, contact your child’s pediatrician, or go to ourshot.in.gov.

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https://www.rileychildrens.org/connections/leading-with-their-heart-in-jordan Leading with their heart in Jordan 2021-11-04T08:41:00-04:00 2021-11-11T10:55:13-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

It was March 2020 when Dr. Mark Turrentine and his team of Riley Hospital for Children clinicians last embarked on a medical mission trip across the globe.

No one knew then that it would be nearly two years before they would return to Amman, Jordan, as the COVID-19 pandemic held the world in its grip, changing life as we knew it.

But finally, the stars aligned, and after a couple of false starts, the Riley team returned to Jordan in late October, where they operated on a dozen children with life-threatening congenital heart defects.

“It was very exciting to go back,” said critical care physician Riad Lutfi, who has participated in several Riley/Rotary mission trips with partners Gift of Life Amman, Chain of Hope, Gift of Life International, The Josh Lindblom Foundation and the Rotary Club of Greenfield, Indiana.

“We weren’t sure what to expect with COVID. Whether the nurses we worked with would be there, how many COVID patients they had, what kind of support we would have, but it was all better than expected,” Dr. Lutfi said.

Dr. Turrentine, who has made more than two dozen medical mission trips to the Middle Eastern country and many others, said in an earlier interview that he feels a sense of responsibility to these children, despite never having met them. If not for his team, they might not have access to lifesaving care.

“I know that 80 to 90 percent of these kids will never get to surgery if we don’t take a team there,” he said. “There is such a demand and there are so few opportunities for them to get access to surgical care.”

The dozen children he and his team treated on this trip are just a fraction of those who need help.

“It’s incredible the volume of kids over there who need heart surgery,” the surgeon said pre-pandemic.

That’s why he rarely takes personal time off anymore. His “vacations” are spent caring for kids a world away from home.

“For me, I feel it’s selfish to have time off and not go operate on a group of kids, because I know that every trip we don’t make, there’s 10, 12, 14 kids who may never get operated on,” he said in a previous interview. “That’s the way it has evolved.”

The resources to care for these children are limited, a reality that Dr. Lutfi understands. A native of Damascus, Syria, he has been on several medical mission trips to neighboring Jordan with Dr. Turrentine.

War and political turmoil have caused endless suffering for the people in Syria, especially the children.

Two of the patients the team operated on last week in Jordan were Syrian children, Dr. Lutfi said, including a little boy who had waited 19 months for the Riley clinicians to return to complete his corrective surgery for tetralogy of fallot (a rare condition caused by a combination of four heart defects present at birth).

“We operated on him in March 2020 (placing a central shunt), and he was waiting for his completion all this time,” the physician said. “I can’t imagine what the family has gone through.”

Yousef, now 2, came through the surgery and is recovering. What was difficult for Dr. Lutfi to see, however, was the effect that ongoing violence in Syria has had on the child.

“You can see the war-torn effect in him. I turned down the light at night, wanting him to sleep and help his heart rate go down after surgery. Instead, he screamed in the dark,” Dr. Lutfi said.

“He was in the dark for two years of his life in Syria, he wanted some light. It’s striking to me to see these kids grow up without electricity in a country with a fair amount of resources.”

COVID concerns and scheduling issues reduced the number of Riley team members who traveled to Jordan this year. Besides Drs. Turrentine and Lutfi, members of the group were CVICU nurses Sheila Rocchio and Heather Dornbusch and operating room nurse practitioner Brittany Mote.

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https://www.rileychildrens.org/connections/covid-19-vaccine-now-available-for-ages-12-15 COVID-19 Vaccine Available for Ages 5 and Older 2021-11-04T08:00:00-04:00 2021-11-04T10:05:12-04:00 The COVID-19 vaccine is available to children ages 5 and older. The US Food and Drug Administration (FDA) has expanded emergency use authorization for the Pfizer vaccine for children ages 5 - 11. The Pfizer vaccine was previously approved for children 12 years and older.

The other two COVID-19 vaccines authorized for emergency use in the U.S. – Moderna and Johnson & Johnson – are only available to anyone 18 years and older.

What You Need to Need to Know About COVID-19 Vaccines for Adolescents:

  • The Pfizer vaccine is safe and effective. All three approved vaccines for adults, including the Pfizer vaccine, were effective in helping prevent severe cases of COVID-19. In the expanded clinical trials Pfizer conducted for this age group, no cases of COVID-19 were recorded among the participants that received the vaccine.
  • The side effects were similar as reported by adults. For adults, common side effects after COVID-19 vaccine include swelling or redness at the injection site, fever, headache, tiredness, muscle pain, chills and nausea. Some people have no side effects. Learn more about what to expect after your COVID-19 vaccine.
  • 12- to 15- year olds will receive the same two-dose vaccine as adults. You need to be available to return to the same location 19-23 days after your first appointment.
  • 5- to 11- year olds will receive one-third of the dose as the adult vaccine. The vaccine is given in two shots spaced three weeks apart, just like the adult dose. This lower dose is proven to produce a strong immune response in children while minimizing the side effects.
  • Getting a COVID-19 vaccine helps protect you and those around you. COVID-19 has not been as serious to children as it has been to adults. However, children are still able to get the virus and also transmit the virus to others. Getting a vaccine helps protect those around you, including older people or those with chronic medical conditions who may be more likely to get a serious case of COVID-19 if they were to catch it.

Schedule an Appointment

To schedule an appointment, call 211 or visit ourshot.in.gov. Several COVID-19 vaccine locations also offer walk-in appointments. Visit the website to find walk-in locations near you.

For more information about COVID-19 vaccines or answers to your questions, visit iuhealth.org/vaccine.

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https://www.rileychildrens.org/connections/pfizer-vaccine-for-kids-arrives-at-riley Pfizer vaccine for kids arrives at Riley 2021-11-03T12:31:00-04:00 2021-11-03T15:52:10-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

The tiny vials with the orange label are the latest warriors in the fight against COVID-19, and the first prized shipment arrived this morning at Riley Hospital for Children at IU Health.

The Centers for Disease Control gave the final OK Tuesday night for the child-sized dose of the Pfizer vaccine to be given to kids ages 5-11. This recommendation comes after the FDA approved the vaccine last week.

Heather Cody, project manager for pharmacy at Riley, unpacked the 300 doses that arrived at the Downtown Indianapolis hospital and placed them carefully in Olaf, the department’s deep freezer, which protects the temperature-sensitive vaccine.

The 300 doses are contained in three small boxes (10 vials per box with 10 doses per vial) that were tucked safely into voluminous packaging and kept cold with dry ice.

For Cody, unpacking the pediatric vaccine is another high point in the past year. Last December, when the first Pfizer vaccine for adults rolled out, she and a team of people were on hand for the first shipments.

This is just as exciting.

“We’ve been anxiously awaiting this. It’s super exciting because it’s for peds, and it’s the first,” she said. “We want to get as many doses into arms as possible.”

Michael McGregory, Riley’s director of pharmacy, said vaccinating 5- to 11-year-olds is “an important next step in ending the pandemic.”

Alison Isenhour can’t wait to get her 9-year-old daughter, Lauren, vaccinated. She found plenty of appointments available on the Walgreens website. Lauren will get her first dose Monday after school at a Walgreens near their home in Brownsburg.

“Lauren is very excited to be able to get the vaccine,” Isenhour said. “Not only to protect herself but others, especially her brother Adam.”

Adam, 16, is a cancer survivor. He was vaccinated in the spring.

Isenhour, who works as a mammography technician at IU Health Methodist Hospital, said she knows the technology and the science that has been put into the development of the vaccine.

Still, she said, she would be lying if she said she wasn’t a little nervous.

“I’m about as anxious as I was with any shot, vaccine or medication they’ve gotten since birth. We want the utmost protection for them, and I believe this vaccine benefit outweighs the risk.”

While children are less likely to become seriously ill with COVID if they contract it, nearly 700 have died from the virus since last year. Riley saw a big uptick in pediatric patients with the virus during the peak of the Delta variant spread over the past few months.

Of those who have contracted the disease or been exposed to it, a small percentage have been diagnosed with MIS-C (multisystem inflammatory syndrome in children), which can lead to inflammation of the heart, lungs, kidneys, brain, eyes and GI system.

Parents who are interested in getting their children vaccinated should contact their pediatrician. Shots also will be available to children who are inpatient at Riley or who are being seen in the outpatient clinic. They also will be available at the retail pharmacy in the Riley Outpatient Center on Thursdays and Fridays.

Go to ourshot.in.gov for the latest information on where the pediatric Pfizer COVID-19 vaccine is being offered.

This is the first pediatric COVID vaccine for ages 5-11 authorized for use in the U.S. The vaccine is one-third the dose of the adult vaccine, and children will get two injections given 21 days apart.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/she-is-the-heart-and-soul-of-the-burn-team She is the “heart and soul” of the burn team 2021-11-02T08:55:00-04:00 2021-11-02T09:01:42-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Madeline Zieger doesn’t like the spotlight, but the spotlight found her Friday morning on the burn unit at Riley Hospital for Children.

Zieger’s colleagues in the Riley Burn Center joined the physician assistant for a celebratory breakfast while she received the IU Health Physicians Values Leadership Award.

For three decades, Zieger has been providing care at Riley on a unit that often sees the worst injuries imaginable. She is “the heart and soul of the team,” said Dr. Brett Hartman, medical director of the unit.

Judy Coleman, chief financial officer for IU Health Physicians, presented the crystal award to Zieger, who was joined by her husband and son at the celebration.

The award celebrates team members who demonstrate extraordinary dedication to the IU Health mission and values of team, purpose, compassion and excellence both at work and in the community.

“Thank you to the burn team for submitting this nomination,” Coleman said. “Reading through it, I would love to be on your team.”

Nurse Christopher Swift said since his first day on the job five years ago, Zieger has stood out as “that person everybody looks to for wisdom.”

“She is Incredible,” he said. “She makes the team for us. We all know it, and we all treasure her. We are all extremely excited that she is finally being recognized for her dedication to our children in the Riley Burn Center.”

Belinda Frazee, manager of clinical operations, agrees.

“Madeline is always that consistent voice for us. We so love and appreciate her. She is an amazing human being.”

For Zieger, the award is a recognition of hard work over the years, but it’s also recognition of the team she is part of, she said.

“I’m one member of the team, but without everybody, we don’t have a functioning unit.”

In the end, it is a family, she said.

“We all work well together, and it’s a privilege to be part of it.”

Nurse Milly Jennings and child life specialist Caitlin Dougherty agree on one other thing about Zieger – she is an excellent teacher.

“She is a safe place to keep asking questions,” said Jennings, who appreciates that Zieger is always willing to share knowledge, yet also has a good sense of humor.

“I look up to her. I want to be like her.”

Dougherty says Zieger is the glue that holds the team together.

“I know that if I have a question about what’s going on with a patient that will help me do my job better, I can go to her, ask her a question, she’ll explain it and not think twice about helping me out to do my job too,” Dougherty said.

“I really appreciate her as a team player and a person as well.”

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https://www.rileychildrens.org/connections/this-halloween-two-families-are-giving-thanks-and-giving-back This Halloween, two families are giving thanks and giving back 2021-10-31T11:41:00-04:00 2021-10-31T11:54:35-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Will DesJean had been at Riley Hospital for Children for just a couple of days last October when he received a Halloween bag filled with goodies from a local family wanting to give back.

It was the beginning of fall break last year when Will, then 8, was diagnosed with osteosarcoma in his left leg. His parents, Chris and Stacy (a former Riley nurse), were still absorbing the devastating news when they were touched by the unexpected gift.

Turns out, the family knew the gift-givers.

Kim and Matt Lyon and their kids, Piper and Brooklynn, were on the receiving end of many acts of kindness themselves after their daughter Piper was diagnosed with Burkitt’s lymphoma. Then 5, the little girl underwent months of treatment at Riley.

Piper, now 9, and her family have teamed up with friends to pack and deliver Halloween bags to Riley every year since. It’s part of Halloween 4 Heroes, an outreach project launched when Piper was sick.

“We received one of her bags last year when we were here,” said Stacy, who actually coached Kim in cross-country at Franklin Central High School many years ago.

“When Piper got sick, we followed their journey, and Kim reached out to us when she heard that Will was sick.”

In what Kim described as a “full-circle moment,” the DesJean family, including Will and his two sisters, joined the Halloween 4 Heroes squad in a packing party last weekend, stuffing Halloween bags with toys, books and crafts.

In all, 260 bags were packed and delivered to Riley Hospital last week to be distributed to patients by child life specialists.

Riley Children’s Health President Gil Peri was even on hand to greet Kim and her crew and thank them for the donation, a gesture that she appreciated.

“It was nice to hear that he knew about us and our project, and they seemed really excited to be receiving the bags again this year,” said Kim, who has worked with friend and supporter Andrea Arnold to expand the project.

Will, now 9, is learning to walk again after orthopedic surgeon Dr. Christopher Collier removed much of his femur to root out the cancer last year, replacing the leg bone with donor bone. The boy’s chemotherapy ended in June, but a scan in September found a new tumor in one lung.

Riley pediatric surgeon Dr. Alan Ladd removed the small lung tumor last month. No chemo was needed because there was no evidence that the cancer had spread.

“So now we just watch and hold our breath,” Stacy said.

Meanwhile, Will is doing remarkably well, his mom said. He returned to school this year after missing most of last year, and he is regaining his strength, thanks to physical therapy.

The third-grader likes to fish and play video games with his friends, a lifesaver during COVID.

Dr. Melissa Bear is Will’s oncologist.

“We love her,” Stacy said. “All of our team is just amazing. I can’t say enough good things about them all.”

That’s why this year she wanted to be a part of the Halloween bag giveaway.

“We love to pay it forward to other families who are going through something similar.”

She’s thankful that tonight for Halloween, Will won’t be spending it in the hospital. He’ll be out trick-or-treating, dressed as Theodore from The Chipmunks.

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https://www.rileychildrens.org/connections/covid-vaccine-for-younger-kids-could-be-available-next-week COVID vaccine for younger kids could be available next week 2021-10-28T09:54:00-04:00 2021-10-28T12:43:39-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

As a physician and a parent, Dr. Sarah Bosslett couldn’t be more pleased with this week’s news that the Pfizer COVID-19 vaccine for kids ages 5-11 is so close to receiving emergency use authorization from the FDA.

Her youngest child and 28 million other children in that age range around the country will have access to a kid-sized dose of the vaccine that has proven remarkably effective at curbing serious disease and death in adults.

An FDA advisory panel voted Tuesday to accept data that shows the smaller dose is safe and 90.7% effective in preventing infection in the 5-11 age group. The regulatory agency and the CDC are expected to approve it within the next few days, opening the door for the vaccine to be available next week at hospitals, pediatricians’ offices, health clinics and pharmacies.

Dr. Bosslett, a pediatrician with Riley Children’s Health at the Georgetown Road office on the northwest side of Indianapolis, says it can’t come soon enough.

She and her husband have four children. The older two, both 15, were vaccinated when approval was granted for the 12- to 17-year-old age group to receive the two-part shot in May.

The couple’s younger daughter couldn’t wait to get her shot when she turned 12 recently. Unfortunately, she woke up sick on the morning of her birthday and tested positive for COVID. She was pretty sick for several days but recovered, her mom said, and has since been vaccinated.

That leaves the youngest, 7-year-old Bram, who is ready for his turn.

“WHEN CAN I GET MY COVID SHOT?”

“All of my kids, as soon as they’ve been able to get the vaccine, they want it.” Dr. Bosslet said. “They just want life back to normal. They want to see their friends, they want to do overnights. They want all of that back.”

And they don’t want to miss anymore school, she said, noting the two younger kids have missed nearly three weeks of school this year, despite a mask mandate being in place in their Pike Township schools.

“Even my 7-year-old is like, ‘When can I get my COVID shot? I don’t want to wear a mask anymore. I just want this to be over.’”

Like Bram, everyone wants this to be over.

Dr. James Wood, an infectious disease specialist at Riley Hospital in Downtown Indianapolis, has seen the toll the virus has taken on his pediatric patients up close. The vaccine can prevent unnecessary pain and suffering, he said.

“From my standpoint, it is the best thing we can do for kids to protect them. It is still rare that kids get very sick and hospitalized with COVID, but every time I see a kid in the ICU, which in the last few weeks has been many, I just think that if they’d only been vaccinated, we almost certainly wouldn’t be in this position.”

Although serious infection in kids might be rare, he said, “when it happens to your child, it’s real.”

“Seeing those kids, seeing those parents, and thinking that this was preventable, it’s heartbreaking,” the physician and father said.

Dr. Wood and his wife have two children, ages 5 and 7. They’ve spoken to the kids about the importance of the upcoming shot.

“Although they’re not loving the idea of getting a needle in the arm, they are well aware and ready to go,” he said.

He is so confident in the vaccine, he signed his kids up for a clinical trial in Cincinnati when it was in the testing stage. They didn’t get in to the trial then, but now, “We’re gonna get in line as soon as we can.”

COVID FATIGUE

Dr. Bosslett, Dr. Wood and their colleagues in pediatric medicine understand the fatigue parents feel over COVID. They feel it too. The masks, the testing, the quarantining, the missed days of school and work. And, of course, the worry that every sniffle is the start of COVID.

“It’s been a slog. People are just emotionally spent and tired,” Dr. Bosslett said.

She worries that too many parents will choose not to get their child vaccinated. Some are uneasy, and some are unwilling.

It’s those parents who might be persuaded when given accurate information from trusted sources that she and her colleagues hope to reach.

Many of the parents who come to her, perhaps when their child is already sick, just have questions, she said.

“Honestly, sometimes they just need me to sit in there while their child gets the vaccine so they feel better about it. They’re just nervous.”

Even though widespread use of mRNA (messenger ribonucleic acid) vaccines (Pfizer and Moderna) is new, the technology has been studied for decades, according to HealthyChildren.org. They do not contain any live or dead parts of the virus.

Dr. Bosslett encourages anyone who needs more information to go to a reliable source, most likely their physician, to ask questions. And she steers them to this trusted website.

REACHING THOSE WHO WILL LISTEN

Getting the vaccine approved is one thing, Dr. Wood said. Getting people to take it is the next big hurdle. That’s why he and his colleagues work so hard to understand why people are hesitant.

“We’ve spoken with folks who have dealt with vaccine hesitancy before COVID, trying to understand the best way to approach families and parents,” he said. “The bottom line is there is not a one-size-fits-all approach to talking to families. Everybody’s coming at this from a different perspective, with different information.”

The people who need good information and who are willing to listen are the people he believes he can reach.

“With so much misinformation out there, our role is really to provide the science and the good data and give it to people in an understandable and digestible form,” he said. “We need to understand what folks are worried about and then address those worries.”

Still, he believes at least half of parents of eligible kids will adopt a wait-and-see approach. Many won’t consider it at all.

“Nobody likes to be told they have to do something, but I want people to ask the right questions of the right people and not get their information from Facebook,” Dr. Wood said.

“The bottom line is, it’s safe and it’s effective. The benefits heavily outweigh any risk,” he said.

(There have been reports of a small number of people developing mild heart inflammation after receiving the vaccine, though none of the 3,000 kids ages 5-11 in Pfizer’s trial developed that condition.)

“WE NEED TO GET THIS DONE”

Dr. Wood said he is excited for his kids to have the protection provided by the vaccine, and he wants the same for all children.

The same goes for Dr. Bosslet. That’s why she hopes that she and her peers can reassure parents by getting their own children vaccinated as soon as possible. And even doing it in front of cameras to communicate the sense of urgency they feel.

“If we don’t model it and we’re not prepared and we don’t show from the get-go that this is important, if we are on our heels, then people are going to see this as not a big deal, not urgent,” she said.

Instead, she hopes it will resonate with other parents when they see her getting her 7-year-old son vaccinated.

“Here is my child. I’m vaccinating him, and these are the reasons why,” she said. “I think they need to see that and hear it and know that this isn’t something that you do if you want to. We need to get this done.”

So, come next week, she hopes to be seeing a crush of parents coming in to get their children a COVID shot. But she is realistic.

“I don’t know how much more telling it can be that all of the medical people are like, let’s go. We’re trying to get that group in the middle who can be swayed. If we can show them that we think this is important enough that we are having our own children vaccinated, that will help.”

Riley Hospital and its pediatric physician offices are expected to receive an initial shipment of the vaccine next week, pending FDA authorization. Details on how and where to get your child vaccinated will be announced next week.

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https://www.rileychildrens.org/connections/its-respiratory-care-week-and-riley-rts-are-feeling-the-love It’s Respiratory Care Week, and Riley RTs are feeling the love 2021-10-27T07:51:00-04:00 2021-10-27T08:06:30-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

If ever a group of healthcare workers deserved to be celebrated, it’s respiratory therapists.

They have been in the thick of the COVID-19 pandemic for the past 20 months now, along with their fellow clinicians, caring for desperately ill patients at a time when the disease was (and still is) a deadly mystery.

That’s why marking Respiratory Care Week this week at Riley Hospital for Children is a big deal. There are lunches and dinners and snacks, of course, provided by physicians and nurses from different units. There are games, prizes, a photo booth, silent auction and shout-outs posted along the wall leading to the RT offices.

Diana Meadors has been a respiratory therapist at Riley for 17 years, the past 13 on the pediatric intensive care unit. She has been in a clinical specialist role, educating and training team members while also providing patient care, since 2010.

Before that, she worked with adults as an RT in Lafayette for 20 years.

Kids, she said, are way better.

“That’s my love,” Meadors said. “I didn’t know that until I started working at Riley. I came here because I needed to work days for my home life, but I found I really love working with the kids.”

Meadors, who with her wife, Lisa, has four kids and two grandkids, said COVID and other respiratory ailments have hit pediatric patients hard over the past few months.

“We’ve been busier than ever and not just with COVID. Other viruses have escalated since mask mandates have fallen away,” she said.

And kids, especially teens, who’ve had COVID have been very sick.

“It’s a long haul. It takes a toll on them and their families.”

But pediatric patients are tough, Meadors added. They take what’s thrown at them and they don’t complain.

“I worked with adults for a long time, and they would complain about their therapy when you’re just trying to get them better. Kids don’t do that.”

Amanda Worthington is also an acute care clinical specialist at Riley and co-chairs the Aspire committee, which has planned this week’s activities.

The notes from nurses and other team members that are posted in the hallway of the RT offices are a reminder to the team why they do what they do.

“Thank you for all that you do! You guys are amazing! We wouldn’t be able to do what we do without you,” one Riley colleague wrote.

“Love seeing your cheerful face! I always learn something new when you’re working. Thank you for spreading your knowledge and always being in good spirits. You rock,” another nurse wrote.

Worthington kept one note she received previously from a nurse she worked with in the emergency department: “Our RTs are the best ever. They are such team players, and they are always willing to educate myself and others. … They are always willing to joke around with me when time allows and always have my back no matter what.”

In light of the last year, notes like that mean so much, Worthington said.

“We are drained. Our acuity is high, our staffing is low, but we still give everything we’ve got to take care of our patients and also our co-workers, our nurses and docs. We do try to be there and support them, like they do for us.”

The Aspire committee helps raise money throughout the year to plan these special events, as well as supporting asthma camp, working with the Riley Food Pantry for a Thanksgiving food drive and adopting a family to shop for during the holidays.

For Meadors, the recognition is appreciated, even if she doesn’t care for the spotlight.

“I like to be behind the scenes,” she said. “But it’s nice when the leadership and physicians and nurses show appreciation for us and what we do. I feel they do appreciate us at Riley. We see that on a daily basis.”

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https://www.rileychildrens.org/connections/he-takes-care-of-avery-like-he-was-his-own-child “He takes care of Avery like he was his own child” 2021-10-26T11:37:00-04:00 2021-10-26T14:47:22-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

From the day he was born seven years ago, Avery Brown has had to fight.

Fight to breathe. Fight to eat. Fight to be understood.

It has taken a determined mom and many compassionate doctors to help him through those battles.

But one physician stands out, not just for his medical expertise but for the relationship he has forged with his young patient.

Dr. William E. Bennett, a pediatric gastroenterologist at Riley Hospital for Children at IU Health, met up with Avery and his mom, Brittany, in the Simon Family Tower lobby at Riley last week.

Avery had been at Riley for several appointments the previous day, but he and his mom returned to say hi to Dr. Bennett after spending time with family and before heading back home to New Paris, Indiana, about three hours north of Indianapolis.

“I’ve been taking care of him since he was a baby,” Dr. Bennett said. “He’s definitely my cutest patient.”

CUTE AND BRAVE

He might say that about all his patients, just like he teases his four kids at home, but Avery is indeed special, the physician said.

“He has a lot of complex things going on, but one awesome thing about Avery is he’s always had a really good attitude,” Dr. Bennett said as the boy hugged a statue of former Riley physician-in-chief Richard Schreiner in the Riley lobby, before moving on to sit next to a statue of Hoosier poet James Whitcomb Riley, the hospital’s namesake.

“He has always been really brave about all the stuff we put him through. That makes a big difference. And he has a good relationship with all of his doctors,” Dr. Bennett said.

When Avery was born in northern Indiana, six to seven weeks before his due date, he wasn’t breathing, his mom said. Once his respiratory emergency was under control, he was transferred to a Fort Wayne hospital, where he remained in the NICU for about a month.

During that time, he suffered several episodes of rapid heart rate and had a hole in his heart that resolved on its own in time.

FAILURE TO THRIVE

Avery was discharged, but his problems were just beginning. He was referred to Riley for failure to thrive, which was directly related to another problem he was having – cyclic vomiting.

The newborn was vomiting multiple times every day, barely able to keep anything in his stomach. An older brother, 2 at the time, had the same condition, though not quite as severe, and had a feeding tube.

Avery was in and out of the hospital much of that first year of life. But at about 14 months, an MRI ordered by Dr. Bennett finally offered a whisper of an answer: obstructive hydrocephalus.

The disorder is a blockage that prevents the flow of cerebrospinal fluid between ventricles in the brain. As Dr. Bennett explains, there are as many nerves in the gastrointestinal tract as there are in the spinal cord and numerous connections between the brain and the GI tract. Basically, Avery was suffering from migraines of the head and stomach, his mom said.

The MRI indicated increased intracranial pressure, which required surgery to place a shunt in Avery’s brain to drain off excess fluid.

“Dr. Bennett has been such a huge blessing,” Brittany Brown said, while physician and patient chatted in the background seated at a piano. “We’d been through every test possible, and no one could diagnose him. He was not developing, he was getting worse, vomiting mass amounts all the time.”

It went on for months, she said, but it felt like years.

Until that diagnosis and the surgery that followed.

“That was a huge piece to Avery’s care,” she said.

A LONG SEVEN YEARS

The build-up of fluid in his brain before the shunt was placed resulted in some developmental delays, mostly memory and retention issues, Brittany said. She and her husband, Alan, who have three other children, used sign language with Avery for the first two years of his life, but after he got tubes in his ears and had speech therapy, he picked up language quickly.

“Now to speak to him, he can converse like he’s 18,” she laughed.

The second-grader, who also suffers from asthma and epilepsy, has “silent seizures” and migraines that can make school difficult.

“It’s been one thing after another,” Brittany said. “It’s been a long seven years for him and for me.”

That’s why the relationship with Dr. Bennett and the rest of Avery’s team, which includes neurology, developmental peds, psychiatry, neuropsychology, ophthalmology, sleep medicine, hematology, pulmonology, dental and genetics, is so important.

“We keep as many specialists as we can at Riley,” Brittany said. “Having as many people under one roof as possible is definitely beneficial. And we think so highly of Dr. Bennett. It feels like he has become family, and he takes care of Avery like he was his own child.”

FOCUS ON THE PATIENT

Being a physician is a two-way street, Dr. Bennett says, something he has taken more to heart as he has gained experience.

“A lot of people see healthcare as this one-directional thing – you go to the doctor and they provide a service. I’ve found that I like my job a lot more if I’m getting feedback from patients and families that what I’m doing matters to them,” he said. “That motivates you to work hard, to focus on what they need rather than what the last patient needed.”

Avery is an example of a patient who requires a care team who thinks outside the box to keep his symptoms under control, the doctor said.

“He’s a complex little boy, but I think we’ve made a lot of progress with lots of different things and kept him from having to have more surgeries, more procedures. He’s been doing relatively well the past couple of years.”

His combination of problems is unique enough that it’s hard to know what the next year or the next five years will bring, the physician said. But getting his vomiting under control with weekly IV fluid infusions at a hospital closer to home has made a big difference by reducing trips to the emergency department for dehydration.

Meanwhile, Avery continues to live an active life, his mom said. He loves swimming and sports – participating in basketball camps and flag football – and he gets a kick out of riding ATVs with his siblings.

“Avery is full of life. He does not let his medical stuff hold him back,” Brittany said. “Sometimes I have to be the mean mom and say you can’t do that, but he doesn’t have a lot of restrictions.”

LISTENING TO PARENTS

And that’s the whole point of his treatment, Dr. Bennett said. “The goal of all of this is so he’ll have a great quality of life.”

It’s something the physician keeps in mind with all of his patients. But to do that, he needs to know them as individuals.

“You can’t meet with someone one time and understand what their needs are,” he said. “You have to develop a relationship.”

That’s why he listened closely to Brittany’s concerns when she told him years ago that something was not right with her son. Although skeptical, he ordered that MRI that gave them some answers.

“As doctors, we can learn from that,” he said. “If mom is really worried, sometimes it’s OK to reassure her, but a lot of times you have to say I’m going to dive deeper into this to see what’s going on. That’s where building a relationship helps. I need to trust her opinion.

“We know the disease process, and she knows her son,” he added. “That makes it more of a partnership, when you approach it like that. If you put that together, it results in the best outcomes.”

Physicians like Dr. Bennett are what get Brittany and Alan through the tough days.

“It’s exhausting, but it helps having that connection and being able to know without a doubt that Avery is going to get whatever care he needs,” Brittany said. “Having a good team of doctors has made all the difference in the world.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/mad-dash-to-the-ed-saves-little-boy Mad dash to the ED saves little boy 2021-10-24T09:40:00-04:00 2021-11-10T11:17:20-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Dr. Ben Petty sees a lot of things as an emergency department physician at IU Health West Hospital, but this was different.

Rushing toward him was a fellow doctor wearing a protective gown, mask and face shield and holding tight to a baby boy.

The child in his arms was cyanotic, Dr. Petty observed, pale and listless. His lips were blue. He was breathing, but clearly struggling.

“Honestly, I don’t think he could have been breathing on his own much longer,” Dr. Petty said. “He got here in the nick of time.”

Dr. Jason Cosgrove is a pediatrician with offices at IU Health West. When Kalina Chew brought her 1-year-old son in to see him that Tuesday morning last month, he knew immediately the child was in distress.

Chew had been watching her son closely since the previous night when he had a runny nose. By morning, he was worse. He had a well-child visit scheduled that day with Dr. Cosgrove, but she wondered if she should take Murphy directly to Riley Hospital for Children, where he had been seen a month earlier for a bronchial infection.

“RAN HIM TO THE ER”

Dr. Cosgrove was available to see her immediately, the pediatrician’s office told her, so rather than risk waiting in an emergency department, she drove her son to IU Health West, much closer to her Brownsburg home.

“That’s what I did, and I’m grateful for that,” Chew said. “Dr. Cosgrove was able to give him a steroid shot right then, and he scooped him up and ran him to the ER because his oxygen level was in the 60s.”

The entire visit in the pediatrician’s office took just a few minutes, Dr. Cosgrove said. He took one look at Murphy, had him swabbed for COVID and flu (both negative) and had a nurse check his oxygen saturation levels – twice. The first reading came back in the 70s, the next in the 60s. A normal oxygen level is 95 or higher.

The doctor gave him a shot of Decadron to help his breathing and had his nurses call down to the ED to let them know he was bringing a sick baby their way.

“He did not look good. I knew he was pretty sick,” Dr. Cosgrove said. “I just picked him up and headed down there. They met me on the way, and they were ready to roll.”

At a normal pace, the walk from his office on the west side of the hospital to the emergency department on the east side might take about 3 minutes. He went a lot faster this time.

“This was the first time I had walked a patient to the ER ever,” he said. “And they were well-prepared.”

TEAM JUMPED INTO ACTION

Dr. Petty estimates barely a minute passed between the time he got the call that a sick child was on his way and Dr. Cosgrove’s arrival with Murphy in his arms.

“That was the most notable thing – Dr. Cosgrove carrying the child down from his clinic to the emergency department,” Dr. Petty said. “I can’t recall ever seeing that happen.”

Meanwhile, Murphy’s mom was in a state of shock but took a photo of Dr. Cosgrove carrying her son to the ED because she wasn’t sure her husband, Tad, who was home with their older son, Clark, would believe what was happening in that moment.

She fought to stay calm.

“I knew not to panic yet, but when we got to the ER, I think at one point there were four physicians in the room and I don’t even know how many nurses. It felt like there was one nurse just for me, to keep me calm.”

Dr. Petty had readied his ED team and asked respiratory therapist Brenda Joyce to jump in. They put Murphy on high-flow oxygen through a nasal canula and prepared his mom for the possibility of him being intubated and put on a ventilator.

“The baby was lethargic and pale and his lips were blue,” said Joyce, who couldn’t help but flash back to the time her then 6-week-old grandson had a respiratory virus and had to be intubated. “She got him to the doctor just in time really. It could have been a lot worse.”

MUSIC CALMS HIM

At one point, Murphy’s mom asked if she could climb up next to her son and play a song on her phone that calms him. Murphy’s middle name is Joel, a nod to singer Billy Joel, whose 1977 tune “Scenes From an Italian Restaurant” later wafted through the emergency room.

“That doesn’t happen very often either,” Dr. Petty said, marveling at Chew’s level-headedness. “That was instrumental in allowing us to get an IV in and start him on oxygen.”

But talk of a ventilator scared the young mom.

“Of course, over the last couple years with COVID, you hear of someone going on a ventilator and not coming off, so that’s where my head went,” Chew said. “Thankfully, he responded well to the oxygen and albuterol.”

Dr. Petty said it is his job to prepare for the worst in the ED. He was grateful that it didn’t come to that.

“Everyone was so calm, worked so well together, got him on oxygen and stabilized him,” he said, before calling for Murphy to be transported to Riley via IU Health LifeLine.

“We were thrilled to see that he did really well,” Dr. Petty added. “I counsel parents to use their intuition because they know when something is off. Her mom instinct was right on that day.”

“PRAYING FOR THE BEST”

There was no room in the ambulance for Chew, so she followed in her car. That’s when she allowed herself to fall apart a little, realizing how close she came to losing her little boy.

“I had mentally prepared that our Lord was potentially calling our baby home, while accepting that I had done everything I could in that moment and praying for the best.”

Much of that morning was a blur to Chew, who said she finally caught her breath once they got to Riley and her baby’s oxygen levels stayed up.

The diagnosis of asthma that came later at Riley flooded Chew and her husband with relief, but she was also confused.

“I have asthma, but it’s very mild and I didn’t know I had it until college,” she said. “I don’t have to treat it, I just avoid triggers. But this is a learning curve for me because so many things could set off his asthma – carpet, pets, allergies, weather changes, a lot of things out of your control.”

Murphy, who now sees pulmonologist Dr. Evans Machogu with Riley Allergy and Asthma, was on the PICU at Riley for two days before being moved to the pulmonary unit. During that time, Chew attended asthma education classes and learned how to give her son breathing treatments.

“By then, he was doing so much better. It was about educating me to keep him healthy,” she said. “In the class, they said 10 people in the U.S. die every day from asthma. I just didn’t know it could be that serious.”

PARENTS: TRUST YOUR INSTINCTS

Chew said under normal circumstances she would not be sharing her family’s health scare publicly, but she felt this was too important to keep quiet.

“We are grateful to have a diagnosis so we can help him. Even if this helps one person, then good came from it.”

She encourages other parents to trust their instincts.

“If you feel something is wrong, don’t wait. And advocate for your child,” she said, as a happy, healthy Murphy squealed and babbled in the background.

“We had a great experience at Riley. I’m just so grateful,” she said. “I feel very fortunate that we have such an awesome children’s hospital within 30 minutes of us.”

Murphy, whose first name is a nod to the sports bar Murphy’s Bleachers across from Wrigley Field in Chicago, is smart, active and happy today, his mom said. He loves balls, Hot Wheels and salmon and likes to watch big brother Clark play baseball.

He has settled into a routine of twice-daily breathing treatments while listening to his favorite Billy Joel tune.

“We’re still learning what triggers it (an asthma attack) for him,” Chew said, “but we feel fortunate that we have access to such great care.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-music-therapy-helps-families-find-joy-in-the-nicu PODCAST: Maternity Matters: Music therapy helps families find joy in the NICU 2021-10-18T10:03:00-04:00 2021-10-18T10:06:40-04:00

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https://www.rileychildrens.org/connections/swimmer-defies-the-odds-nine-months-after-he-nearly-died Swimmer defies the odds nine months after he nearly died 2021-10-14T12:38:00-04:00 2021-10-14T13:17:19-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Christa Hendrickson has made the three-hour trip to Riley Hospital for Children in Indianapolis so often that her car GPS began marking Riley as “home.”

For her and son Zane, however, home is Boonville, Indiana, a small town near Evansville that has wrapped its arms around the family ever since Zane collapsed on his high school pool deck in January and nearly died.

Zane, a champion swimmer, suffered a heart attack and stroke and would not have survived had it not been for the heroic efforts of a team of medical personnel spanning three hospitals.

By his mom’s count, his heart actually stopped nine times. She was with her son in the emergency department of Deaconess Hospital in Evansville when he coded the first time. When his heart stopped, hers nearly did too.

Collaboration among physicians, therapists, nurses and other clinicians at Riley, Deaconess and IU Health Methodist Hospital ensured that Zane made it safely to Riley while on ECMO (heart-lung bypass).

Open-heart surgery performed by Dr. Mark Turrentine repaired a heart defect that had gone undiagnosed Zane’s whole life. But the multiple cardiac arrests had done plenty of damage, leaving his endocardial layer scarred and reducing the heart’s ability to pump blood.

After a grueling 2½-month recovery at Riley, Zane went home to Boonville to continue therapy on an outpatient basis and try to reclaim the life he knew before Jan. 7, 2021.

“I WILL FOREVER BE GRATEFUL”

At the six-month mark on July 7, Christa posted on Facebook about the day Zane’s life – and hers – changed forever.

“Six months since I heard the words, ‘You need to get in here right away; your son is very sick and will likely go on a ventilator.’ Six months since seeing the medical team in the Emergency Department perform CPR on my son. Six months since hearing the words, ‘This is a fatal event.’ Six months since watching the doctors and nurses work tirelessly for hours to keep him alive.”

And then: “Six months since doctors and staff at three different hospitals collaborated to coordinate a life-saving event that had never been done before and for which I will forever be grateful.”

Now nine months after his ordeal began, Zane, 16, has accomplished a lot. Over the summer, he worked, got his driver’s license and completed his interrupted sophomore year of high school, maintaining a 4.0 GPA. In August, he returned to in-person classes for his junior year.

There were bumps along the way – a readmission to Riley in late March as his damaged heart struggled to heal, the realization that his swimming career was on hold, and a future that looked far different than he had imagined.

But a recent trip back to Riley for a follow-up echocardiogram and other tests reminded him how far he has come.

“It might not have been the path we planned, and the detour hasn’t always been the easiest to navigate, but we are still moving forward and forging new pathways,” Christa said.

Last week’s visit got off to a great start when Zane and his mom learned that cardiac sonographer Nancy Kehlenbrink, aka “Fancy Nancy,” would be doing his ECHO.

Kehlenbrink’s quick wit and compassion make her a favorite among her patients and their parents.

“Every time I see him, I am reminded of the amazing miracle I was blessed to witness over time,” Kehlenbrink said.

She will never forget the day Zane first became aware of his surroundings at Riley. She was doing his ECHO and was startled but delighted when he began talking to her.

“The next thing you know, his mom walked into the room and he proceeded to scold her because he could not get hold of her by phone.”

With a stern look and voice, Kehlenbrink recalled, he asked his mom where she had been.

“Christa and I both teared up because we knew the extent of the miracle we were witnessing in that moment.”

CONTINUING TO HEAL

Drs. Adam Kean and John Parent continue to follow Zane, monitoring his heart function. Talk of a heart transplant has been set aside for the moment, but it remains a very real possibility as Zane is being treated for heart failure, a chronic condition in which the heart doesn’t pump blood as well as it should.

The ECHO showed Zane’s heart was operating at about the same level as it had been two months previously.

“We didn’t get the improvement we had hoped to see, but his EF (ejection fraction) held steady at 30-32%,” Christa said.

Zane’s energy level is decent, considering all he has gone through, his mom said, but Dr. Parent is not comfortable with him resuming swimming, at least not yet.

So, Zane has turned his focus toward coaching.

“He just completed all of his coursework to get certified with Indiana Swimming/USA Swimming,” Christa said.

And perhaps the best news, all things considered, he has been asked by his high school to be an assistant swim coach.

One more thing: His English class was given the assignment to write persuasive essays to encourage classmates to donate to their favorite charities. Zane’s was chosen, and the class donated funds to Riley.

“Today, Zane’s heart is scarred and functioning at about half what it should be, but he is alive,” his mom wrote. “His left hand doesn’t work as it should, but he is alive. … He is able to go to school and work and hang out with friends. He is able to play games and laugh and be witty. He is able to hug his mom and roll his eyes at her for constantly nagging him. … He is alive.”

Submitted and file photos

For more information about the beginning of Zane's journey, check out our first article here: https://www.rileychildrens.org...

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https://www.rileychildrens.org/connections/i-was-scared-he-was-going-to-die “I was scared he was going to die” 2021-10-12T08:00:00-04:00 2021-10-20T11:26:51-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

The anguish in Charlie Krallman’s voice is obvious. He’s looking at his 17-month-old son in a hospital bed, connected to a ventilator that helps him breathe.

This same child was perfectly healthy just three months ago. Braxton Krallman was babbling, laughing, playing and trying to walk.

“One night he was fine, acting like a normal toddler, and the next day he was pretty much dying,” Krallman said, while his wife, Katrina, prepared to start her last 24-hour care session with Braxton at Riley Hospital for Children before the family could go home.

And home is pretty far away. The family, which also includes 8-year-old Lillian, lives in Woodburn, Indiana, about two hours northeast of Indianapolis. That has made it difficult for the Krallmans to always be at their son’s bedside.

“We’d be here every day if I didn’t have to work and the world would just stop for me, but it won’t,” the young father said.

“HE COULDN’T MOVE”

Their world stopped that day when they realized their little boy was critically ill.

“He couldn’t move his arms or legs or anything from the neck down at first,” Braxton’s dad said. “I was scared he was going to die. It happened so fast.”

He couldn’t even breathe on his own.

But if the past three months have taught Charlie and Katrina anything, it’s that their son is a fighter.

Braxton was rushed to a hospital in Fort Wayne in July with what doctors at first thought was a virus that was making him weak and listless.

He was taken to another Fort Wayne hospital, then transferred to Riley, where he was treated for transverse myelitis, an inflammation of the spinal cord that can lead to paralysis.

INTENSE REHAB

After a month of lifesaving treatment, Braxton was moved to Riley’s inpatient rehab unit, where a team of physicians and therapists have worked with him for six weeks to help him regain some strength and mobility.

Benjamin Schrock is a physician assistant on the unit who has seen Braxton power through many challenges since his arrival.

“He has made great progress from a medical standpoint and a therapy standpoint,” Schrock said. “When he first came over to rehab, he was completely dependent on a ventilator and now we’ve been able to get him off for trials for much of the day and breathing on his own.”

That’s a tribute to the interdisciplinary collaboration (think nursing, respiratory therapy, pulmonary/home vent team, physicians, advanced practice providers, and speech, physical and occupational therapy) that it took to successfully admit, care for and discharge the rehab unit’s first patient who required full-time vent support, said Kathleen Osborn, program manager for the Pediatric Inpatient Rehabilitation Program.

Braxton was weak overall, not moving a lot and had significant tightness in his little body when he first moved over to rehab, Schrock said.

But last week, his therapy team reported that he was moving his extremities more and was starting to grab things with his little fingers.

“He is stronger overall and more purposeful. He is looking at us, laughing and smiling,” Schrock said.

And chattering too, thanks to a valve placed over his trach that lets sound come out of his mouth.

BEAUTIFUL BABBLING

As a speech pathologist, Sarah Sternasty has spent lots of what she calls quality time with Braxton since the end of August. Among the things she has been able to help with is fitting her young patient with a speaking valve that fits over his trach.

“Kids who are on ventilators or have trachs typically are unable to use their voice,” she said. “There isn’t air passing through their vocal folds (cords). So early on, we started Braxton on a speaking valve. He breathes in through the trach, but when he breathes out, it closes and lets air pass through and lets his sweet little voice come out.”

He has not stopped babbling and yelling ever since, except when he’s asleep.

“He has so much attitude,” she said.

“His spirit is still there,” Braxton’s dad agreed, describing how his son loves Trolls, Baby Shark, beatboxing and listening to his musician dad play the guitar.

That voice and that spirit have brought joy to the team caring for Braxton.

“He is very bubbly, talkative, usually smiling and laughing,” Schrock said. “He makes our day brighter when we see him.”

Despite the trauma of his illness, Braxton is on target with his language skills, Sternasty said.

“From a communication standpoint, he has really blossomed.”

And while early on, he wasn’t able to take anything by mouth, a swallow study has cleared him to eat pureed food and yogurt, while receiving more nutrition via a feeding tube for now.

“With his respiratory issues, he was at very high risk for swallowing deficits,” she said. “The fact that he is going home on a plan where he can eat some food by mouth is huge.”

SIMILAR TO SPINAL CORD INJURY

Still, transverse myelitis, which interrupts the messages that the spinal cord nerves send throughout the body, is a life-changing illness, Schrock said. He describes it as similar to a spinal cord injury, without the trauma of an accident. It was likely due to an infection that spread to the spinal cord and caused inflammation.

Landing at Riley, however, gave him access to the level of expertise he needed quickly, both in terms of treatment and rehabilitation, Schrock said.

“With these types of injuries, getting to rehab quickly, getting intensive therapy as soon as possible, is really important. I think this gives him the best chance of recovery.”

Occupational therapist Lesly Solares stepped in to help care for Braxton a few weeks ago when he was entirely vent-dependent. By transitioning him to a trach collar, which is placed over his breathing tube and through which humidified oxygen passes, his strength returned more quickly, along with his gross and fine motor skills.

Now he is using his hands to grasp toys, sitting with assistance and laughing, a sound that soothes his parents.

ENERGY IS RETURNING

Through the hard work of the medical team, the pulmonary team and speech therapy, he was able to get even stronger in his breathing so he was able to tolerate being on the trach collar, said Riley physical therapist Lindsay Schaefer.

She saw considerable progress in her little patient’s ability to sit and hold his head up for short periods of time.

“We also saw more energy and willingness to participate in play,” she said.

Some of that energy came from seeing other kids in the therapy gym, which was something Schaefer and her therapy colleagues knew was important.

“We went through vent training so we could put him on a portable vent and get him out of his room,” Schaefer said.

Then they combined his PT and OT sessions so he could get more out of the time allotted.

“That’s when we saw him interacting more, watching the other kids throwing a ball,” she said. “We problem-solved to make it the most beneficial for him. Seeing him get stronger in all aspects and seeing as a whole team how we made him stronger was pretty great.”

“GOD GETS US THROUGH”

Braxton was taking a power nap last week while his mom was getting ready to give him a bath with support from his therapy team, but the family was looking forward to discharge two days later.

He will still require intensive home care and therapy, but none of that scares his dad.

“He’s my son, and I love him. Nothing intimidates me that involves taking care of him. I would walk through hell fire if that’s what I had to do to make sure he is OK.”

Time will tell how much function returns to Braxton. A diagnosis of transverse myelitis typically comes with this prognosis: A third of patients have no return of function, a third regain some skills with modifications, and a third made a full recovery.

The Krallmans obviously are hopeful that Braxton falls into the latter category, but they take it all day by day.

“God gets us through,” Katrina said. “That and seeing the smile on his face. That’s what keeps us going.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-the-covid-19-vaccine-and-pregnancy PODCAST: Maternity Matters - The COVID-19 vaccine and pregnancy 2021-10-11T08:27:00-04:00 2021-11-10T10:56:28-05:00

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https://www.rileychildrens.org/connections/riley-rallies-around-afghan-children-in-need-of-care Riley rallies around Afghan children in need of care 2021-10-07T14:36:00-04:00 2021-10-07T15:28:37-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

In a playroom on the eighth floor of Riley Hospital for Children, a man and a boy sit on a table facing the window. They look out at the unfamiliar city below them and talk quietly in a language few here understand.

They could be any father and son seeking a reprieve from the stress of a hospital room. While they may feel like strangers in a strange land, they have been welcomed here.

Around them, they see the face of hope.

That’s what team members at Riley want to be for this family and so many others who have come from Afghanistan to start a new life in a new country.

It doesn’t matter that they don’t speak the same language. A smile, a reassuring touch, a gesture of welcome says what words cannot.

“You are safe.” “We want to help.”

That has been IU Health’s guiding principle ever since more than 6,000 Afghan men, women and children who fled their country after the Taliban takeover were temporarily resettled at a military base about 40 miles south of Indianapolis last month.

Camp Atterbury, a training base for the Indiana National Guard, is serving as one of nine temporary refugee resettlement posts in the United States.

DOING GOOD WORK

Dr. Michele Saysana, chief quality and safety officer for IU Health and a pediatric hospitalist at Riley, has been coordinating Riley and IU Health’s response to the Afghans’ needs.

She comes to this work from both a professional and a personal interest. Her husband is Dr. Chan Saysana, a pediatric anesthesiologist at Riley and a former refugee from Laos. He and his siblings and parents fled that war-ravaged country in 1976 and came to America.

Dr. Saysana serves on the board of Exodus Refugee Immigration in Indianapolis, which has a long history of welcoming refugees to Central Indiana.

Because of that association, she knew that a large number of Afghan refugees would be arriving at Camp Atterbury, but she didn’t know that nearly half of them would be children. In addition, there were at least 100 pregnant women.

One of the first things she was able to arrange, with help from IU Health team members Kieran Tansy, Matt Simpson and Joe Meyer, was the donation of an ultrasound machine to the camp so doctors there could do prenatal ultrasounds.

Beyond that, it became evident rather quickly that many children needed the kind of care only Riley could provide.

So, Riley leadership and team members stepped up to provide that care.

“I think it’s a cool example of how we just go and do good work,” said Dr. Saysana. “Whoever is in front of us we help, no matter what. That’s what medicine is all about; that’s what we’re supposed to do.”

It’s also a way to support the military, she said, adding that she has a brother in the service, so it’s important to her on many levels.

“THIS IS WHY I WORK WHERE I WORK”

Dr. Elizabeth Weinstein, pediatric emergency medicine division chief, has the same philosophy. She led Riley’s response when it came to emergency medicine.

“In short order, it became clear that while the military was doing a really extraordinary job building these processes from the ground up, there are reasons that a children’s hospital exists,” she said.

Several children were brought to the ED beginning Labor Day weekend with emergent needs, Dr. Weinstein said. Some were suffering from dehydration and malnourishment, while others had longstanding chronic illnesses or congenital abnormalities, requiring inpatient care.

“We were happy to have those kids and those families with us, but we also realized quickly that we didn’t have much insight into where they were coming from – what we were discharging them home to – and we needed a better sense of the camp, their process and what we could provide to families.”

They worked with camp personnel to smooth out some of those processes, while continuing to do their best for the Afghan children.

“It is meaningful for us to take care of any child and family who needs us here in Indiana, whether they’ve been here for generations or they just arrived a couple of weeks ago,” she said.

“No matter how beaten down and tired we get with all the things happening on the healthcare front, there are these moments when you just very clearly think to yourself, this is why I work where I work,” Dr. Weinstein said.

SPEAKING FROM THE HEART

Dr. Rachel Peterson, a Riley hospitalist, has been seeing patients admitted to Riley for a host of illnesses. One of the obvious challenges for her and others has been the language barrier.

Sometimes Camp Atterbury has sent interpreters with families, but often the hospital relies on phone and video-based online interpreting services to translate Pashto and the variety of dialects the Afghan people speak.

Martti, an interpreter on wheels, has been a crucial member of the team, Dr. Peterson said. The video language service can translate in real time.

“We would be lost without it,” she said.

Like others on the team though, she has learned a few words from her patients and their parents. The one she hears the most?

Manana – thank you.

“Caring for these patients has been so wonderful,” she said. “We have a global health doctor on our team, Dr. Laura Ruhl, who runs the pediatric portion of our global health department in Kenya. She works here part of the year on our hospitalist team. With her help we’ve been able to address some refugee care issues that I didn’t know as much about.”

Dr. Peterson said she is glad to be in a position to help the Afghan people.

“I’ve felt honored to help. It’s the right thing to do.”

She can’t shake the images she saw on television in August of Afghans desperate to board planes in Kabul, traveling with just the clothes on their backs and their personal documents.

“To meet them in person, it gives me chills to talk about it,” she said. “It’s been such a privilege to carry this out at Riley, to show our Hoosier hospitality to people who are escaping a very scary situation.”

Despite the burdens of the pandemic, which have seemed never-ending to many in healthcare, Dr. Peterson said this humanitarian mission feels different.

“We can welcome them, we can take care of those who need it, and we can partner with our teams. It’s been cool to see,” she said.

STEPPING UP

Advanced practice provider Stayce Woodburn spends most of her time caring for cancer patients, but she stepped up to help when Riley hospitalists and ED team members were overwhelmed by the number of patients.

“I can tell you that the patients and their families have been so kind and so gracious to all the care providers here,” Woodburn said last week.

“For me, it’s just been a really good experience, to be able to help these families through a difficult situation and navigate clinically through whatever is going on and empower them to help get their child better and reunite them with their families at camp.”

The past 19 months have taught healthcare workers to be flexible and resilient. Caring for the Afghan people requires those same skills, as well as a healthy dose of humility, Woodburn said.

Dr. Saysana agrees. Despite the challenges, the work has been a privilege, she said.

“It’s what we do when we know there are people in need. We want them to have a better life.”

Humans caring for other humans, Woodburn said. That’s what it’s all about. That’s what she and her colleagues are called to do, whether it’s COVID or cancer or the chaos of mass evacuations from a troubled country.

“You can’t plan for when things happen, but when people need you, that’s when you have to step up. It makes me even more proud to work where we work.”

MEMORIES OF ANOTHER CHILD

Robin Wilson is a case manager on 8 East who has been busy coordinating resources for families who are inpatient and arranging progression of care as they move on to new homes away from the camp.

Many years ago, Wilson took care of an Afghan child who came to Riley for heart surgery as part of a humanitarian mission with Rotary International.

“I was really glad to be a part of it,” she said, recalling that the boy’s father spoke English, so she learned a great deal about the Afghan culture. She was struck by the man’s generosity and kindness.

Wilson sees those same traits in the Afghan guests today, when they let down their guard. “They’ve been through so much.”

TEAM APPROACH

Dr. Weinstein, who said the ED was seeing anywhere from four to 14 Afghan children a day last month, credits the entire Riley team for coming together to help.

From Dr. Saysana, whom she describes as “top-notch,” to Riley Chief Medical Officer Dr. Elaine Cox to Dr. John Christenson and his infectious disease team … she could go on.

“We are learning as we go, but we are grateful for our partners,” the emergency department physician said. “Care management has been extraordinary. Our pharmacy team has been amazing. It really has been a collective extraordinary effort to make sure we are zigging and zagging with all the new challenges associated with the care we can provide for these families.”

In a pediatric emergency department, it’s expected that healthcare workers will be seeing children and families who are struggling amid extremely challenging circumstances. In fact, it’s one of the things that makes pediatric emergency medicine special, Dr. Weinstein said, the opportunity to help families in those moments.

Riley’s Afghan guests, however, have survived experiences that not many can relate to, she said.

As for that language barrier?

“I think there are things you can do that don’t necessarily need an interpreter,” Dr. Weinstein said. “I think people feel it when you are welcoming. I think they feel kindness and compassion during a time that I’m sure is chaotic and frightening.

“Those are things that come through, at least I hope they do. I hope that is an environment we create for all of our families. It shouldn’t matter what language you speak.”

It’s pretty simple, she said, when she looks into the eyes of Afghan moms and dads.

“I see parents who love their children and want what is best for them.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/covid-nearly-killed-their-son-it-was-a-life-and-death-situation COVID-19 nearly killed their son: “It was a life and death situation” 2021-10-05T13:34:00-04:00 2021-10-20T16:01:00-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

As they look at their son lying in a hospital bed, Josh and Kristi Braziel can’t believe the way their lives have been turned upside down in the past three weeks.

But the fear they faced early on has been replaced by a feeling of anxious calm. That’s because Mason Braziel is finally recovering after a terrifying battle with COVID-19.

“It was a life and death situation,” Josh Braziel said about his son Mason’s condition.

One day, the high school senior was celebrating his 18th birthday with friends and going to see his beloved Chicago Cubs beat the Minnesota Twins. Two weeks later, he had machines keeping him alive.

HE’S A TOUGH GUY

The Braziels, who live in Crawfordsville, thought Mason had a fairly mild case of COVID at first. He rarely gets sick, they said, and never complains.

“A tough guy,” his dad said. “He doesn’t even do the fake sick thing to get out of school.”

When Mason, who was unvaccinated against the virus, started complaining over Labor Day weekend that he was achy, feverish and couldn’t taste or smell, Kristi knew it was likely COVID, and a rapid test confirmed it.

The self-taught guitar player and Cubs fanatic (he wears a Cubs shirt pretty much every day) quarantined in his bedroom, where he had access to a separate bathroom, and his parents dropped food at his door.

“He was just riding it out,” said Kristi, who at that time didn’t know anyone in her circle who had become seriously ill with the virus. “The doctor said the fever could last seven to 10 days. On the 11th day, I had him take his temperature again.”

It was still elevated, and he had a stubborn cough, so their physician recommended he get an outpatient X-ray at the hospital in Crawfordsville.

HIS CONDITION DETERIORATED

The short walk from the car to the hospital doors sent his oxygen levels plunging, and things began going south very quickly, Kristi said.

A hospital physician suggested Mason was a “happy hypoxic” – describing a patient suffering dangerously low oxygen saturation levels but who doesn’t appear to be in respiratory distress.

He was hooked up to a BiPAP machine to help his breathing, then transferred via Crawfordsville Fire Department to Riley Hospital for Children in Indianapolis, a decision that likely saved his life because Riley has an ECMO program, a form of heart/lung bypass for the sickest patients that not every hospital has.

It was a whirlwind for his parents, but they are counting their blessings now that their son has been at Riley for three weeks.

“The way this hit him so hard was kind of shocking, but it (COVID) is unpredictable,” Josh said.

For the first few days at Riley, Mason was stable. His parents thought maybe he was getting better.

“Then things just went to pot in a hurry,” Josh said.

ECMO SAVED HIS LIFE

Mason’s condition worsened, and he was intubated and placed on a ventilator, a desperate attempt to save his life. But within hours, it became clear that the damage to his lungs was worsening.

ECMO clinician Paula Miller explains what happened next.

“He was still not oxygenating well, not improving,” Miller said. “They were seeing damage to his lungs and air was leaking out of his lungs to surrounding tissue. You can feel that air when you palpate their skin. You can feel it popping under the skin.”

Mason’s lung tissue was becoming so damaged by how much support he was receiving from the ventilator that his care team, including Dr. Rachel Gahagen and Dr. Colin Rogerson, worried it might be irreversible.

The decision to move Mason to ECMO support was made quickly. There was no time to waste.

On Thursday evening, Sept. 23, Miller hooked Mason up to the ECMO circuit, which immediately began pumping and oxygenating his blood outside his body, allowing his heart and lungs to rest.

“I told his parents he’s OK. That’s the first thing they wanted to hear. He went on smoothly and stabilized right away,” Miller said. “The relief on their faces was just incredible. I can’t imagine what they went through just to get him to that point.”

Had Mason needed to be transported to Riley when he was that critical, the results could have been far different, Miller said.

As hard as it was to see their son hooked up to so many machines, Josh and Kristi were the tiniest bit relieved in that moment. They had heard the stories about patients going on ventilators and never waking up. ECMO at least offered them more hope.

“You look at somebody hooked up to it and it looks pretty rough, but you could tell he was more at peace because he wasn’t struggling to breathe. It was doing it for him,” Josh said.

“As overwhelming as that room was, it was so peaceful to see him with normal breathing and some color in his face,” Kristi added. “We know it saved his life, literally. That and all the prayers.”

“WE LANDED AT THE RIGHT PLACE”

Mason improved each day, and after just four days, he was ready to come off the life support machine.

Two days later, his breathing tube was removed, and this week he came off all oxygen support and was able to get out of bed and sit in a chair, then walk from the chair to the door and back with the help of an occupational therapist.

“AH-mazing!”

That’s how his mom put it in a text message today after seeing her son walk.

While he still has a long recovery ahead, his progress fills them with hope, pride and gratitude for his Riley team.

“From the moment we checked in here, from the doctors, to the nurses, the therapists, the ECMO team, the people at the front desk, every person here has been great,” Josh said. “We landed at the right place.”

Mason likely will move over to Riley’s inpatient rehab unit to regain his strength and mobility before going home.

“We’re just so thankful,” Kristi said. “We don’t care how long it takes. It just feels like we can exhale now.”

GET THE SHOT

After seeing what the virus did to their son, Josh and Kristi encourage everyone to get the COVID vaccine.

“You don’t want to see anybody going through what he is going through,” Josh said. “There are other people out there more important than us. Whether we think we need the vaccine or want it, it’s more about the other people.”

Miller, Mason’s ECMO clinician, has stopped in his room the past couple of nights and is thrilled with how well he is doing.

“He looks amazing.”

Mason is one of the lucky ones, she said, considering how ill he was. Not all survive.

“It’s wonderful to see a patient do this well … but all the patients we’ve seen who are this sick are not vaccinated,” Miller said, adding she hopes his story helps raise awareness of the importance of getting the shot.

“It’s just heartbreaking to know that it could have been prevented.”

The Pfizer vaccine is approved for people ages 12 and older. Approval for a lower-dose vaccine for children 5-11 is expected yet this year.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-when-its-not-just-the-baby-blues-after-giving-birth PODCAST: Maternity Matters - When it's not just the 'baby blues' after giving birth 2021-10-04T09:02:00-04:00 2021-10-04T09:04:30-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/shout-out-to-rehab-services-for-their-teamwork Shout out to Rehab Services for their teamwork 2021-10-03T16:52:00-04:00 2021-10-03T17:00:11-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Brenda Hinton wants to brag for a minute. Not about herself, but about her team at Riley Hospital for Children.

In response to a story that published last week on the IU Health and Riley social media pages, Hinton, pediatric inpatient manager for Rehabilitation Services, wanted to give her team a big shout out.

The team, which consists of occupational and physical therapists, speech and language pathologists, therapeutic recreation specialists and rehabilitation technicians, has pulled together through the demands of the pandemic and other staffing challenges, Hinton said.

“They have continued to work together to promote quality and excellence in care for all of our patients, in addition to preparing for the opening of the Maternity Tower by gaining certifications in care for our neonatal population,” she said.

The team also expanded its knowledge and skills to provide care and address rehabilitations needs of vent-dependent patients on the rehab unit.

“This team of talented and skilled therapists continued to provide top-notch care for our acute patients, adjusting their practice to accommodate the new needs of patients affected by COVID-19,” Hinton said.

The outpatient team also went above and beyond during this trying time, she added.

“During the reduction of outpatient services, this team pulled together to support not only our department but several other departments. We had therapists who assisted EVS in cleaning rooms and spaces. Our staff assisted in the scrub distribution centers. Some of our outpatient staff trained in inpatient care to assist their fellow inpatient team members,” she said.

“We are very proud of our hardworking, dedicated and committed staff in the Rehab Services department. We want to recognize and thank them for embodying all of the values of IU Health – Purpose, Excellence, Compassion and Team. They continue to shine through these tough times.”

Also deserving recognition are Ryan Cardinal, director; Angela Dixon, outpatient rehab manager; Mandy Weinzierl, audiology manager; and Lindsey Griggs, office manager.

If you would like to spotlight a team or individual who goes above and beyond, email mgilmer1@iuhealth.org

Photo by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/ecmo-offers-hope-and-peace-to-families ECMO offers hope and peace to families 2021-09-30T15:26:00-04:00 2021-09-30T16:30:04-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Members of the ECMO team at Riley Hospital for Children love the opportunity to help support patients and families who are going through some of the hardest days of their lives.

Sometimes that support comes in life. Sometimes in death.

Kathie Ratliff is a nurse who cares for critically ill children, but she is also an ECMO clinician, providing often lifesaving care to those who are out of options.

ECMO is short for extracorporeal membrane oxygenation. It is basically a life-support system giving a patient’s heart and lungs time to rest and recover from illness or injury.

The Riley ECMO team, led by clinical manager Gail Hocutt, has supported more than 1,100 patients since the technology was introduced at the hospital in 1987. It is recognized as a Platinum Level Center of Excellence by the Extracorporeal Life Support Organization.

“This is a last-ditch effort to save a life,” Ratliff said. “I love that opportunity, but sometimes it’s also about giving a family time before they have to say goodbye to their child.”

When there is no hope for recovery, families are still grateful for the chance to hold their child without tubes obstructing their little one’s face.

It’s desperately sad, of course, but also a gift to loved ones, Ratliff said.

“They are so grateful to be able to hold their child,” she said. “We are able to let them see their child’s face. I love the opportunity to give the families that.”

Penny Eldridge has been an ECMO technician for 25 years. The technology has changed, but the goal is the same – to give patients a chance at life.

“We have a lot of success stories,” Eldridge said, acknowledging that teamwork and flexibility are crucial to making the program work.

Nurse and ECMO clinician Allison Allen said apart from supporting patients and families, being part of the ECMO team has helped her form relationships with nurses, physicians and therapists in all three ICUs at Riley – cardiovascular, neonatal and pediatric – where ECMO takes place.

“I came from the NICU primarily, but it’s a good learning experience to be able to work in all three.”

Riley can support four to six patients on ECMO at one time, but having to put three on in one night is unusual. That’s what happened to clinician Paula Miller, who works nights.

“We put three patients on ECMO in one 12-hour shift,” she said, “and it was only possible because of the incredible teamwork of our dedicated Riley staff.”

Two of those patients survived.

When it was determined that the third child’s condition was incompatible with life, the team withdrew the ECMO support in consultation with the family.

“Sadly, not all of our patients survive, but for this family, ECMO gave them time to know and love their precious baby,” Miller said. “Because she was fully supported by ECMO, we were able to take her off of the ventilator and they were able to hold her for hours before we removed ECMO support.”

Multiple people came together that night to make it the best they could for that family, Hocutt said.

When the worst happens, particularly in the case of an infant, Miller and her colleagues create special memories for grieving families. Molds are made of a parent’s hands holding a child’s hand or holding tiny feet.

“We have incredible bereavement support for our families and have made many memories for them that they will cherish,” said Miller, who started her nursing career at Riley in 1988 and became part of the ECMO team in 1990.

“Families love them. It means a lot to them to have something like that to take home.”

Riley’s ECMO team received a Red Shoe Award recently for outstanding contributions to family-centered care, as well as IU Health’s Living the Values Award for Excellence.

“We have seen so many miracles,” Miller said, adding, “It’s all about the team coming together.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Related stories:

The repairman’s words stunned her: “I was ECMO Number 2” - They met over a washer and dryer, but their story goes back 32 years. Read how this Riley Hospital nurse and a stranger discovered a lifetime connection.

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https://www.rileychildrens.org/connections/bringing-mothers-and-babies-together-under-one-riley-roof Bringing mothers and babies together “under one Riley roof” 2021-09-28T13:09:00-04:00 2021-09-28T13:32:34-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

To a person, the sentiment is the same: “It’s been a long time coming.”

“It” is the new Riley Maternity Tower, which officially opens for business Sunday morning, Nov. 7, at Riley Hospital for Children at IU Health.

People who’ve been around the Downtown Indianapolis IU Health hospitals for a long time have been waiting for the day when mothers and babies could be together in the same space, even when a newborn or new mom requires specialized or ICU care.

“We’ve worked so hard to get to this point,” said Dr. Izlin Lien, medical director of the Neonatal Intensive Care Unit at Riley at IU Health Methodist Hospital, which is moving to the new maternity space at Riley.

“Especially in the last 18 months with COVID and what it’s done to our unit at Methodist,” she said. “My heart and every health provider’s heart hurts when we have to separate mom and babies right after delivery. That has been the toughest part of our job.”

ALL UNDER ONE ROOF

Dr. Laura Haneline, division chief for Neonatal-Perinatal Medicine at Riley, echoes those sentiments.

“We’re really excited about being able to take care of mothers and babies under one Riley roof,” she said. “Having the NICU and the high-risk deliveries adjacent to the medical and surgical subspecialists they need and need quickly will really be a benefit for those patients.”

Now, rather than whisking a fragile baby away from its mother at Methodist to be cared for at Riley, both can be cared for in the same space. The same holds true for moms who suffer complications and require specialized care. All of it is available in the new Maternity Tower.

“For mothers, it’s really hard to be separated from their babies,” Dr. Haneline said. “Sometimes it’s unexpected when a baby needs to be in the NICU and it may be short-term, and sometimes we know prenatally that there are going to be issues. But to have their baby completely separated from them, taken by ambulance and in another building is really, really hard.”

While many advocated for a space that offered a full complement of women’s health services, the Maternity Tower is a huge advancement in the care of pregnant women and their families, physicians say.

“You have no idea how excited I am and our NICU team is,” Dr. Haneline said. “It’s almost like coming home. I know a lot of the nurses (labor and delivery/NICU at Methodist) had never really worked at Riley, but over the past several years they’ve started to feel a little more like a Riley team.”

TEAMWORK

Even though the two entities at Riley and Methodist were in effect one team, it’s hard to feel like a team when you’re geographically separated, she said. The mile distance from Methodist to Riley might as well have been 50 miles, one physician said.

“Being together will facilitate all of our missions, including further development of patient care improvements, research, teaching and sharing of quality improvement initiatives and resources,” said Dr. Haneline, who leads a group of 47 neonatologists and has been on the Riley faculty since 1997.

Not to mention, it will improve access for babies to the medical and surgical subspecialties they need.

“The environment itself is going to be so much better for mothers and families,” she said. “We are moving into a new, beautiful unit with single patient rooms, with a dedicated family area where they will have space to store things and a lounge area. That is a big benefit for our families.”

There are 45 single-patient NICU rooms in the new tower, in addition to two rooming-in rooms and four spaces for observation or short-term admissions. In total, that represents room for 51 babies, Dr. Haneline said. Newborns who need surgery or more critical care will be moved to the adjacent NICU in the Simon Family Tower.

NICU DOC AND FATHER OF QUADRUPLETS

Dr. David Boyle, Riley neonatologist and former medical director of the Fetal Center at Riley, knows personally and professionally how important the new Maternity Tower will be for families.

His wife, Maureen, delivered quadruplets at University Hospital back in 1990, before it was part of the IU Health system. Born at 33 weeks, the quads did not require NICU-level care and were able to stay in the University special-care nursery for a few weeks before they were discharged.

Today, those quadruplets are healthy, successful adults, two of whom work in the Riley NICU – one as a nurse at Riley North and another as coordinator for the NeuroNICU program Downtown.

He knows how hard it would have been for his wife to be separated from the babies just after birth if they had needed to be transferred.

“There are so many times I can remember over the years where a mother has actually left Methodist against medical advice because she wanted to be with her baby,” he said. “We tried many things to help facilitate visitation, but it’s hard.”

Barbe Hidde, a longtime NICU nurse at Methodist who has been working closely on the Tower project with her colleagues, remembers hearing about the plans when she started work decades ago.

“At that time, my hiring manager said, ‘Just so you know, there’s a good chance we’ll be moving to Riley next year,’ ” she recalled with a laugh.

She has been pleased to lead tours of the new tower for the past several months.

“It’s very exciting to me, it’s finally happening,” she said. “And not only is it happening, it’s a beautiful space, and we’re going to give amazing care to our moms and our babies here. I’m glad I held on long enough to see it happen.”

Hidde transitioned to working with the Riley Maternity and Newborn Health service line, focused on perinatal levels of care, last year. Once the move is complete, she will return to that work as well as other training responsibilities.

Change is hard for some, she knows, but the Methodist NICU has been a Riley NICU for several years, so the practices are similar, and the care is the same, she said.

What’s unique is that in the past, moms who needed specialized care after giving birth were moved to the Methodist ICU. Now, they can be cared for in the new obstetrical ICU in the Maternity Tower.

“The amount of training that our Maternity Tower teams have been through is incredible,” she said.

RILEY SEES MANY ADULT PATIENTS

Of course, Riley has always taken care of babies. But people might be asking how a children’s hospital can take care of adult patients.

“People don’t realize that there are adult patients cared for at Riley Hospital all the time, whether they’re cardiac patients or cancer patients or cystic fibrosis patients,” said Dr. Boyle, one of a half-dozen neonatologists who staff the Fetal Center outpatient clinics for complex patients.

“The difference is the type of problems that a mother is likely to have are somewhat unique, but we have had incredible support from our adult colleagues. We will have three OB ICU beds embedded on that second floor. Those beds will be staffed 24-7 by an adult intensivist.”

In addition, he said, OB nurses are undergoing specialized ICU training to care for moms. Providers are cross-trained in intensive care medicine, as well as obstetric medicine.

Dr. Jim Lemons had a vision for a women’s hospital on the Downtown campus decades ago when he first joined the faculty. Even as Simon Family Tower was being planned (the first phase opened 10 years ago), Dr. Lemons was thinking about how the space could be used for a women’s hospital or maternity hospital, said Dr. Boyle, his colleague for 32 years.

“It was a no-brainer for many of us in pediatrics from the very beginning to do this,” Dr. Lemons said, acknowledging that he was not privy to all of the challenges that may have delayed this day.

“RIGHT THING TO DO”

The important thing is that it is happening now. And it is the right thing to do for women and children, he said, reflecting the pre-eminent care delivered by Riley neonatologists and all of the subspecialties in-house.

“It’s not just the surgeons or the urologists, it’s the ultrasonographers, the electrocardiographers, electroencephalographers, the interventional radiologists, perfusionists, nurses, therapists, the housekeeping person who makes sure the place is spotless,” Dr. Lemons said. “It’s all those people and more who have been living the life of caring for children at Riley. It’s all that family, that village.”

And it’s having all of those people together in one space that will encourage even more collaboration and support, which will enhance the experience for patients, he believes.

“The less tangible aspect is the importance of having our obstetric colleagues in the same space as our neonatologists and all the pediatric subspecialty colleagues,” said the physician, who spearheaded the founding of a Riley mother-baby hospital in Kenya in 2009.

It has been quite the journey these past months and years as the Maternity Tower has taken shape in Riley’s old NICU space before Simon Family Tower opened.

Dr. Boyle says the hard work is a credit to so many people – from leadership to nursing staff, supply chain to EVS, IT support to parent groups. The trick was to get everybody on board and rowing in the same direction, he said.

“I’m just really proud of all these people.”

NICU medical director Dr. Lien agrees.

“We have the most excellent nurses and respiratory therapists and physicians, so we already provide great care,” she said. “Now we’ll be doing it all in the same place.”

Sure, there are anxieties and sadness on the part of some team members who have worked at Methodist their entire careers. But there is excitement too, said Dr. Lien, who gets emotional herself when she thinks about closing the Methodist labor and delivery unit and NICU.

“We acknowledge all the good work that was done here,” she said. “And we move forward.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/riley-teams-lift-each-other-up-amid-ongoing-health-crisis Hospital teams lift each other up amid ongoing health crisis 2021-09-23T14:33:00-04:00 2021-09-23T15:37:26-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Last year at this time, the cookies, pizza, sidewalk art and good vibes were flowing into our nation’s hospitals daily.

Communities stepped up to show respect and appreciation for medical workers whose spirits were sagging under the weight of a pandemic that showed no mercy.

A year later? That pandemic is still raging, hospitals are still in crisis mode, and the heroes of yesterday seem all but forgotten today by many.

But not by each other.

Riley Hospital for Children has a culture of caring that runs deep. Not just in the way it cares for its patients, but in how team members care for each other.

In the past few months, Riley has experienced a surge in pediatric patients, some due to COVID-19, some due to a common respiratory virus called RSV that can be serious in small children, and some due to an increase in traumatic injuries, including gunshots.

We wanted to give Riley teams a chance to lift each other up and talk about the importance of feeling valued.

EMERGENCY DEPARTMENT SHOUT-OUTS

Perhaps nowhere has the increase in patient numbers been felt more acutely than the Emergency Department. Dr. Cory Showalter, director of the ED, and Nettie Wilson, clinical manager for the ED, pulled together this list of shout-outs that goes beyond their department to other specialties:

Chaplaincy and social work teams: For rounding on families and team members, helping support spiritual and emotional needs during this difficult time.

Case management: For supplying enormous support with COVID test callbacks and coordinating care of Camp Atterbury guests.

Riley leadership and transformation team: For helping to navigate operational logistics for ramping up the surge response and providing support to boost physician and nurse staffing to match the increased patient volume and acuity.

SPA team leadership: For contributing to rounding in the Emergency Department waiting room, helping families as they wait their turn to be seen.

IU Emergency Medicine incident command team: For supporting ED operational needs at the system level, ensuring the team and patients are well cared for.

IUH leadership (Missy Hockaday and Brian Kremer): For visiting the ED, rounding and listening to the team’s needs, then helping to bring needed resources.

Language services and the executive team: For supporting a Spanish interpreter in the evening hours.

Every EVS worker, unit secretary, tech, medic, social worker, nurse and physician who works in the department: For their dedication to patients and each other.

And finally, the families of Indiana: Who trust the health of their children to the ED team.

“A REALLY ROUGH THREE MONTHS”

The pediatric intensive care unit is another area that has been busier than usual, said service line director Dr. Riad Lutfi, who noted that while the winter of 2020-21 was not as bad as feared at Riley, this summer has made up for that.

“We had a low census in the winter. Everyone was masked, and we had strict social distancing,” he said. “Things started opening up in the spring and early summer and that was really a game changer, and then the Delta variant came around.”

The PICU has had nearly double the census from the winter months in July-September, he said.

“It’s been a really rough three months. We had to have an urgent/emergent plan to care for all these children, so we extended our coverage during the day and night.”

IU Health’s pay incentives for nurses in particular has been critical to maintaining adequate levels of staffing, he said.

“It is good to see the system appreciate the need. It is a smart investment.”

And while the extra money is nice, the nurses he knows are also motivated by wanting to help their patients and team members.

“Their heart is in the right place,” he said. “When you feel appreciated for what you do, it only adds to the joy of the work.”

That appreciation extends in other ways too, the critical care physician said, including frequent check-ins and small birthday celebrations.

“They are small things, but I think small things can help,” he said.

Dr. Lutfi understands that after 18 months of the pandemic, people are tired of living under restrictions, but he wants those who are not vaccinated to consider the risk they may pose to children who are unprotected.

Riley, like hospitals around the state and country, is seeing a surge in pediatric patients diagnosed with COVID. Most, not all, do well with treatment, but the virus takes a toll on even the healthiest body.

“It has been tough; everyone is tired for sure. We are wishing we had a little bit of a break, but we’re not sure when,” he said.

And until that respite comes?

“We will continue to support each other and be available for sick children in Indiana.”

“EXTRAORDINARY WORK” IN CVICU

Heart surgeon Dr. Jeremy Herrmann singles out the cardiovascular nurses at Riley (particularly in the ICU) for their “extraordinary” work, especially over the past few months.

“Our CVICU has been full or even over the usual capacity on many occasions,” he said. “Carrie Davison manages the CVICU and has been steadfast throughout all these difficult times. I have seen her come in overnight to help her nursing team on several occasions. She truly leads by example.”

The level of dedication and professionalism shown by the nursing team continues to impress him.

“Everyone has stepped up. Considering that so many hospitals are losing nurses for various reasons, the fact that they retain so many, especially veteran nurses, speaks to the culture of that ICU.”

From a surgeon’s standpoint, Dr. Herrmann said, the critical care nurse is irreplaceable.

“You sleep better at night knowing there are good nurses looking after your patient.”

PUTTING PEOPLE FIRST

Carrie Davison, whom Dr. Herrmann mentioned above, is clinical manager of the CVICU and leads a team of nearly 80 nurses, six patient care assistants and a unit secretary.

For her, being a leader means putting people first.

“I encourage work-life balance,” she said. “I’ve always viewed my job as taking good care of my people so they will in turn do a good job taking care of our patients.

“When we have good work-life balance, that allows the joy to come out at work and that’s what our families pick up on. They see a team of caregivers here who love their jobs, who are committed to being here.”

While COVID hasn’t impacted the unit too much, Riley’s reputation as a top pediatric cardiology program (No. 5 in the nation and No. 1 in the region) means business is booming.

August marked the highest average daily census in the unit’s history, Davison said.

And, of course, COVID is not just a challenge in the workplace. It adds stressors on the home front, whether that be concerns for at-risk family members, navigating school openings and closings, quarantining or lack of adequate childcare.

“It has added another layer of complexity to life. We’re all human, and so that impacts us here at work,” she said. “And it’s been going on for so long that it’s starting to wear some of us a little thin.”

But they encourage and count on each other.

“We have a tremendous team approach on the cardiac ICU, and that goes from our physicians to our secretary to our patient care techs to the nursing team and to our surgeons,” Davison said.

“We all count on each other to deliver excellent care to these patients. I think that when you have that vested interest in each other, it’s natural to care and be compassionate toward each other. It’s natural to try to lift each other up, but it’s also natural to try to have fun and enjoy your time together.”

Davison is proud of her team’s hard work, sacrifices and professionalism. They know their patients need them, and they need each other. But they’re also needed at home.

“Because we have that strong team and that compassion for each other, it makes us sad when we can’t be here,” Davison said. “And that wears on us. Those stresses and responsibilities outside of work are real, and that causes internal conflict.”

GIVE GRACE TO ONE ANOTHER

Amy Haskamp, clinical nurse specialist for palliative care and hematology/oncology, believes paying attention to self-care is extremely important, as is asking for help and support when you need it.

“For me, spending time with a young patient who is doing well and laughing certainly does my heart good.”

Her colleague, nurse practitioner Amy Hatton, said the hospital can be overwhelming these days.

“I don’t know that I have any insightful tips, other than to give grace to our colleagues and families navigating scary things and assume everyone is doing the very best they are capable of in this time.”

Erica Branam, a nurse on 8 West, wants to spotlight respiratory therapists as everyday heroes.

“As pulmonary nurses, we see how vital RTs are,” she said. “In a code or rapid response, THEY are who I want in there over anyone else. Especially with COVID, they are the real front line.”

The Indianapolis Indians agree. The team recognized those in the profession as Hometown Heroes during a recent baseball game at Victory Field. The event raised money for the Indiana Society of Respiratory Care, of which Beth Summitt, director of respiratory care at Riley, serves as a chapter director.

“I appreciate the opportunity to highlight the amazing work they do and the significant contribution they make in the lives of our patients and families,” Summitt said.

“WEAR A MASK AND GET VACCINATED”

Dr. Jeffrey Raskin, a board-certified pediatric neurosurgeon and director of the movement disorder and surgical epilepsy programs at Riley, acknowledges a tremendous sense of exhaustion among medical providers today.

“Beneath the exhaustion, behind the bleary eyes, under the stratified PPE, are still professional medical providers from all credentials doing their level best to deliver high-quality care,” he said.

“Therapists, nurses, hospital workers, doctors and administrators all trying to respond to the most impactful public health crisis in decades. To single out one individual would be disingenuous, because everyone is really working together right now to just not lose our collective minds.”

What can the public do for him and his colleagues right now?

His answer is simple. “Wear a mask and get vaccinated.”

If you want to give a shout out to an individual or a department, email mgilmer1@iuhealth.org and use the subject line "Team Shoutout."

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/seven-year-old-talks-about-life-with-sickle-cell-disease Seven-year-old talks about life with sickle cell disease 2021-09-22T12:05:00-04:00 2021-09-23T13:03:51-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Calina Jones-Mckinzie is ready for her close-up.

The 7-year-old patient at Riley Hospital for Children strikes a model-like pose – legs crossed and head turned to the side – when she sees the cameras.

“Action,” she says, beaming as her mother shakes her head nearby and laughs.

Calina’s personality is almost too big for her body, but her joy is infectious.

The second-grader is at Riley to see her team of specialists in the sickle cell clinic, a home away from home since she was a newborn.

Sickle cell disease is an inherited blood disorder that causes red blood cells to become hard and sticky. When they clog up blood vessels, the blood cannot bring oxygen to the body’s tissue. This often results in serious infections, chronic pain and organ damage.

In the United States, it is estimated that sickle cell disease affects approximately 100,000 Americans and occurs in about one in every 365 Black or African-American births.

RILEY OFFERS COMPREHENSIVE CARE

Riley’s Pediatric Sickle Cell Program, the largest in the state, benefits from comprehensive and multidisciplinary care to minimize trips for families and maximize assessments and interventions provided, according to program director Dr. Seethal Jacob.

“This way they can not only see the sickle cell specialist, but they can also meet with a psychologist, a pulmonologist and a neurologist to address concerns or complications that arise as part of sickle cell disease,” Dr. Jacob said.

Calina and her mom, Jeszma Jones, travel from northern Indiana to see Dr. Jacob and the sickle cell team three to four times a year. That means five to six hours in the car each time, but Jones says the journey is worth it.

“I absolutely love Riley. And so does Calina. Every time I tell her we are going to Riley, she gets super excited. This morning she woke me at 1 o’clock in the morning ready to go.”

This visit might have been a little different because Calina knew she was going to be photographed. Dressed in a bright yellow shirt with a unicorn on the front, a white skirt and tennis shoes, she bounds into the exam room full of energy.

“She’s a character,” her mom says. “Full of life, loves to laugh and to help people.”

She takes piano and singing lessons, likes to draw and watch old cartoons. And she loves baking with her nana.

But there’s more.

PUSHING THROUGH PAIN

“She’s also very determined. She’s a fighter. When she has a pain episode, she still tries to push through it, which is good but sometimes she tries to push herself a little too much,” Jones said.

Pain is part of sickle cell disease. It can be debilitating and lead to a host of other complications, but fortunately for Calina, it is manageable for the most part with heat therapy, ibuprofen and drinking lots of water.

She misses out on some popular childhood activities though, like swimming and playing in the snow because extreme cold and heat can cause her fingers and limbs to swell and pain to flare up.

She loves to play in the water, so her mom fills up a small wading pool at the home they share with Jones’ mom and lets the sun warm it before Calina can get in.

When the first snow falls, Calina would love to make a snow angel and a snowman, but special gloves and a snowsuit don’t give her enough protection.

Calina is also susceptible to colds and viruses, so COVID-19 terrifies her mom.

“Before COVID, we were already wiping things down, but now we’re triple cautious,” she said. “It is super scary. I really don’t want her to have to go to the hospital. I pray a lot.”

Jones is vaccinated against the virus, and she can’t wait for her daughter to receive that protection as well.

“Once they approve it for her age (CDC approval could come by next month), she will definitely be getting the vaccine.”

“MY LIFE WITH SICKLE CELL”

Calina is holding court in the exam room before Dr. Jacob comes in.

“This is my life with sickle cell,” the young patient says as she launches, unprompted, into a narrative about her disease.

“Well, my life with sickle cell is kind of bad. I don’t like sickle cell, but it’s a part of my body, so I can’t control it. This is my routine,” she continues. “First, the aching pain – every single night and day. It will hurt, literally hurt.”

When her mom asks her what she does for the pain, she talks about her heating pads, the medicine (ibuprofen) she takes and the water she drinks.

“I try to keep my body cool because if I get too hot, I will have aching pains on my foot, my arms or legs. My school is literally like a fire-breathing dragon,” she said.

Calina’s school has been having problems with its heating and air-conditioning system, and the heat that gets trapped in the building causes her asthma to flare up and leads to pain episodes.

Lucky for her, she has moved to a new school, thanks to her mom’s relentless advocacy. It’s something she is teaching her daughter as well.

“We have these conversations at home, and sometimes she gets emotional,” Jones said. “I tell her, ‘I understand your frustrations, but it’s something you’re going to have to live with.’

“The faster she gets used to acknowledging and coming to terms with it, the better it will be when she gets to adolescence because I don’t want her to feel like she’s different from other kids or maybe blame herself for her illness.”

MAKING HERSELF HEARD

Jones allows her daughter to hear her when she is making calls on her behalf, knowing that it’s important for her to learn to advocate for herself as she gets older.

“I want Calina to tell doctors what’s happening and make herself heard.”

Advocacy did not come naturally to Jones.

“I was a teen mom, so I had to step into that adult role and figure out how to navigate the medical side of the disease,” she said. “I didn’t know anything about sickle cell. I wish more people were aware of sickle cell. You may not look sick, but you never know what people are feeling on the inside and the pain they’re dealing with.”

When Dr. Jacob steps into the room, Calina sits up straight and talks to the physician about school, animals and her pain. The physician uses her stethoscope to listen to Calina’s lungs and heart.

When Calina asks to reverse roles, Dr. Jacob waits while her patient holds the medical device up to her white coat.

“Hear anything?” Dr. Jacob asks.

“It’s a healthy heart,” Calina responds, with her trademark smile.

Asked what she looks for during these visits, Dr. Jacob said one of the big things they pay attention to is whether there have been any hospitalizations or emergency room visits in the preceding months.

“That tells us if there are changes in disease severity,” she said. “We keep track of how many pain episodes kids have in a year. We know that the more hospitalizations they have, the more severe the disease is. Three or more hospitalizations for pain in a year increases the chances for them to have additional complications.”

Those complications can include anemia (requiring blood transfusions), jaundice, severe pain, stroke and organ failure. That’s why regular visits with Riley’s sickle cell team are so important, Dr. Jacob said.

“Her mom’s dedication to getting Calina the best care possible, and advocating for her all along the way, has made all the difference in Calina’s care.”

ACCESS TO CARE LIMITED FOR SOME

The family’s story illustrates the disparity in access to sickle cell care, not only in Indiana, but throughout the United States, Dr. Jacob said, as compared to other rare, inherited diseases.

She knows that traveling several hours to Indianapolis can be a hardship.

“Studies estimate that fewer than 70% of children with sickle cell disease receive comprehensive care, and only 20% experience effective care coordination between primary and subspecialty providers.”

While families like Calina’s may find accessing expert, comprehensive care for sickle cell a burden, it is a tradeoff they are willing to accept.

“They are willing to endure this just to have a team knowledgeable about the disease caring for their child,” Dr. Jacob said.

Riley instituted telemedicine for sickle cell care even before the pandemic and has recently received funding from the National Institutes of Health to expand to other parts of the state.

“We want our families to walk away from a visit with us feeling they have a team that cares about and supports them, while also receiving high-quality, evidence-based medical care,” Dr. Jacob said.

September is Sickle Cell Awareness Month, and Dr. Jacob wants to use this opportunity to send a message to the community:

“We need others to know that despite all we do at Riley, patients with sickle cell disease are a distinct population experiencing healthcare disparities and inequities in our nation,” she said.

“We need improved awareness about the disease within our communities, as well as increased funding and support for sickle cell centers across the country. And we need Hoosiers to stand with us to advocate for a population that has been neglected for far too long.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/retired-cardiologist-dr-randall-caldwell-named-healthcare-hero Retired cardiologist Dr. Randall Caldwell named Healthcare Hero 2021-09-21T08:45:00-04:00 2021-09-21T08:58:00-04:00 By Maureen Gilmer, senior journalist, mgilmer1@iuhealth.org

It will surprise absolutely no one who knows him to hear that Dr. Randall Caldwell doesn’t like the spotlight.

So, receiving the Indianapolis Business Journal’s Healthcare Hero Award for top physician was not on a list of honors he sought.

Nonetheless, the retired cardiologist who served patients and families at Riley Hospital for Children for nearly 43 years received that award last week during a breakfast to recognize those in the medical profession.

Dr. Caldwell, who retired Jan. 1 of this year, might have thought he was finished collecting honors for his long and distinguished career. But his Riley family wanted this recognition for him.

“Over his storied career, Dr. Caldwell served as director of the echocardiogram and pediatric heart transplant programs at Riley,” said Dr. Elaine Cox, chief medical director of Riley, in her nomination letter.

“He helped launch the heart transplant program at Riley in 1989 and helped give new lives to more than 170 children through cardiac transplantation,” she added.

His expertise and compassionate care were hallmarks of his career, influencing others, like former patient and current Riley pediatric cardiologist Dr. John Parent, to follow in his footsteps.

“As my high school years progressed and I pondered what I wanted to do with my life, it became obvious I wanted to be like Dr. Caldwell,” Dr. Parent said. “I wanted people to trust me in that way, and I was inspired to work in a field I was exposed to first-hand as a child.”

Dr. Caldwell said by phone Friday that any honors he has received must be shared with the Riley team.

“It’s very much a team effort,” he said. “The honors, while I appreciate them, are not that important to me. I’m happy to have other people at the podium.”

That humble nature defines the beloved physician, who was just the third pediatric cardiologist in the state when he joined Riley the day after completing his fellowship. The other two – Drs. Don Girod and Roger Hurwitz – were also at Riley.

Together, they elevated and expanded Riley’s young pediatric cardiology program into a world-class heart center, currently ranked fifth in the nation in U.S. News & World Report’s hospital rankings survey.

“This award really is shared among all the people I’ve worked with,” Dr. Caldwell said. “If you work with good people, it makes work a pleasure.”

Leaving Riley was not easy, but COVID-19 convinced him it was time to step away – that there was more to be done in life beyond work. But he acknowledges he has missed it.

“Riley is like a second family, not just the people I worked with but the patients too. With COVID, we were more separated and isolated, so it was very difficult,” he said.

“I felt like I was already withdrawing to some degree because of those restrictions, and I realized it was probably going to be easier just to walk away, then maybe come back some day and see people.”

Since retiring nearly nine months ago, the Indianapolis native has thrown himself into volunteer work – at his church and at Hope Center Indy, a residential program for women who’ve been trafficked.

“I’ve been doing some carpentry and painting there,” he said, “things that don’t require a medical degree.”

“I can’t sit down and do nothing, so I transferred my energies to other things.”

Hobbies are nice, he said, but he feels a duty to do more.

“When we retire, we don’t retire from life. I think it’s important to continue giving back to the community and to other people,” he said. “You have to keep investing in other people. That’s what I’m doing now, and I’m enjoying that immensely.”

Also honored during the IBJ Healthcare Heroes event:

The Riley Nursing Professional Development team, which trained nurses for redeployment during the pandemic and established a skills training lab, allowing nurses to step into patient-care roles as COVID cases climbed and staffing was stretched thin.

What they created became a blueprint for other hospitals throughout the state.

“The plan would never have been successful had it not been for the hundreds of selfless nurses putting themselves out of their comfort zone to answer the call,” said Greta Price, director of clinical professional development and patient education.

Marge Crouch, a Riley volunteer, was also recognized for her work to create the Riley Comfort Cart, “a convenience store on wheels,” providing free toiletries, snacks and other items to Riley families.

“Marge is the wings of the program,” said Susan Schwarz, Riley’s volunteer resources coordinator.

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https://www.rileychildrens.org/connections/podcast-maternity-matters-what-to-keep-in-mind-when-you-bring-baby-home-from-hospital PODCAST: Maternity Matters: What to keep in mind when you bring baby home from hospital 2021-09-20T10:05:00-04:00 2021-09-20T10:10:01-04:00

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https://www.rileychildrens.org/connections/i-wish-people-could-see-what-we-see “I wish people could see what we see” 2021-09-15T16:12:00-04:00 2021-09-15T16:42:37-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Aimee Ealy has seen the fear up close.

The fear in the eyes of young patients struggling to breathe. The fear in the eyes of parents who want desperately to see their child healed.

Ealy is 21 years into her career in respiratory therapy, a job not many understood until a pandemic thrust that role into the public eye.

She sure never expected to be working amid a global disease outbreak that has killed more than 650,000 fellow human beings in the United States alone. She never expected that two of her own children would be Riley kids either.

But life is unpredictable. And Ealy walks by faith, choosing to accept the trials along with the triumphs and follow her calling as a healthcare professional.

RILEY ANGELS

Ealy is one of the many “angels on Earth” who walk the halls of Riley Hospital for Children. That’s how at least one observer described her and her colleagues.

It wasn’t until college that she figured out what she wanted to do in life. But the career influence started much earlier.

As an asthma patient and a Riley kid herself, she was introduced at a young age to healthcare.

“I really liked the science of respiratory therapy,” she said. “I like working with the physicians and figuring things out. It involves a lot of critical thinking.”

Respiratory therapists treat patients with breathing or cardiopulmonary disorders. They also provide emergency care to patients suffering from heart attacks, drowning or shock.

Now a clinical specialist for respiratory care, Ealy does education, training and patient care, primarily on 7E, the pediatric intensive care unit.

SCARED FOR HER KIDS

Eighteen months ago, she and her colleagues in the PICU were racing to learn as much as they could about COVID-19 and how best to support patients. They ran through multiple simulations, worried not only about keeping patients safe but keeping themselves safe.

“It was really scary at first because I was worried that I might bring this home to my family,” Ealy said. “I have two children who wouldn’t fare very well with it.”

Ealy and her husband, Dan, have three sons, ages 19, 17 and 15. The oldest battled cancer two years ago, and the middle son has Duchenne Muscular Dystrophy, a rare genetic disease that leads to progressive muscle degeneration.

Those early days of the virus were pretty scary. But things didn’t get really hairy in terms of patient load at Riley until this summer, she said.

“Between COVID and RSV, we’ve been hit really hard. It’s horrible. When I go in, I know that I’m probably not going to get a lunch break and never leave the unit. It’s just so busy. It’s 12 hours of not sitting down, just being slammed.”

RESILIENCE AND HEART

Beth Summitt, director of respiratory care at Riley, has known Ealy for her entire career. The two were in school together, though Summitt was a couple years ahead of Ealy. They worked side by side for years until Summitt took a leadership role 2½ years ago.

“Aimee is one of the most respected people in our department. She is clinically amazing, and she has a heart of gold,” Summitt said. “She’s one of the most resilient people I know.”

But even Ealy is anxious about the rising patient load at Riley. And when it comes to COVID, she wishes she could show people how bad it is.

“I’ve been doing this for 20 years, and I wish people could see what we see. I think they would take it more seriously,” she said. “You don’t understand what this does. People will say, well, they didn’t die, so it’s OK. It’s not just death. It’s seeing what these families go through. These kids come in, they’re scared, they can’t breathe, they see all this stuff on the news.

“To see these kids go through that, and when they look at you and say, ‘I can’t breathe,’ it’s hard. Say your child does get it and they survive,” she continued. “If they’ve been in intensive care, it’s months of rehab, it can affect the heart.”

In the most serious cases, which is what she sees in intensive care, it’s Ealy’s job to intubate patients by putting a breathing tube down their throat. She tries to reassure the child and parent that she is going to help them breathe, “but I also don’t want to say everything’s going to be OK.”

Because she doesn’t know that.

“They are just so sick.”

VACCINATIONS ARE KEY

At first, she was frustrated when she would hear people say that the virus only affected older people and those with co-morbidities, such as diabetes, heart conditions, asthma, etc.

“Those people are not disposable. My sons are not disposable. My parents are not disposable.”

With the introduction of vaccines in December 2020, her anxiety leveled off, especially this year when she was able to get all of her teenage sons vaccinated.

But now, the virus is coming for kids, a large swath of whom are unable to be vaccinated yet.

The American Academy of Pediatrics warned this week that the number of COVID cases in children has risen “exponentially,” accounting for nearly 30% of new cases last week.

“My house is vaccinated, so that was a relief,” Ealy said, though she worries about breakthrough infections, which are rare, according to the CDC, and typically don’t result in serious illness.

Overall, more than 9 in 10 COVID hospitalizations and deaths now occur in people who are unvaccinated, studies have shown.

Ealy has seen death in the PICU. She wouldn’t be human if it didn’t shake her.

The past year and a half have been traumatic for everyone, she said. From sickness and death to mental illness and isolation, it all takes a toll.

“There is so much misinformation out there,” Ealy said. “What frustrates me is people will trust us when their child is sick, but they won’t trust the medical community when it comes to vaccines.”

CALMING FEARS

Summitt has watched Ealy and the other 140 members of the RT department rise to meet the COVID challenge at Riley Downtown, IU Health North, Riley at IU Health Methodist Hospital and Methodist labor and delivery, soon to be moving to Riley’s new maternity tower.

“In the height of COVID the first time (2020), I could tell that my team was going to battle significant fear, because this wasn’t just something we were going to face at work. We’re all facing this in our personal lives as well,” Summitt said.

“We started seeing the numbers spike and I was having more and more team members out with COVID, and we had to figure out how to handle that with privacy concerns,” she said. “There was just this extreme panic and fear.”

She calmed those fears with the best thing she could offer – information and communication. She began doing twice-daily group calls with her team, updating them on rapidly changing procedures, sharing as much information as she could about protective equipment, the number of ICU beds that IU Health had available and the number of ventilators in use.

“I had to be the voice of calm for my team and tell them we’re going to get through this,” she said. “This is why you came into healthcare. We are the emergency people. Respiratory therapy is who they call when it is literally hitting the fan. We’re the airway people. This is your day.”

It was a rallying cry.

HEROES AT THE BEDSIDE

Never before had she seen respiratory therapy highlighted on the news like it has been during COVID. She used it to motivate her team in those early months, then she gave them the facts.

“This is what I know today; it’s going to change tomorrow,” she would tell them, because guidelines and procedures were constantly changing to meet the evolving threat.

Ealy found those calls extremely helpful.

“As we learned more, we changed not only how we cared for our patients, but how we protected ourselves,” she said. “It also put to rest any rumors that may have started.”

Today, even though cases have risen, the team feels better prepared to handle the crisis because they have learned so much over the past 18 months. That experience and her sons’ illnesses have made Ealy a better clinician, said Summitt, who also has a child who is a Riley patient.

“You think you’re a compassionate person, but when you’re really on the other side of the bed and it’s your child that people are taking care of, it’s just amazing how you look at that situation differently,” Summitt said.

“Now, giving the best care designed for you is not just a slogan. We know what that looks like. We know when it’s done well and when it’s not. It has changed both of us.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/from-pint-sized-preemie-to-active-toddler From pint-sized preemie to active toddler 2021-09-14T15:47:00-04:00 2021-09-14T16:25:51-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

When Deanna Adams looks at her active, joyful little girl, Kailey, she knows she is blessed. Yet she can’t help but see who is not there, Kailey’s twin, Leigha.

The girls were born nearly three months’ prematurely in October 2018 at an Indianapolis hospital. Kailey weighed 1 pound, 14 ounces. Her sister weighed 2 pounds but lived just six hours. Within two weeks, Kailey was transferred to Riley Hospital for Children, where she would stay for three months.

“I think about those days all the time,” said Adams, who now lives in Lafayette with Kailey, who turns 3 next month, and her two older sisters. “I think about how far she’s come and how worried I was. If I could go back and tell myself then what I know now, maybe I wouldn’t have worried so much.”

There was not a lot of sleep in those days, Adams said, but it helped to bond with other moms and dads who were going through the same experience. Sadly, some of those children didn’t survive, and Adams grieved with their parents, just as she did over the loss of Kailey’s twin sister.

“I feel it. I share that pain,” she said.

She was in awe of the Riley nurses who helped teach her how to care for her fragile baby.

“There were a couple instances where she completely stopped breathing,” Adams recalled. “Once, she turned purple and I was just freaking out, and all of the nurses were so calm and got her breathing again. I was like, I can’t do this.”

But she could. And she did.

“The nurses were so supportive. They talked me through everything, they showed me things multiple times.”

Adams rarely left Riley, so she learned early on how to participate in her daughter’s care, gaining confidence along the way.

“I was taking it all in, and they were really encouraging, telling me, ‘You’ve got this.’ ”

When Kailey was discharged, she went home on oxygen support and a feeding tube, but today the 22-pound toddler is free from that supportive equipment. She has been participating in First Steps to get her caught up developmentally and is excited about starting preschool soon, her mom said.

She not only walks as well as any 3-year-old, she runs – fast.

“She loves to run around and get into trouble,” Adams laughed. “She’s fast, and she’ll tell you she’s fast.”

Kailey’s fine motor skills are improving too, though she still prefers to eat everything with her fingers, Adams said. She has a lot to say and has a decent vocabulary, but she is still learning how to string words together into sentences.

What she loves most of all is playing with her older sisters, doing her best to be like them, especially when that means playing games on her tablet and wearing her little headphones.

That’s why she’s so excited to go to preschool. She has her backpack ready and wants to follow in their footsteps.

COVID-19 has been a dark cloud over the family these past 18 months, Adams acknowledged, leaving her feeling anxious and super-protective.

“COVID scares the crap out of me,” she said with brutal frankness. “I try not to go anywhere with her if I don’t have to.”

Kailey still follows up with the pulmonary team at Riley due to respiratory issues at birth, so her mom is vigilant about keeping her and her sisters safe.

“Even though I’m vaccinated and my oldest daughter is vaccinated, we always wear masks wherever we go. We’re constantly sanitizing. If I have to take Kailey out, she has her mask. I give her a pacifier and put a mask on over it and she keeps the mask on.”

The Delta variant of COVID-19 is highly transmissible and is striking more and more children. In fact, Riley Hospital currently has more than double the number of pediatric patients hospitalized with the virus than at the pandemic’s height last year.

There is not yet a vaccine available for kids ages 0 to 11, but those 12 and older are eligible to receive the Pfizer vaccine.

“It’s extremely scary right now,” Adams said.

Lucky for her, Kailey is too busy living life to notice.

September is Neonatal Intensive Care Awareness Month, designed to honor NICU patients, families and health professionals.

Photos submitted. 2018 file photo by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-milk-lab-at-riley-hospital-for-children PODCAST: Maternity Matters - Milk Lab at Riley Hospital for Children 2021-09-13T08:06:00-04:00 2021-10-20T16:36:53-04:00

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https://www.rileychildrens.org/connections/how-to-manage-kids-screen-time How to manage kids' screen time 2021-09-10T15:27:00-04:00 2021-09-10T15:35:30-04:00 While screen-based technology has helped people continue work and school during the pandemic, remote learning and working from home have made it difficult for many children and adults to limit daily screen use.

Excessive use of computers, tablets, TVs and smartphones can cause a variety of health issues, including difficulty sleeping, weight gain, vision and attention problems, mood disorders, and more.

The American Academy of Pediatrics recommends the following screen time guidelines for children:

  • 0 to 24 months – No screen time other than video calls or chats with relatives or close friends
  • 2 years to 5 years – Limit screen use to one hour per day of high-quality programming
  • 5 years and older – Two hours of screen time per day

“With children learning remotely and parents working from home, it’s understandable that many parents—and even adults, for that matter—are finding it difficult to limit screen time,” says Emma Hollingsworth, MD, a family medicine physician with IU Health Physicians Family Medicine in Indianapolis. “While we need to give ourselves some grace in this unusual time, it’s important to keep screen time limits top of mind and look for alternative ways to spend time when screens are being used just for recreation or to pass the time.”

Tips for limiting screen time

Setting limits for screen time is often easier, Hollingsworth says, when both adults and children in the family follow the same rules. Some suggestions include:

  • Establishing a cut-off time at night for screen use. Designate a place for all phones, tablets and laptops to be stored at the end of the day.
  • Keeping smartphones and other mobile devices out of bedrooms overnight. Charge devices in a central location downstairs; use a traditional alarm clock for waking in the morning.
  • Making mealtime screen free. This helps encourage family connection. It also prevents mindless eating and enables both children and adults to notice when they are full.

Managing screen time for different ages – younger kids, teens and adults, too

“For younger children, we recommend that whenever possible, parents watch programming with their child and use it as something to talk about together—instead of just something the kids do on their own,” Hollingsworth says.

Staying on social media and using mobile devices late at night are areas where older children and teenagers often struggle.

“Social media and screens are addictive,” Hollingsworth says. “If it’s difficult for an adult to put down their phone and not check Instagram several times a day, then think how hard it is for a teenager who doesn’t have as much life experience with setting limits.”

Encouraging children and teens to take part in other activities, such as sports, a hobby, or something that doesn’t rely on a screen, is one of the most important things parents can do to help set healthy boundaries for screen time.

“I always tell parents to work toward getting their child to do at least one physical thing a day that gets them up and moving and one creative activity a day,” she says. “Using screens just to pass time is less likely when kids are busy with other healthy activities in their life.”

While the focus tends to be on setting screen time limits for children, adults also should be mindful of screen time habits. Because adults can experience similar health effects from excessive screen use, Hollingsworth recommends limiting screen time to essential tasks and taking breaks from screens when they are necessary for work or school.

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https://www.rileychildrens.org/connections/for-me-this-was-the-best-way-to-protect-my-baby “For me, this was the best way to protect my baby” 2021-09-09T14:31:00-04:00 2021-11-10T11:16:33-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Three women. Each one pregnant, each one a healthcare worker during an uncontrolled pandemic.

After learning as much as they could and talking to their doctors, each one decided to get the COVID-19 vaccine earlier this year. Now, they are practically begging other pregnant women to do the same, understanding that some are still fearful.

Nationwide, just 23% of pregnant women are vaccinated against COVID-19, according to data released by the Centers for Disease Control last month. Less than one in four.

That is despite growing evidence that moms-to-be are at higher risk for serious disease should they contract the virus and studies that show the vaccine is safe for pregnant women and their unborn babies.

“I WAS CAUTIOUS”

Armisha Desai is a pharmacist at IU Health Methodist Hospital and a new mom. Her son, Ayur, is 8 weeks old. She could have been vaccinated in late December 2020 when the Pfizer vaccine rolled out to healthcare workers, but she elected to wait a couple of weeks until January.

“I was vaccinated at the start of my second trimester,” she said. “I was cautious, I talked to my OB provider. With the side effects of fever and fatigue that you can get with the vaccine, we decided to wait just a little longer. But as soon as I reached 12 weeks, I scheduled my appointment.”

She had no side effects from either dose and carried her son to term. Ayur is getting breast milk from his mom, which she believes is increasing his immunity to the virus. When it’s time for her third shot this fall, she will be ready.

“I want to get my third shot to increase my antibodies in my breast milk and pass those antibodies on to him,” she said. “Any potential benefit out there I want to take.”

Desai, who is on maternity leave until next month, specializes in infectious disease pharmacy, so she has worked (indirectly) with many COVID patients admitted to the hospital in the past year.

“I know firsthand that pregnant patients have more severe complications with COVID than other young people. It’s much safer to get the vaccine than to be pregnant and get COVID.”

She helped IU Health develop treatment algorithms for COVID and discussed with providers which patients met which qualifications for therapies.

“The data show that the vaccine is safe for pregnant women,” Desai said.

Those who get the vaccine are not only protecting themselves, they are protecting their babies, experts say.

“That’s what mothers want – to protect their babies,” she said. “For me, this was the best way to protect my baby. I’m passionate about this as a new mom.”

SEVERE OUTCOMES CAN BE PREVENTED

Dr. Lana Dbeibo, medical director for infection prevention at Methodist Hospital, said her heart breaks for pregnant women who are unvaccinated and struggling in the ICU because of COVID.

“We are seeing pregnant women who are unvaccinated who have concerns over the vaccine causing problems for them or their babies, and they are coming into the hospital sick, especially considering their age,” she said. “They are really getting sick, requiring oxygen and intensive care support at times, and I really feel like this is all preventable.”

The CDC encourages all pregnant women and those who are thinking about becoming pregnant, as well as those who are breastfeeding, to get vaccinated, said CDC Director Dr. Rochelle Walensky in a statement released last month.

“The vaccines are safe and effective, and it has never been more urgent to increase vaccinations as we face the highly transmissible Delta variant and see severe outcomes from COVID-19 among unvaccinated pregnant people.”

Those outcomes can include oxygen support, being put on a ventilator, pre-term birth, even death.

Dr. Christina Scifres, division director for Maternal Fetal Medicine at Riley Hospital for Children at IU Health and associate professor of obstetrics and gynecology, said she and her team have been concerned about COVID in pregnancy since the pandemic began last year, but the Delta variant appears to be making more pregnant women very sick.

Why that’s happening is unclear, but Dr. Scifres said it could be due to changes in the immune system or pulmonary system related to pregnancy.

“We’ve had women admitted to the ICU and needing to be on a ventilator and even needing to be on an ECMO machine (heart-lung bypass),” she said. “There have been some maternal deaths in Indiana and around the country.”

READY FOR HER THIRD SHOT

Dr. Dbeibo, who was breastfeeding her first child when she got the vaccine and is now pregnant with her second child, said she would absolutely get a third shot while pregnant if that is recommended this fall.

“I can’t imagine advising women to do something that I wouldn’t do myself,” she said. “If I didn’t believe in it, I wouldn’t be giving that advice. We know the vaccines work for everyone, including pregnant individuals. We know with more and more data that it’s not going to cause harm to them or their unborn child. It prevents hospitalization, bad outcomes and death.”

The sooner a woman gets the vaccine, the sooner she and her child are protected, the infectious disease specialist said.

“Mom is the closest person to the child, so if she gets infected, the risk of transmission to the child is high. The rates we’re seeing right now with this variant are sky-high.”

While no one should consider themselves at low risk for getting exposed, no matter how careful they are, the vaccine prevents more serious illness, Dr. Dbeibo said.

“Even though these women are younger, we are seeing younger people in the hospital, and the fact that they are pregnant actually does put them at risk for having bad forms of COVID,” she said. “Pregnant women have a higher chance of admission to the ICU compared to others, and they are at higher risk of adverse pregnancy outcomes.”

AN URGENT PLEA

Each of the women interviewed for this story is desperate to communicate the urgency of pregnant women getting vaccinated against the deadly virus. Conflicting messaging over the past 18 months has left some skeptical of the seriousness of the disease, despite a death toll now of more than 650,000 in the U.S. alone.

The vaccine rollout was supposed to put COVID-19 in the rearview mirror, but nearly half of the U.S. population is yet to be vaccinated, including children (for which there is no approved vaccine yet for ages 0-11).

“We’re talking about getting protected at a time when the pandemic is at its worst,” Dr. Dbeibo said. “Not only are infection rates high, but hospitals are almost full. We have something that is lifesaving for us and we have a pandemic that is raging, completely uncontrolled, and we’re still in the summer,” she said.

“We haven’t seen the worst of it yet and we’re already at capacity. The health system is overburdened. I worry about pregnant women having access to good care because hospitals are full, and they could have averted that outcome by just getting a shot.”

Now six months pregnant, Dr. Dbeibo understands the hesitancy some women feel about the vaccine, but she urges them to consider the consequences of doing nothing.

“I totally understand that they don’t want to do something excessive that might have a risk. But I would emphasize that COVID will hurt their baby much, much more. I can’t imagine a mom who is delivering her baby while she’s intubated and can’t have those first moments with her baby. Or the baby getting an infection from the mom while their immune system is basically nonexistent when they are born. That will hurt the baby. Losing their mom will hurt the baby,” she said.

“So, no, you won’t be hurting your baby with the vaccine. COVID will hurt your baby. I think the fear is misdirected – it should be fear of the virus, not the vaccine. We don’t know what the virus is going to do to us. It’s not a benign thing. We can’t say we’ll get it and get over it. There is a significant risk, and it is certainly higher than the vaccine.”

CONVINCED BY THE DATA

Dr. Geeta Karnik Mantravadi, medical director of IU Health LifeCare and an infectious disease specialist at Methodist, delivered her baby boy in May. He is her first child, the result of many years of trying to conceive and carry a child to term.

“It took us a while to get him,” she said, “and you always worry. He was my precious baby and this (the vaccine) was new. So I definitely understood other women’s concerns, and I did want to wait a bit to have more data come out.”

But she also understood the risks better than most. She worked on COVID units at Methodist in 2020 and had seen firsthand as an infectious disease specialist how pregnant women were coming in with more serious forms of the virus.

She was fortunate that when she became pregnant she was able to step away from her work in the units, which gave her a little time to think and not risk exposing herself before she was vaccinated.

“It was always a matter of weighing risks and benefits, and ultimately the data has shown that the vaccines are safe and effective,” she said. “When I made my decision to get it, I felt really confident because there had been such good CDC analysis and other data demonstrating that there were really no safety concerns.”

Dr. Mantravadi said anytime she felt herself hesitating about getting vaccinated, she had flashes of real-life unvaccinated patients who suffered severe illness, pre-term labor, miscarriage.

“Those images and stories flashed in my mind, and I realized it’s way better to get the vaccine. And now women have the benefit of nine months of data. It’s a no-brainer.”

She received the vaccine during her second trimester, and although her son was born six weeks early after she developed pre-eclampsia, he was perfectly healthy, she said.

She has done her best to correct misconceptions about COVID and the vaccine with patients, friends and acquaintances, but she worries about the higher transmission rates of the Delta variant and what it could mean down the road.

The vaccine isn’t bullet-proof, she said, but not getting it carries a much greater risk.

“The vast majority of people being admitted to the hospital are unvaccinated individuals,” she said. “It’s just so clear how risky it is at this point. For me, it was a personal decision, but everyone wants to be a good mom and that means making hard decisions. The first step these days is getting the vaccine.”

A GLIMMER OF HOPE

As the healthcare system around the country continues to be upended by the virus, Dr. Scifres and her Maternal Fetal Medicine team continue to stress the safety of the vaccine during pregnancy with their patients.

“We’ve certainly never seen anyone hospitalized from taking the vaccine, but we’ve seen plenty of women hospitalized from COVID,” she said. “And the patients we’re seeing who are getting very sick have not been vaccinated.”

In talking with patients, she knows that some women are concerned because of something they might have seen on social media or heard from a friend, so she does her best to reassure them.

Maybe the message is getting through.

“I do feel like we’re seeing more pregnant women get vaccinated, and I think that brings us all hope,” said Dr. Scifres, a mother of two. Her older child is vaccinated, and she is holding her breath until the younger one can be, she said.

“I want to let patients know that we make this recommendation out of an abundance of care for them and their babies. We want to do everything we can to protect them.”

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https://www.rileychildrens.org/connections/a-hero-in-scrubs-picu-nurse-leaves-a-legacy-of-love A hero in scrubs, PICU nurse leaves a legacy of love 2021-09-09T08:07:00-04:00 2021-09-09T08:18:57-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

They came in their beachy attire, their Hawaiian shirts and grass skirts, with smiles on their faces masking tears in their eyes.

They came to say goodbye, I love you, thank you.

They came to lift up Lisa Fouse Roberts, beloved friend and co-worker, as she eased her way out of this world on hospice after a five-year battle with incurable, metastatic breast cancer.

About two dozen people, most representing the pediatric intensive care unit at Riley Hospital for Children, surprised Lisa at her home on the last Sunday in August. The PICU squad brought signs, balloons and memories to share.

If you stretched the sign boards out, they spelled “Lisa we love you to the beach and back.” The beach theme was a tribute to Lisa’s favorite place in the world. The only thing that might have made it better would have been margaritas for all. (Adults, that is.)

They took turns sharing memories, funny stories and lessons they learned from their friend, colleague, mentor and role model. All of it captured on a recording to be savored by Lisa’s family in the days to come.

Charge nurse Jane Watson even did a little singing, karaoke-style, to the tune of “American Pie,” taking some creative licensing with the lyrics.

“I can’t carry a tune, and to do this in front of all these people, well I wouldn’t do it for anyone else,” Watson said.

That’s how much Lisa was loved.

“I’M SO GRATEFUL OUR LIVES CROSSED PATHS”

Lisa Roberts worked in Riley’s PICU for nearly 20 years. She was the nurse every young nurse wanted to be, the nurse every parent wanted for their child.

She was the total package. Wise, experienced, calm, compassionate. She often knew what a patient or parent needed before they knew it themselves.

Tiffany Johnson was one of those parents. Her daughter, Ayana, was one of Lisa’s patients 18 years ago. Ayana was hospitalized at Riley for nearly a year after her birth.

“As long as Lisa was there, I didn’t have anything to worry about,” Johnson said. “She was everything to my daughter. When I was not there, she was the mommy. She kept me sane during that very tumultuous time.”

Lisa always had an encouraging word and made sure Johnson understood everything the doctors said about her little girl, who just celebrated her 19th birthday.

“I’m so grateful our lives crossed paths.”

DIGNITY AND GRACE

Dr. Veda Ackerman, who retired from Riley a year ago, worked with Lisa for more years than she can remember. But she’ll never forget the impact she had.

“Lisa has always been an outstanding nurse and an outstanding mentor to young nurses, but when she was diagnosed several years ago, she just never let it stop her. She came to work and did an amazing job with the patients, and I think she demonstrated so well to a younger generation the whole process of commitment and doing what’s right for yourself.”

By that, Dr. Ackerman means Lisa chose her own path in her five-year journey with cancer. Told she could live anywhere from three months to 10 years, she chose not to have some of the more aggressive treatment that would have left her unable to work, unable to care for her two kids.

“I think her legacy will be showing this younger generation that it is appropriate and good to plan your own destiny,” Dr. Ackerman said. “She is demonstrating that you can have death with dignity and grace, and I think she practiced that with our patients who couldn’t survive.”

“SO MANY LAYERS TO LISA”

Her cancer journey has been marked by courage, according to Watson and other nursing colleagues.

“There are so many layers to Lisa,” said Watson, describing her friend as “a quiet, private, humble person who just does her job.”

“When she got diagnosed and they gave her three months to 10 years, I don’t know what you do with that. But she just showed up and lived her life.”

In fact, many of the younger nurses she worked with didn’t even know she was sick. Up until July, she was still working full time, giving her all to patients and families as if everything was normal in her own life.

“Her courage has been a testament to so many people,” Watson said. “Here she was giving excellent, compassionate, bedside care and her own life was falling apart. She didn’t know how long she was going to live, but she still showed up. She was never the victim.”

Working in the PICU is not for the faint of heart. Patients are critically ill or injured, and they often can’t speak for themselves. And while the meds and the machines are crucial, so too are the little things that Lisa practiced. Whether that was flossing a child’s teeth, brushing their hair or bringing them an extra blanket, it was all part of the care she provided.

“From a charge nurse perspective, I just loved it when I saw her name on the roster because I knew she had things under control,” Watson said. “The longer I do this, the harder it weighs on my heart what these parents have to go through and what these kids have to go through, but it always brought me comfort on those days when our gift to them in all the darkness and all the stress was Lisa.”

Not only a gift to her patients, Lisa was a mentor and a friend and a shining example of how to be a good nurse and a good human.

She and her former husband, Jack, were foster parents for years and adopted two of those foster children several years ago.

“It takes a lot to open your heart to work in the PICU,” Watson said, “but to open it up beyond that to bring these kids into your home and you have no idea what you’re signing up for … I feel like I have a big heart, but it’s not that big.”

FINDING HER PURPOSE

Lisa was a constant source of encouragement for her nursing colleagues, especially when they have doubted themselves.

Kelsi Lawless remembers a day a few years ago when she struggled to come up with the right words to tell a dying teenage cancer patient what the road ahead might look like. Lisa was outside the door and heard what she said.

That evening, when Lawless began to question privately whether she had what it took to be a PICU nurse, Lisa posted a comment on the unit’s private Facebook page, saying how impressed she was with the grace the team showed that day and how she hoped it would be the same for her when her time came.

It was just what Lawless needed to hear in that moment.

“In the PICU, we struggle with anxiety, depression and PTSD from what we see, but the biggest thing she taught me is how you can take your own experience and set it aside and continue to make an impact on the world despite the heaviness of your own journey,” Lawless said.

Lisa was also a straight shooter, something the PICU team appreciates. Sugarcoating situations can leave everyone blindsided when the worst happens, Lawless said.

“She has been so important to younger nurses, showing us how to give patients respect, dignity and a voice in their care, depending on their age. She made me feel that my purpose in life is to be here, and I want her to know that. It’s huge to help somebody figure out their purpose.”

That’s why she wanted to be sure Lisa knew how much she has meant to so many.

“We live day to day, and we don’t tell people how much they impact us. I’m glad we were able to do that for her.”

“AN AMAZING LEGACY”

The nurses mentored by Lisa are fortunate, Dr. Ackerman agreed. They are strong because she taught them how to be strong.

“She’s been so influential in so many young lives,” the retired critical care physician said. “She leaves an amazing legacy of outstanding peds ICU nursing.”

And death is part of the PICU.

“We have a lot of people who can’t talk about it easily and certainly would have a hard time talking about their own death,” Dr. Ackerman said. “That shows you what kind of nurse she was. She could talk about anything and help families on that journey. It’s pretty amazing the example she set for those families who never knew what she was dealing with personally.”

When it came time to surrender to the illness that robbed her of her ability to work after living with her diagnosis for five years, Lisa decided home was where she wanted to be.

That decision alone took a wealth of courage, Watson said.

To honor that courage, that resolve and that commitment to live her best life to the end, her PICU family gathered around her on Aug. 29 to hold her in the warmth of their love.

They sang and danced. They laughed and cried. They prayed for their friend, who greeted their smiles and tears with her own.

If they could have gotten her to a beach with a margarita in hand, that’s what they would have done. But feeling the love on that day surely reminded Lisa of the sun on her face and an ocean breeze at her back.

“Your legacy will remain in the halls of the Riley PICU,” Watson told her friend. “You have made us all better people.”

Lisa passed away at home Tuesday night with her family by her side. She died as she lived, with grace and dignity, with love in her heart.

Photos by A.R. Davis Photography

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https://www.rileychildrens.org/connections/riley-earns-top-marks-from-american-college-of-surgeons Riley earns top marks from American College of Surgeons 2021-09-07T12:05:00-04:00 2021-09-09T09:43:33-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Riley Hospital for Children received news last week of yet another honor that demonstrates its leadership in pediatric healthcare.

Riley at IU Health was awarded Level 1 verification from the American College of Surgeons, one of fewer than three dozen children’s hospitals in the country to achieve the designation and the only one in the state, according to Dr. R. Cartland Burns, medical director of children’s surgery.

“It’s a big deal. It shows our commitment to continuous improvement and to quality outcomes,” Dr. Burns said. “Really it’s a demonstration of the degree of commitment and effort that the hospital puts into making sure that we are providing the best possible care.”

The distinction is analogous to the Level 1 trauma designation Riley holds in terms of prestige, except it’s for the entire hospital, he said.

As such, it requires “tremendous support” from everyone in the hospital, Dr. Burns said, adding the infrastructure has to be in place to demonstrate the hospital’s commitment to the program.

In announcing the top-tier verification achievement, Dr. Douglas C. Barnhart, chairman of the ACS Verification Committee, said this:

“Children’s surgery verification formally acknowledges your commitment to providing and supporting quality improvement and patient safety efforts for children who require surgical services. As a verified program, you have demonstrated that your center meets the needs of your patients by providing multidisciplinary, high-quality, patient-centered care.”

The verification program is fairly new, born out of a recognition that many children were being cared for in hospitals that did not have all of the resources necessary to care for the sickest and most complex patients.

ACS sought to perform a review of hospitals, focusing on the optimum resources for a child being treated in the surgical setting.

“It looks at all aspects of hospital services – transport, outreach, education, ability to manage emergency surgical patients, our relationship with the Emergency Department, the PICU and NICU and how the surgical services work together in the whole hospital environment to support the most comprehensive children’s surgical care,” Dr. Burns explained.

In its verification report, the ACS said Riley has a strong presence in the state and region with multiple outreach clinics that improve access to Riley’s specialty services.

“Riley Hospital for Children is a premier pediatric hospital providing a full range of pediatric medical and surgical care,” the report said. “The faculty are collaborative and collegial and committed to providing high-quality care. The hospital has a strong commitment to nursing education and role development. There is a robust surgical research program and funding, (and) the children’s surgery team is experienced and deeply committed to surgical quality.”

Riley also provides leadership in various arenas, including multiple appointments to the Indiana State Trauma Care Committee, educational offerings, involvement in the Midwest Pediatric Surgery Research Consortium, multiple pre-hospital protocols (including for traumatic brain injury) and several satellite locations to provide care, the report said.

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https://www.rileychildrens.org/connections/newly-approved-drug-gives-hope-to-neuroblastoma-patients Newly approved drug gives hope to neuroblastoma patients 2021-09-01T07:39:00-04:00 2021-09-01T08:03:04-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Since just before his fifth birthday, Aidan Brown has been battling a monster.

The monster’s name is cancer, and it has been a formidable foe.

Now 16, Aidan can barely remember a time without the disease, which has come back again and again.

“I don’t really remember much from before cancer,” the high school sophomore said. “Unfortunately, it’s a big part of my life and not in a good way.”

All that said, Aidan is living life as best he can. He likes to be active – rock climbing, tubing, playing tennis and basketball – and he likes his video games. But he also loves watching sports, basketball mostly, and dreaming about the day he can join the NBA. Not as a player, but as a general manager.

“Aidan loves everything NBA, anything to do with basketball,” said his mom, Michele Brown. “He’s a savant of statistics.”

She acknowledges having mixed feelings about his passion for video games but appreciates the connection they offered her son to his friends during much of his treatment amid COVID.

DEVASTATING DIAGNOSIS

The Brown family, which also includes dad Christopher and Aidan’s older brother, Alex, moved to Indianapolis from Washington, D.C., when Aidan was a toddler.

In 2010, just before he turned 5, they received the shattering diagnosis of Stage 4 neuroblastoma, an aggressive, life-threatening cancer that most commonly attacks the early nerve cells in children. Symptoms include a lump in the neck, chest or abdomen, bulging eye, darks circles around the eyes and bone pain.

Neuroblastoma represents about 7% of all pediatric cancers, mostly in kids younger than 5.

Aidan underwent a tumor resection, then received chemotherapy and radiation treatment at Riley Hospital for Children.

In 2014, he relapsed, then again in 2020.

“We are eleven years into this,” Michele Brown said. “It’s hard to believe. We’ve had years of thinking we made it out of the fire and we were good, and then we weren’t.”

During that time, Aidan received some of his treatment at Memorial Sloan Kettering in New York, which had access to an immunotherapy drug approved for emergency use for high-risk neuroblastoma patients.

That drug, then referred to as 3F8 and now marketed as Danyelza, is available at Riley, one of a handful of pediatric hospitals that offer the treatment. It has made the past few months a little easier for the Brown family.

“I THINK I CAN HELP YOU COME HOME’

“We’ve had this mixed world between two hospitals, and the partnership has become easier to navigate over the years now that the treatment is available at Riley,” Michele said.

She heaps praise on Dr. Jamie Renbarger, division chief for pediatric hematology/oncology at Riley, who helped ensure that Aidan could come back to Riley to finish his treatment with the drug earlier this year after he had to spend several months in New York, away from friends and his home.

“She reached out to us in New York and said, ‘I think I can help you come home.’ When I had really big questions, she was always there,” Brown recalled.

3F8, or Danyelza, is an antibody that attaches to neuroblastoma cells and helps focus a patient’s own immune system — especially white blood cells — to attack neuroblastoma cells.

Aidan’s oncologist, Dr. Melissa Bear, explains that Danyelza is for a select group of patients who have relapsed after receiving standard forms of therapy.

“These are going to be kids who’ve already had standard chemo, surgery, high-dose chemo, stem cell therapy and radiation,” she said. “And the cancer is either still there, or it went away and came back.”

In other words, this is reserved for the sickest patients, those for whom other treatments have not been successful at keeping the cancer at bay.

Riley was one of the sites that was involved with the clinical trial, which ended last year. When Aidan relapsed last year, Riley was able to get access to the drug that the teen had gone to New York to get.

“Aidan really wanted to come home, and we worked with the group at Sloan to get it here,” Dr. Bear said.

The teen completed three rounds of treatment in New York City before returning to Indianapolis in February of this year to complete another four rounds at Riley.

“We were able to come home, which was amazing,” Michele said.

This hasn’t been easy for anyone in the family, least of all Aidan, but he takes his cues from those around him.

“I wasn’t expecting to relapse twice, but every time I did there was always a bunch of people there helping out and making things easier on my parents,” the teen said. “I don’t know if I really had a positive attitude when it came to whether I’d be OK, but I knew the doctors were doing the best they could and giving me the best treatment they could and I had a bunch of good people around me.”

A MEASURE OF HOPE

Now FDA-approved, future patients in Central Indiana can receive the outpatient infusions at Riley, a blessing to families in the Midwest, who won’t have to travel far for treatment.

It’s too soon to call the drug a game changer, Dr. Bear said. The data are still being compiled, but it offers a measure of hope.

Meanwhile, the Brebeuf Jesuit Preparatory School student returned to New York for several days in August to participate in another clinical trial, this time for a vaccine study aimed at triggering the immune system to recognize any neuroblastoma cells that pop up so the body attacks them.

Not necessarily a treatment, it’s for patients who have completed their therapy and are trying to prevent the cancer from returning.

Today, Aidan is trying to get back into the swing of in-person school, while his parents continue to fight for every available treatment for their boy.

“If you looked at him, you would not know that he is a three-time warrior with cancer,” Michele said. “He is an amazing human being, thanks to a whole lot of people who have helped him survive over the years.”

The Riley team ranks high on that list. She describes Dr. Terry Vik, Aidan’s first oncologist, as “an amazing, incredible man who shepherded us through some of the darkest days of our lives.”

“And now with Dr. Bear I feel the same way. She’s open and honest and communicative and encouraging. I just love the doctor team there and the nurses and their commitment to Aidan, even though Aidan wasn’t always in their line of sight,” she added.

“We are battle-weary right now. When you’re reeling as a parent and every situation and decision feels like life and death, to have that caliber of a team and their willingness to do their job technically but also be there for you emotionally is just something that is … you don’t always get that.”

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https://www.rileychildrens.org/connections/podcast-maternity-matters-whats-it-like-in-the-nicu-for-families PODCAST: Maternity Matters -What's it like in the NICU for families? 2021-08-30T08:44:00-04:00 2021-08-30T08:49:46-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/riley-named-hospital-of-the-year-by-mended-little-hearts Riley named Hospital of the Year by Mended Little Hearts 2021-08-26T09:23:00-04:00 2021-08-26T09:37:53-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Hospital of the Year. It has a nice ring to it, right?

Riley Hospital for Children at IU Health has been recognized as the Central Region Hospital of the Year by the Mended Little Hearts organization.

The award is presented to a hospital in recognition of its “outstanding service and support to heart patients and their families.”

Dr. Larry Markham, chief of the division of pediatric cardiology at Riley, couldn’t be more pleased, especially considering the Central Region includes hospitals in several surrounding states, including Ohio, Michigan, Kentucky, West Virginia and western Pennsylvania.

“Anytime you’re recognized by a patient or family organization as a team that stands out, it’s just validation that you’re on the right path, paying attention to families and providing the care they expect,” Dr. Markham said.

Mended Little Hearts is a nationwide organization that supports and advocates for pediatric patients with congenital heart defects.

The group’s Indianapolis chapter sponsors family events, educational opportunities and toy giveaways, including its Bravery Bag and Bravery Chest programs.

When a child is diagnosed with a congenital heart defect, parents and caregivers often feel very alone. Their world has been rocked. But Riley has partnered with Mended Little Hearts to change that.

“THERE IS SOMETHING WRONG WITH HIS HEART”

Ronda Adamo knows that firsthand. Nearly seven years ago, the Garrett, Indiana, grandmother and her family were reeling from the news that her grandson, Brandon Halsey, was born with multiple heart defects and had to be airlifted to Riley.

Adamo wrote about that experience, sharing an excerpt here:

“It was around 2 a.m. when we heard the words that forever changed our lives. ‘There is something wrong with his heart.’ The doctor in CVICU at Riley brought in a drawing of his heart and sat with us for what felt like hours, explaining his complex heart, answering our questions, guiding us on where to find more information, (explaining) risks and possible treatments/surgeries that Brandon would need.”

Adamo recalls how she and her family were looking for support resources “because we just felt so alone,” and learned about Mended Little Hearts, the pediatric offspring of Mended Hearts.

The Indianapolis chapter was small at the time, she said, but the organization sent the family one of its Bravery Bags, filled with snacks, toys, books and toiletry items.

“I watched my daughter-in-law open the bag and she was crying,” Adamo said. “It’s the little things that mean so much.”

Adamo became involved with the Mended Little Hearts organization as a volunteer six years ago and has continued her support as a coordinator over the years.

When she learned about the award program, she knew she had to nominate Riley, the place where her grandson has received most of his care, managed by cardiologist Dr. Adam Kean. But it’s her work with Mended Little Hearts that really opened her eyes to the whole Riley team, especially during the pandemic.

“THANK YOU IS NOT ENOUGH”

“Working with the nurses and Child Life and the Cheer Guild was amazing,” Adamo said. “They were always able to find a way to let us help. We can provide resources for peer-to-peer support, educational opportunities for parents and toys for the Echo lab.”

With COVID, it became a challenge to continue their work because they could no longer visit the Heart Center in person with their toy donations and Bravery Bags, Adamo said, “but Riley found ways to help us provide that support.”

“I thought that was amazing, when so many organizations just said no,” she said.

“They allowed us to continue our work in a way that was safe for the children and still provided needed support to families dealing with congenital heart disease. And I wanted those people at Riley to be recognized. Thank you is not enough,” Adamo said.

She couldn’t deliver that thank you in person this week, but her appreciation was shared with team members who gathered for a group photo with the “Best Hospital” plaque just outside the Heart Center.

Alisha Cook, a nurse navigator on the heart unit at Riley, said she and the entire team are thankful for Mended Little Hearts.

“They bring an aspect of connection to families that we as nurses and providers aren’t able to outside of the hospital,” Cook said. “They connect them to other parents, other resources, and they make it a little more personalized.”

Nancy Kehlenbrink, pediatric cardiac sonographer, said Mended Little Hearts has been very generous with the echocardiogram lab, providing toys to keep little ones amused while undergoing testing.

“Even 20-year-old kids would ask, ‘Do you still have the toy drawer,’” Kehlenbrink laughed. “And we didn’t, but now we do because Mended Little Hearts has been so generous. Every three months we get huge donations. Even the older kids like to get something.”

While she doesn’t get to look in someone’s eyes at Riley and tell them how much they mean to her and to all the families they’ve helped to support, Adamo said she is grateful that they know they are appreciated, even if it’s with a small plaque.

“We wanted to recognize the people who make our program successful. They meet us at the curb for carloads of toys, they inspect the toys, and they hand out the toys and Bravery Bags. They are grateful to us, and we are grateful for them,” she said.

“Aside from the support of our organization, our group of heart families has watched as nurses, doctors, child life and support departments have helped our warriors in so many ways,” she added. “I know I am not the only one who fully believes they not only save lives, but they mend hearts, physically and emotionally.”

The little boy who got her started on her journey with Mended Little Hearts is approaching his seventh birthday and is doing well today despite some developmental delays related to his illness, she said.

“He amazes me. He has the most incredible spirit, and he never gives up.”

A heart warrior indeed.

Riley’s cardiology and heart surgery department currently ranks fifth in the nation on the U.S. News & World Report hospital rankings report. It is the Midwest’s top-ranked hospital for children’s heart care.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/11-year-old-is-the-first-riley-patient-to-have-this-rare-procedure 11-year-old is the first Riley patient to have this rare procedure 2021-08-23T12:44:00-04:00 2021-08-23T12:56:50-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Haiden Taylor hasn’t had the easiest life. The 11-year-old has been in and out of the hospital for years, dealing with cystic fibrosis and chronic pancreatitis.

Pain has been her constant companion.

But now, thanks to the efforts of a multidisciplinary team of doctors, nurses and specialists at Riley Hospital for Children, she has a little bit of hope.

Haiden underwent a rare two-part surgery earlier this summer to relieve her near-constant pain while also managing her body’s ability to produce insulin.

It’s called a total pancreatectomy with islet auto transplantation. TPIAT for short. And she is the first pediatric patient within IU Health to have it done.

DEBILITATING DISEASE

Chronic pancreatitis is an inflammatory disease that leads to scarring of the pancreas, increasing levels of pain and repeated hospitalizations. The pancreas is important because it regulates digestion and sugar levels in the body, so although it can be removed to alleviate pain, people are left without the cells that make insulin and other hormones that help maintain safe blood sugar levels. These people develop diabetes.

In Haiden’s case, doctors, in consultation with her parents, Billy and Megen Taylor, felt that removing her pancreas was the best option. The important part for her is that it does not have to mean a life of insulin shots. That’s where the islet auto transplantation comes in.

Dr. Nicholas Zyromski performed the operation to remove her pancreas (the source of her pain), gall bladder and part of her small intestine, then reconstructed her digestive system. A lab team isolated her insulin-producing cells from the pancreas, and the next day, the interventional radiology team at IU Health University Hospital reinfused her islet cells into her liver.

The hope is that they will produce enough insulin to help her lead a normal life. There’s no guarantee, but the procedure has worked in adults within IU Health and elsewhere.

Pediatric gastroenterologist Dr. Brian McFerron said typically a year out from the procedure, a third of patients may require insulin, a third may require a little with meals, and a third may require none.

“It’s been a very tough road for Haiden,” he said. “Chronic pancreatitis can be debilitating. This procedure is a way of hopefully giving her a chance at leading a normal life.”

FAMILY MOVED TO BE CLOSER TO RILEY

Haiden’s chronic pancreatitis had reached the point where there were no additional interventions to control her pain or to stop the ongoing inflammation and scarring in her pancreas, Dr. McFerron said.

“We met with the family numerous times, and they had done plenty of research and knew what the procedure entailed. We all agreed to proceed.”

Haiden’s family was so committed that they moved from southern Illinois to Indianapolis to be closer to Riley, he said.

“We were honored by that. We have all the pieces in place for the team it takes to successfully do this procedure,” Dr. McFerron said, “including preoperative evaluation, surgery, the transplantation and close follow-up afterward. It takes a very large team – surgery, GI, pulmonology, endocrinology, dietitians, pain management, mental health services and critical care. All of those people played a role.”

Dr. Zyromski agrees: “We are able to deliver this type of high-quality, high-complexity care in the setting of a functional multidisciplinary team.”

Haiden was hospitalized for 23 days in June at Riley, before and after the surgery. She went home for about a week, then returned for a week mostly due to abdominal discomfort, her mom said. That back and forth is lessening now, and Haiden was at Riley a couple of weeks ago for a checkup with pediatric endocrinologist Dr. Juan Sanchez, one of her many doctors and among her favorites, her mom said.

“He’s awesome,” she said.

Another favorite is Dr. Molly Bozic, a pediatric gastroenterology specialist.

“We have a list of doctors a mile long,” Megen said. “We have met a lot of special nurses, too.”

Haiden hopes one day to be one of those nurses. At Riley, of course.

STRONG AND WISE

The sixth-grader was pulling an IV pole around with her in the lobby of Riley’s Simon Family Tower earlier this month, something she is used to doing. She can eat, but it’s not always easy. The IV pumps formula into her thin frame to bump up her nutritional intake.

She is wearing a shirt made by her aunt that says, “Pancreatitis survivor – It’s not for the weak.” Next to her, Megen wears a shirt with the message “Cystic Fibrosis Awareness.”

“She’s the strongest, kindest child I have ever met,” Megen says of her daughter. “She’s like an old soul, wise beyond her years. Sometimes you wouldn’t know anything is wrong with her.”

She’s human though, and when the pain flares up, her spirits can sag. Counseling services, part of that multidisciplinary team approach, take the edge off and help her navigate her illness.

She doesn’t let it keep her down for long, her mom said. The family which includes Haiden’s two brothers, goes camping and boating nearly every weekend. Haiden also likes to ride dirt bikes, play video games and bake cookies.

HOPEFUL SIGNS

It’s too soon to tell how well her body will adjust post-surgery, but doctors are encouraged by her progress.

“She is doing well. She is progressing as we would expect, and we are certainly hopeful,” Dr. McFerron said.

Chronic pancreatitis is a challenging disease to treat, Dr. Zyromski explained. It most often afflicts adults who have abused alcohol or are cigarette smokers.

“There is a very small percentage of chronic pancreatitis patients whose disease stems from a genetic mutation. Haiden is one of those patients,” he said. “The treatment of this disease is extremely challenging. There’s no medical therapy, and in fact surgical therapy aims to treat the consequences of the disease. Haiden’s situation is that she has a variant that we call small duct pancreatitis and the treatment for that is removing the entire pancreas. TPIAT is accepted as standard therapy for very highly select patients with chronic pancreatitis and for sure patients with a genetic predisposition like Haiden has.”

The surgery protocol, developed in the 1970s at the University of Minnesota, is done in only a handful of medical centers in the country, including IU Health.

Dr. Zyromski said he saw Haiden a few weeks ago, and she definitely is improving, though it will take several months to see if the islet cells transplanted to her liver will produce more insulin.

“Her sugar regulation has been quite good,” he said. “The endocrine team at Riley is helping take care of that. She’s got a long way to go, but I think she’s going to be OK.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/three-year-old-cancer-patient-meets-the-woman-who-saved-his-life Three-year-old cancer patient meets the woman who saved his life 2021-08-19T14:11:00-04:00 2021-10-21T09:14:31-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Jeff and Kaylie Parry knew it would take a home run in medicine, plenty of prayers and a dose of good luck if they were ever to see their little boy grow up.

At the time, Jacob Parry was just a baby. A baby battling one of the most aggressive cases of acute myeloid leukemia that doctors at Riley Hospital for Children had ever seen as they prepped him for a stem cell transplant.

With the help of their cancer care team at Riley, including Dr. Jodi Skiles, director of pediatric stem cell transplant and cellular therapy, and Audrey Hopper, stem cell transplant nurse coordinator, they swung for the fences, and last weekend their victory played out on the field of a minor league baseball team hundreds of miles from home.

If you’ve ever seen the movie “A League of Their Own,” you’re familiar with the expression, “There’s no crying in baseball!”

But there was plenty of crying on the Massachusetts baseball diamond when the Parry family got to meet their personal hero – the woman who saved their son’s life.

“WE ARE SO VERY BLESSED”

Jeff and Kaylie and their three sons, 5-year-old Jackson and 3-year-old twins Jared and Jacob, made their way from Bremen, Indiana, to Worcester, Massachusetts, last week to meet Rachel Buck, who donated bone marrow to save Jacob two years ago.

Just before that meeting, Kaylie spoke on the phone about what it would mean to lay eyes on Rachel for the first time.

“Prepare for me to ugly cry on the jumbotron,” she laughed, as her boys lay sleeping nearby.

She and her husband don’t seek the spotlight, so the idea of media covering this event was definitely out of their comfort zone. But they only had to look at Jacob to see that it was all worthwhile, not just for them but perhaps for another child who could be saved.

“We prayed about it a lot, and we want to do it to help another family,” Kaylie said. “I want to cry right now just thinking about meeting her.”

Kaylie did just that when Rachel bounded onto the diamond after being introduced by former Villanova University football coach Andy Talley, founder of Get in the Game. The nonprofit leverages the power of college athletics to recruit potential bone marrow donors for Be The Match.

There were a lot of tears that day on the pitcher’s mound as Kaylie and Rachel hugged and Jacob got to meet his personal superhero.

“It was amazing,” Kaylie said later, still feeling the high from the weekend. “There really are no words. We are so very blessed.”

Three-year-old Jacob was nonplussed by the fanfare, but he did enjoy playing in the dirt after the game. And that is one measure of just how far he has come since the summer of 2019.

THE FIGHT OF HIS LIFE

Jacob was diagnosed with leukemia when he was just a baby. He went through chemotherapy at Riley in preparation for a stem cell transplant in the summer of 2019. But he needed a donor.

His parents, Jeff and Kaylie, were 50% matches, as was his older brother, Jackson. His twin (not identical) was a 0 out of 10 match. Enter Rachel, who had registered with Be The Match as a student on the campus of the University of New Haven in Connecticut. It took just a couple minutes to have her cheek swabbed and her information entered in the database.

“Cancer has struck my family, as it has so many others,” she said, “so I thought, why not register? What are the odds I’m going to get picked?”

It was some months later when she got the call that she was a 100% match for a little boy in Indiana. At the time, she was a senior in college. She could have backed out, but with the support of her family, she stepped up big time.

Even when Jacob had to have another round of chemo in the summer of 2019 and the timing for Rachel’s donation had to be pushed back to just days before her 22nd birthday, she was unwavering.

Scheduling can sometimes be the hardest part of matching donors and recipients, Dr. Skiles said.

“Rachel is clearly a hero because she was willing to do this. When we have unrelated donors that match through the registry, it is often a battle to get a schedule put together on a calendar that works with the donor’s schedule,” she said. “That can be really hard on the patient, who is at the will of whatever their leukemia or cancer chooses to do.”

Rachel, now 23 and a med tech in the microbiology lab at Tufts Medical Center in Boston, was different, Dr. Skiles said.

“From the word go, she was all in, whatever we needed, whenever we needed it. She is amazing, truly lovely in every way. It’s not often that you meet a 23-year-old who has a real sense of the world around them.”

“HOW COULD WE HAVE MISSED THIS?”

Dr. Skiles flew to Boston over the weekend for the meeting between the Parrys and Rachel, who was accompanied by her extended family, her fiancé and his family. Transplant coordinator Audrey Hopper drove out with her 11-year-old son, Wade, a huge baseball fan.

“I brought my son so I could share with him some of the reasons why mommy’s busy sometimes,” said Hopper, who works long hours coordinating procedures and advocating for patients at Riley.

While it wasn’t easy to get away, it’s important to celebrate the wins, she said, and to encourage more people to add their names to the registry. Appropriately, a registry event for Be The Match took place during the baseball game as well.

“We need everyone to be on the bone marrow registry, especially people of different ethnicities and backgrounds,” Hopper said. “We need help because these kids have amazing lives to live.”

Reflecting on the weekend, Dr. Skiles said she knew it wasn’t necessary that she be there, but she and Hopper really wanted to find a way to make the trip.

After it was over, both realized how very much it meant to them personally and professionally.

“How could we have missed this,” Dr. Skiles said, noting how emotional it was to meet Rachel and to reunite with Jacob, his parents and his extended family, two years post-transplant.

“It was fun to be with them in this setting where we just get to enjoy them as people instead of in the mode of medical care,” she said. “And Jacob looks amazing, like a normal, healthy boy.”

One of the most striking moments for her was after the game when she and others were gathered around a tent and Jacob was sitting on the ground, playing in the dirt. Rachel sat down right next to him.

Two years ago, he couldn’t have done that, Dr. Skiles said. It was too risky. The fear of germs was always on his parents’ minds.

But in that moment, the realization that it was Rachel’s immune system protecting him gave both her and Hopper chills.

“It was such a great opportunity to appreciate the fruits of our labor that we don’t often get to see.”

BETTER THAN A WEDDING

For Rachel, the weekend was magical.

“My wedding day is not even going to top this,” she said. “My fiancé already knows that. The whole weekend, looking back, it still feels almost like a fever dream. I can’t believe it happened. I can’t believe that I got to meet this insanely strong little boy and his family.”

And now their family has become her family, she said. It’s been an emotional ride.

“Jacob barely had a year on the planet and had to fight one of the hardest fights of anyone’s life,” she said. “And now he can go to preschool and he can learn how to ride a bike and he can play baseball and learn to drive a car when he gets older, things that people who are healthy take for granted.”

And he and his family can come to her wedding in 2023.

“They are definitely getting an invite!”

She wants people to know that when you donate bone marrow (a procedure that required her to spend a day at an East Coast hospital), you’re not just changing one person’s life.

“It’s his family, his community, the doctors and nurses at the hospitals. If Jackson and Jared grew up without their brother, that changes their lives. To take a day off to go in for a procedure, it’s so rewarding I can’t even think of anything better.”

ABC News thought so too, featuring the story on its “America Strong” segment over the weekend.

For Kaylie and Jeff, strength has been a hallmark of their fight. And they’ve gained that strength through their “village” – family, friends, doctors, nurses, and yes, strangers like Rachel, who now is very much a part of their family, too.

“Jeff and I are very certain that God has kept Jacob on this Earth for a reason, Kaylie said. “We have no doubt that this team was handpicked to be in our lives. It is obviously a God thing. Dr. Skiles and the whole team has become family. It’s such an awesome feeling to know that you’re not just a number, you’re a part of this group, and they treat you the same as they would treat their kids.”

“TOMORROW I’LL BE BRAVE”

Kaylie remembers all too well the darkest days at Riley when Jacob’s health was so critical. Shortly after the transplant, the Riley team received a book meant for the family and sent by their then-anonymous donor (Rachel) to Be The Match.

The book is “Tomorrow I’ll Be Brave,” by Jessica Hische. In an emotional scene captured on video, Dr. Skiles, Hopper and others take turns reading from the book as Jeff and Kaylie sit next to Jacob’s bed at Riley while he sleeps.

“There was not a dry eye in the room,” Kaylie said. “I knew then it was going to be a very special relationship.”

Jacob received his stem cell transplant at Riley Hospital on Sept. 20, 2019. He was hospitalized for seven months and nearly didn’t survive, but today he is a healthy little boy.

“He loves to run and play with his brothers, he loves to be outside, and if he could play in the dirt every day, he would,” his mom said. “He goes wild over Mickey Mouse. He’s just the sweetest little thing.”

While his twin’s nickname is “Bam-Bam,” Kaylie said Jacob is gentler, a boy who has always loved to cuddle. That connection helped them get through the worst days.

“He loves to hold my thumb. We did that a lot when he was in the ICU and I would wrap his hand around my thumb just to let him know I was there. As a baby, he would let you rock him for hours. When your child is sick and hooked up to an IV pole, you spend a lot of time sitting and rocking.”

The Parry family hopes their story inspires others to register to become bone marrow donors at bethematch.org.

Related:

ABC News: Young boy meets lifesaving donor - Jacob Parry spent 194 days in the hospital before receiving a bone marrow transplant from a stranger.

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https://www.rileychildrens.org/connections/new-dialysis-machines-for-tiny-patients-are-a-game-changer New dialysis machines for tiny patients are a “game changer” 2021-08-18T08:07:00-04:00 2021-08-18T08:25:20-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Some of the smallest patients at Riley Hospital for Children now have one more medical advancement going for them.

It’s a “state-of-the-art” dialysis system that is offered at only about a dozen pediatric hospitals in North America, and Riley is among that select few, according to Dr. David Hains, Riley’s chief of pediatric nephrology.

“Whenever we want to do dialysis in the ICU, we have a number of challenges,” he said. “We have machines that require very high blood flow rates, which is fine in an adult or older kiddo, but in babies it can be a real challenge. And now we have this teeny, tiny machine that can do some low-level dialysis, can pull fluid very easily and has simplified the entire process.”

“A game changer” is how Dr. Michelle Casey Starr describes the three new machines at Riley that offer a gentler, safer alternative to large, high-flow machines.

Dr. Starr is a pediatric nephrologist and clinical lead for the new program at Riley, which went online April 30. She arrived in Indianapolis two years ago from a fellowship at Seattle Children’s, the second pediatric hospital in the country to roll out the Aquadex Flex Flow System for use in infants.

“One of the reasons I was asked to come here was to help bring this program here,” she said. “I was really excited because it’s a huge benefit for a lot of our patients.”

The product itself is not new. It has traditionally been used to remove excess fluid from adult heart failure patients, Dr. Starr said.

“One of the many challenges in pediatric critical care and pediatric nephrology is that a lot of the technology we use is adult technology that we adapt to children. That’s especially the case with dialysis,” she said.

“So that means using big dialysis machines on very, very small patients and that’s very challenging for a variety of reasons. This is a much smaller machine, which means it’s much better tolerated in our smaller patients. It’s allowed us to dialyze smaller patients with fewer complications and more clinical stability.”

For comparison’s sake, a typical dialysis machine is about 3 feet tall, 19 inches deep and 1½ feet wide and can weigh up to 300 pounds. The new machines are about a foot tall and wide and come on a rolling pedestal.

Typically, patients are hooked up to the device continuously for several days or even weeks at a time, until their kidneys recover or they can be transitioned to peritoneal dialysis or another long-term option, Dr. Starr said.

The smallest NICU baby dialyzed with the new machine to date at Riley was 2 kilos, or about 4.6 pounds, she added.

With traditional dialysis machines, the benefits would not outweigh the risks in patients smaller than 4 or 5 kilograms (8-11 pounds).

“We couldn’t have tried regular dialysis with our smallest kiddos, but now we can.”

Dr. Mara Nitu, pediatric critical care division chief at Riley, said a group of specially trained nurses in the PICU and CVICU run the machines. A NICU baby might receive dialysis in the cardiovascular intensive care unit if he or she had a heart problem in conjunction with renal failure, or come to the PICU if the reason for dialysis stems from sepsis or another serious infection that can attack the kidneys.

“It’s a new machine, and it opens a whole new array of possibilities for tinier babies with congenital heart disease, or tinier babies with sepsis in the PICU or even tiny babies in the NICU,” she said. “We are developing protocols and practice guidelines, and we are very excited.”

The smaller machines operate with a much lower blood flow, as mentioned by Dr. Hains, and patients require a smaller central line, or dialysis catheter, so they typically don’t need a blood thinner to prevent blood clots.

For now, the team is in the ramping-up phase, Dr. Nitu said, troubleshooting new scenarios as they come along.

“We are learning very fast and becoming better and better. We think there are a lot of new opportunities to take care of patients.”

Kristen Freeman is among those specially trained CCRT (continuous renal replacement therapy) nurses in the PICU who see firsthand the benefits of the new system.

“It has been exciting to learn this new machine and adapt it to our patient population,” she said, adding that the Aquadex allows the staff to improve patient outcomes with less invasive interventions, including large dialysis catheters. It’s also easy to move around.

“From a nursing perspective, this machine is ideal for mobilizing patients and traveling to procedures around the hospital,” Freeman said. “It's smaller, it's on wheels, and it does not have to be continuously plugged in.”

Dr. Starr said the investment in the new machines reflects Riley’s commitment to provide the therapy necessary “to care for our sickest and our smallest patients.”

“It’s a really exciting time in pediatric critical care nephrology because there are a lot of different things coming down the pike,” she said.

Seeing the new dialysis technology come to fruition is a testament to the multidisciplinary team approach Riley has to patient care, say both Dr. Starr and Dr. Hains.

“Watching this has been really exciting,” Dr. Hains said. “Seeing everybody work together – pharmacy, supply chain, engineering, nursing, nephrology and critical care – we all have to be on the same page to do this.”

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https://www.rileychildrens.org/connections/podcast-maternity-matters-riley-midwives-provide-another-option-for-expectant-parents PODCAST: Maternity Matters - Riley midwives provide another option for expectant parents 2021-08-16T09:53:00-04:00 2021-08-16T09:57:21-04:00 ]]> https://www.rileychildrens.org/connections/starting-kindergarten-with-a-new-heart-and-a-dazzling-smile Starting kindergarten with a new heart and a dazzling smile 2021-08-15T15:12:00-04:00 2021-08-15T15:26:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Mariah Gavia-Locke had to wonder if this day would ever come. Sure enough, it was her baby girl’s first day of kindergarten.

Five-year-old Makayla Owens brought more than a new backpack and mask to school that day. She brought along her new heart.

Makayla received a heart transplant Oct. 8, 2020, at Riley Hospital for Children. Dr. Mark Turrentine was her surgeon. It was the culmination of a long wait for the young girl, who was born with multiple heart defects.

She was just 3 when she arrived at Riley in July 2019 to prepare for a transplant, and she didn’t go home again until Feb. 27, 2021. Two birthdays, two Halloweens, two Thanksgivings and two Christmases. All spent in the hospital.

Since that February discharge day, she has been working with therapists at home to get stronger and to walk independently.

When we visited with Makayla last week, she was getting home from all-day kindergarten at Edison School for the Arts in Downtown Indianapolis, the same school her older brother and sister attend.

The long day had worn out the kindergartner though, as her mom nudged her awake in the car, then carried her into their home.

But when the camera came out, Makayla opened her eyes and flashed her trademark smile. Dressed in a blue school jumper and snazzy black Chucks, she grabbed her walker from the bedroom and pushed her way into the living room to hop on the sofa.

She hammed for the camera, while her mom talked about her progress as she approaches the one-year anniversary of her transplant.

“It’s great having her home again,” Gavia-Locke said. “I want her to be able to have friends and be a kid again.”

Makayla is used to being around adults, after 18 months at Riley, so school is a new concept. But she has already made friends in her classroom and says she spends her recess with other kindergartners collecting rocks, which they display on their desks.

Asked what her favorite part of school is, she said simply, “Coloring.”

Because of the long hallways, Makayla uses a wheelchair at school, but she gets around pretty well with her walker at home. The hope is that with continued therapy she will regain her strength and begin walking on her own in time.

She suffered a setback in April when she broke her left leg while playing with her siblings, so therapy had to be put on hold for a while.

“It’s a matter of building strength and confidence,” Gavia-Locke said. “She’s worried about falling. Once she gets steady enough, it’s just a matter of time.”

Makayla, who will turn 6 later this month, returns to Riley every few weeks to see cardiologist Dr. John Parent and the cardiology team to make sure her new heart is doing its job.

“There’s still so much she can’t do, but she definitely has more energy,” her mom said.

But even kindergartners get tired. It’s naptime for Makayla after a long day at school, so after smiling for the last picture, she takes off her shoes and crawls into bed with her unicorn and all of her other stuffed friends, many of them collected while she was at Riley.

Having her daughter home again, sleeping in her own bed, means the world to Gavia-Locke.

“I don’t think she understands where her heart came from, but she knows she feels better.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

She has a new heart but the same old sass - Five-year-old Makayla Owens’ heart was weak, but her spirit was strong. After 17 months at Riley, she’ll soon be going home.

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https://www.rileychildrens.org/connections/a-second-chance-please-help-me-im-going-to-die A second chance: “Please help me. I’m going to die” 2021-08-11T16:00:00-04:00 2021-08-11T16:33:12-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

For more than 20 years, Erica Branam held fast to her dream of becoming a nurse at Riley Hospital for Children.

She wrote an essay on that very subject as a senior in high school. It all seemed so clear.

“I wrote with such passion and innocence and naivety … and, well, I got here, but it took me 20 years.”

The innocence and naivety may be gone, but the passion is as strong as ever for the 40-year-old pastor’s wife, mother and first-year nurse on 8 West at Riley.

Her journey almost ended before it began when she nearly died in a car accident in 2003 while on her way to the doctor. The Carmel, Indiana, native was in her last year of nursing school in Tennessee. She was also six months pregnant.

But an argument before she left had rattled her and led to a near-fatal mistake. She did not buckle her seat belt. As she was driving on a two-lane country road, the last thing she remembers is feeling hot and dizzy.

Her next memory is of being in a hospital unable to communicate while doctors and nurses worked to save her life.

FARMER LIFTS CAR TO SAVE HER

Branam found out later that her car had gone off the road and she had been ejected through the driver’s side window and thrown into a telephone pole. The car pinned her against the pole.

It was an elderly farmer rehabbing from shoulder surgery who found her.

“I don’t remember this, but he said I looked at him and said, ‘Please help me. I’m going to die.’ By the grace of God, he was able to pull the car off of me and he sat with me and prayed with me until the rescue squad arrived,” Branam said.

“I hope someday I make it to heaven and I believe the first person I will see is him. He’s just really, really special.”

Erica and Nathan Branam’s first child, Isaiah, survived that accident and is now an 18-year-old high school senior.

He would be followed by two more children, and Erica settled into life as a stay-at-home mom for 12 years. But her dream never died.

When her kids were all school-aged, she returned to work in a doctor’s office but without her nursing degree. That experience rekindled her desire to complete her RN degree, so she returned to the classroom as well, balancing a job and three kids while the family was living in Illinois.

Then came another surprise.

BABY #4

“I found out I was pregnant again during the last semester of school, but I graduated and I took a position in family practice,” she said.

It was a wonderful job, she said, but it wasn’t enough.

“Nursing is this beautiful art of both heart and skill, and you have to balance both,” she said. “In family practice, I was able to use a lot of heart in caring for families, but the second piece was really missing for me.”

She and Nathan had moved their family back to Indiana by then, and she decided to look for a position at Riley. The stars seemed aligned, and she was offered a position as a nurse on 8 West in August 2019.

Her joy was short-lived. It turns out her degree from nursing school in Illinois only offered regional accreditation, not the higher level of accreditation required by Riley.

“To have it within my grasp, it was devastating,” she said. “That was a hard, hard night, but I have an amazing support system who rallied around me. My husband got me ice cream, my son got me flowers, and my family came over and just sat with me in that sadness.”

And then she picked herself up again, thanks in part to support from her sister, Carly Wenzel, a nurse practitioner at IU Health Methodist Hospital. Wenzel pinned her at her nursing graduation in Illinois.

“You’re doing this, you’re not going to give up now,” Wenzel told her sister.

And she was right. Within 48 hours, Branam was already looking for schools where she could bridge her RN degree to a BSN. Within a week, she had applied and reached back out to 8W shift coordinator Beth Eubanks to tell her she was not giving up on her dream.

LIVING THE DREAM

Last January, amid a pandemic, all the pieces finally fell into place, and Branam began working as a nurse on the pulmonary unit in the place she felt called to be. It’s even better than she imagined. But it’s not easy.

“I’m just so grateful to be here, even on the hard days,” she said. “I get in my car some days and cry out of exhaustion or heartbreak. These families are going through hard stuff. And we’re stretched to the limit, especially right now in the midst of the pandemic.”

Shift coordinator Eubanks and unit manager Sara Murff are thrilled to have Branam on their team, both for her enthusiasm and her compassion for others.

“She does a wonderful job connecting with our patients and families, and they get that,” Eubanks said. “We were so blown away by her interview and so glad she came back to us. She does a good job of representing all of IU Health’s values – she’s compassionate, organized, strong and a team player. She’s got everything going on. We just love her.”

For her part, Branam is thankful to be on 8W, calling it the “gem of Riley.”

“The culture that our managers have created is one of support and safety,” she said. “Our providers are so respectful and supportive. It’s a great collaborative team.”

While a typical year might bring a lot of cystic fibrosis patients to the unit, the census is different these days as nurses share the load caring for different patients. On the day we spoke to Branam, she was assigned to a cardiac patient, a respiratory patient and a COVID patient.

Her family knows that on those days, she must go directly to the shower when she gets home. Even her 2-year-old understands.

“When I come home, I’ve been gone for 12 hours and my family misses me and I miss them. But I can’t touch them. They know that. It’s heartbreaking. When my little one sees me, she says, ‘You got germs?’ She’ll follow me at a distance to the shower and stand outside the shower until I finish. When I get out, she says, ‘You don’t got germs no more?’ ”

It’s adorable if it weren’t so tragic.

Still, Branam wouldn’t trade this job, nor her journey, for anything. Twenty years ago, she says, she was not ready.

“I didn’t have the experiences, the knowledge, all the pieces to be able to sit here and be the best nurse I could possibly be here. All of that has played into my whole experience. It has shaped me in the way I interact with my patients and their families.”

CLOSE TO HER HEART

On the back of her ID badge next to her heart she keeps a picture of her kids, now 18, 15, 12 and 2.

“I keep them on my heart every day because it’s hard to be gone for 12 hours from your babies, but I also think it creates some understanding and safety for families if my badge does flip over. I often will say to families, I’m a mama too and I’ve sat in these rooms too.”

She often tells her families that they are their child’s best advocate because they know their child best.

“They are an important piece in a child’s plan of care. I tell them, ‘You know your child far better than I do and I will never be mad at you for advocating for them.’ I love it when parents ask questions and challenge me because that creates a conversation for us to give the best care possible.”

She remembers back to the day in 2003 when she was lying on a hospital gurney while the medical team rushed around her, not realizing she could see and hear everything. She just couldn’t speak.

It was a student nurse who noticed a tear rolling down Branam’s cheek and came over to look her in the eyes and tell her where she was and that she was safe. She has never forgotten that, relying on that same level of skill, awareness and compassion to communicate with her own patients today.

Maybe she could have picked an easier time to become a bedside nurse, but Branam believes this is exactly where she is meant to be, pandemic and all.

“Nursing is so much more than a job. It truly is a calling. And if you’re called to something, you can’t run from that.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/once-not-expected-to-survive-baby-hazel-is-thriving Once not expected to survive, baby Hazel is thriving 2021-08-10T12:45:00-04:00 2021-08-10T13:25:38-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

When Calvin and Ashley Smith’s two little girls wake up every morning, they have a reunion of sorts.

Gone are the squabbles of the day before, replaced by hugs and kisses to start the new day.

“They both really love each other and they get excited especially in the morning when they see each other for the first time,” Ashley said. “Hazel sits on my knee and Hartley comes over and gives her hugs and kisses. It’s the sweetest moment of my day. And then they get back to being sisters and fighting again!”

Aside from all the noise and the toys in their southern Indiana home, life is relatively peaceful in this season for the Smiths – a far cry from the turmoil they faced two years ago when they found out that Hazel, still in the womb, had little chance of survival because of a rare pregnancy disorder.

Ashley experienced what doctors determined was a partial molar pregnancy. While in a total molar pregnancy, the fetus does not develop at all, in a partial molar, the fetus can develop but typically will be abnormal and doesn’t survive. A partial molar pregnancy with a live fetus occurs in the tiniest fraction of cases.

Born two months early at IU Health Methodist Hospital on Dec. 17, 2019, Hazel was – and is – nothing short of a miracle, her parents believe. After three months at Riley Hospital for Children, she went home for the first time in March 2020.

Hazel has had her challenges, but she is a joyful little girl who has surpassed all early expectations for her growth and development. She loves to look at books and to make music so she can dance, her mom said. She loves animals and puzzles and food.

“She likes to pretend eat, and she cracks herself up,” Ashley said.

But she doesn’t just pretend.

“She eats us out of house and home. She’s not overweight, but she has a really good appetite and she’s very active.”

Now nearly 20 months old, Hazel’s vocabulary grows every day, her mom said, counting at least 20 words that she can think of. Hazel mimics most everything she hears and definitely has a mind of her own.

Dr. Theodore Wilson, Riley Medical and Molecular Genetics, has told the Smiths that Hazel is on track cognitively for her age, and Ashley agrees.

“Her brain is technically smaller than everyone else’s, but she is so incredibly intelligent.”

Developmentally, she is a few months behind and participates in multiple therapies three times a week.

Hazel suffers from hemihypertrophy, a genetic disorder characterized by overgrowth of one side of the body compared to the other. In her case, it means her left leg is slightly longer than her right, making it difficult to walk, so she does a version of an army crawl to get around.

As a result, she will begin seeing Riley orthopedics specialists soon, a new specialty to add to her growing list – genetics, gastroenterology, nephrology, endocrinology, ophthalmology and oncology. The latter team is on board to keep a close eye on any developing liver tumors.

There is no one syndrome that fits Hazel, Ashley said, but that goes with the territory for their miracle girl.

“We’ve exhausted every test in the genetics realm, and she still doesn’t have an identifiable syndrome. She is just Hazel Smith syndrome.”

Even Facebook support groups haven’t been a good fit for Ashley when it comes to learning more about her daughter’s challenges. That’s why she would like for her daughter to maybe help other kids and parents.

“I don’t really have any answers because there’s no one else like Hazel that we can find, but it would be nice to help somebody else out in this situation and give some other parent some relief from their worries because Hazel is great,” Ashley said.

“She’s so sassy and wonderful, and we love her so much. I would hate for other parents who have a child like Hazel to be discouraged, because she is the best baby ever.”

She is, her mom said, “a perfect fit into our family.”

“Everyone she meets is in love with her. I call her the welcoming committee – she waves at everyone when they walk in for an appointment and she tells them bye when they leave. She’s the most social, beautiful, perfect little girl.”

Previous Stories:

“Babies are miracles, and she is the biggest miracle of all” - The woman’s pregnancy was so rare doctors were baffled, but Ashley and Calvin Smith’s preemie daughter is proving the doubters wrong.

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https://www.rileychildrens.org/connections/podcast-maternity-matters-lactation-consultants-offer-support-to-breastfeeding-moms PODCAST: Maternity Matters - Lactation consultants offer support to breastfeeding moms 2021-08-09T09:11:00-04:00 2021-08-09T09:14:23-04:00 ]]> https://www.rileychildrens.org/connections/nerve-regeneration-gives-hope-to-10-year-old Nerve regeneration gives hope to 10-year-old 2021-08-05T15:15:00-04:00 2021-08-05T15:28:38-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

In her gray jumper and sneakers, with her hair pulled back in braids, Khloe Hairell looks like a typical 10-year-old. But she has endured more than her share of pain in her short life.

Perhaps that’s why it’s endearing to hear her yell “Nobody home” each time there is a knock on the door of the small exam room at Riley Hospital for Children, where she waits with her mother, Maegen Bramblett.

Her sass is a relatively new feature of her personality, Bramblett says. It might be due to injuries suffered in a motorcycle accident nearly a year ago, but there’s a bit of pre-teen sarcasm bubbling up as well.

Khloe spent her 10th birthday last September in the hospital. She and her mom, who live in Marion, Indiana, want to be sure this year she can have a proper birthday at home, so they are relieved when Riley plastic surgeon Dr. Joshua Adkinson says now is not the time for another surgery to help regain the use of her left arm.

After rehabbing at Riley last year and learning to walk again, Khloe wasn’t finished healing yet. She points to her nose and says, “Everything on my face got ruined but this nose.”

Her face appears perfect now, but her left arm is a different story. She suffered an injury to her brachial plexus, which is a network of nerves in the shoulder that carry movement and sensory signals from the spinal cord to the arms and hands. Brachial plexus injuries typically stem from trauma to the neck, and can cause pain, weakness and numbness in the arm and hand.

NERVE TRANSFER

In January, Khloe underwent a relatively novel surgery performed by Dr. Gregory Borschel, chief of plastic surgery at Riley, and Dr. Adkinson. The surgeons transferred nerves, borrowing “power” from her strong right arm to restore power to her left arm.

Called a “Cross C7” nerve transfer, Dr. Borschel said, the idea is to regenerate the nerve to promote healing and restore some function.

“We think it’s the first time this has been used in a child in Indiana,” he said. “Our team is a leader in this field.”

That kind of advanced surgery is Dr. Borschel’s passion. When he joined Riley, he made a point to talk about its collaborative culture.

“I like to be part of a team, and I love bringing people together to form teams. The other thing I really like doing is developing new approaches to treating certain conditions.”

His clinical work focuses on nerve injuries, like Khloe’s, as well as pediatric facial paralysis, hand surgery and other plastic and reconstructive surgery. In addition, he has pioneered corneal neurotization to treat blindness in patients with neurotrophic keratopathy.

“I’ve been fortunate to collaborate with lots of specialties in the operating room, and we’ve come up with some novel solutions to difficult problems through teamwork,” he said in an earlier interview. “The goal is to develop the best strategies in the world for these patients with traumatic injuries.”

CUTTING EDGE

As Dr. Adkinson examined Khloe during a follow-up appointment last week at the Riley Outpatient Center, he explained the surgery in layman’s terms.

“We stole some power from her unaffected right side, and we have it extended over to the left side through an extension cord of sorts,” he said.

Grafts taken from Khloe’s legs served as the “extension cords,” connecting the normal nerve root to the injured area. The surgery took about eight hours.

It’s too early to say how successful the procedure will be for Khloe, though she has some tingling and sensation in her upper arm and can shrug her shoulders.

“The surgery went really well,” Dr. Adkinson said. “Nerves regenerate slowly, but I think she’s progressing nicely.”

It can take a year to 18 months to see results, he added. Khloe, who is seven months out from surgery, still carries her left arm in a sling, something doctors and her mom would like to see her less dependent on, especially at night.

“I’m supposed to sleep with it off, but I can’t,” she said. “Cause I have to sleep with my arm on my side and it falls forward and backward and gets pain in my shoulder. I still get pain.”

Asked how she deals with the pain, she says, “I just make a face.”

THERAPY CONTINUES

Khloe sees an occupational therapist close to home twice a week, but during her Riley appointment, she is evaluated by OT Amy Bercovitz, who is patient, encouraging and enthusiastic as Khloe attempts to show her how she can raise her left arm off the exam table.

For whatever reason, the motion is a lot harder today, and Khloe struggles to lift her arm, using all the muscles in her core.

“I can’t do it,” she says.

“I see you arching your back, I want you to try to keep it straight,” Bercovitz tells her, before moving on to another exercise.

She asks Khloe to close her eyes and tell her where Bercovitz is touching her on her arm. The fifth-grader easily points to spots on her upper arm when Bercovitz touches them, but she is unable to identify proximity with her eyes closed when the therapist lightly touches her lower arm. Nor can she feel touch on her left hand, despite occasional tingling in that hand.

That’s to be expected at this point, Dr. Adkinson said.

“Really the goal of today is just to keep coaching you through the therapy process,” he said, reiterating the need for her to rely less on the sling.

“The sling is her crutch,” her mom said. “When I take it from her, she’ll hold her arm and go pout.”

“We’ll have to work on that,” the doctor said, explaining that it could inhibit motion and slow the healing process.

TRAMPOLINE IS A NO-GO

One big question on Khloe’s mind at her Riley appointment is whether she could be cleared to jump on the trampoline that sits in her front yard. Her occupational therapists aren’t fans of that idea, but it is Dr. Francisco Angulo-Parker, pediatric rehabilitation specialist at Riley, who puts the kibosh on it – for now.

Dr. Angulo-Parker, who has been part of Khloe’s care team since she first arrived at Riley last September, said even though she may try to protect her left arm when jumping, it’s not safe.

“There is not enough protective positioning of that shoulder to prevent a serious injury,” he told Khloe and her mom. “I would be scared about her shoulder stability if she fell the wrong way. It’s too soon.”

It’s not the answer Khloe is hoping for – her body language makes that clear.

And so the road to recovery continues. Khloe will return to Riley for a follow-up exam in three months.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/hugs-and-kisses-from-ky Hugs and kisses from Ky 2021-08-04T09:35:00-04:00 2021-08-04T09:59:30-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Zedekyah Feeny is dragging his IV pole down the halls of 8 West while holding his large (and very loud) toy dinosaur. His dad, Trent, is close by, while his mom, Malinda, leads the way with a bag of chocolate in hand.

In the background, a song can be heard playing on Malinda Feeny’s phone.

“I’m Zedekyah, I am brave and strong. A heart warrior all day long. I’m the love and light the world needs to see. Zedekyah, yeah, that’s me.”

Zedekyah (“Ky” for short) is a 6-year-old heart patient, chocoholic and dinosaur fiend. The soon-to-be first-grader is on one of his twice-daily candy deliveries. A modern-day candy man of sorts.

“Hugs and Kisses from Ky” is his and his family’s way of thanking the doctors, nurses, therapists, aides and others at Riley Hospital for Children who have taken care of him these many weeks.

“We started ‘Hugs and Kisses from Ky’ when we got here in June,” said Malinda, who can pull all of the dates of her son’s surgeries and hospitalizations right out of her head. Each date is committed to memory. Each one is a reminder that her son has faced down death and lived to fight another day.

HEART DEFECT AT BIRTH

Ky returned to Riley in late June after having open-heart surgery for a leaky valve June 10. The surgery, his third open-heart surgery at Riley since he was born, was to address a condition called truncus arteriosus, a defect in which a person has one large artery instead of two separate ones to carry blood to the lungs and body.

He has been under the care of Riley cardiothoracic surgeon Dr. Mark Turrentine since shortly after he was born in Fort Wayne, seven weeks premature.

A Riley cardiologist who evaluated the 3-pound preemie at birth prepared his parents for a rocky road ahead.

“He told us we had an hour to hold our son before he was transported down to Riley,” Malinda said. At the time, Trent called Ky his “keychain baby” because the little guy fit in the palm of his hand.

The Warsaw, Indiana, couple would spend the next four months at Riley with their son. Ky had his first open-heart surgery to close the ventricular defect and reconstruct a heart valve Dec. 1, 2014, two months after he was born.

“He was a tiny guy. He struggled,” Malinda said. “As a first-time mom, I went through crazy turmoil.”

But Dr. Turrentine worked his magic.

“That man is a blessing,” she said.

A MOTHER’S TEARS

Ky pulled through like a champ. It would be four years before he would need another surgery, but two more have followed. At one point, Ky even went to his mother and told her was ready to go “home.” When she said, “Bubba, we are home,” he said, “No, Mommy, home,” and he pointed to the sky.

That just about broke her.

“I couldn’t break down in front of him, but I went to my closet and cried.”

The setbacks have been tough, but the victories have been sweet. Through it all, a promise has been kept.

“My promise to him was that if he continued to fight for Mommy, Mommy is always going to fight for him,” she said. “He is my hero, and I tell him that every single night. He’s my strong warrior.”

When Ky and his parents arrived back at Riley six weeks ago, he was weak and fading fast. His cardiologist, Dr. Ryan Alexy, and Dr. Turrentine determined he was suffering from endocarditis, an inflammation of the heart’s inner lining caused by an infection.

Back to the operating room the heart team went.

“We had people around the world praying for Ky,” his mom said. “I didn’t know if I was going to be able to bring him home.”

KY’S SONG

One bright spot during this time was the connection a friend made with Songs of Love Foundation, a national nonprofit that creates free, personalized songs for kids facing physical or emotional challenges. Out of that came Ky’s song, the one his mom plays on her phone as she hands out candy to team members.

The song will be available on iTunes and other music platforms in several weeks.

“This is what makes my heart happy,” Malinda said, as she invited doctors on rounds and nurses at their stations to grab a piece of chocolate. “We stocked up on candy when he was on the third floor (in the Heart Center), and he filled his Jurassic Park remote-control truck and drove it through the hall to pass out Hugs and Kisses.”

Sara Murff, manager of clinical operations on 8W, said it is good to see patients out and about when they start to feel better.

“I know it brings a smile to all of the nurses when he and his parents are walking around the unit and handing out candy,” she said.

RN Lindsey Babb agrees. “It’s nice to know other people are appreciating our hard work,” she said. “They’re a sweet family, and they take good care of him.”

“I WANT TO GO HOME”

Ky is feeling better, and he and his parents are ready to go home. Lucky for them, today is the big day. They are headed home to Warsaw, where Ky will be reunited with his younger brother and sister, cousins, grandparents, friends and dog.

When the conversation turns to going home, Ky can’t contain himself. “I want to go home,” he yells, loud enough for everyone on the floor to hear.

His parents know this likely won’t be their last trip to Riley. Dr. Turrentine has told them he wants to see how many miles they can get out of the recent repairs before considering more surgery.

“We hope we can get through another four or five years and get him bigger,” mom and dad say. “We also know it could be a lot sooner.”

Everybody has their own battles, Malinda said, and no one is promised tomorrow. But she and Trent will continue to fight for their child.

“Just like the song says, he is the love and the light that the world needs to see.”

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https://www.rileychildrens.org/connections/her-kindness-made-a-lasting-impression-in-the-emergency-department Her kindness made a Lasting Impression in the Emergency Department 2021-08-03T09:41:00-04:00 2021-08-03T09:52:27-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Catherine Smith was working at a hospital in Texas last year when she heard about an opening for a child life specialist at Riley at IU Health North Hospital in Carmel.

It was 2020, several months into the pandemic, and she liked the idea of being closer to her family in Michigan. So she went for it. She got the job and started in her role working with pediatric oncology patients last December.

“It’s what I love to do, and this is an opportunity to do that and even more,” she said. “I was excited to jump on this team and get to learn here and help develop the program.”

What she didn’t expect was to earn a meaningful award just months into her new job.

Smith received the Lasting Impression Award last week for the impact she had on a teenage patient who came through the emergency department last spring.

For Smith, who was rotating through the ED that weekend, it was all in a day’s work. As a child life specialist, it is always her goal to put patients and families at ease during a stressful time. But for the teen’s parent, it meant more than she could know.

“Catherine, the child life specialist, has a true calling, and it is so evident in how she interacts with her patient,” the parent wrote in a nomination letter for the award, which is presented in Indy Suburban Region hospitals within IU Health. “She was amazing and funny and really helped make the actual moments (of) being stitched up so easy.”

In fact, the entire team at Riley at IU North went above and beyond to support not just their child but every patient and family in the ED that night, the parent said.

Dr. Rocky Singh, vice president and chief medical officer of the Indy Suburban Region Hospitals, was on hand last week, along with other members of the Lasting Impression committee, to present the award to Smith.

Sara Barnett, manager for volunteer resources and child life at IU North, describes Smith as “amazing and incredible” in her CLS role. “We are truly blessed to have her here. She really connects with her patients and families.”

In this case, Smith connected with her patient through music and jokes. As she recalls, the teen came into the ED after suffering an injury during a baseball game. Connecting with a teenager is a lot different than connecting with a young child, but her training prepares her for most any scenario.

“I chatted with him throughout the night and built a rapport,” she said. “It’s chaotic in the ED, especially when you’re sitting in the hallway, but when it was time for stitches we brought him into a room. One of the things that’s really important to us as child life specialists is giving patients the opportunity to have some control over the situation and to have choices whenever possible.”

She remembers that her patient seemed calm, but nervous at the same time. She suggested putting on some music or a movie to distract him while he was getting his stitches. He picked the music, and they told jokes until the procedure was finished.

“It was a memorable experience for me because sometimes as a child life specialist our interventions work and sometimes they don’t,” she said.

This time, her approach worked. But she has to be prepared to support children of all ages.

“When I walk into a room with a patient, I’m constantly reading what are the emotions in the room, what are the stressors, who is this patient and family and what am I working with,” she said. “You can usually tell whether they trust you or whether they’re nervous and I just build my interventions based on that.”

Still, the approach is the same – it’s always patient-centered and family-centered, she said.

“We try to be on their level, whether that’s talking about CoComelon with a 3-year-old or talking about baseball with a teenager.”

Smith said she shares the award with everyone on her team.

“I love hearing feedback from patients and families that the work we do has an impact. It’s an awesome opportunity to boost the visibility of our team and show how we support patients and families throughout the hospital.”

Outside of work, Smith said you can usually find her playing music, traveling and adventuring, drinking coffee, or spending time with her family, which includes six siblings.

The Lasting Impression Award is presented to team members who go above and beyond their job description, demonstrating their dedication to IU Health’s mission and to providing an exceptional experience for patients, guests and team members. Anyone can submit a nomination for a team member to receive a Lasting Impression Award. Forms are available on all units in the suburban hospitals.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-riley-genetic-counselors-provide-support-to-parents PODCAST: Maternity Matters - Riley genetic counselors provide support to parents 2021-08-02T07:55:00-04:00 2021-08-02T07:59:36-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/amelies-angels-come-to-the-rescue Amelie’s angels come to the rescue 2021-07-29T09:13:00-04:00 2021-07-29T09:26:40-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

As far as Luisa Saucedo is concerned, the nurses gathered around her daughter’s hospital bed are angels – Amelie’s angels.

They are smitten with the little girl who arrived at Riley Hospital for Children on Feb. 7 weighing just 1 pound, 13 ounces. Today, Amelie is a robust 11 pounds with pudgy cheeks and bright eyes – when she’s awake.

Andrea Delmage and Erin Bevis, her primary nurses on day shift in the NICU, woke her up a little early Monday morning to give her a bath and make sure she was dressed in the adorable outfit her mom brought in for her first photo shoot.

Amelie yawns and stretches as the nurses prop her up for photos.

“She’s so cute,” the nurses say nearly in unison. “Can you wake up? Can you smile for us?”

COVID, THEN A COMPLICATION

Nearly 6 months old now, Amelie has been at Riley since the day after she was born 15 weeks prematurely in South Bend, Indiana. She was transported to Riley within hours, arriving in the middle of the night.

For Saucedo, a native of Bolivia, South America, it was a whirlwind. She had been visiting family in northern Indiana for the holidays and planned to return to Bolivia on Jan. 9. But then she tested positive for COVID-19. And while she didn’t get seriously ill, she had to rebook her flight home for Feb. 2.

That’s when things got even dicier.

The first-time mom suffered a placental abruption, a serious complication in pregnancy that occurs when the placenta detaches from the uterus, depriving the baby of oxygen and nutrients.

“She decided to be born,” Saucedo says, speaking in English despite not knowing much of the language when she first arrived at Riley.

Her daughter’s care team, which includes nurse practitioner Katelyn Redman, recall that they spoke to Saucedo through a translator in the first several weeks. Now, the new mom and her own mom, who are tag-teaming Amelie’s care, are able to communicate pretty well in English.

Back home in Bolivia is Saucedo’s fiancé and Amelie’s father, Cicero Polesso, who has not yet been able to meet his baby girl in person. He has had to make do with video calls and pictures.

Saucedo is thankful that her mother – Amelie’s abuela – is with her at Riley; the two have been staying at the Ronald McDonald House.

“MY MIRACLE BABY”

The English language is not the only thing they have absorbed while at Riley. It’s evident when you walk into the room how closely they have bonded with the nurses.

While Delmage and Bevis love on Amelie, urging her to smile for the camera, Saucedo remembers how she felt when she first arrived.

“At first I was afraid, but I also was blessed that I got to meet wonderful people,” she said. “I call them angels. And she is my miracle baby. I am so grateful with everyone here at Riley Hospital. We give thanks to God every day for sending me all these people.”

As a preemie, Amelie had the usual challenges of underdeveloped lungs and a heart condition that required surgery, but she has sailed through every challenge, Redman said, including a hole in her esophagus that healed in time.

“Every hiccup we’ve had, she just moves on. We’ve just been growing her and getting her lungs to heal. She has come a long way,” the nurse practitioner said. “And mom has been here every day, giving her milk. Born 15 weeks early and she is going to go home breastfeeding and bottle feeding probably in the next couple of weeks.”

HARD TO SAY GOODBYE

The bond between mother and baby is strong, the nurses say, and it makes all the difference. While they see lots of babies, Amelie stole their heart early on.

“We just fell in love with her,” Delmage said. “And them,” she said, nodding to Saucedo and her mom. “We joke all the time that we’re going back to Bolivia with them.”

It’s not often that the family of a patient starts to feel like your own family, Bevis acknowledged.

Redman said the hope is that Amelie is breastfeeding and bottle feeding well before she leaves with her mom and abuela on the 12-hour flight home.

“If she’s not quite there and we think it will take a little longer as some premature babies need, then we can talk about going home with some other feeding options, but we want to give her some time to show us what she can do.”

So while the goal is to get Amelie home, the thought of the family leaving as soon as next month tugs at everyone’s heartstrings just a little.

“It will be hard to leave this place,” Saucedo said. “I’m happy and excited because we are going home, but I am going to miss you,” she told the nurses. “I will keep them in my heart and hope someday my baby would meet them again.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/this-is-where-my-heart-is “This is where my heart is” 2021-07-27T13:30:00-04:00 2021-08-02T12:37:43-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Kearstin Deno didn’t think she could love anything more than her job as a nurse at Riley Hospital for Children.

Not until she gave birth to her first child, that is. Of course, she’s crazy about her husband, Nate, but there’s something about a baby that rocks your world.

Deno had been a nurse in the pediatric intensive care unit at Riley for a few years before leaving to have her baby. Plenty of new moms go back to work after having their babies, but Deno lives in Lafayette, about an hour away.

Deno family photo

“When I had my son, I was pulled because I drive an hour to and from work every day. Should I work closer to home?”

She decided to leave Riley and took a full-time job working with adult patients in Lafayette, but she agreed to work an occasional shift at Riley to get her “fix.”

She did that for a couple months, trying to make it work.

“I still had my ‘good for the soul days’ at Riley,” she said, “but it wasn’t a good fit for me, and every time I went back to Riley, even if it was once every two weeks, I knew I missed being here so much.”

So she did what her heart told her to do. She returned to Riley, alternating between two 12-hour days one week and three days the next, giving her plenty of time with her now 7-month-old son, Knox.

“SHE’S JUST A GEM”

Charge nurse Jane Watson couldn’t be happier that Deno is back working in the PICU.

“She’s just a gem,” Watson said. “She makes your heart happy when you see her. It’s hard for her to have the extra drive time, but she slipped right back into gear like she never left. It is a true gift to get her back.”

Deno converses with a coworker

For Deno, it is a blessing to be back where she believes she is meant to be.

“I love my job, and I love going to work every day,” she said. “When you know where you’re supposed to be – and you leave and come back – it’s eye-opening. This is where my heart is; this is where I have a purpose, besides being a mom.”

On the days she works, Deno leaves at 5:30 in the morning when Knox is still asleep and he’s in bed by 9 p.m. when she gets home, so it’s not easy. But she’s lucky that her mom and grandma take care of him while she’s working, giving her peace of mind. Her entire family has supported her return to Riley, joking that she is in a much better mood now.

“When you’re happy with your job, it’s just so worth it,” she said.

DREAM JOB

Deno grew up in Lafayette and decided as a freshman in high school that nursing would be her career path after learning about the care a young cancer patient received at Riley. She went on to the University of Indianapolis for nursing school and found her place in the PICU as a tech before she completed her RN degree.

“Those nurses handle anything and everything with such grace,” she said. “I knew it would be amazing to be here.”

As dream jobs go, it’s everything she hoped it would be.

“When you walk into Riley, I feel like the atmosphere is just so different from any other hospital. People actually want to work here,” Deno said. “In the PICU, there’s a new learning and growth opportunity every day for me, and I love being able to connect with families and patients.”

Watson has seen those connections first hand.

“She’s so good for those families. She brings that little ray of sunshine during their darkest moments, a gentle, compassionate, bright light.”

Deno baby photo with dog

Deno said she worried that when she became a mom it would be harder to care for her patients – that she might be too emotional.

“I’m a pretty emotional person, but when I’m at work, those emotions are factored into the care and I’m able to focus on the patient,” she said.

“They are in the most vulnerable spot of their lives, and I just have so much compassion for them. I feel like now that I am a mom, any of the patients are like my children now. How would I want someone to care for my child?”

That’s what Watson means when she describes Deno as “the ideal nurse.”

Not only is she skilled, hardworking and a team player, but she gives a little piece of her heart to every patient she takes care of, Watson said.

“She is one of those people you love to see her name on the roster for the day because you just know everything will be OK. You can turn her day upside down with whatever assignment you ask her to do and she’s just always so pleasant, always so willing to do whatever it takes for the greater good,” Watson said.

“She just leaves a little sparkle wherever she goes.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-lifeline-respiratory-therapist-shares-what-its-like-to-care-for-sickest-babies PODCAST: Maternity Matters - LifeLine respiratory therapist shares what it's like to care for sickest babies 2021-07-26T08:16:00-04:00 2021-07-26T08:27:24-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/five-year-old-loves-unicorns-music-and-her-riley-team Five-year-old loves unicorns, music and her Riley team 2021-07-25T11:36:00-04:00 2021-08-02T10:24:40-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

From the day she was born, Londyn Mae Hoffman has been on her own schedule. Londyntime, her parents call it.

It’s the name of her Instagram page … and it’s the pace she sets for everything – from development as a baby to treatment for cancer.

Londyn is 5 years old and has a lot going on.

A rare genetic mutation without a name, a rare cancer, and now, a rare neurological condition.

Londyn and her stuffed animals in Riley Children's Hospital

It’s no wonder that her parents, Adam and Jenna Hoffman of Westfield, have supported her love of unicorns, a rare mythological creature replicated in stuffed animals, blankets, cookies and more in her room at Riley Hospital for Children, making their daughter feel all the more special.

“Genetics was really where our true adventure started at Riley,” Jenna Hoffman said.

As her mom talks, Londyn is happily participating in occupational therapy from her perch in a rocking seat beside her hospital bed. Almost 6 now, the precocious child who loves to host dance parties even when she can barely move wants to have the door open to her room so she can say hi to people passing by.

“She’s friendly and happy and loves people,” Jenna said.

But as a baby, Londyn wasn’t meeting traditional milestones. She wasn’t crawling or sitting up at around 6 months of age like the couple’s older children, Lincoln and Luci, had.

The Hoffmans talked to their pediatrician, and Londyn began receiving therapy through First Steps Indiana, but no one could identify an obvious reason for her developmental delays.

By the time Londyn was a year old, she started coming to Riley “to see all the ’ologists,” Jenna said. “We just knew we had to advocate for her, so we got referrals from her pediatrician to every single ’ologist we thought would be able to help her.”

Meanwhile, Londyn was “happy as heck,” her mom said. She wasn’t in pain; she ate well. She just wasn’t doing normal kid things like crawling and walking.

When specialists in neurology and cardiology weren’t able to pinpoint a reason, the family worked with the genetics team at Riley and began genome sequencing to determine if Londyn suffered from a syndrome that would help explain her delays and guide her treatment.

“We found out she had two gene changes, but her gene changes don’t match up to anything,” Jenna said. “We tried to explain it to our family and our kids – why Londyn is this way. She’s rare and unique and she was born this way. So my daughter Luci says, ‘Oh, like a unicorn!’ That’s stuck with her since she was about 2.”

Londyn receiving visitors while in the hospital

Londyn, whose name is a nod to the city her mom was visiting when she found out she was pregnant, carried on, doing things in her own way, in her own time. She learned to walk when she was 3, and the family celebrated with – what else – a walking unicorn party. Her speech came along in time, as well.

Up until this point, she wasn’t on any medicines, and there was no real explanation for her delays, other than what was called “an unknown diagnosed genetic condition.”

“So, she’s super rare,” Jenna said. “The hope is someday all of her genetic sequencing stuff will be in a genetics bank with her DNA so she’ll match up to other kids or adults like her and they’ll be able to put a name to it.”

That was the family’s original journey at Riley, which was enough. She was already participating in therapy three times a week to help put her on a path to success. She was enrolled in a developmental preschool in Westfield. She was happy.

The other shoe dropped in April when Londyn’s right eye started protruding. She was already seeing an eye specialist within IU Health for a droopy left eyelid that required corrective surgery when she was 1.

More tests, more anxiety. This time, the diagnosis was more clear-cut: rhabdomyosarcoma. A tumor was growing behind her eye, and it was growing fast.

Rhabdomyosarcoma is rare. About 500 people are diagnosed each year in the United States. Most are children or adolescents.

Londyn was four weeks into the recommended 24 weeks of chemotherapy at the Riley Outpatient Center when in early June she began losing muscle strength. She had trouble walking, even holding her sippy cup, her mom said. She began slurring her words.

It was more than a reaction to the chemo.

The third shoe dropped. Londyn had picked up a cold at some point, and that led to another condition called Guillain-Barre Syndrome, a rare disorder in which the body’s immune system attacks the nerves. Weakness and tingling in the extremities is usually the first symptom, but the sensation can quickly spread, paralyzing the body.

At Riley, Londyn was intubated quickly because she was having trouble breathing. That was the beginning of a very long four weeks in the pediatric intensive care unit, during which time she received IVIG (intravenous immunoglobulin) treatment for the Guillain-Barre. Her oncologist, Dr. Michael Ferguson, checked on her every day in the PICU, Jenna said. “He’s amazing.”

Multiple times, when all the signs said Londyn was ready to get off the ventilator, her parents stood by trying to calm her as doctors carefully worked to extubate her. Multiple times they were unsuccessful, leaving her parents understandably distraught. Londyn was on the ventilator 25 days. It took a procedure in the operating room to remove scar tissue from her esophagus before she could finally be free of the tube in her throat.

“She was awake the whole time on the ventilator, which was a good thing, but it was hard on the mama heart,” Jenna said. “She was trying to communicate and it was frustrating for her.”

A few days later, in mid-July, Londyn was discharged to the hematology-oncology unit. While there, Jenna delivered custom-made unicorn cookies to the PICU team as a thank-you for their care.

Unicorn cookies

Londyn didn’t have much time to settle in on the hem-onc unit before she was transferred to in-patient rehab, where she is already rocking her rehab with multiple daily sessions focused on physical, occupational and speech therapy.

Through it all, the spunky little girl has remained cheerful, while her parents have remained her fiercest advocates, a trait that endeared them to Dr. Sasha Kapil, a fourth-year resident who rotated through the PICU during Londyn’s time there.

“The thing I love most about the Hoffman family in general – they are the kind of people who have inspired me to go into medicine,” Dr. Kapil said. “They asked so many good questions from the PICU staff and myself, and they were constantly learning about Londyn’s care.”

Jenna encourages every parent to do the same, adding that Dr. Kapil and second-year PICU fellow Dr. Yahya Nomaan were direct, honest and compassionate at the same time.

“You have to be your child’s advocate, even when you’re sitting in the room with the smartest doctors in the world,” Jenna said. “You can’t be afraid to ask the questions or give suggestions. You know your child best. Sometimes you feel like you’re speaking out of turn because everyone is moving so fast in these situations, but I found that the more we spoke up, some of our ideas were considered.”

That’s a message Dr. Kapil wants to convey to every family at Riley.

“We want to work closely with you. We understand that everything you say … you are saying because you care about your baby. I know it’s coming from this deep care, and I appreciate when people advocate for their family members like that,” Dr. Kapil said. “I think every pediatrician, everybody in the PICU, hopefully everybody in medicine would say the same thing.”

Londyn in the rehabilitation unit

Now a week into her stay in the rehab unit, Londyn has already left an imprint on the hearts of the team there, just as she has wherever she’s been.

“She continues to be our special unicorn,” Jenna said. “She just makes everyone happy.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/from-nightmare-to-dream-come-true From nightmare to dream come true 2021-07-22T10:04:00-04:00 2021-07-23T07:31:10-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

When Richard Barnes steps out onto the pitcher’s mound at Victory Field this weekend, it will be the culmination of a long and difficult journey.

And he’s only 15.

The incoming sophomore at Rushville Consolidated High School was selected to throw out the ceremonial first pitch at an Indianapolis Indians game as a nod to his victory over a rare and mysterious illness that strikes children who have tested positive for COVID-19.

Multisystem Inflammatory Syndrome in Children typically occurs between two and six weeks after an initial COVID infection. It can be difficult to diagnose, but it can cause inflammation of the heart, lungs, kidneys, brain, skin, eyes and/or gastrointestinal organs.

In Richard’s case, it started with a fever at school last January, about a month after he and his entire family came down with COVID. Richard had a mild case of COVID and bounced right back, but MIS-C landed him in the emergency room at one hospital, before being transferred via ambulance to Riley Hospital for Children with what doctors initially thought might be appendicitis.

“It felt like a normal headache at first,” the teen said, recalling the morning when MIS-C first took hold. He took ibuprofen and went to school. All was good until the last period in school when he felt miserable. He went to the school nurse, who told him he had a fever of 101.

Things got worse after he went home. He collapsed on the couch to sleep, then woke up with what he describes as “the worst pain I’ve ever felt in my life.”

That marked the beginning of his battle with an illness that knocked him off his feet for weeks. He was in the intensive care unit at Riley for several days, and even when he went home, the football and baseball player couldn’t return to his normal activities for months.

“I thought I was going to have a quick surgery … and I could get better and go back to sports,” he said. “I had never heard of anything like this.”

Dr. Samina Bhumbra, associate medical director of infection prevention at Riley, was one of many doctors to treat Richard and is studying the long-term effects of MIS-C.

Because there is not one, single test that can diagnose kids, it takes multiple specialties getting involved, she said. Apart from fever and gastrointestinal symptoms, Dr. Bhumbra said the next most-common sign is redness of the eyes and skin rash.

Other symptoms can include irritability and decreased activity, diarrhea, vomiting, belly pain, cracked lips or a red, bumpy tongue, swollen hands and feet and swollen lymph nodes.

Richard has only vague memories of being in an ambulance and being transferred into and out of ICU, but his parents, Steve and Mary Beth, were terrified for him.

“Watch your kids, especially if they’ve had COVID,” she said. “As a parent, it was very scary. We’re very lucky.”

Now six months out from his fight with MIS-C, Richard is back doing what he loves most – working out and playing sports. Waiting was the hardest part.

“My dad had to try to hold me back,” he said.

He did manage to join his high school baseball team for the tail end of the season and talks about how it felt to be back on the diamond.

“When I first got on the field, I did have tears in my eyes and I looked up at the sky and said, ‘I’m here.’ That was amazing for me to finally be back on the field.”

And now he steps onto a bigger field Saturday night for the start of a Minor League match-up between the Indianapolis Indians and the Toledo Mud Hens.

“I’ve always dreamed of playing in the MLB and dreamed of being on the field … it’s surreal that because of all this I get to have that chance now.”

Related stories:

Parents “blindsided” by COVID-related illness in kids - Mysterious MIS-C typically strikes adolescents several weeks after exposure to the coronavirus. Two Indiana families are breathing easier as their boys come home from the hospital.

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https://www.rileychildrens.org/connections/jumping-in-the-not-so-deep-end-of-water-safety Jumping in the not-so-deep end of water safety 2021-07-22T07:00:00-04:00 2021-07-19T15:50:07-04:00 Summer temperatures are steady, and vacations are in full swing, but water safety is a year-long issue to consider.

While most think of pools, lakes, and other bodies of water when talking about water safety, it’s important to note that water safety covers much more. “Kids can drown in as little as one to two inches of water,” says Riley Physicians pediatrician Jeremy Mescher, MD. “It’s important to be vigilant and supervise at all times.”

According to the American Academy of Pediatrics (AAP), drowning is the single leading cause of death among children aged 1 – 4. The most common source of drowning accidents is the home. This could be a home pool, bathtub, a bucket of water, or even the toilet bowl.

There are many things parents can do to help prevent these accidents:

  • Get rid of distractions and be vigilant. Put away your phone, avoid drugs and alcohol, and remove other distractions when supervising children in water. It may be a good idea to take shifts with another responsible adult.
  • Get rid of open water sources. For example, dump baby pools when you’re finished using them for the day, use childproof locks on toilet seats and do not leave children unattended in a bathtub.
  • Make sure children wear life vests if they have not taken swim lessons and continue to watch them even after they take swim lessons. “Don’t have a false sense of security with lessons. Water watcher rules still apply,” says Dr. Mescher.
  • Start kids in swim lessons. The AAP recommends swim lessons as a layer of protection against drowning that can begin for many children starting at age 1. Children develop at different rates, so not all are ready to begin at the same age.

When considering swim lessons, it’s important to consider your child’s developmental stage and trainers. Some children may have anxiety or fear around water or groups of people, so private lessons may be a better option. “Always look for trainers that are CPR certified, and make sure there is a good ratio of students to instructor for classes,” advises Dr. Mescher.

When it comes to open water safety (such as oceans and lakes), educate children so they know what to expect and how it differs from pool water. Waves, undertows, and unpredictability make open water swimming different, and therefore kids should always wear life vests. Kids and adults should also never swim alone in open water.

Swimming is a great way to exercise and socialize for children when appropriate protections are in place, so remember to play it safe when out having fun this summer.

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https://www.rileychildrens.org/connections/mr-bubbles-brings-smiles-to-kids-on-8-east “Mr. Bubbles” brings smiles to kids on 8 East 2021-07-21T14:12:00-04:00 2021-07-21T14:27:19-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

He’s known as “Mr. Bubbles” on 8 East. A loving tribute to a man – a teddy bear really – who spends his days bringing smiles – and bubbles – to kids at Riley Hospital for Children at IU Health.

Ed Tekulve has been a patient care assistant on the unit for 11 years. It’s a job he came to late in life, after working many years in warehouse management. But a conversation with his wife, Linda (now retired from her job as a secretary at Riley), and some of her friends put him on a path to a career in healthcare – first as a certified nurse assistant and then a PCA.

It was one of the best decisions of his life, he believes.

“The interaction with the kids is the best part,” he said. “I have a grandpa attitude and they love it, but I try to help both the patients and the parents. It’s a good feeling when I can do that.”

Unfortunately, Tekulve, a father of two and grandfather of two, is putting away the bubbles for a new assignment – sterile processor at IU Health University Hospital.

“I love the kids, but I need to do something different,” he said, adding that at 59, his body is starting to complain a bit.

He completed a sterile processing certification course offered through IU Health and Wayne Township Schools and begins his new assignment next week.

Today (July 21) is his last day at Riley.

“No doubt it will be hard for me to leave the kids,” he said. “I think everybody I work with here knows that.”

Indeed, Sarah McGregor knows that. Tekulve trained her as a tech seven years ago, and now she is a nurse on the same unit. She remembers how proud he was when he first saw her in the red Riley nurse uniform, even if his pride was couched in a little teasing.

“Look at you in your snazzy red,” he said to her, all the while pleased that she followed her dream.

“He has a heart of gold and loves taking care of the kids,” McGregor said. “He never complains, no matter how many times he gets floated to a different unit in a shift or how many patients he has. I know it’s hard for him to leave. That’s why we need to celebrate him and how much passion he has for the kids.”

While there was no formal party planned due to COVID restrictions, McGregor and others on the unit made sure to acknowledge their friend and co-worker in small ways. And that suits Tekulve just fine.

“It will probably be a little heart wrenching for me,” he said.

Still, he learned a lot from the people he worked with, and he hopes he might have taught them a thing here and there.

“We have good camaraderie. I’m old school and don’t know technology, so they tease me about that. But I bring my life experiences,” he said, “and I encourage them to think outside the box.”

On his last day on 8 East, he made one more trip to the supply cabinet to get bubbles for a patient. Marlowe Bacon is 14, so it’s been a few years since she enjoyed that bit of child’s play. But bubbles aren’t just for little kids, Tekulve said.

“I’m 59, and I blow bubbles.”

Nicole Klein, manager of clinical operations on 8 East, said Tekulve has been “an integral part of the 8E team and the excellent care that is provided throughout Riley Hospital.”

“Ed always brings a positive, caring attitude to work, no matter what task is asked of him. Whether he is assisting a nurse, fitting a child for a car seat, or providing 1:1 care to a patient, he always gives the best of himself. We will greatly miss Ed on 8E but are so excited for him and his new career path in Sterile Processing.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/i-never-knew-i-could-love-someone-so-much “I never knew I could love someone so much” 2021-07-20T12:05:00-04:00 2021-07-20T12:26:18-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Rachel and Brandon Boyer knew they would love their first-born child. Of course they would.

What they didn’t know, as new parents, was just how big their hearts would grow when Kohen Thomas Boyer entered the world.

And baby Kohen couldn’t wait to find out. The little guy arrived almost two months early and has been in the neonatal intensive care unit ever since – first at IU Health North Hospital, then at Riley Hospital for Children at IU Health, and now back at IU North, closer to home for the family.

The boy gets around.

Rachel Boyer is a nurse at Riley, where she has been caring for kiddos on 8 West for five years. Never did she expect to be the mama of a Riley baby herself.

But the first sign that her pregnancy might be difficult was at 18 weeks, when IU Health maternal-fetal medicine doctors determined that Kohen wasn’t growing as he should.

He was labeled “growth-restricted,” Rachel explained, measuring in the 9th percentile. Anything less than the 10th percentile is considered growth-restricted.

“He grew a little, then fell off and he was in the 5th percentile,” she said. “So we knew he was going to come early. We just didn’t know how early.”

What they also didn’t know was that Rachel would develop severe pre-eclampsia, a life-threatening condition that happens in some otherwise healthy pregnant women. It is characterized by extreme high blood pressure and signs of organ damage, most often to the liver and kidneys.

Pre-eclampsia usually begins after 20 weeks of pregnancy in women whose blood pressure had been normal. Besides high blood pressure, warning signs include: blurred vision; headache; swelling of the face, hands and feet; upper abdominal pain; vomiting; shortness of breath.

Because Kohen had already been labeled growth-restricted in utero, Rachel was getting ultrasounds weekly. Those appointments also included blood pressure checks.

“It came on very quickly,” the new mom said. “My blood pressure was fine and all of the sudden it went from mild to severe pre-eclampsia within a week. My doctor said I could get super sick super quick, and she was right. It was really scary.”

She was admitted to the hospital at 31 weeks for what was supposed to be an overnight stay, during which time Kohen would receive steroid treatment in utero to help mature his lungs. That stay ended up lasting for five days.

Rachel went home for two days before her next appointment, at which time her blood pressure had moved into the severe category. Kohen was delivered by emergency C-section three days later when he developed a heart arrhythmia.

That was June 20. Kohen weighed 3 pounds, 7 ounces at birth. He was transferred from IU North in Carmel to Riley in Downtown Indianapolis because doctors thought he would need surgery to correct an opening between blood vessels leading from the heart (Patent Ductus Arteriosus, or PDA).

In the end, surgery was not required, but Rachel and Brandon are grateful for the care they and their son have received at both hospitals.

Even the premature delivery came with a sense of relief, they said.

“With how progressively worse I was getting, and learning about his arrhythmia, we both felt relief knowing that now Kohen can be in an environment where he can grow,” Rachel said, noting that their baby had fallen into the 1st percentile before he was born.

“Now both can be safe and get healthy,” Brandon said of his wife and son.

Kohen, now closing in on 5 pounds, is currently working on breastfeeding, as well as breathing without the support of extra oxygen, but he is making progress every day, his parents say.

For Rachel, being surrounded by familiar faces both at Riley and North has been a blessing.

“I’m thankful the medical teams have all been very open and honest,” she said. “They do a good job of explaining things in a way that Brandon can understand too, and they aren’t just treating me like a nurse. I work on a lung floor, so I get that part, but when it comes to the heart and the prematurity, I don’t really know much about that, so it’s been nice to learn.”

Rachel, who before this had never been in a hospital as a patient other than when she was born, learned a lot – about herself and the care she delivers.

“I know I’m going to be a better nurse because of this. I’ll be able to relate to my patients – a lot of them have been preemies. I’ll be able to relate better to the families … and just the joy of being a mom. I would do anything for him,” she said, as he sneezes in the background.

“I never knew I could love someone so much.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/heading-back-to-school-safely Heading back to school safely 2021-07-19T10:00:00-04:00 2021-07-19T10:09:03-04:00 The widespread availability of safe and effective COVID-19 vaccines means students, parents and teachers can look forward to a school year that’s closer to normal. While there’s reason for optimism with schools resuming in-person instruction and extracurricular activities, the full return to pre-pandemic normalcy will likely take more time.

“We don't know yet what the beginning of school is going to look like,” says Sarah Bosslet, MD, a pediatrician with Riley Physicians. “In terms of masking and social distancing—especially for younger kids who aren’t able to be vaccinated yet—things may look similar at first. We expect there will be incremental changes throughout the school year, as more people get vaccinated and the number of cases continues to decline.”

Bosslet says this is especially true for Indiana, one of the earliest states returning to school following summer break. With some Hoosier school systems starting class in mid- to late July, schools are working hard to take the updated back-to-school guidance the Centers for Disease Control and Prevention (CDC) released this month and implement it in a way that makes the most sense for their school community. Depending on vaccination rates, COVID-19 infection rates and the physical facilities of a particular school, control measures may vary widely across the state at the beginning of the school year.

Vaccination will continue to play a key role in how soon school can safely return to normal. Currently, everyone over the age of 12 is eligible to receive a vaccine.

“Besides being protected against COVID-19, children and teens 12 and older who are vaccinated don’t have to quarantine; if they’re exposed to the virus and remain asymptomatic, they can continue to socialize with their friends and participate in clubs, sports and other activities,” Bosslet says. “Based on the safety and effectiveness of the vaccines, we’re strongly encouraging parents to get their eligible children vaccinated—and to get vaccinated themselves—to ensure a back-to-school experience that’s as normal as possible.”

The American Academy of Pediatrics and the CDC both recommend COVID-19 vaccination for all children and teens age 12 and older. Additional information about COVID-19 vaccines for children and teens is available from the CDC.

"While children don’t have as high a rate of severe illness from COVID compared to adults, it does happen," Bosslet says. "More commonly, children can experience mild to moderate symptoms like loss of taste and smell, which can impact quality of life. There’s also the risk of spreading the virus to others and additional time away from school and friends, if they get sick and have to quarantine."

It could be several months until vaccines are approved for younger children. Until then, Bosslet advises kids under age 12 continue to wear masks indoors and in large crowds.

In preparing for the new school year, parents should check the CDC and Indiana Department of Health websites for the latest information. Parents also are encouraged to schedule any well-child visits, dental visits and other health appointments that may have been postponed due to the pandemic.

“We are all anxious for a return to normal,” Bosslet says. “The more people in our communities who are vaccinated, the sooner all of us—including our children—can enjoy that reality.”

To schedule a COVID-19 vaccination, visit ourshot.in.gov, iuhealth.org or call 211.

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https://www.rileychildrens.org/connections/podcast-maternity-matters-pregnancy-at-age-35-and-older PODCAST - Maternity Matters: Pregnancy at age 35 and older 2021-07-19T08:15:00-04:00 2021-11-10T11:16:57-05:00 ]]> https://www.rileychildrens.org/connections/teen-defers-dream-while-fighting-cancer Teen defers dream while fighting cancer 2021-07-15T10:50:00-04:00 2021-08-02T12:06:50-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Alex Santiago felt called to be a member of the military. A proud member of the U.S. Marine Corps hopefully, just like his grandfather.

But for Alex, that childhood dream has been deferred by cancer.

Just when he was within 7 pounds of his goal weight to join the service, he and his parents, Felix and April Santiago, got the devastating diagnosis: acute lymphoblastic leukemia.

“I wasn’t myself,” Alex said from his bed in the hematology-oncology unit at Riley Hospital for Children last week. “I started sleeping all day and getting sick.”

One day back in April, he remembers feeling cold, so he thought a hot shower would do him good. But once the water hit him, he felt dizzy and collapsed. His dad found him and took him to the small hospital near their home in Akron, Indiana (population 1,000+).

Alex smiles in the hospital with a signed shirt

April Santiago said doctors there told her his hemoglobin level was well below normal, indicating severe anemia. They gave him two units of blood and transported him via ambulance to a larger hospital in Fort Wayne.

Tests revealed the worst. The next day (April 19), Alex was flown to Riley in Indianapolis in critical condition. He was placed on a ventilator and spent the next several weeks in the pediatric intensive care unit at Riley, as doctors worked to stabilize him and find a chemotherapy regimen that worked for him.

That’s where PICU nurse Kelsi Lawless met the teen.

“He has come such a long way, it’s amazing,” she said. “It is truly remarkable to see how he has pulled through.”

With the exception of a couple days on the oncology floor, Alex spent 65 days in the PICU, his mom said, due to complications from his treatment. While there, he formed strong bonds with the nurses and therapists who he said made him feel less alone during a scary time.

Asked what he remembers from the PICU, he said, “Always having someone there for me even when mom and dad weren’t there. They always made me laugh.”

As a mom, April appreciates that more than she can say.

Alex talks with a nurse at Riley Children's Hospital

“The nurses here have such big hearts,” she said. “He was really scared, especially when he came back up to 5 (oncology) and he knew he didn’t feel good. He felt defeated when he went back to the PICU. They comforted him and did things like a dance-a-thon, they talked to him and brought in movies.

Lawless says his strength and his family’s support have made all the difference.

“He has been able to make big strides and is continuing the journey with his treatment,” she said. “He’s just one of those kids that you are in awe of because you have no idea how someone can be so strong.”

Now back on the oncology unit, Alex, who is under the care of oncologist Dr. Allison Yancey, is slowly making his way through treatment and trying to keep his head up. The former football player who graduated from high school last year has lost weight and muscle mass since he was diagnosed, so even participating in physical therapy is difficult because he is so weak.

That’s why when April saw her son work to reposition himself in bed by himself, she nearly cried. A small step, perhaps, but it was huge to her.

Oncology nurse Kayla Surface gave Alex a little pep talk when she stopped in his room to give him his medications last week.

“I’m doing good,” Alex told her, “but I’m tired of hurting.”

“I know that when you’re in pain it’s easy to get caught up in that,” she said. “But look at all you’ve done. You seriously have come so far. We are so proud of you.”

Signed shirt

His friends in the PICU and oncology have signed shirts and banners for him, celebrating his 19th birthday in June and offering encouragement. He posted his story on Snapchat, and word got out, leading to a flood of support from people around the world, including the Mikey’s Way Foundation.

“He has taken a few steps back, but we are making it out this time,” April said, hopeful that after Alex finishes this round of chemo, he can rebuild his strength in rehab, then go home for a couple weeks before starting his next treatment.

“This hospital has been amazing to all of us, just a very big blessing to us and we’re glad that he’s here.”

Santiago with Riley staff

Last weekend, Alex got to take a short trip outside his room to go back to the PICU, but this time it was on his terms. He just wanted to say hi to his friends there and thank them for helping him during his darkest days. He brought a poster board with him decorated with words and signs of appreciation.

The past few months haven’t been easy by any means, but April said she feels blessed to have her son at Riley.

She remembers how she felt when she and her husband received Alex’ diagnosis in Fort Wayne and then learned that he needed more care than they could provide.

“When you hear that, as a mom, you’re like, what do you mean you can’t take care of my child,” she said. “I broke down and fell to the ground. But they brought him here, and I could not have asked for a better team to help him.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/these-boots-are-made-for-walking-into-the-operating-room These boots are made for walking … into the operating room 2021-07-14T08:55:00-04:00 2021-07-14T10:07:32-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

As a kid, Brian Gray was a cowboy at heart.

He had the boots, and he had the horse (at his grandparents’ farm).

But kids grow into adults, and that little boy traded in his cowboy dreams for the life of a surgeon.

Today, Dr. Brian Gray is on the pediatric surgery team at Riley Hospital for Children at IU Health. And while he may have hung up his hat and left his horse behind, he never gave up his cowboy boots.

“I really enjoy wearing cowboy boots on a daily basis,” he said. “I find they are really comfortable to wear, especially in the operating room. They help my posture.”

Young Jafeth Romo-Gutierrez and his family noticed that Dr. Gray was wearing a pair of good-looking boots when he met with them after removing a large tumor from 8-year-old Jafeth’s kidney back in February.

An idea was born.

“In the post-op conversation that I had with the patient’s father, I was speaking through an interpreter, and at the end of the conversation, Dad had an extra question for me,” Dr. Gray said. “It caught me by surprise, but he asked about the cowboy boots I was wearing.”

The surgeon shared how he grew up riding horses and said his boots came from a company in Texas, but they were actually made in a city in Mexico called Leon.

As fate would have it, Jafeth’s father, Enrique Romo, and his family hail from the same area, where they worked as ranchers before coming to the United States.

“It was a really cool moment where we were able to bond outside of this really heavy diagnosis for his son,” Dr. Gray said. “So every time I saw the family after that, the dad seemed pleased to see I was wearing cowboy boots from his hometown.”

Leon, in the Mexican state of Guanajuato, is known as the “shoe capital of the world.”

Last week, Dr. Gray was notified that a package had been left for him on the oncology unit, where Jafeth returns for regular chemotherapy treatment to remove any trace of the cancer that had attacked his kidney.

“It was this amazing pair of handmade rodeo-style cowboy boots from their hometown in Mexico,” he said. “I was blown away. They are so kind.”

Dr. Gray put the boots to the test almost immediately, wearing them in the operating room while performing surgery.

“I’ve been wearing them all day today. They fit wonderfully.”

On Friday, the surgeon popped into Jafeth’s appointment in the outpatient oncology unit at Riley to say thank you in person to the young boy and his parents. Of course, he was wearing his new boots.

“How ya doing,” he greeted Jafeth, who was wearing a Chicago Cubs cap but no boots himself.

“Good,” the third-grader replied, giving the doctor a thumbs up.

“You look great,” Dr. Gray said. “I am great,” Jafeth responded.

The surgeon showed Jafeth and his parents the boots on his feet and thanked them again for their kindness.

“They’re awesome,” Jafeth said. “My dad had the idea and I said yes.”

Dr. Gray wondered how Jafeth’s dad had sized him up so accurately because the boots fit like a glove. But it turns out Enrique asked around to get the doctor’s boot size before placing the order.

“I am glad you are comfortable with them,” the older man said through interpreter Erika Ramos, again expressing his appreciation for the surgeon’s work.

“I would never expect something like this from a patient’s family,” Dr. Gray said, but no doubt he will treasure this gift and, more importantly, the goodwill that comes with it.

“I love what I do, even without the sweet, handmade Mexican cowboy boots.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/hi-im-pharah-paul-this-little-girl-has-captured-the-hearts-of-her-riley-team “Hi, I’m Pharah Paul.” This little girl has captured the hearts of her Riley team 2021-07-12T16:30:00-04:00 2021-08-02T10:15:28-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

From the sparkles on her butterfly shirt to the sparkle in her eyes, Pharah Paul brings light and life to everyone she meets.

The 3-year-old displays an innate fashion sense, with her floppy rainbow hat, her jazzy eyeglasses and her heart-shaped earrings.

She has left her rainbow shoes at home on this day at Riley Hospital for Children, but her mom will tell you she is a clothes horse, a tiny fashionista whose favorite color is purple.

Pharah Paul wears a rainbow had and posed with her family
Pharah Paul wears a rainbow had and posed with her family

“She has different shoes and hats for every day,” Natalie Paul said, laughing as her daughter twirled around the lobby of Riley. “She has more clothes and shoes than an adult female. She’s a little diva, but honestly it has helped her get through this.”

“This” is cancer. Wilms tumor to be exact. It is a solid cancerous tumor of the kidney that forms from immature kidney cells. It has already taken one of Pharah’s kidneys and a portion of the other.

The fight is on.

It’s a fast-growing cancer, so when emergency room physicians at Deaconess Gateway in Evansville – where Natalie Paul works as a patient care assistant – saw the bulge in Pharah’s abdomen and looked closer, they called for immediate transport to Riley.

THEIR WORST FEARS

“I asked one of the doctors, ‘Can you please just look at this and tell me I’m crazy. Tell me it’s a hematoma from falling, or poop, or appendicitis,” Natalie said. “I can deal with a one-time surgery and be done.”

But the doctor found what she and husband Craig feared most.

“He told me there was something in there – a foreign mass.”

Pharah smiles for a photo

Pharah was transported via ambulance from Evansville to Riley in Indianapolis that same night.

A lump they thought was about the size of a golf ball was actually as big as a grapefruit. And it had been growing inside Pharah since she was a baby.

The tumor had metastasized, so it was also in her lung and on her other kidney. Riley surgeon Dr. Troy Markel operated on Pharah to remove her right kidney, where the cancer had first taken hold, along with a portion of her left kidney.

That was followed by a heavy dose of chemo and 13 days of radiation to clean up the lungs.

And then the long slog back to normal. About 42 weeks of treatment.

Pharah, diagnosed Jan. 16 of this year, is about a third of the way through her ongoing treatment at Riley, said her oncologists, Dr. Tyler Severance and Dr. Melissa Bear.

Unlike some Wilms tumors that affect just one kidney and can be managed often through surgery alone, Pharah’s is aggressive, spreading to the second kidney, along with nearby lymph nodes and into the lungs.

“After removing one kidney and taking out as much as we could from the other kidney safely, we radiated what was left behind, and now we’re giving chemotherapy to treat any remnants of disease and help totally clear it from her system,” Dr. Severance said.

What makes that a challenge is that the kidneys are responsible for filtering and processing a lot of chemotherapy, he explained. So her remaining kidney has to work overtime to process and clear a lot of her chemo.

“We really want to treat this as aggressively as we can … but her remaining kidney is very fragile,” the oncologist said. “It is a tough balance.”

BIRTHDAY GIRL

But don’t tell any of that to Pharah, who returns to Riley for in-patient treatment July 19, the day after her 4th birthday. Dr. Severance said that while chemo can make kids pretty sick, his patient seems unfazed.

“When it comes to Pharah, her overall joy, demeanor and personality are totally immune to chemo. Even on her sickest day, she is still Pharah and she is still wonderful,” he said. “The whole team, from physicians to nurses to trainees to pharmacists, social workers, child life specialists, everybody is absolutely in love with her.”

Count oncology nurses Carol Hayden and Ashley Smith among Pharah’s fans.

“She is always a ray of sunshine and full of energy,” Hayden said, recalling how Pharah conducted a dance party with a glow stick in her room one day. “It was just the cutest thing.”

And then there was the time Pharah called Hayden into her room on a day when the nurse was particularly busy.

“Can we take a walk,” the little girl asked.

Of course, Hayden couldn’t say no, regardless of how busy she was. But it wasn’t just a quick walk.

“The walk turned into a sprint, and by the time we got done it was probably like two miles around the unit,” Hayden laughed. “It left her mom and me out of breath, but we just kept going, hopping and skipping, and she held my hand really tight.”

“FULL OF SPIRIT AND SPUNK”

Smith first met Pharah when the preschooler had just been diagnosed. A nurse on the hem-onc unit for just about 10 months now, she was working nights, and picked up Pharah as her first primary patient. When she would listen to Pharah’s heart with a stethoscope, Pharah would pull out her own stethoscope from the child’s doctor kit she received at the hospital and listen to the nurse’s heart too.

“She’s just a good kid, full of spirit and spunk,” Smith said, recalling how Pharah would poke her head out of her room when her mom would leave for a bit. She would greet everyone with the same bright smile and the words, “Hi, I’m Pharah Paul,” followed by a compliment like: “I like your shoes” or “I like your earrings.”

Pharah wears bright colors and smiles

“She’s so funny and a joy to take care of,” Smith said. “And her parents are great, too.”

Hayden, a nurse for 2½ years and a PCA on the hem-onc unit for several years before that, considers herself lucky to have met Pharah.

“I love all my patients, but she’s definitely made a big impact on me.”

The nurses’ compassion and care have meant a lot to both Natalie and Craig, who have also been lifted up by friends and family in Evansville and in Indianapolis, where they stay with close friends when Pharah needs treatment at Riley.

“Both Ashley and Carol adore her,” Natalie said. “They were there in the beginning … it’s a comfort.”

“All the nurses fight over who gets to take care of her,” Craig said.

“A JOY TO BE AROUND”

Dr. Severance has seen his young patient power through her illness, still leading with her joyful spirit.

“She can befriend anybody at any time,” he said. “It doesn’t matter how much chemo we throw at her, how much surgery, how much radiation, she’s still just happy and loves to be around folks. She’s the kind of person you volunteer to take care of because she’s just a joy to be around.”

Pharah’s care team extends well beyond oncology, he added, explaining that Wilms tumor requires a multidisciplinary response.

“We really have collaboration among the oncology team, the surgery team, the radiation-oncology team, pathology, radiology, nephrology … so many groups come together to help navigate this,” Dr. Severance said.

“That’s one of the benefits of working at Riley. We have wonderful collaborating specialty services that really help us care for patients like Pharah.”

The oncologist, who just completed his fellowship at Riley, returns as full-time faculty next week and will continue seeing Pharah and her parents through this difficult journey.

“Mom and Dad are just wonderful,” he said. “They approach chemotherapy like veterans, even though she’s still pretty early in treatment, and that’s with a baby at home. I can see where Pharah gets her resilience.”

AND BABY MAKES FOUR

Pharah is big sister to 6½-month-old Charley, who was born just a few weeks before Pharah’s diagnosis. The young family recently took their first trip to the beach, where Pharah had the time of her life.

Pharah's first time at the beach

Being together as a family is something they’ve not been able to enjoy as much as they’d like, so the beach was a special retreat.

“We’ve spent so much time away from Charley,” Natalie said, while in the same breath expressing gratitude for the way all of the grandparents have stepped up to care for their baby girl when Pharah has to be at Riley.

“It’s not just their granddaughter who is sick; it’s all of us going through this,” she said.

Natalie and Craig say they haven’t tried to explain too much to Pharah about her illness, keeping it on a level she can understand.

When it’s time to go to Riley, “we say she is going to go see her friends in red,” Natalie said.

“You just never think it’s going to be your kid. You see other families going through cancer, and you think, ‘I hope I never have to go through that.’ Now that we are, we’ve had to change our entire family dynamic,” Natalie said.

“It has affected everyone. It’s really been a domino effect – even our relationship as a couple had to change because we’re constantly in a state of pretense,” she said, explaining how they try not to let Pharah see how her illness terrifies them.

But when they come to Riley to see their “friends in red,” they let their guard down a little, knowing Pharah is in good hands.

“They are all so amazing,” Craig said. “It takes a special type of person to do what they do.”

Natalie agrees.

“Oh my God, everyone on the hem-onc unit has been so wonderful to her. We just could not have asked for a better place to have the treatment. She has soared through it.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-postpartum-recovery PODCAST - Maternity Matters: Postpartum recovery 2021-07-12T08:54:00-04:00 2021-07-12T09:11:49-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/new-riley-president-brings-a-bold-vision-for-the-future New Riley president brings a bold vision for the future 2021-07-08T08:17:00-04:00 2021-07-08T08:43:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Gil Peri arrived early for an interview to be the next leader of Riley Children’s Health. He wanted to do a little reconnaissance.

“I wanted to see this place wake up and see how people treated each other and how they engaged with patients,” he said.

And the result?

“I was amazed. I’ve been at top children’s hospitals. The compassion, the attention to detail, the focus and the empathy I observed here – those are my values – so it aligns nicely. I can’t wait to get to know the team.”

The new Riley president is doing just that through “listening and learning tours” as he visits Riley’s vast number of specialty and sub-specialty units, as well as non-patient-facing teams.

He identifies his management style as that of a servant-leader first and foremost.

“My style is to really understand the needs of our team members and what it’s going to take to enable them to be successful,” he said. “I want to make sure we’re taking care of each other so we can take care of our patients. I will role model that as well.”

TEAM APPROACH

Peri is all about team, and in his view, Riley is one team, everyone operating under the same tent. Early in his career, he began dedicating a block of time each Friday to round on a different unit in whatever hospital he was in. There was no agenda, no presentation. It was just a chance to see and hear from team members and to be seen as accessible himself.

To that end, the chocolate connoisseur has gotten into the habit of handing out chocolate on his Friday departmental visits. Last week, he launched his first “Chocolate Friday” tour at Riley, dropping in on the Heart Center, the new Mother-Baby Tower and a surgery unit.

His goal is to create an environment where people want to come to work and choose to stay. First, he plans to look at team member engagement scores to see how Riley is supporting its staff.

“We just had one of the toughest years in our history,” he said, referring to COVID-19. “I want to know how our team is feeling now, what supports they need as we go into post-pandemic. When you serve your team members, you serve your patients. I really believe in a team member first approach.”

REACHING HIGH

At 6 foot, 8 inches, it’s no surprise to hear that Peri was a basketball player in high school, alongside his twin brother, so he honed his competitive and team-building skills as a youth.

He had considered going into physical therapy in college, but then an adviser pointed him to a relatively new field at the time – public health. Turns out, it was a perfect fit, allowing him to combine his passions for science and caring for people while having a broad impact.

He earned master’s degrees in business administration and public health from the University of South Florida in Tampa, where he also obtained a bachelor’s in biology.

He comes to Riley from Connecticut Children’s Medical Center, where he served as president and chief operating officer, overseeing health system operations, strategy and innovation. Previously, he held leadership roles at two Top 10 pediatric hospitals, Children’s Hospital Colorado and Nationwide Children’s Hospital in Columbus, Ohio.

He believes Riley Hospital for Children at IU Health can and should be a Top 10 pediatric hospital in the nation. Currently, it hovers in the Top 20, though it ranks in the Top 10 in two specialties: Urology at No. 3, and Cardiology and Heart Surgery, No. 5. In addition, Riley is designated as the Midwest’s best hospital for children’s heart care, and it is ranked in nine specialty areas by U.S. News and World Report.

While rankings are an external validation of excellent work, he is not one to chase them, he said, choosing instead to be guided by great work and outcomes. The rankings will follow.

“Riley has all the foundational elements to impact more kids,” Peri said. “I think Riley has earned the position to impact all kids in Indiana and the broader Midwest. Now we need to take the next step in the Riley journey. In three years, we’ll be 100 years old, so what an honor to be able to help write the next chapter of the organization with a focus on helping more kids.”

Riley’s new maternity tower, opening in the fall, also has him excited about the future.

“I feel blessed to have landed here when all these things are happening. We will be one of the only children’s hospitals that has a maternity tower dedicated to moms and babies.”

Why is that important? Peace of mind, he says, for moms and families.

“We hope that nothing happens to that baby, but God forbid if something does happen, this is where you want to be because we have all the expertise for the baby and for the mom,” Peri said. “The team has done an amazing job designing this.”

It is one more way to ensure Riley’s continued pre-eminence in pediatric care, he said, making it a destination not just for Indiana families but beyond.

“Indianapolis is easy to get in and out of, it’s proximal to the whole country, we have the infrastructure to accommodate people, and most importantly, we have the clinical expertise to care. We do see patients from around the country, around the world, now, but we need to see more. That’s what I mean by impact,” he said.

“HUMBLE EXPERTISE”

In addition to his identical twin, Peri also has a younger brother. The boys grew up in Colorado and Florida, but Peri’s brothers now both live in the Cincinnati area and work for Procter & Gamble.

Peri’s grandparents are Holocaust survivors, and his dad was born in a refugee camp in Germany before moving to Israel with his parents. When he came to the United States, Peri’s father took the name Peri, rather than keep his given surname of Pollack.

As the younger Peri reflects on his move to the Midwest, he repeats something many of us have heard before – Riley is one of Indiana’s best-kept secrets.

But he wants to change that.

“I love what I’ll call our humble expertise,” he said. “It’s very true here at Riley. We have talent here that we could put up against any organization in the country. We have some of the best and brightest. My interest is to keep that humble expertise but to also be bold in letting people know what we’re doing here and the impact we have on kids.”

Bold but not brash.

“When I talk about being bold, I mean making sure all providers know that our outcomes, our access, our depth of expertise is why they should send their kids to us,” Peri said. “Referring physicians and parents should know about the expertise we have here. Literally there is a child here in Indiana right now who is going to an adult provider that doesn’t focus on kids or an alternative children’s provider that doesn’t have the depth that we have, and that child deserves to be at Riley Children’s. I really believe that,” he said.

“It's not growth for the sake of growth or for the sake of revenue, although those things help because we can reinvest into the community. It’s growth for the sake of impact.”

In his view, Riley will be the one writing the book on how to care for kids.

“We have some of the world’s experts right here. We’re going to continue to focus on quality and safety – the number one driver of outcomes,” he said.

After that, the attention must be on patient and family experience and accessibility. Only then can Riley grow, Peri said.

“Riley Children’s Health has the opportunity to impact kids before they come to the hospital, while they’re at the hospital and afterward,” he said. “We have to be a leader in that space, not just when kids are ill or injured.”

Peri and his wife, Bethany, a pediatric endocrinologist and informaticist, are sports and nature lovers, as well as theater buffs, so they are looking forward to experiencing all that Central Indiana has to offer. They have two children: Ari, 7, and Zoa, 5. The family will make their home in Carmel once they complete the move from Connecticut later this month.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/8-year-old-keeps-surgeon-parents-on-their-toes 8-year-old keeps surgeon, parents on their toes 2021-07-07T07:52:00-04:00 2021-08-02T10:29:19-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Lucas Reinoehl talks a mile a minute, his voice pitched high and excited. He talks about the newest video games, an owie on his finger, ice cream, football, and how he spied on third-graders during recess from his perch on top of a slide.

And that’s just in the first few minutes.

Lucas Reinoehl with his family wearing "Scoliosis Warrior" shirts

He goes on and on … for pretty much his entire visit at Riley Hospital for Children, while his parents, Tyler and Sarah Reinoehl, try to keep up. And try to keep him from saying anything too embarrassing.

“No filter,” his mom says, laughing.

“I was just looking, I was looking like a bald eagle,” Lucas said about his adventure on the playground, “and some of the kids got in trouble.” The words continue to tumble out. “Can someone teach me how to fly? Then I could escape school. I could just fly to my mom’s work.”

Lucas and his parents are at the Riley Outpatient Center for a follow-up appointment with Dr. Tyler Christman, an orthopedic surgeon who has been treating the 8-year-old for severe kyphoscoliosis – a curvature of the spine – for several years.

Lucas is comfortable here, having spent 46 days on Riley’s eighth floor earlier this year in halo traction to stabilize his spine. During that time, he loved nothing more than playing video games and making friends with his entire care team.

He has been a Riley kid since he was not quite a year old. His parents noticed he seemed to sit a little crooked, and X-rays revealed a significant curve in his spine. They were referred to Riley, despite the family living nearly two hours away in Ohio, and Lucas was fitted with his first upper body cast to stabilize his spine when he was 15 months old. He would go on to wear 15 more casts over the next seven years.

While casting can be curative for some kids with early onset scoliosis or infantile scoliosis, Lucas’ case is more serious. Casting helped keep the curve from getting worse, but it never got better. So halo traction was the next step, followed by surgery.

Lucas demonstrates the Halo-gravity traction

Halo-gravity traction pulls the head and spine upward carefully, applying a slow stretch to the spine. Doctors do this by attaching a metal ring that surrounds the head to a pulley system, with weight gradually added over time.

In March, Dr. Christman and Dr. Ryan Fitzgerald implanted growing rods that will enable the boy’s spine to correct over time. Today’s visit was the first during which Dr. Christman would gently place an electromagnet over Lucas’ back to lengthen the MAGEC rods. It’s a noninvasive procedure, but Lucas had worked himself into a state before lying face-down on the exam table with his arms outstretched like Superman, trying to distract himself with a video.

“This is probably going to be my worst nightmare,” he squeals in typical Lucas fashion, while his mom attempts to calm him.

Before this moment, he and Dr. Christman had been trash-talking about their skill levels on video games, a topic they bonded over early in their patient-doctor relationship.

“How you doing, buddy,” he asks Lucas, who wants to know how far the physician is on the game Zelda.

Dr. Christman sighs. “I’m so terrible at fighting that I haven’t been playing. After you left the hospital, I haven’t been able to get any tips, I can’t get past the shrines.”

From there they move on to Fortnite, Minecraft and Beyblade. Dr. Christman, a father himself, enjoys the banter, along with the challenge of keeping up with Lucas.

“Let’s get to business,” he says. “How has your back been?”

“Good,” Lucas says, before launching into a story about the time he bent down to scratch his leg, forgetting about the newly implanted rods in his back. “I actually cried.”

Not because he hurt himself, but because he scared himself by bending.

Lucas and his mother look at his X-rays

As they look at his X-rays, Lucas is telling another story about a missing guinea pig and a new puppy he hopes to get.

Dr. Christman does his best to keep up with the stories while he shares good news with Lucas and his parents.

“Look at how much taller you are now. This is where we started and you were leaning over so much. Look at how nice and straight and tall you are,” the surgeon says.

The lengthening treatment in clinic has Lucas standing just a smidge taller, 3 millimeters to be exact, for a height of just under 3 feet, 10 inches.

The soon-to-be third-grader puffs out his chest, and says, “Now those people at school won’t call me short anymore.”

Tyler Reinoehl says his son’s progress has been encouraging, despite the nerve-wracking surgery earlier this year.

Lucas receiving a check-up

“Dr. Christman did miracle work,” Reinoehl said, recalling how after the procedure, he, his wife and the surgeon hugged and cried. All were wearing their #TeamLucas/Scoliosis Warrior T-shirts made by a friend. The family is wearing theirs again today.

After reviewing the results of the X-rays, Dr. Christman goes over restrictions for Lucas. No rough-housing, no roller coasters, no bumper cars, no tackle football.

At that last one, Lucas can’t help himself. “I’m not gonna play football. Why would I ever play football?”

Before leaving, he asks if he can visit his old room on 8 West, but restrictions make that impossible. How about a trip to the vending machines then, he suggests. Or ice cream on the trip home.

“I’d actually like to do my life again here,” he says. “I had my own TV.”

He got to miss full-time school and play video games, but he also thrived in music therapy, learning how to play a keyboard – at full volume. At the time, only one parent was allowed to stay in the room, so mom and dad alternated visits.

“I think he enjoyed that one-on-one time with us,” Sarah Reinoehl said.

And he accumulated a lot of stuff.

“Getting everything out of that room took a long time. I think we had five wagons full,” she said.

“I’m famous at Riley Hospital,” Lucas says before leaving. Then, one more question.

“Do you know where the vending machine is?”

Dr. Christman will see Lucas back in about three months, when he will do the same rod-lengthening procedure to match the boy’s growth.

“I think the visit went really well,” he said later. “Lucas was clearly very nervous about his lengthening but had prepared by watching some videos online to get ready. He did great and was very brave.”

And now he’s living his best life this summer at home. No school, no back brace and plenty of time to play in his Papaw’s swimming pool.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/dr-ed-liechty-pioneer-in-neonatology-closes-out-distinguished-career Dr. Ed Liechty, “pioneer in neonatology,” closes out distinguished career 2021-06-29T08:08:00-04:00 2021-08-02T09:58:40-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Dr. Scott Denne is telling the story of the time his friend and colleague Dr. Ed Liechty hit a long drive on the golf course that took down a goose flying overhead.

“We thought it was dead,” Dr. Denne said to those gathered for Dr. Liechty’s virtual retirement party June 17. “It staggered around and finally flew off. It’s an amazing feat to hit a bird out of the sky.”

Especially when you’re not trying to.

The encounter likely left the golfers stunned as well, but it makes for a good story about Dr. Liechty’s golf prowess and his ability to drive a point home with few words.

Dr. Ed Liechty

Considered a “pioneer in neonatology” by his colleagues at Riley Hospital for Children at IU Health, he is officially retiring June 30 after a 34-year career marked by scientific discovery, global health advancement and the kind of moral leadership that inspires everyone to do better.

He turns 69 on June 29.

“I’ve known Ed since I was a resident and have learned that he is soft-spoken, but when he speaks I should listen because he always has something insightful to share,” said Riley neonatal-perinatal medicine division chief Dr. Laura Haneline. “He is an incredible clinician, scientist, role model, teacher and colleague.”

“Fundamentally good and decent” is how Dr. Denne describes his friend, with whom he teamed up for research into nutrition and metabolism in premature infants. That collaboration exceeded his expectations in multiple ways, he said.

“It’s so nice to have had a full career as I have with Ed as a close colleague … to be able to work with someone you can look up to as an example. He goes about it in a very quiet way, but he does in fact lead the way as an example for all of us.”

MOM WAS A NURSE

Ed Liechty was not quite 5 years old when his father died, leaving his pregnant mom to raise him and his siblings. The family moved from Nebraska to Goshen, Indiana, to be closer to relatives, then moved to Berne, Indiana, a few years later when his widowed mom – a nurse – remarried.

He had an inkling that he wanted to be a general pediatrician in a small to medium-size town, but life led him down a different path after graduation from Goshen College. He completed medical school at IU and did his residency and fellowship at Riley Hospital.

Dr. Ed Liecty school photo

“When I looked at residencies as a fourth-year med student, I was pretty sure I would hate neonatology … but the more I worked in the neonatal unit, the more I enjoyed it,” he said. He flirted with the idea of working in hematology and oncology, but the tiny preemies won him over.

That and the mentorship of Drs. Jim Lemons and Richard Schreiner, both former neonatology division chiefs who helped recruit Dr. Liechty back to Riley from West Virginia University School of Medicine, where he spent four years after his fellowship.

Told that Dr. Lemons described him as “one of the smartest people I know,” the unassuming physician quipped, “You know Dr. Lemons. He says that about everybody.”

To be fair, Dr. Lemons said Dr. Liechty has surprised many with his knowledge on a host of different topics.

“You don’t realize the depth of his knowledge until it surpasses your questions,” said Dr. Lemons, who also describes his colleague as compassionate, grounded in his faith and a researcher at heart.

Of Dr. Liechty and recently retired neonatologist Dr. Bill Engle, both of whom Dr. Lemons mentored during their early years at Riley, he said this:

“They’ve been so unwavering in their commitment and dedication to Riley, but really to enhancing the quality of care, which has changed so much over their careers. I look at them and I think about how superb they are. At their heart they are such good people. I think that’s what I cherish most.”

MEDICAL BREAKTHROUGH

Dr. Liechty spending time in Africa

Dr. Liechty divided his time between clinical work and research over the years, both here and in Africa, but also had a firm grasp of the business side of things, something he had to learn from the ground up when the department had only a half-dozen providers. Now there are more than 40.

He is perhaps best known for his work on the revolutionary surfactant drug treatment to improve lung capacity in premature infants. He and Riley Hospital were the lead author and institution in a large study involving many medical centers back in the late 1980s.

After the study was published in 1991, surfactant became the standard of care all over the world for preterm infants with Respiratory Distress Syndrome, Dr. Lemons said, leading to a significant decline in deaths of premature infants.

When pushed, Dr. Liechty will acknowledge his contributions to advancements in fetal and maternal medicine.

“They’re not Nobel Prize-type things, but incremental things,” he said.

Dr. Liechty taking care of a newborn in the hospital

Parents of babies whose lives were saved because of his commitment to better care likely would disagree with his tendency to downplay his contributions, but that is his way.

His wife of 46 years, Mary, has known “Ed” since he was about 8 years old, she said, and he’s never been one to call attention to himself, especially as a physician.

“I’ve seen a lot of different iterations of Ed and I’ve rarely seen a doctor,” she said. “I know he is one … but Ed usually left Dr. Ed at the office. When introduced to people outside of medicine, they often didn’t know he was a physician. He’d find something else to talk about.”

She recalled the time they were at a Little League game and a child got hit hard by a ball. Her husband ran out to the field to render aid, and people yelled, “Ed, don’t touch him until a doctor gets here!”

“They had no idea he was a physician, and he’d been on the board for a year,” Mary Liechty laughed. “As a family, we always appreciated that Ed never brought work home, and by that I mean he never brought work anxiety home. When he was home, he was with us.”

Dr. Ed with his wife and grandchildren

The father of three and grandfather of five won’t get bored in retirement, his wife said. He has plenty of hobbies – golf, gardening, fishing, hiking and watching British mysteries, to name a few.

“I’m going to look forward to more time with my friend,” she said of her husband. “I want to thank all of you for being his family away from us.”

GLOBAL HEALTHCARE

Dr. Liechty got his first taste of medical mission work while a student at Goshen College. He traveled to Haiti, volunteering for a semester. As a medical student, he and his wife returned to Haiti and worked in a rural hospital for three months. And in 2003-04, he and his wife spent a year in Kenya providing clinical care and teaching at Moi University, inspired by the work that Dr. Lemons was doing there to support women’s and children’s health.

He has returned to Kenya at least 20 times since then, he said, in support of international research he’s been a part of for the past 15 years.

He helped establish a pediatric residency program at the medical school in Eldoret, Kenya, and continues to be involved in collaborative clinical research in developing countries, serving as primary investigator for the Global Network for Women’s and Children’s Health Research, funded by a grant from the National Institutes of Health through 2023.

“Ed’s analytical mind, perseverance and creativity facilitated his success as a physician-scientist,” Dr. Haneline said, adding that he’s been a prolific writer, contributing dozens and dozens of book chapters, clinical papers, scholarly articles and research manuscripts during his tenure. In 2017, he was named distinguished professor emeritus at IU School of Medicine.

His memberships include: American Academy of Pediatrics, American Association for the Advancement of Science, American Pediatric Society, American Physiological Society, Indiana Neonatal Society, Midwest Society for Pediatric Research, Perinatal Research Society, Sigma Xi Research Society and the Society for Pediatric Research. He serves as chair of the AAP Section on Neonatal and Perinatal Medicine Coding Committee. He was named a Fulbright Scholar in 2003.

“The impact of Ed’s contributions to training physicians in Kenya has benefited thousands of children and will continue to have an impact for years to come,” Dr. Haneline said.

For his part, Dr. Liechty said he couldn’t have accomplished near what he did without the support of his family and his colleagues both here and in Kenya.

“I want to thank the nurse practitioners, the staff nurses and the RTs and all the people who worked in the Riley NICU,” he said. “It’s been a great ride.”

4RileyKids In honor of Dr. Edward Lietchty

Speaking of great rides, a new Riley wagon has been christened with Dr. Liechty’s name by the Riley Children’s Foundation, and the Neonatology Division has funded a neonatology emeritus lectureship honoring him, as well as recently retired Dr. Bill Engle and other faculty.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/what-really-happens-when-you-go-into-labor PODCAST - Maternity Matters: What really happens when you go into labor? 2021-06-28T09:33:00-04:00 2021-07-12T09:12:11-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/water-safety-tips Drowning – It’s Quick, It’s Silent and It’s Preventable 2021-06-25T14:52:00-04:00 2021-06-25T14:56:15-04:00 Approximately every 9 hours a child in the United States drown, or almost 900 children between 0-19 drown each year.

Leading causes of unintentional injury death in Indiana:

  • #1 reason for children ages 1-4
  • #2 reason for children ages 5-14
  • #3 reason for children ages 15-19

If a toddler or child goes missing, look in the water FIRST!

How to be safe around pools:

Fencing

  • At least 4 feet high and surround the pool on all 4 sides (separate from the house and play area).
  • Self-closing and self-latching gate, with the latch out of child’s reach, at least 54 inches from the ground.
  • Non-climbable. Chain-link fences are not recommended, but if they are used the opening should be 1 ¾ inch or smaller.
  • Slats should have no more than 4 inches of space between them.
  • When a pool is not in use
    • Keep the gate locked
    • Remove toys so children are not tempted to enter the pool area unsupervised
    • Use alarms on the pool, the pool fencing, and house doors.

Learn more about safety barriers around pools from the U.S. Consumer Product Safety Commission.

Pick an Adult “Water Watcher” for Supervision When In AND Around Water

  • Water watcher should
    • Be close, watch constantly and without distractions,
    • Put the cell phone down
    • Avoid other activities
    • Avoid using alcohol or drugs
    • Wear a tag to identify who is the “water watcher”
    • Switch off with another adult for breaks and be sure to hand them the tag to identify the “water watcher”
  • All children should be supervised even when
    • There is a lifeguard on duty
    • Wearing a floatation device
    • Know how to swim

Learn Life-Saving Skills

A Life Jacket or Flotation Device in AND Around Water

To find local pool schedules and splash pads for the Indianapolis area, please visit parks.indy.gov.

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https://www.rileychildrens.org/connections/mighty-masons-legacy-lives-on-in-research Mighty Mason’s legacy lives on in research 2021-06-23T12:06:00-04:00 2021-06-29T09:13:03-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

It’s been a year since Kevin and Heather Garvey have seen their son’s sweet face, heard his laugh, and felt the warmth of his hug.

A year of sadness but also traces of hope as they embark on a mission to save other kids and families from the pain they went through.

Mason Garvey passed away June 25, 2020, two years after he was diagnosed with stage 4 embryonal rhabdomyosarcoma, an aggressive cancer that attacked his pelvis and lungs.

Mason runs out on the field with Moore II at a Colts game

The 9-year-old boy nicknamed Mighty Mason left behind a huge fan club, most importantly his family, but also friends who became like family over the course of his illness. People like Indianapolis Colts cornerback Kenny Moore and Colts mascot in human form, Trey Mock.

Those friends brought such joy to Mason’s life during his illness, an illness he regarded as an inconvenience, for the most part, something that interfered with his zest for playing sports.

During his cancer fight, Mason had all of the therapies, the trials, the treatments that his young body could withstand. How could his parents not do everything in their power to save him?

When the tumors kept growing, his oncologist at Riley Hospital for Children, Dr. Jacquelyn Carter, gently told the Garveys that it was OK if they decided he’d had enough, according to Heather.

Yet how could they quit?

“She said I will do whatever you guys want to do,” Heather said. “But as a parent, you don’t say that’s OK, let’s stop. It wasn’t an option.”

Mason decked out in Colts gear smiles for the camera

The family, which also includes Mason’s younger sister, Kinley, even moved to Seattle for six weeks so Mason could participate in a trial treatment at Seattle Children’s. When it failed and the family returned home to Bargersville, Indiana, Mason declined rapidly.

“It happened so quickly,” Heather said. “We could physically see his tumor growing. He couldn’t sit or walk. It was at that point that we knew, enough is enough. He wasn’t strong enough to withstand anymore. We had to say we’re done.”

Their little boy, who loved to read, play video games and tell knock-knock jokes, who got to run out onto the Colts field on his birthday, and who grew to love Moore as his brother, died at home one year ago tomorrow.

“Mason was the bravest, strongest, toughest kid we ever met,” his dad said after his son’s death. “We told him countless times that we had no idea how he had gotten so tough, but we were so glad he did. He encouraged us to keep fighting and showed us that God only gives the toughest battles to his strongest soldiers.”

Mason decked out in Colts gear smiles for the camera

The past year has been filled with painful firsts without Mason – birthdays, Thanksgiving, Christmas, Mother’s Day and Father’s Day. The Garveys both have continued working full time, a much-needed distraction, Heather said.

Far from feeling strong, she said, “We have felt like we could break at any moment. Having to be present for our daughter, Kinley, has made a huge difference in how we have chosen to go about our lives over the past year.”

There is a part of them that feels relief that Mason is no longer in pain. Instead, they carry it for him.

“We have an amazing support system,” Heather said. “We are so thankful to all of them for helping us along this journey and new way of life.”

So the Garveys are pressing on, fighting for other kids the same way they fought for Mason. They are raising money for two different initiatives – research on Mason’s tumor by the Herman B Wells Center for Pediatric Research at IU School of Medicine (for which they’ve already raised $20,000) and the Mighty Mason Fund for Palliative Care.

The Garveys had agreed to donate their son’s tumor for research earlier, but they had no idea it was part of the Wells Center project until conversations were already underway to donate the $20,000 they had raised.

“They got his tumor; it is growing in the lab,” said Heather, who was overwhelmed at the news. “It helped to start funding the research that Mason is directly a part of and that’s powerful. We are super proud, and we know Mason would be proud to know he is helping other kids.”

Mason holds a Colts football

Funding for pediatric cancer research is woefully inadequate, Kevin said. From 2008-2017, the National Cancer Institute spent an average of 3.97% of its research funding on childhood cancer research.

“We have to educate folks,” he said. “We feel such a responsibility to get the conversation started. Everyone cares, everyone loves children, everyone wants to do right by kids. We’ve seen it and felt it, but we have to do better. The number of kids experiencing cancer and other terminal illnesses is not declining.”

As mentioned earlier, it’s not just research they are championing, but also more support for Riley’s palliative care program in coordination with the Riley Children’s Foundation.

To learn more about each initiative:

https://give.rileykids.org/campaign/mighty-mason-fund-palliative-care/c329973

https://give.rileykids.org/campaign/mighty-mason-fund-rms-research/c333852

Photos submitted and by the Indianapolis Colts

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https://www.rileychildrens.org/connections/cherish-the-small-moments-cancer-survivor-tells-graduates Cherish the small moments, cancer survivor tells graduates 2021-06-21T13:53:00-04:00 2021-06-29T09:42:52-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Life is filled with small moments that can be beautiful blessings if we only take the time to notice.

That was the message of former Riley kid Seth Knoll, who served as guest speaker for the 11th annual Hematology/Oncology Graduation at Riley Hospital for Children on Friday night.

This year’s ceremony, like last year’s, was virtual due to the COVID-19 pandemic. In fact, Knoll joined the online event from Philadelphia, where he is vacationing with his family.

Knoll, now a 21-year-old nursing student at Marian University in Indianapolis, likes to take stock of all those small moments he experienced as a patient at Riley and since his own “graduation” from cancer treatments.

In a speech given to mark the graduation of three high school seniors who are undergoing treatment for cancer at Riley, the Noblesville resident encouraged the students to embrace all that life has to offer, even the hard stuff.

Knoll is a Riley Children's Health hospital bed

“For many of us who have faced something so life-threatening like cancer, we understand each moment given to us is an opportunity to appreciate and experience the world,” Knoll said.

He was 16 when he was diagnosed with acute myeloid leukemia and underwent five months of chemo before going into remission. But his respite was short-lived. Eight months later, the cancer had returned. Luckily for Knoll, he was able to receive a stem cell transplant from his brother and has been cancer-free since then.

He paid tribute to many people in his speech, most notably the late Riley oncologist Dr. Grzegorz Nalepa, whose compassion, intelligence and understanding gave Knoll and his family peace during a dark time.

Knoll with Dr. Grzegorz Nalepa

Knoll also gave a shout-out to music therapist Caitlin Krater, not so much for the beautiful music she makes but for the joy she brought him during his hospitalization.

“I didn’t necessarily want music therapy,” he said, “but she had this authentic joy that I felt like I could really benefit from. So, week after week, she began to teach me the ‘Game of Thrones’ theme song. Every time I would leave the therapy sessions with her, I felt more joy, I felt incredibly comforted. I look back with such appreciation for those moments.”

And then there was that time he participated in the Olympics … Knoll laughed as he recalled how some of his nurses arranged a wheelchair race in the hall as a nod to the Olympic Games that were underway at the time.

“The nurses on the hematology/oncology unit are just the best,” he said. “They’re so fun … like everyone else at Riley they created small moments for me to cherish. I have so many beautiful memories there.”

His advice to graduates Chloe Dale, Derrick McDivitt and Jeannelle Rooney was borrowed from one of the doctors he met early in his cancer journey: “Continue to live, not merely exist. Give thanks for the small things, and go make someone happier today for your thoughtfulness.”

Knoll smiles as he poses outside

Meredith McMahan, practice administrator for pediatric hematology/oncology at Riley, served as master of ceremonies for the event, which was also attended by Knoll’s Riley teacher, Peggy Green.

“I know many of you didn’t have pandemic on your list of senior year activities, but I think you all are used to the unexpected at this point,” she said. “You never expected to get cancer or to be a cancer survivor.”

While their path through high school may have looked different from their friends’, graduation is a significant milestone in anyone’s life, McMahan said.

“We are so grateful to be here to celebrate with you and so proud of all of you.”

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https://www.rileychildrens.org/connections/her-eye-s-were-open-but-shes-just-not-there “Her eyes were open, but she’s just not there” 2021-06-17T11:50:00-04:00 2021-06-29T09:09:59-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Matt Uber can’t help but get emotional when he thinks back to the evening of April 25. It was the night he almost lost his baby girl.

Vera Posy Uber had been the picture of health since she was born four years ago, the youngest of Matt and Erin Uber’s four children. But life can change on a dime, and that Sunday back in April was a turning point for the family.

Vera Posy Uber watering a garden

Matt and Vera had just finished dinner while Erin was down in Bloomington helping their older daughter move some of her things back home before the end of school. The couple’s kitchen was in the middle of a remodel, so father and daughter were enjoying a fast-food meal.

“We put together her little kids’ meal toy, and she started chasing me with the two-headed dragon she built,” Matt recalled. “Ninety seconds later, we’re running around the island and the laughter stopped. I heard a thud.”

He turned around and saw her up against the cabinet. She hadn’t said a word, but he was sure she was about to burst into tears. When he went to her, however, he knew immediately something was wrong.

“Her eyes were open, but she’s just not there. I scooped her up, and she’s limp,” he explained, pausing to collect himself.

“I REALIZE SHE’S NOT BREATHING”

He yelled for his older daughter, who was upstairs, to call 911 while he laid Vera back on the kitchen floor, worried that she might have suffered a spinal injury.

“It was immediately obvious that even if she had hit her head like I thought, it was not normal,” he said. “I realize she’s not breathing. I panicked.”

Only seconds had elapsed, but Matt knew two things in that moment. His daughter needed CPR, and he didn’t have formal CPR training.

He did what any parent would do in that situation, however. He tried. As his older daughter called 911, he struggled to do compressions and breathe life into his little girl.

And an episode of “The Office” helped.

“I was freaking out a little, honestly. Before I had the assistance of the 911 operator getting me on the right cadence, I had a flashback to ‘The Office,’ where Michael is doing CPR to the tune of ‘Stayin’ Alive.’ I don’t know how I barely knew enough to be adequate.”

Michael and Vera embrace

Thankfully, the 911 operator walked him through the resuscitation steps and stayed on the phone until emergency medical technicians arrived at their Carmel home a few minutes later.

As Matt stepped aside to let the first responders treat Vera, he was in shock.

“I’m standing back, I’m looking at my daughter’s lifeless body and praying.”

Her life and his own as her father flashed before him, he said.

“I know life will never be the same at that point, but it could have gone a lot worse.”

RUSHED TO RILEY

The EMTs had to use a defibrillator twice to shock Vera’s heart back into normal rhythm. At that point, she was rushed to Riley Hospital for Children at IU Health, where a team of specialists was waiting for her.

Erin, driving from Bloomington, arrived at Riley not too long after the ambulance. Ironically, 12 days earlier, she had completed her CPR and AED certification to renew her teaching license. Matt, who rode in the ambulance with Vera, hadn’t told his wife much on the phone, just that she should meet them at Riley.

He remembers how awed he was by the sight of the Riley team lined up, waiting for Vera that night.

“When I think about walking into that emergency room, they had all the right people,” he said. “It was just lined with specialists waiting to take care of our girl, and they did it systematically. It was really impressive.”

Vera and Erin smile at each other

Impressive, yes, but also somewhat shocking, especially for Erin, who hadn’t known just how sick her daughter was.

So while they were comforted by the thought that Vera was in the best hands, they also realized that her condition must be serious.

“When there are that many people waiting for you at Riley, you’ve got problems,” Matt said.

LIFE-THREATENING ARRHYTHMIA

In this case, the problem was an abnormality in the structure of Vera’s heart muscle. That’s what they knew then, but each day they learned more, thanks to the rigorous efforts of the pediatric heart team at Riley, including cardiologist Dr. Mark Ayers and Dr. Larry Markham, division chief of pediatric cardiology.

Dr. Ayers has walked with the Uber family throughout their journey. He explains Vera’s illness here:

“Vera has something called calmodulinopathy. It is a very rare and life-threatening arrhythmia syndrome caused by a genetic mutation in calmodulin proteins. Calmodulin is a protein responsible for maintaining appropriate calcium levels in our cells, and when it doesn’t function appropriately, the abnormal calcium regulation can result in fatal ventricular arrhythmias.”

The disorder can mimic a couple of other life-threatening arrhythmia syndromes, he said. Vera’s is similar to Long QT Syndrome, a heart rhythm condition that can cause fast, chaotic heartbeats. Some people with the condition have seizures. In some severe cases, LQTS can cause sudden death.

“Though there is obviously not a ton of data on these calmodulinopathies, they tend to be more aggressive than Long QT Syndrome and present at younger ages, like Vera,” Dr. Ayers said. “That is why we elected to implant a defibrillator in Vera in order to protect her if she has additional cardiac arrests. The ICD will recognize that she is in a life-threatening arrhythmia and will shock her heart back to normal rhythm.”

The defibrillator itself was a big question mark initially, Erin said. Every day, Riley doctors dug deeper into Vera’s case and consulted with specialists at other large hospitals, including the Mayo Clinic.

“If we could determine she had one specific kind of Long QT Syndrome, medication might have been the end of treatment,” Erin said. “Anything outside of that would require placing an ICD (implantable cardioverter-defibrillator).”

SURGERY CAN BE RISKY

Surgery to place the device in such a young patient carries risks, but Dr. Mark Rodefeld, a cardiothoracic surgeon at Riley, was able to place it in her abdomen, rather than her chest.

“Her young age and small size made it technically challenging to implant the ICD,” Dr. Ayers said. “Dr. Rodefeld has experience with a minimally invasive approach to implanting the ICD in such a small child and was able to do that for Vera. We also have her on relatively high doses of beta blocker to help prevent the arrhythmias in the first place.”

Vera, who spent a week at Riley after suffering cardiac arrest, then another few days for the surgery to implant the ICD, is mostly back to her 4-year-old self. She loves to play with baby dolls and with her sisters, and she loves puppies, water and sand, her dad said.

Sometimes she’ll say to her mom, “I sure wish I didn’t have this power pack in my tummy,” to which Erin replies, “Yeah, me too, Vera, but we’re lucky to have it.”

With help from Riley Heart Center child life specialist Courtney Lyon, Vera’s parents have been able to talk to their daughter in simple terms to help her understand what is going on.

“Courtney was fantastic,” Erin said. “Vera has no memory of what happened, but how do we assist her in understanding she is a living miracle? We talked through how sometimes you can see boo boos and sometimes you can’t … and how her heart needed a little extra help. … And now she has a little power pack in her tummy so if her heart needs a little extra oomph in the future, it’s there in case we need it.”

Genetic testing hasn’t found the variant that Vera suffers from in any of her family members, and Dr. Ayers estimates there are fewer than 100 documented cases around the world. Vera will continue to see Dr. Ayers and the heart team at Riley routinely as she grows.

“This is obviously a life-altering diagnosis for Vera,” Dr. Ayers said. “We will work through it together with our multidisciplinary team of arrhythmia specialists, surgeons and genetic counselors, Ben Helm in particular.”

ADVOCATES FOR CPR TRAINING

In the meantime, the Ubers are on a mission to spread the word that CPR training saves lives. On the day Vera came home after surgery, a member of the Carmel Fire Department provided the training to Matt so that he will never again feel helpless in an emergency.

“It’s a skill you probably never ever will have to use, but it’s not so complicated that you shouldn’t be able to do it,” Matt said.

When Vera was stable in the hospital and he had time to be alone with his thoughts, Matt said he felt tremendous guilt until she was fully recovered.

“If there’s even one second that I should have done something better, then that had a price. If she was sitting here today, wonderful and alive but had some neurological damage, I’d carry that with me my whole life, all because I never stopped to take a CPR course.”

Only about 10% of people who suffer cardiac arrest outside of hospitals survive, according to Dr. Ayers.

“It is amazing that Vera’s dad was able to keep his composure and perform adequate CPR to keep her alive, especially since he didn't know CPR at the time. The 911 rep was able to guide him through it until EMS arrived with an AED to shock her back to normal rhythm and ultimately save her life.”

Michael, Erin, and Vera swing on a swing set

Matt and Erin feel beyond blessed to have their little girl back with them and credit the team at Riley for their diligence in getting to the root of Vera’s condition and for the compassion and kindness they’ve been shown.

“We are grateful for their care,” Erin said. “We know that Vera Posy has embroidered her name on several physicians’ hearts at Riley, honest to God.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/at-61-hes-the-new-nurse-on-the-block At 61, he’s the new nurse on the block 2021-06-17T08:16:00-04:00 2021-06-17T08:24:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

After 31 years at Eli Lilly and Co., Jeff Bick could have settled comfortably into retirement. The company had offered a generous early retirement package four years ago, but Bick was conflicted.

“It kind of caught me off guard,” he said. “I wasn’t ready to retire. I liked what I was doing, but they were making an offer that doesn’t come around every day.”

So the question was, what to do next?

For Bick, it was an opportunity to reinvent himself. That meant going back to school in his late 50s to follow a path into medicine, something he briefly considered as a young man.

“This is an opportunity to do something different,” he said while on a break from orientation as a new nurse at Riley Hospital for Children. “And it’s been radically different for me. I spent a lifetime in manufacturing.”

He points out, however, that because Lilly is a pharmaceutical company, he considered his job as a package engineer a form of patient care in an abstract way.

“You’re not making widgets, you’re making medicines.”

Nursing, though, is all about patient care.

In January 2018, he began taking prerequisites for an accelerated nursing degree program at Marian University. He graduated in August 2020, smack in the middle of the COVID-19 pandemic.

COVID increased the burden of care for nurses and also complicated the teaching environment, he said, robbing many nurses-in-training of some hands-on clinical experience. But Bick was determined to make the most of his second career.

“This gives me an opportunity to get up close and personal and give back to people, to be able to take care of folks,” he said. “And to continue to grow and develop as a person.”

That’s something he and his wife, Jennie, have in common. An executive secretary for years, she went back to school two decades ago to get her teaching license. She recently retired after a 20-year teaching career in IPS and now tutors in the Avon area.

“I guess we’re kind of late bloomers,” he said, “but we consider ourselves lifelong learners.”

Now 61, Bick is about four months into his training as an operating room nurse at Riley.

“I really love it,” he said. “I love the organization and the folks I’m working with. I just really couldn’t ask for a better opportunity.”

While he acknowledges that many of his nursing colleagues are younger than his adult son (a member of the U.S. Army), it’s no different than when he was in school.

“Some of the students were launching a second career like I was, but a lot of them were in their late 20s and 30s. Not too many were in my demographic.”

Regardless, he said, he found it invigorating.

“I’d go in and say to myself, I’m not going to be the old fart in the class today. I’m going to go in and listen and learn and relate to folks and be myself. Nursing involves a lot of teamwork and collaboration, so I think you need a basis in relationships. School gave me my first good practice at what my work environment was going to be.”

Bick said he’s been very well accepted by his colleagues in the operating room, who include nurses of varying years of experience.

“I’m working to find my groove and my niche, and I feel like there’s something to learn from everyone – the newer ones and the older ones. And if I have something to pass along, that’s fine.”

While most of his family has been supportive of his career change, Bick says some of his friends scratch their heads at his pivot later in life.

“I have a couple good buddies who are eligible to retire in a couple years, and they have no intention of continuing to work.”

But he can’t imagine a life without work and all of its challenges.

“I just don’t feel like retirement in the traditional sense is in the cards for me. It doesn’t really interest me. I prefer to be able to work and contribute hopefully at a high level in this career for as long as I can,” he said, “as long as my legs hold out.”

He always planned to work into his 70s; he just didn’t know that doing so would involve going back to school and changing careers.

“I always thought something like this was in the rearview mirror for me.”

Turns out, that early retirement offer from his previous job was a blessing because it led to new opportunities that he has embraced.

“It’s been hard, but sometimes you have to embrace hard. Why else are we here?”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/after-tractor-accident-childs-pain-became-her-constant-companion After tractor accident, child’s pain became her constant companion 2021-06-15T09:45:00-04:00 2021-06-29T08:43:56-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Jenna Rose Weisenbach was just 11 years old when the wheel of a tractor altered the course of her life.

Not that anyone knew that in the moment. It was January 2013 when she raced toward the tractor her dad was driving and misjudged the distance as it rolled over her right foot.

A trip to the hospital revealed no broken bones, surprisingly, but the accident triggered a much more debilitating condition that she lives with eight years later – near constant pain.

Jenna and Pam sit with a Riley Children's Health Physician

Complex Regional Pain Syndrome is a form of chronic pain that most often affects an arm or a leg. CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury.

For Jenna and her parents, Jason and Pam, who live near Greensburg, Indiana, it took a while to receive that diagnosis and even longer to find a treatment that could help.

For the first few months after the accident, it was just a nagging pain that the pre-teen treated with ibuprofen. Then one day during archery in gym class, she shot an arrow that actually hit the target, and she jumped for joy. When she hit the ground, she collapsed in pain. Things went downhill from there.

A podiatrist did more X-rays and told her parents nothing was broken in her foot, but after more tests and consultation, he put a name to her pain and said she needed more intervention than he could provide. He offered to refer her to Cincinnati Children’s Hospital or Riley Hospital for Children at IU Health in Indianapolis.

They chose Riley because they had a family history here and trusted the care. The Pediatric Pain Management Program at Riley is Indiana’s only comprehensive pediatric pain program, where multiple specialists and professionals work together to provide interdisciplinary care.

“I DIDN’T KNOW ANYONE ELSE LIKE ME”

By the time of her first appointment in the Riley Pain Clinic in September 2013, Jenna had stopped walking on her own.

“I went from limping to using a rolling walker,” she said. “I went through an identity crisis where ‘it’ was all I was. I wasn’t a person, I was a disease. I grew out of that, but that took a lot of time and a lot of therapy. It wasn’t, ‘how’s Jenna? It was, how’s Jenna’s foot?’ That was hard.”

She withdrew from friends and family, shutting herself in her bedroom and turning to social media to find people who also had CRPS. It became her lifeline. She started documenting her journey in 2013 on Instagram. She was home-bound for sixth grade, doing her schoolwork remotely, and returned to school half-days for seventh grade.

“I didn’t know anyone else like me, and I was at home and alone in my bedroom,” she said, a tough place to be emotionally, especially as a 12-year-old just figuring out who you are and your place in the world.

She wasn’t really alone, of course. Her parents were there, along with her three siblings. But she felt alone. The only family member who could truly comfort her was her dog, Sasha, who has been by her side since kindergarten.

Jenna and Sasha pose outside

“Her pain was so debilitating she couldn’t focus,” Pam Weisenbach said. “Friends came over when she could tolerate it for short periods of time, but the pain was so bad we couldn’t touch her. She was hypersensitive to touch all over her body, not just her right foot.”

Sensing Jenna’s distress, Sasha would lie down near her human so the young girl could pet her. It was the only contact that didn’t hurt.

Going into her first appointment at Riley, Jenna was desperate to have her pain understood and validated.

“How many times can a 12-year-old go to a doctor and be told there’s nothing wrong?”

She had that experience with other doctors at other places, but not this time. From her early days at Riley, pain specialists worked to come up with a treatment plan that would give her relief, but it took time. Pain medications didn’t help, and she didn’t tolerate them well anyway.

She was in a zombie-like state, her mother recalls.

LONG ROAD AT RILEY

That seems like a long time ago when you look at Jenna today, now 19 and preparing to continue her studies at the Savannah College of Art and Design campus in Atlanta, Georgia.

Jenna smiling in front of the "SCAD" sign

She was at Riley earlier this month for her last appointment with anesthesiologist and pain specialist Dr. James Tolley.

It’s unclear why some people suffer from CRPS, Dr. Tolley said. In pediatric patients, it can happen from a simple injury – twisting an ankle or breaking a wrist.

“But 10 percent of kids (with the condition) will have it happen just out of the blue with no injury,” he said. “It can spread from extremity to extremity and can start to involve the whole body.”

Dr. Tolley saw 26 individual patients over the last year with CRPS, he said, representing about 9% of the patients he sees. Others may have pain from fibromyalgia, sickle cell and other ailments.

After nearly eight years as a patient, Jenna has “aged out” of Riley’s pain management program.

She vowed to walk into that last appointment on her own, and that’s exactly what she did. Not totally pain-free but close enough. On her feet were real shoes – black Vans – that she bought a week earlier after not wearing shoes for years.

Vans

She wore slippers mostly, sometimes moccasins, anything that didn’t feel heavy on her foot. In fact, it became routine for her to shop for a new pair of slippers in one of the Riley gift shops after every appointment over the years. Today, instead of slippers, she picked up a Riley T-shirt to add to her college wardrobe.

SPINAL CORD STIMULATOR

Over her years of treatment at Riley, Jenna has seen massive improvement in her pain level, but it has meant trying multiple forms of treatment, including nerve blocks (epidurals), followed by intense physical therapy.

“Some patients respond very well to the initial epidural and in-patient physical therapy,” Dr. Tolley said. “Not everybody does.”

Jenna did well with the pain for a while after her first epidural in 2014, her mom said. It got her walking again before the pain returned with a vengeance. She had a second epidural with PT two years ago when she was a junior in high school.

Her goal then was to be able to walk in high heels and dance at prom, which she attended with her younger sister and best friend, Emma.

Before Jenna ever came to Riley, one of the many doctors she had seen told her she wouldn’t get to dance at prom or walk at her high school graduation. She did both.

Jenna wearing her cap and gown for graduation

The biggest change came a year ago when Dr. Tolley introduced her to Riley neurosurgeon Dr. Jeffrey Raskin, who agreed that she was a good candidate for a spinal cord stimulator.

In February 2020 (“right before the world shut down,” Pam Weisenbach said), Dr. Raskin implanted the device in Jenna’s back.

“Having Dr. Tolley and Dr. Raskin working together to get her the stimulator has been fantastic,” Pam Weisenbach said. More than a year later, she is still doing well.

Pain in children is “profoundly undertreated,” Dr. Raskin explained, and chronic opiate use starting in childhood obviously has negative health effects.

“We are actively studying this here at Riley,” he said. “Some patients have conditions that might respond to neurosurgical procedures, including CRPS like Jenna has.”

The device, which can be adjusted with a remote control, has worked well for Jenna, sending low levels of electricity directly into the spinal cord to relieve pain.

“These are generally well-tolerated with low complication rates,” said Dr. Raskin, who teamed up with Dr. Tolley and other physicians to author a case study based on another patient last year.

“We are trying to increase our surgical pain management to include peripheral nerve stimulators, pain pumps and radio-frequency ablative therapies,” he added.

ANXIETY MIXED WITH EXCITEMENT

Jenna is thrilled to be walking out of her last appointment with Dr. Tolley on her own two feet, but she acknowledges feeling anxious about the future.

“I live in constant fear that if I get hurt again it will spread,” she said.

Dr. Tolley said any type of physical or emotional stress puts her at increased risk for a flare-up, but he gently advises, “I wouldn’t stress over it,” eliciting a chuckle from Jenna and her mom. Vitamin C has been found to help ward off flare-ups, he added.

Because of COVID, Jenna started her college career from home, but she is excited to officially be on campus in Atlanta this fall for her second year. She believes the change of scenery – and the warmer weather – will do her good.

“It’s kind of like I can start over,” she said. “People there won’t know all the messy stuff.”

She remembers the child she was and how much time she spent “trapped” in her bedroom with a pain that no one could understand. Now, she has her life back and she wants to make the most of it.

“I feel I owe it to the little girl who for so long was just looking at those four walls.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-a-new-way-to-care-for-moms-and-babies PODCAST - Maternity Matters: A new way to care for moms and babies 2021-06-14T07:42:00-04:00 2021-07-12T09:12:29-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/a-mothers-prayer-you-rest-baby-and-you-be-with-god-now A mother’s prayer: “You rest, baby, and you be with God now” 2021-06-07T12:47:00-04:00 2021-06-29T09:20:41-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

From the moment he was born, Isaiah Mays had a special heart. The mechanics of it weren’t quite right, but oh the love that poured from that heart was something to behold.

And the love he gave to others came back to him ten-fold. His mama, his brother and sister, and his Riley family can attest to that.

Isaiah poses for a selfie

It was a powerful thing – the love people had for him. That’s why the tears flowed freely among team members and family alike when he passed Jan. 26 at Riley Hospital for Children.

Doctors and nurses crowded into his room, desperate to save him, as his mother, Machelle, ran down the hall toward him. She had just arrived back at Riley from her home in Evansville and was parking her car when she got the call that Isaiah had taken a bad turn.

“I had packed up everything to come stay with him until he could go home,” she said. “He asked me to bring him a box of Froot Loops and white cheddar popcorn.”

She was frantic as she raced through the hospital.

“I’m yelling down the hall, ‘Isaiah Luke, your mama’s here and I brought your Froot Loops.’ ”

It was not the reunion either of them had planned. Isaiah, who had fought so hard and for so long, had slipped away.

“I grab my baby’s hand and tell him, ‘Mama is here. I love you, Isaiah Luke, and I am so proud of you. You rest, baby, and you be with God now.’ ”

BORN WITH HEART DEFECT

Isaiah Luke Mays wasn’t a child. He was 19 years old, a man in some people’s eyes. But he was Machelle Mays’ baby, always and forever.

Born with hypoplastic left heart syndrome, a life-threatening defect, he had his first open-heart surgery when he was 3 weeks old. He coded twice, his mom said, and she did what she always did. She prayed.

“Father, if you decide that Isaiah is meant to go back with you, all I ask is that you give me the strength to endure my life without him. Thank you for giving him to me for these three weeks.”

Isaiah made it through that surgery and had another heart operation at 6 months old, suffering a stroke two weeks later that permanently weakened his left side. Another surgery followed at age 5.

“We just rolled with the punches,” Mays said. “He did occupational therapy and physical therapy growing up. Every challenge he had in life he met it. He was always a fighter, never a quitter. I brought him up that way.”

He badgered his middle school basketball coach to let him do more than get water for the team. He wanted to play. Finally, the coach agreed, putting Isaiah in the game with one or two minutes left to play. Isaiah had a limp, but he could shoot that ball. And just like you see in the movies, Isaiah made that shot, and the crowd roared.

“Don’t judge me by what you see,” he would tell anyone who would listen. “I assure you I can do more.”

DETERMINED TO GET DIPLOMA

Isaiah arrived at Riley on Dec. 15, 2020, via LifeLine from Deaconess Hospital in Evansville. The high school senior had contracted COVID-19 and was intubated. Because of his underlying heart condition, the virus posed an even greater threat. He spent weeks in the Riley CVICU, though not always on a ventilator, and was transferred to the step-down unit on 3 West when his condition improved.

When he was able to speak but still in intensive care, he told Riley schoolteacher Lindsay DeWilde that he had two credits he needed to earn to complete requirements for his high school diploma, and he wanted her help to reach that goal.

The two worked together daily for a month. Isaiah was determined.

“Even on days when I could tell he felt horrible, he wanted to do school. I would say, ‘Why don’t I come back tomorrow so you can get some rest?’ And he would say, ‘Lindsay, sit down, we’re doing school.’ ”

Isaiah's High School Diploma

He never complained, DeWilde said. He was more interested in other people than in himself.

“Any time I would walk in the room, he would ask how I was doing and how my day was going. For a kid in the hospital, thinking of other people is not typical because they’re focused on getting better. He always thought about other people.”

“I’M SO PROUD OF HIM”

Isaiah didn’t live to see the day when he earned his high school diploma, but his mom was overjoyed to receive the official document from his southern Indiana school district last month. Her niece even surprised her with a portrait of mom and son, adapted from a photo, with a graduation cap and gown superimposed on Isaiah. She treasures both the diploma and the portrait.

Mays and Isaiah painting

“The feeling of receiving his diploma is indescribable,” Mays said. “It means everything. I’m so proud of him. He achieved what he set out to do, through all the obstacles he faced in life. He took every challenge as an opportunity to do more, give more.”

CVICU nurse Teejay Ramsey remembers the first time she took care of Isaiah when he was awake enough to talk. Together, they called his mom, who at the time wasn’t allowed to visit because of COVID restrictions. At one point in that call, Ramsey was so touched by Mays’ kind nature, she joked, “Will you be my mama, too?”

The older woman didn’t miss a beat. “Of course, baby,” Ramsey recalls her saying. “We don’t have much, but what we have we’ll share.”

Ramsey worked at the hospital Christmas and New Year’s Eve and spent time with Isaiah as he FaceTimed with his family back home. She was once again struck by the love expressed in those conversations.

“We joked that because we spent two holidays together it meant we were family.”

And her family became his family in a way. She talked about her two daughters so often that Isaiah began calling them his little sisters.

“Every time I’d see him, he’d ask for pictures of them, want to know what crazy stuff they were up to,” Ramsey said.

The last time she saw Isaiah was before she went on vacation. That’s when he insisted she put his mom’s cell number in her phone. She resisted at first. After all, his mom was planning to come up to the hospital soon to stay with Isaiah until he was discharged. He seemed to be improving.

“It was like the last thing he wanted to do,” Ramsey said. “He wanted to make sure we kept in contact.”

MAKE ROOM IN YOUR HEART

Isaiah took a turn for the worse while Ramsey was traveling. When Mays called, the nurse thought she was calling to set up a FaceTime with Isaiah. But there would be no more FaceTimes. She called to tell Ramsey that Isaiah had passed.

“His mom lost her baby boy and one of the first things she did was to call me,” Ramsey said.

Since then, the two have kept in touch, just as Isaiah would have wanted. Ramsey and her family have stopped at some diners featured on “Diners, Drive-Ins and Dives” and sent pictures to Mays because that was one of Isaiah’s favorite shows.

Caregivers wear "Isiah Forged In His Strength" shirts

The day her son died, Mays had brought shirts with her that her son wanted to give to some of his caregivers on the heart unit, including DeWilde, Ramsey, physical therapist Jake Copeland and nurse Nate May. He wanted them to wear the shirts on the day he went home.

“He just loved them all,” Mays said. “And they spoiled him rotten.”

The shirts were printed with the Scripture Isaiah 54:17, along with the words Forged In His Strength.

Ramsey and her girls wore those shirts to his funeral.

“I’m trying to honor his memory,” she said. “I saw him at his sickest, and to know I was able to give him a little bit of comfort is why I’m a nurse.”

A HEART OF GOLD

The loss of any patient is hard, but saying goodbye to Isaiah was particularly difficult because of the impact he made on the unit.

“Isaiah taught me that even when there is something difficult going on in your life, you can continue to keep moving forward and trying your best,” said DeWilde, who worked with Isaiah even on his last day.

“Even when he was so weak, he still gave 120 percent,” she added. “As a mom, if I can raise my children to grow up to be just like him, I’ve done something right. He was such a bright light to everyone.”

She credits Isaiah’s mom for raising such a kind, determined, faithful son and was thrilled when Mays sent her a copy of Isaiah’s diploma to hang in her office.

“We text a lot. She’ll say, ‘I’m thinking about you, sugar.’ She is just the sweetest person.”

Now, Mays, a single mom who recorded Scripture for her infant son when he was in the NICU 19 years ago, thanks God for the time she had with him.

“You chose me to be the mother of Isaiah, and I loved every moment of it,” Mays prayed. “I praise you, even in this, even if I see my baby is not going to be with me here. The prayer that I prayed when he was just 3 weeks old is the prayer that I’m going back to. He is with you now so give me the strength to endure my life without him.”

Despite the sadness, Ramsey feels fortunate to have met and forged a bond with Isaiah and his family.

“Sometimes you make little spots in your heart for people to live the rest of your life and that’s what Isaiah did for me. He had a heart of gold.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/she-has-a-heart-baby-at-home-and-the-riley-team-in-her-back-pocket She has a heart baby at home and the Riley team “in her back pocket” 2021-06-03T07:53:00-04:00 2021-10-19T16:28:47-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Adriel Hernandez had a rocky start to life.

Before he entered the world, doctors told his parents, Josue and Glenda Hernandez, that their unborn child had a serious heart defect that could require multiple surgeries to fully repair.

Glenda tried not to let that news weigh her down as she continued with her pregnancy. She knew she had to be strong for her two older children, and she wanted their holidays to be extra special because once Adriel was born, he would need to be hospitalized for several weeks.

Adriel in Riley Hospital for Children at IU Health

Adriel was born at IU Health Methodist Hospital on Jan. 4 and was quickly transferred to Riley Hospital for Children at IU Health, while his mom stayed behind at Methodist recovering. (When the new Mother-Baby Tower at Riley opens later this year, that difficult mother-baby separation between hospitals will no longer be necessary.)

Five months later, Adriel is home and doing well, even if he is on the small side at 12½ pounds.

Turns out the preterm diagnosis of hypoplastic left heart syndrome, where the left side of the heart is critically underdeveloped and can’t pump blood effectively to the body, wasn’t entirely correct.

Riley heart surgeon Dr. Mark Turrentine discovered in surgery when Adriel was a week old that one of the infant’s two ventricles could be repaired to improve blood flow. Babies born with HLHS typically have only one working ventricle.

“When they took him back for surgery, the plan was to do the Norwood procedure,” Glenda said, which involves building a new aorta (the main path from the heart to the body), forcing the right ventricle to pump blood to the body through the new aorta.

“When they opened his chest, they realized the right side of his heart was working a little better than they were expecting.”

The surgical team was able to open up his existing aorta a little wider to get blood flowing better and close an opening between the two major blood vessels leading from the heart.

Adriel went home to Nappanee, Indiana, a month after his birth, but the Hernandez family hasn’t been on its own the past four months. They are part of Riley’s Department of Pediatric Cardiology home-monitoring program, headed by nurse practitioner Dana Hartman.

Adriel playing with his toes

Adriel is one of 17 heart babies currently being monitored in the program, Hartman said. Typically, single-ventricle babies treated at Riley are enrolled in the program, which monitors a child’s oxygen levels, weight and other vital signs via an iPad and connects parents with a nurse – in this case, Hartman – who helps troubleshoot concerns.

While he has two working ventricles, Adriel was considered fragile as doctors were concerned about the squeeze of his heart. The peace of mind his parents feel by having Hartman a phone call away can’t be overstated.

“The home monitor program really has been a lifesaver because I do feel secure,” Glenda said. “I feel like I have the Riley team in my back pocket.”

She acknowledges being nervous at first, but as she has gotten to know her son and his needs better, it has gotten easier.

Hernandez family photo

She describes 5-month-old Adriel as a happy baby who is pretty chill until he gets hungry. Unlike a lot of babies with serious heart ailments, Adriel takes all of his nutrition orally; he doesn’t require a feeding tube.

That’s one of the reasons Hartman keeps close tabs on his calorie intake and weight gain. She wants to make sure his weak heart isn’t compromising his growth. It’s unclear yet if he will require another surgery, but it remains a possibility.

“His growth is a little slower than we like, so we want to make sure he’s out of the woods,” Hartman said. “But he’s getting close to graduating out. He’ll tell us basically when he doesn’t need us anymore.”

Meantime, she speaks with Glenda regularly and makes sure that she and all of her parents in the program know that she is a phone call away. That means the world to Adriel’s mom.

“We absolutely love Dana! She is amazing!”

Adriel was in to see his cardiologist, Dr. John Parent, in April and returns for a follow-up later this month. The physician reported a slight improvement in his Echo, which was a relief to his parents.

“We are still not out of the woods,” Glenda said, “but we are headed in the right direction.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/saving-kids-who-suffer-sudden-cardiac-arrest Saving kids who suffer sudden cardiac arrest 2021-06-02T09:54:00-04:00 2021-06-11T09:30:15-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

As a cardiologist at Riley Hospital for Children, Dr. Adam Kean has a vested interest in the heart health of young Hoosiers.

That’s why he is championing a new program supported by Riley that aims to save the lives of children around the state who experience sudden cardiac arrest.

Project ADAM (no relation to Dr. Kean) is named for a Wisconsin high school basketball player who died after collapsing on the court in 1997. Designed to improve cardiac arrest preparedness in schools and other places where young people gather, it encourages partnerships between healthcare affiliates and schools to establish emergency plans and cardiac response teams.

Project Adam Heart Safe School Designation

Riley Hospital is the first Indiana affiliate of the program, and last week certified its first Heart Safe School in northern Indiana after observing a series of drills with staff and students using automated external defibrillators (AEDs) and CPR.

“It went quite well,” Dr. Kean said of the certification exercise. “The students were responsive to the emergency as presented … and there was a phenomenal amount of excitement and initiative toward developing more and more centers where AEDs are positioned and to try to get as many students and faculty involved as possible.”

Tonya Aerts is leading the charge for heart health at her school. She isn’t a doctor, but she is a teacher, and the deaths of three teenage boys from undiagnosed heart defects – one of them at her school – broke her heart and convinced her that she needed to do more to save young lives.

Aerts teaches biomedical sciences at New Prairie High School in New Carlisle, Indiana, and is an adviser for a co-curricular team for future healthcare professionals. She was on hand May 24, watching proudly as her school community worked together to “save” lives, demonstrating appropriate response times and the proper use of an AED on a mannequin.

She is passionate about educating students and staff about the use of AEDs when necessary to save lives.

“It saddens me beyond belief that there are so many … incidents of sudden cardiac arrest on school campuses and it just keeps happening,” she said.

She can’t shake the feeling that more could have been done to prevent these deaths, and that has motivated her to push hard for this school-wide drill and better training.

Aerts added that she and other staff are trained to protect students in the event of a fire, tornado or an active shooter, but not enough people were trained in the use of the school’s nine AEDs to restore heart rhythm in someone suffering cardiac arrest.

“In all my classes today, I had AED drills,” she said earlier last month. “The kids are wanting it; we slide a mannequin in, and boom, they know what to do. We are trying to change the culture to being rescue-ready.”

Dr. Kean, who has a specific interest in heart rhythm problems, became aware of Project ADAM when he was training at the University of Michigan 12 years ago.

His goal, like Project ADAM’s, is to prevent tragedies like Adam’s death and scores of others. As the largest children’s hospital in the state, Riley’s mission is to save lives, but that extends beyond the hospital’s walls into the wider community.

And that requires education and training, specifically in the proper use of AEDs.

Many schools have AEDs, but not enough people onsite truly know how to use them.

Practice with AEDs

“It’s all well and good to have the equipment, but you have to practice with it,” Dr. Kean said. “That’s where the Heart Safe designation is key. We want everyone around to feel empowered to use one of these things in an emergency. There is phenomenal data to support the fact that … if there is a tragedy, we can come to the rescue, and when I say ‘we,’ I mean we as a community, not just as a hospital.”

For that to happen, he added, there needs to be a level of training and understanding that comes from partnerships. In this case, it would be a partnership between Riley and any school that wants to achieve the designation of Heart Safe School.

While New Prairie High School is the first school Riley is partnering with in the state, it won’t be the last. Another school, likely in the Indianapolis area, is expected to achieve the designation later this year.

“Our goal is not to have every child in the state come to Riley Hospital,” Dr. Kean said. “That’s the exact opposite of our goal. We want to take care of the children who need our expertise in Indianapolis, but we’d much prefer for every child to be well at home, and this is a program that supports that.”

Photos provided by New Prairie High School

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https://www.rileychildrens.org/connections/retiring-neonatologist-has-always-led-with-his-heart Retiring neonatologist has always led with his heart 2021-05-27T08:05:00-04:00 2021-11-10T11:29:02-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

The bright red tie says a lot about the man wearing it. Decorated with images of children, it was a gift to Dr. William Engle from a colleague with the American Academy of Pediatrics. And it’s at least 20 years old.

“I didn’t know if I was supposed to wear a tie,” the unassuming physician said before an interview for this story.

Imagine that – a revered neonatologist with too many accolades to count wondering if he should wear a tie to the office when he is days away from retiring after nearly four decades with Riley Hospital for Children at IU Health.

That’s Bill Engle – brilliant, hard-working, humble, compassionate and kind. These are just some of the adjectives attached to a man who would rather talk about his colleagues, his patients, his family and his faith than himself.

After a career that demanded long hours and included no shortage of heartbreak, Dr. Engle prefers to focus on the joy he experienced while serving others, the connections he made with patients and parents, and the family he found at Riley.

The Purdue University grad thought at first he wanted to study veterinary medicine, but hundreds, perhaps thousands, of Riley families are glad he switched to pediatric medicine, then neonatology.

Dr. Jim Lemons graduation

He was a senior med student in the IU School of Medicine in the late 1970s, training at one point in the Riley NICU alongside the man who would become one of his mentors – Dr. Jim Lemons, who at 76 is semi-retired but still sees babies in the NICU.

“A TRUE SERVANT LEADER”

“Jim Lemons’ compassion with babies and families showed me a model that was really coming from the strength of a Christian background,” said Dr. Engle, who plans to remain active in his church and in his work with Mission Haiti Medical in retirement. “He really modeled that in terms of giving of himself.”

For his part, Dr. Lemons describes his former student as a “superb clinician and a master teacher,” a pioneer in the field of neonatology and someone who is revered in the Riley NICU by families, staff, students and fellows.

“I learned about Bill’s heart and soul in medicine,” Dr. Lemons said during a virtual retirement celebration for Dr. Engle. “You were always there. I don’t ever remember asking you to do something that you even hesitated for a moment. You demonstrated the best for all of us as a true servant leader.”

A graduate of IUSM in 1979, Dr. Engle did his pediatric residency at Riley from 1979-82, becoming chief resident, then completed a neonatology fellowship from 1982-84. He met his wife-to-be, Katrina, in the Riley NICU, where she worked as a nurse.

Dr. Engle and Katrina in the Riley NICU

He likes to tell the story of the day he found himself as a second-year fellow in an elevator in the old Phase II of Riley with Dr. Morris Green, then physician-in-chief. Dr. Green is considered the father of family-centered care, a revolutionary concept when it started at Riley in 1971.

“He asked what I planned to do at the end of fellowship, and I told him I was thinking about asking if I could complete a third year of fellowship to do some research. Then he asked if I wanted a job,” Dr. Engle recalled with a chuckle.

“I would really love that,” was the young doctor’s stunned response.

There might have been more to the interview process than that, but that’s how Dr. Engle remembers the conversation that led to his life’s work at Riley.

“Jim Lemons and Rich Schreiner were the leaders in the neonatology division. I got to start at the end of my fellowship doing some clinical direction. It was a blessing, that’s for sure.”

CO-FOUNDER OF ECMO PROGRAM

He wasn’t the only one who was blessed. Talk to his colleagues, and they’ll tell you Bill Engle has been their north star of sorts – guiding them with his positive demeanor and commitment to the care of babies.

“I first met Bill during his early associate professor years when I was a resident rotating through the Riley NICU,” said Dr. Laura Haneline, professor of pediatrics and division chief of neonatal-perinatal medicine.

As a fellow Boilermaker, she said she admired his diehard allegiance to Purdue amid a sea of IU red. But it was much more than that.

Bill Engle professional photo

“Over the past 37 years, Bill has made numerous contributions to the field of neonatology,” she said during a Zoom retirement party. “It would be impossible for me to summarize his achievements in the next 10 to 15 minutes.”

She tries, though, mentioning several key leadership positions:

Co-founder and medical director, Riley ECMO (extracorporeal membrane oxygenation) program, 1985-2013
Director, Neonatal Transport Program, 1988-1998
Director, Neonatal Outreach Education Program, 1988-1992
Director, Neonatal Nurse Practitioner Program, 1989-1998
Medical Director, Wishard Special Care Nursery, 1991-1994
Medical Director, Riley NICU, 1994-2014
Director of Clinical Affairs, 2007-2018
Co-director for Quality Improvement, Division of Neonatology, 2018-2021
President, Indiana Neonatal Society
President, Indiana Chapter, American Academy of Pediatrics

The list goes on and on. Honors include the Edwin L. Gresham Award, Glenn W. Irwin Jr. Award, Excellence in Service Recognition as editor of NeoReviewsPlus, Mission Haiti Medical Recognition Award, and he’s a seven-time winner of the Red Shoes Award for outstanding accomplishments and contributions to family-centered care at Riley.

“MASTER CLINICIAN”

His leadership in so many areas is a “testament to his unmatched work ethic and drive for clinical excellence through program development,” Dr. Haneline said.

“Bill has had an incredible impact on the field of neonatology as a master clinician, program leader, extraordinary educator, role model and mentor.”

Dr. Engle conversing

Many consider Dr. Engle’s work with longtime pediatric surgeon Dr. Karen West and nurse practitioner Susan Gunn to develop the ECMO program his crowning achievement in a career filled with achievement.

“Over 28 years, Bill and Karen built a state-of-the-art ECMO program with national distinction,” Dr. Haneline said. “They assisted in expanding this lifesaving technology to older pediatric and cardiac patients at Riley. Without their foundational work, the Riley ECMO program would not be what it is today.”

Dr. Engle tries to deflect attention from himself in a conversation about ECMO, calling it “a massive team effort” and paying tribute to past and current ECMO clinical coordinators, including the late Jim Hart and current manager Gail Hocutt.

But Dr. David Boyle, who joined the NICU team in 1989, recalled one evening in particular when he witnessed the dedication of Dr. Engle.

“I worked with you early on when a baby needed to go on ECMO,” Dr. Boyle said to his longtime colleague. “I had no idea what I was doing, and I picked up the phone. In true Bill Engle fashion, you came in and stood next to me while we put that baby on ECMO. To me that meant everything. For 30 years of being my mentor and colleague and friend, thank you.”

Dr. West, professor emeritus of the Division of Pediatric Surgery, met Dr. Engle when both were still in training. They would go on to work many long days and nights together.

“As a NICU fellow and a peds surgery fellow, we spent a lot of time together taking care of children,” she said. “It was a different world then. As fellows, we rarely left the hospital. We learned so much from each other, particularly with the ECMO program.”

What struck her was how concerned he was not just for each baby but for the entire family.

“We have shared some really wonderful patients together, and some still keep in touch,” she said. “It’s what medicine should be about.”

“A KIND AND GENTLE MAN”

Dr. Engle knew that better than most. In his conversations with families, he said he tried to be a listener first and understand what their knowledge base was and where they were emotionally.

“Being a physician, 50 percent of what we do is education. My hope is that I was able to read people correctly and compassionately and provide them with information they could use to help them understand the predicament their baby was in and the possibilities for recovery.”

Again, he credits Dr. Lemons with modeling that behavior, but he also saw some of those same attributes in his core group of colleagues, especially in those early years.

Dr. Schreiner, retired neonatologist and physician-in-chief at Riley, could talk a long time about the man he hired back in the 1980s (after that fateful meeting with Dr. Green in the elevator), but the most important thing to know about Dr. Engle is that he is a “kind and gentle” man,” Dr. Schreiner said.

Dr. Engle bottle feeding a goat

“Everything he did was with humility. He never tried to bring attention to himself. If everyone were like Bill Engle, the world would be perfect,” Dr. Schreiner added, with no apologies.

“He’s accomplished so much, and he does it with grace and is always willing to do more.”

When he was chairman of the department, Dr. Schreiner asked his faculty to forward notes that families had sent to them. He has kept a few of those notes in his voluminous files and pulls out one of many that Dr. Engle received:

“Thank you for saving our son’s life. Thank you for the peace and calm you brought to me in those first days. Your demeanor and presence consistently gave me confidence. You were not just a man of science and medicine but of deep compassion and conviction. God has shown his love for us so much through you.”

Notes came in from medical students, too, describing Dr. Engle as “professional,” “kind,” “respectful,” “knowledgeable,” “gentle,” “a role model.” One even wrote, “I want to be like you when I grow up.”

Because of that legacy, Dr. Schreiner said, he is confident there are more young doctors coming up behind Dr. Engle who will model those traits.

“When you work with people like Bill, you get the best of yourself.”

FAMILY FEELING IS REAL

For the 68-year-old soon-to-be retiree, the family he’s been a part of at Riley is why he stayed all these years.

“I get a little mushy here,” he confessed. “I’ve been blessed throughout my career, after meeting my wife and becoming a Christian and meeting all these folks here, I just felt I had a whole family to collaborate with and get to know. I don’t know if you can clearly explain how heartening that is when you can make an impact,” he said.

“I learned from Jim and Rich how to take care of babies and help them survive and help their families cope, and then to see them later at picnics … it’s overwhelming.”

Dr. Engle leaves just before Riley’s new Mother-Baby Tower opens this fall. He is philosophical about the timing.

“There’s a time for everything and a time for others to shine,” he said. “In planning a new space with the young and mid-level faculty and staff, it’s a great opportunity to see a new program blossom. I have complete trust in my colleagues. I have no doubt it will be phenomenal.”

Collage of Dr. Engle meeting new people

After a career that often infringed on family time, he is looking forward to not having any work obligations. Besides his volunteer activities with his church and his commitment to a hospital he helps support in Haiti, he and his wife plan to travel and continue their quest to see as many of the national parks as they can. They also look forward to spending more time with their three children and grandchildren.

To everyone at Riley, he says thank you, and shares a final piece of advice. Appreciate what you have.

“All those folks, the nursing staff, respiratory care staff, pharmacy staff, dietary staff, music therapy, social workers and all the other support people, make up a community of caring for babies. Please cherish that because those groups of people make the whole much better than one individual.”

Riley wagon honoring Dr. William Engle

In the retiring physician’s honor, a Riley wagon has been put into commission with his name on the back, and a neonatal emeritus lectureship will be started in his name.

That announcement took Dr. Engle by surprise.

“The wagon is such an important gift for families. It’s hard to say how much it means without me starting to cry.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/firefighter-trauma-surgeon-discover-a-common-bond Firefighter, trauma surgeon discover a common bond 2021-05-26T09:59:00-04:00 2021-11-10T11:29:32-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Even behind the face mask, the Indianapolis firefighter knew the man in the white coat looked familiar.

Dr. Matthew Landman, medical director for trauma at Riley Hospital for Children at IU Health, was at the Pike Township fire station to see a little girl who had recovered from a gunshot wound. What he didn’t know was that standing next to him was the father of another former patient.

Dr. Matthew Landman standing next to paramedic and deputy chief of operations, Steve Mitchell

Steve Mitchell, paramedic and deputy chief of operations, approached Dr. Landman and told him the story of his teenage son Jack, now almost 19 and preparing to head to Purdue University in the fall to study physics.

It was two years ago when Mitchell and his wife, Beth, rushed their son to a Southside hospital with what turned out to be a ruptured appendix. Jack, who has a twin named Jake, was later transported to Riley, where Dr. Landman operated on the teen.

Mitchell recalled that Jack had multiple complications requiring extra procedures and a longer hospital stay than normal, but he is as good as new today.

Jack resting on a hospital bed

“He went to semi-state in cross country last fall,” Mitchell told the surgeon, as he showed him pictures on his phone, later quipping, “He’s running much faster because he’s not carrying that heavy appendix.”

“I’ll take some credit for that,” Dr. Landman joked.

WHEN THE DOCTOR WAS THE PATIENT

It so happens the doctor’s own emergency appendectomy as a boy growing up in Iowa led him into the medical field, he said.

“As a kid, you have pretty simplistic thinking,” he said in an earlier interview. “You go into the hospital feeling bad, this person comes in and makes it better, and you leave feeling great. It was pretty profound, and it (a medical career) just made sense as I went through high school and college.”

Now he hopes he might inspire other young people to consider medicine as a career.

“It’s hard to believe that something that long ago ignited that interest in me, and here I am now effecting that sort of care in kids,” the surgeon said.

When Mitchell showed his son a picture of Dr. Landman taken at the fire station earlier this month, Jack immediately recognized him, even with his mask on.

“Jack has had one traumatic experience, but Dr. Landman sees sick kids all the time,” Mitchell said.

As a first responder, Mitchell knows what it’s like to transport patients to the hospital, then wonder what becomes of them. He figures surgeons might not always get to see their patients when they’re back on their feet, so he wanted to at least thank the doctor and tell him how well Jack is doing.

Jack running in a cross country meet

“That’s him running,” he told the doctor, as he scrolled through photos on his phone.

“That’s so cool,” Dr. Landman replied. “I’m really glad you said something.”

As a trauma surgeon, these are gratifying moments – reconnecting with patients and families in better days, after what is often one of the worst times of their lives.

LEARNED FROM THE BEST

Dr. Landman assumed the role of medical director for trauma at Riley last summer. He took over for retiring surgeon Dr. Thomas Rouse, who leaves Riley next month after three-plus decades.

“He has the wisdom of decades of pediatric surgery and leadership of programs under his belt,” Dr. Landman said of his colleague. “He has this incredible way about him in which he can get people to come together in a way that is almost an art. I paid a lot of attention to how he did that.”

“Dr. Rouse has been a huge inspiration for me as trauma director. He really provided an excellent template for me to follow as I assumed that role,” Dr. Landman said.

As Indiana’s only Level 1 pediatric trauma center (verified by the American College of Surgeons since 1993), Riley Hospital sees a range of injuries coming through its emergency department. Some of the worst involve motor vehicle accidents, gunshots, burns, abuse and neglect, drowning and lawnmower accidents.

“We’ve seen increased numbers of gunshot wounds annually since 2015,” said Dr. Landman, attributing it to unattended guns at home, as well as the rise in interpersonal violence and random violence.

“It’s almost predictable now that we’ll have one or two (gunshot patients) a week, whereas before it was much more rare,” he said. “No one really goes into pediatric surgery thinking they’ll be taking care of gunshot wounds, but kids aren’t immune to this sort of violence.”

IOWA ROOTS

Dr. Landman, who begins his seventh year at Riley this summer, had what sounds like an idyllic childhood in rural Iowa before following his dream to become a doctor. He came to Riley from Children’s Hospital Colorado seven years ago. Before that, he spent 11 years in Nashville, Tenn., for medical school and residency at Vanderbilt University.

He was drawn to trauma surgery because of his desire to help kids. His own brother suffered a traumatic injury in a car accident. Certainly, education and safety initiatives are the keys to reducing childhood trauma, but kids are still going to get hurt, he said.

“We’re happy to try to effect a positive outcome for each one of those patients, regardless of what’s brought them in the door, so they can reach some sense of wholeness again.”

Dr. Landman professional photo

Dr. Landman gives a shout out to his entire trauma team, including his surgical partners – Dr. Alan Ladd, Dr. Brian Gray, Dr. Deborah Billmire, Dr. Fred Rescorla, Dr. Tom Rouse, Dr. Troy Markel and Dr. Robert Cartland Burns.

The camaraderie and the community of the hospital helps when dealing with difficult cases, he said.

“The Riley family comes together to support each other when there are major accidents, injuries, things that really bring childhood illness, disease and violence to the forefront. We rely a lot on each other.”

COVID put a halt to the development of a trauma survivors program, but Dr. Landman is still hoping to get it going within the next year. Before launching, he said, it’s critical to have the resources in place to support people once they’re identified as being in need of services.

“We come to work every day and we’re surrounded by injuries and illness and surgeries, and I think it’s good for us as physicians to remind ourselves that this is not normal,” he said.

Families can be devastated, so understanding how to help beyond stitches and surgeries is important.

“If we can do anything to make it better for them, it’s an awesome opportunity.”

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https://www.rileychildrens.org/connections/fontan-follow-up-clinic Fontan Follow-up Clinic 2021-05-25T11:26:00-04:00 2021-05-25T11:27:26-04:00 A new clinic at Riley Hospital for Children is focusing on helping patients born with congenital heart defects thrive as they get older.

The Fontan Follow Up clinic is a one-stop shop for kids who have had this procedure. Each patient is able to see multiple specialists in one place, in one day.

Ethan McHenry was born with hypoplastic left heart syndrome and had the Fontan procedure when he was 14 months old. Now, he's learning how to follow a care plan while still getting involved in activities through school and with his friends. The team at the Fontan Follow Up clinic is able to guide him through this phase in life while closely monitoring his health.

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https://www.rileychildrens.org/connections/super-sydney-celebrates-two-years-with-her-new-heart Super Sydney celebrates two years with her new heart 2021-05-24T18:41:00-04:00 2021-06-03T09:42:33-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Just call her Super Sydney from now on!

Sydney Deaver, 2½, received her very own tiny superhero cape recently after her mom, Ashley Deaver, nominated her and raised enough money to snag a cape for Sydney and two other little superheroes from an organization called TinySuperheroes.

Sydney wears a TinySuperheroes cape with an "S"

Sydney, who was just 5 months old when she received a new heart at Riley Hospital for Children at IU Health, looks adorable in the red cape, emblazoned with the letter S for Sydney.

Cardiothoracic surgeon Dr. Mark Turrentine performed the transplant after his young patient was diagnosed with Noonan syndrome, a disorder that can cause heart defects, when she was about 2 months old.

Her tiny heart was rapidly failing as her parents, Ashley and David, kept vigil by her bedside for months at Riley.

Today, Sydney is thriving. She loves splashing in a water table at home, playing outside and coloring, her mom said. She receives physical therapy at Riley’s East Washington Street outpatient clinic, and she continues monthly speech therapy at Riley to work on feeding issues. She sees cardiologist Dr. John Parent at Riley every three months.

Sydney baby photo

Ashley said looking back at pictures from those long, hard days in the hospital, when she didn’t know if a heart would be found in time, brings back a lot of difficult emotions, but her daughter didn’t give up, so neither could she.

Post-transplant, Ashley was at her daughter’s bedside at Riley from 8:30 in the morning until 8:30 in the evening every day, watching her, holding her, reading to her and singing to her.

“I couldn’t imagine myself being anywhere else,” she said at the time. “Being here and seeing her little smiley face just makes me so happy.”

Sydney smiles as she sits outside

And now she can’t imagine anything more wonderful than being Sydney’s mother.

“She’s been through so much and showed us how much strength she has,” said Ashley, who describes Sydney as stubborn but always smiling.

Sydney celebrated her two-year transplant anniversary May 7.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Related:

After transplant, tiny patient steals everyone’s heart - In celebration of American Heart Month, we catch up with a 1-year-old cutie who received a new heart at Riley when she was 5 months old.

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https://www.rileychildrens.org/connections/teddy-finds-his-voice-at-riley-clinic Teddy finds his voice at Riley clinic 2021-05-23T14:09:00-04:00 2021-06-03T09:44:20-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Krystal Earls’ son Teddy was 3 when she started to worry about his language skills. Tests revealed no hearing or developmental issues. He just wasn’t speaking clearly.

“It came very fast. He almost had a whole other language when he spoke,” Earls said. “I understood everything he was saying, but I knew others wouldn’t.”

Teddy’s pediatrician suggested he meet with a Riley Hospital for Children speech pathologist at the IU Health Methodist Medical Plaza Eagle Highlands clinic on the city’s Westside.

Teddy works with a speech pathologist

The results have been amazing, Earls said, as she watched her son work on vocabulary and language skills with speech pathologist Lauren McKinney.

“His progress has been great,” Teddy’s mom said. “He loves Miss Lauren and enjoys coming to see her.”

Teddy’s enthusiasm is on full display at his weekly session with McKinney, whom he’s been working with since August.

Now 4, Teddy’s vocabulary has grown, but more importantly, he’s learning to string words together in short sentences. By age 3 or 4, kids should be combining three or four words together to communicate, said McKinney, who holds a bachelor’s degree in speech and hearing sciences and a master’s in speech language pathology.

“I got it!” Teddy had just snagged a fish in a fishing game using a toy pole with a magnet on the end. He is engaged, excited and exercising his improved language skills without even realizing it.

McKinney explains to a visitor that the game is a reward for answering questions in between snagging colorful fish.

“He’s working on object function, and that’s a vocabulary-building activity. We’ll take a break, use the iPad to work on questions, then come back to the game. It’s a reinforcement activity.”

Other activities include working with Play-Doh and reading.

“I got a green fish,” Teddy squeals.

“One more, Teddy, then we’re going to look at the iPad.”

The questions are easy enough, but the goal for Teddy is to process what McKinney is asking, look at the pictures, then find the right word for the answer.

“What do you wear, Teddy?”

“A shirt,” he exclaims, pointing to a picture of a shirt.

“What do you use to talk?”

“A phone!”

“And what do you read, Teddy?”

“A book!”

“Great job, buddy,” McKinney says.

Back to the fish game they go.

“I turn it on,” Teddy says. “I love your words,” McKinney encourages him.

“Even though we’re playing the fish game, we’re still working on language indirectly,” she said. “Teddy is working on building his vocabulary, sentence structure and using pronouns like he, she, they, and also working on plurals, adding that s to the end of words.”

When he first started therapy, they focused more on receptive language skills – understanding and following directions, she explained. Now he is working on both receptive and expressive language.

Teddy works with Speech Pathologist Lauren McKinney reading a book

“He’s made a lot of progress with receptive, so we’re focusing more on expressive language – using words to communicate,” McKinney said. “When he started therapy, he wasn’t using a lot of words. Sometimes he would use what we call jargon – he’s saying something intentional but not using true words. And he was frustrated because of his difficulty with communication.”

Sometimes with language delays, there is no root cause, she explained. Some kids just need a little more support, a jumpstart, as in Teddy’s case.

Direct intervention, coupled with parental reinforcement of skills at home, has made all the difference for Teddy.

“I’m very proud of him. And his mom is awesome,” McKinney said. “She follows through with all of my recommendations. That’s what helps his progress – if the parent is learning from you and then implementing the same thing at home in the best way they can. She does just that.”

McKinney, who has been with IU Health for a year and a clinician for five years, is currently seeing children from ages 20 months to 13, but the Westside Riley clinic treats kids from birth to 18.

Her entire time with Riley has been during the COVID pandemic, so masks have always been required, which can be challenging, she acknowledged, though see-through masks are available when necessary. In Teddy’s case, he is working on language, as opposed to speech and articulation, so it’s not as much of a barrier, she said.

As Teddy talks about the hearts and cookies he is making with Play-Doh, McKinney has to occasionally get him to slow down and speak purposefully. But she is delighted with his progress.

While he had a decent number of words to get by when he started, his ability to put words together to communicate has greatly improved, both mom and therapist agree.

“He’s where he should be now,” said Earls, who works with her son everyday on the exercises McKinney recommends.

Before long, McKinney expects that her young patient will be ready to “graduate” from therapy before starting school.

Riley’s comprehensive Audiology & Speech Pathology program is designed to help children achieve a better quality of life by identifying, assessing and managing their speech, hearing and related problems. Find out more here. https://www.rileychildrens.org/departments/audiology-speech-pathology

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/junior-gets-a-new-heart-weeks-before-his-first-birthday Junior gets a new heart weeks before his first birthday 2021-05-20T07:48:00-04:00 2021-05-24T11:18:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

His real name is Brian, after his dad, but everyone on the Heart Center at Riley Hospital for Children knows him as Junior.

His big brown eyes and sweet smile are well-known to the nurses, physicians and therapists who sometimes come into his room just to get their Junior fix.

Junior in a hospital bed smiles

Helen Murdock is one of those nurses.

“Junior has the best smiles and the most expressive eyes. He brightens my day.”

“Junior” is Brian Aylor Jr., son of Brian and Mallory Aylor. He was born with multiple heart defects and has been hospitalized at Riley for seven months, more than half his life.

Two weeks after his birth in June of 2020, he had open heart surgery, then was able to go home. But his condition deteriorated, he had more surgeries, and in December, he was put on the heart transplant list.

Realizing that your child needs a heart transplant is hard to grasp, Mallory said.

“I knew it was a possibility, but you are shell-shocked as things are put into motion.”

Brian and Mallory rest in the hospital

Mallory, a nurse herself, has spent most days and nights at the hospital, while Brian works near their home in southern Indiana. The couple also have a 3-year-old daughter.

It was during a prenatal appointment at 24 weeks when Mallory found out her baby had serious heart defects, including hypoplastic right heart syndrome, tricuspid atresia, transposition of the great arteries, atrial septal defect and ventricular septal defect, more commonly known as holes in the heart.

“He had it all,” she said.

And because of COVID, she was at that appointment alone.

“It was a lot,” Mallory said, adding that she didn’t want to tell her husband over the phone, so she drove home alone, carrying that mental burden with her.

But her pregnancy continued without further incident, and Junior weighed a healthy 8 pounds, 1 ounce at birth.

Throughout his months at Riley, he continued to grow well, thanks to nutritional support and care provided by Dr. Charles Vanderpool and the GI team. And he had multiple surgeries performed by cardiothoracic surgeon Dr. Mark Turrentine.

But on May 1, he had the biggest surgery. That’s right – little Junior received the gift of life, a new donor heart transplanted by Dr. Turrentine.

“He’s doing great,” Mallory said via text Wednesday night. “He is just thriving with therapy and advancing very quickly. He is definitely making up for lost time!”

Junior loves all of his nurses, doctors and therapists, she said. Music therapy is a favorite.

“He is personable, friendly, has a captivating stare and plays with everybody.”

Brian plays with his toys

Since his big sister hasn’t been able to visit, child life specialist Courtney Lyon created a special book for her to have at home. It includes pictures of her brother and the hospital and explains things in a way she can understand, Mallory said. It’s a gesture that has meant a lot to the family.

“We tell his sister he has a special heart, and he needs extra care.”

It’s been a long road for the family, but Mallory says a strong support system at home and the medical team at Riley have made all the difference.

And now, they are looking at potentially getting discharged as early as next week – just in time for Junior’s first birthday in June.

It will probably be a virtual party for all but the immediate family because his immune system will be weak, Mallory said, but she has big ideas.

“We’re still going to do it up! His theme is going to be ‘One Wild Year,’ and we’re going to decorate with wild animals.”

A wild year indeed. Here’s to a happy first birthday for Junior.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/6-year-old-shooting-victim-reunites-with-first-responders-who-saved-her 6-year-old shooting victim reunites with first responders who saved her 2021-05-19T13:09:00-04:00 2021-05-24T10:51:21-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

It was the kind of reunion that brings tears to your eyes. The little girl grabbing hold of the leg of one of her rescuers, the paramedics and emergency medical technicians crowding around to hear her whispers of thanks.

Bri’Alle McNeil was critically injured in early November when an errant bullet came crashing through her bedroom wall while she was sleeping. The gun violence that her mother had feared outside her home had found its way inside, nearly killing 6-year-old Bri.

But this beautiful day in May, six months later, was a celebration. Bri had survived, due in no small part to the heroic efforts of the first responders who rushed into the night to save her, transporting her to Riley Hospital for Children at IU Health, where a trauma team was ready to jump into action.

Bri with members of the Pike Township Fire Department

Members of the Pike Township Fire Department, Station 61, presented Bri – who was wearing red Converse sneakers and a jean jacket emblazoned with her name and pink feather trim – with a pink fire helmet and other goodies when she and her mom, Angel McNeil, visited the Indianapolis station last week to say thank you.

Reunions like this mean the world to first responders like Capt. Aaron Bell, who was one of the transporting medics that night in November.

“We’re well-trained for those runs, but they’re the runs you never want to go on,” he said, those involving children.

But this run was a win.

“We had really good transition, from the IMPD officer who initially carried her out to us to the transition at Riley. Everything went really smoothly,” Capt. Bell said.

Joining him in the back of the ambulance that night were Chris Berger, Allen Hall and A.C. Niyikiza, all firefighters and first responders trained to save lives and transport their precious cargo to Riley, the only Level 1 pediatric trauma center in the state.

Mike Goodrich, division chief of EMS, said seeing Bri and her mom last week was gratifying for his team.

“We don’t always even find out how some people do, let alone get to meet them,” he said.

Bri and Dr. Matthew Landman

Also on hand last week was Dr. Matthew Landman, medical director for trauma at Riley, who saw Bri during her hospital stay, though he credited trauma surgeon Dr. Brian Gray and others for the bulk of her care.

“Dr. Gray, the nursing staff, operating room staff, plastic surgeons, rehab, physical therapy, a whole host of people worked to get her to where you see her today,” Dr. Landman said, as Bri stood quietly nearby.

“We are extremely pleased with the progress she’s made,” he added. “From where the EMS crew found her to where she is today is miraculous.”

It was when Dr. Landman and Bri chatted off to the side that the little girl’s sparkle was on full display.

“Where’s Dr. Gray,” she asked. “He told me to say hi,” Dr. Landman responded, adding, “You look great!”

As Angel McNeil told the surgeon the activities that Bri is eager to return to, the first-grader mentioned that she has a pool now at their new home. The family has moved out of the home where the shooting occurred.

“Oh, I’ll be over,” Dr. Landman said. “Dr. Gray and I will come by.”

That seemed OK with her, but she quickly switched subjects to the tie he was wearing with his white coat. When he told her he put it on for their reunion that morning, she scoffed. “Well then take it off!”

That’s the spunky Bri her mom knows and loves. Her youngest child is strong and spirited, she said.

Bri getting interviewed by WRTV

It was that spirit and strength, coupled with the quick action of medical personnel, that pulled her through her devastating injuries.

Injuries that no child should suffer, Dr. Gray said in an earlier interview.

“She was sleeping in her bed … when a gun went off outside her house, and the bullet went through the wall of her home into the room where she was sleeping,” the surgeon said. “She sustained a severe gunshot wound through no fault of her own or anyone in her family.”

The bullet tore through her small body, entering her left side and exiting through her right upper abdomen and right forearm. She suffered injuries to one kidney, her adrenal glands, pancreas, large and small intestines, stomach, liver and one lung.

Today, her physical wounds have healed, though she continues therapy at Riley to manage pain and improve her mobility. The emotional wounds may take longer to dissipate. PTSD is always a concern with such a violent event, Dr. Landman said.

As Bri giggles and climbs aboard one of the firetrucks, her recovery seems assured. Even her mom wonders sometimes who is taking care of whom. She recalls something her daughter told her during her seven weeks of hospitalization at Riley.

“We got this, Mama,” Bri told her mom. “I’m gonna keep getting better. Just watch.”

Indeed, just watch.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/far-from-home-father-and-son-find-help-for-epilepsy Far from home, father and son find help for epilepsy 2021-05-18T10:14:00-04:00 2021-05-24T14:31:21-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Obed Oroko would do anything for his son, Mao. Even if it meant traveling 8,000 miles across the globe for a chance at a better life.

Oroko and 10-year-old Mao made the 20-plus-hour journey from Kisii, Kenya to Riley Hospital for Children in Indianapolis in late March on a wing and a prayer.

Desperate for help to alleviate Mao’s epileptic seizures, Oroko turned to his brother, Riley pulmonologist Dr. Evans Machogu, for advice.

An agreement was reached to provide humanitarian care for Mao at no cost to the family, and they worked with IU Health’s Destination Services team to arrange the visit.

“At the beginning, we thought that medication would help him recover,” Oroko said. “We were not ready to come here until we got to the point where doctors said medications were not going to work.”

That was the saddest moment of their lives as parents, Oroko said. He and his wife have watched and worried as their son has dealt with seizures since he was a toddler. Though they mostly occurred at night, the couple was fearful that something would happen at school.

“We as parents were left worrying when he goes to school whether it’s going to be a normal day for him,” Oroko said. “In Kenya, there is a lot of stigma around epilepsy, so when you have a case happening in school, that can be very disastrous to the child because nobody understands this disease back at home.”

It left the couple anxious day and night – until they learned that Riley neurosurgeon Dr. Jeffrey Raskin and other providers had agreed to donate their time and talents.

“There was a glimmer of hope when Riley Hospital agreed to help us through humanitarian aid to see if they could do surgery or not,” said Mao’s dad, who traveled to the United States with his son, leaving his wife and older son back home in Kenya.

“For us, it’s unbelievable that this happened in our lives. We are extremely excited and very thankful for this wonderful gesture.”

Mao in physical therapy

Dr. Raskin and his team performed multiple diagnostic tests on Mao, including stereo-electroencephalography (sEEG), using a cranial robot to place electrodes into the boy’s left cerebral hemisphere.

Epileptologist Dr. Robert Blake did bedside mapping along with EEG technicians and identified where the boy’s seizures were coming from. Another surgery in early May removed the electrodes and placed lasers targeted to destroy the seizure-specific parts of the brain while protecting his normal brain.

“He went home two days after surgery and is seizure-free,” Dr. Raskin said. “It went fantastic.”

Oroko family photo

Home, in this case, means back to his uncle’s house, where father and son are staying while Mao recuperates. He returns to Riley for physical therapy and follow-up visits but is expected to fly home to Kenya at the end of the month.

Oroko said the past eight years have been filled with uncertainty regarding Mao’s health.

“We had no idea what was to become of Mao. We were always anxious about his going to school, not knowing if he’s going to come back, if he’s going to be involved in an accident.”

He and his wife considered home-schooling Mao so they could keep watch over him. But now the soccer-loving 10-year-old can get back to being a kid again.

“I wish to express my deep sense of appreciation to the entire hospital, the administration, the doctors and the entire team that played a part in Mao’s treatment,” Oroko said. “In Kenya, this is a very big problem, and many parents don’t know what to do about it. When I get back home, I want to let people know there is help for epilepsy.”

Mao working through physical therapy

According to Dr. Raskin, epilepsy is a dangerous and stigmatizing condition that is “profoundly undertreated around the world.”

“Our program is on track to do 120 epilepsy surgeries this year. Whenever possible, we use minimally invasive methods including cranial robotics and laser ablation,” he said, adding that Riley’s Comprehensive Epilepsy Program is capable of the most technologically advanced treatment methods in the world.

Learn more here.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/la-vacuna-contra-la-covid-19-ya-esta-disponible-para-ninos-de-12-15-anos La vacuna contra la COVID-19 está disponible para personas mayores de 12 años 2021-05-17T11:21:00-04:00 2021-10-15T14:51:04-04:00 La vacuna contra la COVID-19 está disponible para los niños de 12 años en adelante. La Administración de Alimentos y Medicamentos (Food and Drug Administration, FDA) de los EE. UU. aprobó la autorización de uso de emergencia de la vacuna de Pfizer para este grupo de edad.

En agosto, la vacuna de Pfizer recibió la aprobación total para personas mayores de 16 años. Las otras dos vacunas contra la COVID-19 autorizadas para uso de emergencia en los EE. UU., Moderna y Johnson & Johnson, solo están disponibles para las personas mayores de 18 años.

Lo que hay que saber sobre las vacunas contra la COVID-19 para adolescentes:

  • La vacuna de Pfizer es segura y eficaz. Las tres vacunas aprobadas para adultos, incluida la de Pfizer, fueron eficaces para ayudar a prevenir los casos graves de COVID-19. En los ensayos clínicos ampliados que Pfizer realizó para este grupo de edad, no se registraron casos de COVID-19 entre los participantes que recibieron la vacuna.
  • Los efectos secundarios fueron similares a los que informaron los adultos. En el caso de los adultos, los efectos secundarios habituales tras la vacuna contra la COVID-19 incluyen hinchazón o enrojecimiento en el lugar de la inyección, fiebre, dolor de cabeza, cansancio, dolor muscular, escalofríos y náuseas. Algunas personas no experimentan efectos secundarios.
  • Los niños de 12 a 15 años recibirán la misma vacuna de dos dosis que los adultos. Tiene que estar disponible para volver al mismo lugar de 19 a 23 días después de su primera cita.
  • Ponerse la vacuna contra la COVID-19 ayuda a protegerlo a usted y a los que lo rodean. La COVID-19 no ha sido tan grave para los niños como lo ha sido para los adultos. Sin embargo, los niños aún pueden contraer el virus y también transmitirlo a otros. Vacunarse ayuda a proteger a los que lo rodean, incluidas las personas mayores o las que padecen enfermedades crónicas, que pueden ser más propensas a contraer un caso grave de COVID-19 si se contagian.

    Programar una cita

    Para programar una cita, llame al 211 o visite la página ourshot.in.gov. Varios centros de vacunación contra la COVID-19 atienden sin cita previa. Visite el sitio web para encontrar los lugares sin cita previa más cercanos a su domicilio.

    Para obtener más información sobre las vacunas contra la COVID-19 o aclarar dudas, visite iuhealth.org/vacuna.

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    https://www.rileychildrens.org/connections/10-month-old-recovering-after-multi-organ-transplant 10-month-old recovering after multi-organ transplant 2021-05-16T14:30:00-04:00 2021-05-24T14:08:49-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    She’s a tiny little thing with big hazel eyes that seem to take in everything around her.

    A ventilator helps her breathe, but her mom and dad pray for the day when the tube will come out and 10-month-old Adah Maust will be able to smile and laugh again.

    Adah, the daughter of Ethan and Jordan Maust of Carmel, is recovering today nearly two weeks out from a multivisceral transplant at Riley Hospital for Children at IU Health.

    10-month-old Adah with a ventilator

    Born with a birth defect called omphalocele, the infant’s intestines were protruding outside her belly. She also suffered a congenital anomaly to the intestines that left her with multiple areas of stricture or narrowing and incomplete formation. She couldn’t eat or drink by mouth, relying on a tube for nutrition.

    A multivisceral transplant – involving stomach, liver, pancreas, small and large intestine – was determined the best bet for her long-term quality of life.

    It was a far cry from the early days after her birth when her parents thought her condition could be treated relatively easily. When that proved impossible, they transferred her to Riley, where she was placed in the care of Drs. Alan Ladd and Charles Vanderpool, co-directors of the intestinal rehabilitation center at Riley.

    Together, the physicians managed her nutrition and growth, while consulting with transplant surgeon Dr. Richard (Shane) Mangus on her viability as a transplant candidate.

    Adah receiving a health check-up

    Adah’s parents received the call they’d been waiting for May 3. A match was found.

    Dr. Mangus and the transplant team worked through the early morning hours of May 4 to complete the complex transplant, beginning at about 1 in the morning. By 9 a.m., they were finished, but it would be another few hours before Jordan and Ethan could see their baby girl.

    “It was a really long night,” Jordan said. “But she’s doing well.”

    She and her husband take turns staying with Adah at Riley while the other cares for their 2-year-old at home. While it’s hard seeing her daughter on the vent, Jordan has been comforted by the care Adah receives.

    “A lot of the nurses on the ICU floor especially know how to comfort babies,” she said. “They’ll rub her forehead and she likes this little comfort bear on her face. They hold her hands. It’s really sweet to watch.

    “They even take care of us,” she added. “They make sure we get out for a walk every day and that we’re eating.”

    Dr. Mangus has been in daily to check on Adah, who continues to be sedated while on the ventilator.

    “Her transplant went very well,” the surgeon said. “She is having a slow, but steady recovery.”

    Adah smiles for a photo

    Adah is at high risk for immunologic complications because of an underlying immune deficiency, he said, but he continues to be optimistic, despite the long road ahead.

    Jordan is looking ahead as well, strengthened by her faith.

    “It’s a bumpy road for transplant and we’re aware of that,” she said. “It’s a long road, but hopefully this will give her a chance at having a pretty normal life, something we didn’t have the possibility of when we got her diagnosis.”

    To an outsider, it might seem unusual to perform such a complex transplant involving multiple organs on a baby, but Dr. Mangus said he has performed several in children younger than 1.

    “They have done particularly well,” he said, “with low rejection rates and good growth and development. Many of them are now teenagers.”

    While Adah is expected to be hospitalized for several more weeks, her parents are hoping she will be home in time for her first birthday this summer.

    What a party that will be, and Jordan can’t wait.

    “She might actually be able to eat cake for the first time!”

    Related Article:

    Only 8 months old, baby Adah needs a transplant - Born with intestinal abnormalities, this Carmel girl is thriving under the care of a specialized Riley team, even as she awaits a complicated surgery to replace her stomach, liver, pancreas and intestines.

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    https://www.rileychildrens.org/connections/doing-her-best-brings-her-peace-and-pride Doing her best brings her peace and pride 2021-05-13T07:47:00-04:00 2021-05-13T09:03:22-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Bernice Powell likes to start her day with an early morning walk, letting the singing birds serve as her soundtrack.

    It’s good for her body and good for her mind – helping to bring a sense of peace and focus for the day ahead.

    Powell, mother of three and grandmother of two, has worked in environmental services for IU Health going on 23 years this summer, the past 12 at Riley Hospital for Children at IU Health. Previously, she was at IU Health University Hospital 11 years.

    At first, she wasn’t sure she was cut out for hospital work, but that concern “went out the window” before too long, the soft-spoken woman said.

    “Just seeing the patients brought out a passion in me.”

    That’s because she saw a need. A need that she could fill with a smile, a kind word and a gentle touch. Not to mention, total dedication to her job.

    Though she was responsible for cleaning patient rooms and public areas at University, she found time to connect with patients who were alone.

    “There were some who didn’t have anyone come visit, and that brings tears to my eyes still,” Powell said. “I would come back on my breaks, just to talk to them. That convinced me I was in the right place. I stopped looking at myself and started looking at the patients.”

    In time, however, she felt the weight of that role, especially when patients wanted her to come in on her day off if they were having surgery.

    “I felt like I had to be there, like I played a part in their healing.”

    The move to the Riley Outpatient Center, which puts her in closer proximity to children, has been wonderful, she said. She shows her pride by buying Riley T-shirts for her grandkids, her sisters, her grandchild’s bus driver and herself, sporting one over her uniform on casual Fridays at the hospital.

    “I’ll go broke buying Riley T-shirts,” she laughed.

    But giving to others brings her joy.

    Powell learned all about giving back from her parents who raised her and her 11 siblings with the values of hard work, service to others and doing the right thing.

    She was about 8 when her parents moved the family from Mississippi to Indianapolis, where they were raised in a house with a backyard big enough for a prized garden that fed the large family throughout the year.

    “The only thing we had to go to the store for was meat, flour and sugar,” she said. “We ate from the garden.”

    She learned compassion from her mother, accompanying her as a child while the older woman cared for her brother when he was ill.

    “She taught us well and explained to us that this is what we are supposed to do – help others. Give your best to others because somewhere down the line you might need help, too.”

    Being on the receiving end of help is harder for Powell.

    “I’m not always comfortable receiving because I’m a giver, but being able to accept help is a gift too, so I’m having to learn that.”

    Her parents are both in their 80s now, and she’s been looking in on them from a distance during COVID. She leaves work at Riley most days and first checks on them to make sure they’re OK and asks if they need anything.

    Then she’s off to meet her young grandkids when they get off the school bus, staying with them until their mom gets off work.

    She puts in a full day but says she looks forward to going to work, taking satisfaction in being a team player and putting 100% into whatever job she does.

    “I was taught to give my best and that my work represents me,” she said. “I have to be happy with my work. That gives me peace, knowing I’ve done a good job.”

    That dedication and commitment hasn't gone unnoticed.

    "Bernice is a wonderful person and one thing that everyone loves about her is that she always has a beautiful smile, she is always willing to help others and always goes above and beyond to keep our families safe," Jose Torres, environmental services shift supervisor said.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/joining-the-fight-to-prevent-traumatic-injuries Joining the fight to prevent traumatic injuries 2021-05-12T08:10:00-04:00 2021-05-12T08:15:07-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    As Indiana’s only Level 1 pediatric trauma center (verified by the American College of Surgeons since 1993), Riley Hospital for Children at IU Health is equipped to treat the most severely injured pediatric patients.

    And as the new injury prevention coordinator at Riley, Crystal O’Donnell is one of the people leading the charge to make Indiana a healthier, safer state for our children.

    O’Donnell, who joined the Riley team April 5, brings a wealth of public health experience, most recently with the Marion County Health Department, to her role at Riley.

    “I’ve been in public health for about 10 years and I’ve focused on maternal and child health,” she said. “For the last four years, I’ve been doing fetal and infant mortality review and all of the things that come with that. This gives me a chance to focus more on prevention to make a difference.”

    Today (May 12) marks Injury Prevention Professionals Day, designated by the American Trauma Society to recognize those who play a vital role in the advancement of injury prevention and serve as key members of the trauma team. In addition, May is Trauma Awareness Month.

    Riley offers 24/7 in-house trauma care provided by pediatric fellowship-trained surgeons, anesthesiologists, radiologists, emergency medicine physicians and critical-care physicians. All surgical neurosurgeons and orthopedic surgeons also are board-certified in pediatrics.

    While the concept of trauma might conjure up images of an ambulance rushing to the hospital, there is another important aspect that ideally plays out before an injury occurs. That’s where the injury prevention coordinator role is key.

    “A very important part of trauma education is helping to make families and communities safer, hopefully so they never need our acute care services,” said Dawn Daniels, trauma program manager at Riley.

    In fact, it is such an important role that the American College of Surgeons mandates that injury prevention should play a pivotal role in the trauma program, she added.

    As injury prevention coordinator, O’Donnell will continue the work that Riley has long been known for: partnering with community groups to assist new parents with injury prevention information (safe sleep, car seat safety), as well as child passenger safety/community car seat clinics, a focus on decreasing pedestrian injuries and injury prevention in schools.

    Riley is one of a select few children’s hospitals in the country verified as a Level 1 Pediatric Trauma Center by the American College of Surgeons. An onsite review every three years verifies the department's quality.

    O’Donnell, who has a bachelor’s in nursing and a master’s in public health, is working toward a doctorate focused on advanced public health nursing.

    Her biggest goal in the first several weeks is to listen and learn, while also analyzing recent data for the kinds of traumatic injuries treated at Riley in an attempt to identify the root causes of injuries.

    “I want the data to help guide the role,” she said, including understanding what evidence-based interventions are in place and the role community partners play in addressing injury prevention.

    “The key is to work together to make change. I can’t wait to reach out to the community to dig into all of that,” she said.

    And she is ready to get to work.

    “I am truly excited to be here. I am the type of person who wants to make a difference and help people however possible. I want to try to remove any barriers that prevent them from living a healthy life,” she said.

    “As an individual, I cannot do this alone. I need to work in collaboration with others in the community. With that being said, I would love to meet and hear from the community (individuals/organizations) on what they are seeing in regards to why childhood injuries are occurring and how can we work together to make a change.”

    A native of Ohio, O’Donnell and her husband, Michael, have a 10-year-old daughter. They recently completed a major rehab of their previous home before moving to a new home, where she is focused on smaller reno projects, indulging her love of repurposing old items and woodworking.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/mom-helps-teen-drop-weight-reverse-diabetes-diagnosis Mom helps teen drop weight, reverse diabetes diagnosis 2021-05-06T08:51:00-04:00 2021-05-06T08:53:24-04:00 By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org

    He could not quench his thirst. That was one of the first signs. Then he began vomiting.

    “By the time we got to Riley Hospital he could barely walk. His sugar level was almost 600. I was scared,” said Taye’ Baker’s mom, Michelle Stewart. That was Aug. 19, 2019. Baker weighed 306 pounds. Since then, he’s dropped to 190 pounds.

    Baker was admitted to Riley Hospital for Children at IU Health where he remained a patient for four days. Other than two cousins who were diagnosed with diabetes, Stewart said she doesn’t know anyone in her family who has the disease.

    “I’ve been the exact same size since high school. I was 32 when I had Taye’ and sister is 15 years older. I had no idea what was happening and how I could help my son,” said Stewart.

    She set her mind to learn – and learn quickly.

    Working with a nutritionist and pediatric staff at Riley Hospital, Stewart learned to administer insulin shots to Baker.

    “I was terrified. We lived alone. I took a lot of notes and listened to the dieticians and tried to do what would help him,” said Stewart. She also wanted to understand how her son became sick so quickly.

    It was after his sophomore year at North Central High School when Baker spent the summer months with a close relative. Stewart said her son ate lots of fast food meals, and gas station grab-and-go snacks.

    “When he came back home he had picked up a lot of weight and I wondered why he picked up weight so fast. I was buying bigger sizes and he was using food as a coping mechanism,” said Stewart. With his diagnosis came five injections a day.

    “He didn’t want to be that way and I wanted to help him. We set up a schedule. I bought exercise equipment. We limited snacks and counted carbs. There were no fried foods, and soda was limited to diet drinks and only for special occasions,” said Stewart. She calculated calories and kept a journal of food intake.

    “I threw away grease and flour. I air fry or bake and limit sugar additives,” said Stewart. After dinner, she cheers for her son as he rides a stationary bike and continues to encourage him as he completes abdominal crunches. He was off of insulin in two months.

    “The mindset I had was I wanted to take the least amount of insulin possible and to get healthy. I was mostly focused on the weight loss because I knew everything else would follow,” said Baker, 17.

    As a high school junior he is on a college prep track. He played viola in the orchestra for two years and his favorite subjects are history and science. He enjoys playing video games and creating digital art. He plans to attend college after graduation and study computer science.

    “I absolutely wanted to lose weight but I wasn’t motivated until this happened,” said Baker.

    Some changes weren’t that tough, he said. He does not eat meat so his meals were focused on poultry and vegetables.

    “Instead of drenching things in BBQ sauce, I would only use two tablespoons and I measured the sauce and spread it out to give the impression there was more,” said his mom. His favorite foods are chicken patties and tater tots and he still enjoys the Thanksgiving Day favorites – turkey dressing and macaroni and cheese but those are foods he eats in moderation.

    “Moderation is everything. He likes pizza but now we limit it to a piece of cheese pizza once in awhile. We steer away from sweet treats and offer up sugar-free Jell-O instead,” said Stewart.

    How has the weight loss changed Baker?

    “He has so much confidence. When he gets dressed every day he knows he looks good and he feels good. He was first attending school virtually and when he went back his friends barely recognized him,” said Stewart.

    “I think people can see how I’ve changed – not just my weight but my mindset,” said Baker. “I’d tell other teens to ‘just try to do your best to eat what you like but not too much of it and always look out for the intake.’”

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    https://www.rileychildrens.org/connections/skin-to-skin-is-a-win-win-for-preemies-and-parents Skin-to-skin is a win-win for preemies and parents 2021-05-05T07:50:00-04:00 2021-05-24T10:34:26-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    No bigger than a doll, Piper Jo Glasgow is snuggled into her father’s bare chest, comforted by the beat of his heart and the softness of his voice.

    This is quality time, skin-to-skin time, and Army Staff Sgt. Austin Glasgow is known to get a bit emotional as he bonds with his baby in the NICU at Riley Hospital for Children at IU Health. He’s a softie when it comes to his little girl – all 2 pounds, 9 ounces of her.

    Austin Glasgow with his daughter

    Piper Jo surprised her parents – Kirby and Austin – and her doctors at IU Health Methodist Hospital when she basically delivered herself at 32 weeks. Kirby Glasgow was rushed to Methodist by ambulance from a Columbus hospital when she went into pre-term labor.

    The plan was to deliver Piper Jo by C-section at 36 weeks, but at 32 weeks she was ready to see the world, refusing to even wait for an operating room to open up, Kirby said. She was born two weeks ago.

    “She had enough of my body apparently,” the young mom said with a laugh.

    Giving premature infants skin-to-skin time (also known as kangaroo care) is crucial to their well-being, said Riley NICU nurse and shift coordinator Stacia Nickell, explaining that it helps them develop and bond with their parent or caregiver.

    That’s where the aptly named Kangaroo-a-thon comes into play. Started several years ago by Sunnybrook Health Sciences Centre in Canada, the two-week challenge (May 1-15) boasts the benefits of skin-to-skin time for infants and their parents. The goal is to raise awareness both within neonatal units and the community at large of the importance of skin-to-skin as a form of therapy.

    Riley has participated in the challenge in the past. In fact, Riley Hospital at IU North won in the Level 3/4 NICU competition in 2018, with an average of 4.63 hours held per baby per day.

    This year’s contest at Riley downtown is being coordinated by NICU nurses Yolandi Crose and Kathryn Lujajohnson. Parents receive packets explaining the program, along with data collection sheets to track their hours and kangaroo stickers. Prizes are awarded when goals are reached.

    “When these babies are born premature, they’re outside the womb when they should still be in,” Lujajohnson said, “so holding skin-to-skin is going to help that bonding with Mom or Dad. It also helps with pain control and temperature stability.”

    The closeness with their baby in turn helps parents feel less stressed and more connected, she said.

    That’s exactly what Austin Glasgow feels as he holds Piper Jo.

    Piper Jo skin-to-skin with Austin

    “It’s comforting because I’m scared that she’s so small and I feel like she’s so brittle,” he said. “The nurses say she’s not as fragile as you think. To feel her warmth, it soothes me, and I feel like it soothes her. To see her sleeping almost breaks me down every time.”

    Sure enough, he sheds a few tears as he’s holding his tiny daughter, the youngest of the couple’s three children.

    Despite her size, she is doing well, Kirby said. She doesn’t require any supportive oxygen and is being introduced to breastfeeding, though she gets most of her nourishment through a feeding tube in her nose.

    “We’re just trying to get her to pack on the pounds so she can go home,” Kirby said.

    Down the hall and around the corner from Piper Jo is another preemie, Emmett Rudolph, born back in January at just 27 weeks’ gestation. He weighed 2 pounds, 2 ounces when he was born but now is up to 7½ pounds, said his mom, Emily.

    Emmett and Emily Rudolph

    “He’s had a long road to get here, but he’s progressing,” she said as Emmett rested his head on her chest.

    As she talks, Emmett opens his eyes and begins to fuss, but his mom calms him quickly with her soothing voice.

    “We have skin-to-skin time every day. I know it’s important to help him settle, and I just want him to know that he’s loved,” she said softly. “It makes me feel connected to him. I like that I can do that for him.”

    She and her husband, Matt, live in Indianapolis, so they go home most evenings, but they are eager to bring their little boy home with them.

    “We worked really hard to get Emmett,” Emily said, as she locked eyes with her son. “He’s our little man.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/a-gift-of-love-and-life A gift of love and life 2021-04-29T11:51:00-04:00 2021-05-20T10:48:10-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Ally Brock was just 5 when she was first introduced to the world of nephrology – the study and care of kidneys.

    Twenty-one years later, she’s an expert in the field – both personally and professionally. It’s not a road she expected to take, but the journey has taught her a lot, especially about a mother’s love.

    A nurse practitioner in pediatric nephrology at Riley Hospital for Children today, Ally is also a longtime patient. She received a kidney transplant at the age of 15 with her mom as her donor. Now she merges past and present by working with the same team of doctors and transplant coordinators who cared for her as a teenager.

    Ally Brock with her team of doctors and transplant coordinators

    She was diagnosed as a child with kidney dysplasia, a condition that resulted in at least one of her kidneys failing to properly develop in the womb. A biopsy when she was in seventh grade revealed something else – IgA nephropathy, also known as Berger’s disease, which occurs when deposits build up in the kidneys, causing inflammation that damages tissue.

    “Around that time is when my kidneys really started failing, but I felt OK until about the age of 14,” Ally said.

    That’s when she lost her appetite and her energy, dropping about 20 pounds. It was time for a transplant, and lucky for Ally, her mom was a good match.

    When it came time for the surgery, performed by IU Health transplant surgeon Dr. William Goggins, Ally’s mom, Jill, had her sister by her side at IU Health University Hospital, while then-15-year-old Ally had her dad, Bob, to watch over her, first at University, then at Riley while she recovered.

    Ally smiling with her mother, Jill

    It wasn’t until she got older that she better understood the significance of her mother’s gift, but now she can’t thank her enough.

    “I know the decision was not a big deal to her,” Ally said. “She was going to do it, no matter what. But at the time I didn’t understand … that it is a pretty awesome gift and she completely changed my life. I went from feeling pretty sick to feeling great and living a normal life. I’m very, very thankful for that.”

    Both mother and daughter continue to do well today. Jill Brock, a nurse herself, lives a healthy lifestyle, and her renal function is excellent, despite having only one kidney, said Ally, who went on to play high school tennis for three years post-transplant.

    When Ally decided she wanted to study nursing in college, her mom tried to talk her out of it, concerned that the anti-rejection medications Ally takes would leave her vulnerable to infections, particularly in a hospital setting.

    She spoke with Ally’s nephrologist, Dr. Corina Nailescu, and her transplant coordinator, Mary Lynn Subrin, separately to get their opinions. Both gave the green light.

    “We gave her this kidney for a reason, and that is to live her life to the fullest,” Ally recalled them saying. “As long as I took precautions, they were fine with me going into healthcare.”

    It’s a decision she’s never regretted, though she didn’t go straight to nephrology. She took a detour to cardiac care, working in the Riley Heart Center for a few years before deciding to go back to school to get her nurse practitioner degree.

    She loved every bit of her time in the Heart Center, but it was a clinical rotation in nephrology with Dr. Nailescu, now medical director of the pediatric transplant program, that brought her back to her roots.

    Ally at college graduation, surrounded by family and friends

    After graduating in May of 2020, she joined the nephrology team as an NP in August. She works primarily with outpatient transplant kids, in addition to seeing some babies in the NICU who have acute kidney injuries.

    The best part of the job for her is working with her own transplant team from 11 years ago, including Dr. Goggins, Dr. Nailescu, Dr. Myda Khalid and Subrin, her transplant coordinator.

    “They’re all like family to me.”

    Subrin has worked in transplant for 36 years, first as a nurse, then moving into the transplant coordinator role in 1988.

    “Ally is one of the thousands of reasons I love transplant,” she said. “We get to take care of the patients and watch them grow up.”

    Subrin remembers Ally as an attentive 15-year-old when she was transplanted, listening to every word her care team told her.

    “Ally wanted to become a nurse, and her mom was so worried about her immune system, and I told her: ‘This is why we transplant people, so they can go on to have a normal life.’ I told her mom we transplant teachers, farmers, laborers, doctors and nurses, and Ally could be a nurse.”

    Having her former patient working with her now is a treat, Subrin said, describing her as a “huge positive force for transplant.”

    “Ally is like my third child. I’m so proud of her!”

    The joy Subrin feels is matched by Ally’s enthusiasm for working with transplant patients and for organ donation.

    “For people to make the decision to donate organs is awesome,” she said. “Although having a transplant is hard, I tell patients you can still live a very normal life and go to college and work in whatever field you want. I was where you are,” she shares with them.

    Ally with her colleagues posing for a selfie

    Now, 11 years out from her transplant, she said her mom’s donated kidney is still working well. She gets monthly labs to check her numbers and sees her doctor every six months. Outside of work, she loves riding her bike, exercising and visiting national parks.

    What does Riley mean to her?

    “As a patient, I’m very thankful for the team I had and for the gift of life. As a nurse and a nurse practitioner, I have a whole different love for Riley. To be on the transplant journey with these kids is an honor.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/im-just-grateful-that-riley-is-our-village “I’m just grateful that Riley is our village” 2021-04-27T09:38:00-04:00 2021-04-27T16:40:22-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Being a Riley mom was not something Carlena Moses ever wished for, but she can’t imagine life without her “village” today.

    Moses delivered her daughter, Kennedy, at just 24 weeks’ gestation seven years ago. Tiny Kennedy Moses, weighing 1 pound, 4 ounces, was whisked over to Riley Hospital for Children at IU Health, where she would spend the next several months of her life.

    But that wouldn’t be the end of her care at Riley. Mom and daughter return every week for physical and occupational therapy for the cerebral palsy that otherwise would stiffen and weaken Kennedy’s muscles.

    On one such visit last week, Moses took to Facebook to express her gratitude for her Riley family.

    “Kennedy & I spend our Tuesday mornings at Riley. Today we ran into a special someone who cared for her when she was just a peanut in the NICU.Riley is truly our home away from home & I love that we get to see so many wonderful healthcare professionals that have cared for Kennedy during her journey.

    “As years continue to go by, Kennedy grows & members of her healthcare team change. Our Riley family grows! I have not forgotten a face or any names of the healthcare professionals that have been a part of Kennedy's plan of care! I will continue to smile & say thank you. I will continue to give God the glory & praise for not only blessing Kennedy with the most AMAZING caregivers (the Dream Team), but also providing me with support & encouragement from those same individuals! We are BLESSED!”

    Moses still remembers how scared and ill-prepared she felt when her daughter was born.

    “I was at Eskenazi when I had her. I knew a team from Riley was coming over to transport Kennedy to Riley, and shortly after I gave birth, someone from Riley came over to talk to me to explain what her plan of care would look like in the NICU.”

    It would be the beginning of a long relationship that has seen Moses and her daughter through good times and bad.

    Once Moses was released from the hospital and reunited with her daughter at Riley, she says she felt immediately included in Kennedy’s care.

    “There was so much going on, but I was never left in the dark,” she said. “There was always a plan in place, and if something went differently, there was another plan in place.”

    And there was something else she noticed.

    “It didn’t matter if I was talking to a prenatal care doctor, a nurse practitioner or one of the nurses caring for her daily, everyone always had something encouraging to say to me.”

    Kennedy would have challenges, she knew, but nothing was predetermined.

    In talks with her daughter’s nurses, she learned that it was she who would help determine Kennedy’s quality of life – by advocating for her, challenging her and just loving her.

    “A lot of people learn how to take care of children from other family members, Moses said. “I learned how to care for Kennedy at Riley. Everybody is very uplifting and trying to help me understand that the way I feel is also going to help Kennedy. I’m just grateful that Riley is our village.”

    One of those care team members who has made a positive impact is physical therapist Capi Seeger Scheidler, Moses said. She has worked with Kennedy since she was 3, and Moses believes she has been a catalyst for a lot of Kennedy’s care.

    “I feel like she is my fuel. She is a champion for me and for Kennedy,” Moses said of Seeger Scheidler. She is such a strong person and a strong part of our bond with Riley. I trust her, and I know that everything she does is custom-fit to Kennedy, and I would imagine that is the same with other patients she sees.”

    Kennedy also sees Dr. Francisco Angulo Parker, a pediatric rehabilitation specialist at Riley.

    “He has been phenomenal,” Moses said. “He explains things well, helping me see the bigger picture when it comes to her plan of care or the action steps I need to take.”

    There will continue to be challenges, of course, but Moses appreciates the positive vibes she feels whenever she and Kennedy walk into Riley.

    “As her mother, and just as her caregiver, I love that the doctors and nurses and medical staff share positive information with me and encouraging words so I’m in a healthy mental space to be her champion.”

    As she said in her Facebook post, she often sees team members who cared for Kennedy in the NICU, and just like she doesn’t forget them, they don’t forget her, she said.

    “When I see someone, I just try to express gratitude. It means something to know that Kennedy was not just a patient for a few months and they don’t remember who she is. She’s a person and I’m a person and they see us. That means something to me.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Related stories:

    From tiny preemie to 6-year-old spitfire - Kennedy Moses was in a hurry to enter the world, and she hasn’t slowed down since her birth at 24 weeks.

    ]]>
    https://www.rileychildrens.org/connections/sepsis-nearly-killed-him-but-jeremiah-is-equal-parts-joyful-and-fearless Sepsis nearly killed him, but Jeremiah is equal parts joyful and fearless 2021-04-27T09:03:00-04:00 2021-05-25T10:10:19-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Jeremiah Cox likely doesn’t remember when he could walk on his own two legs, scratch his nose or grab a toy without thinking about it.

    All of those movements take calculated effort today, 2½ years after complications from a bacterial infection (resulting in sepsis) stole all four of his tiny limbs and very nearly his life.

    But this isn’t a sad story about what Jeremiah has lost; rather, it’s about all that he has gained, all that he has learned and all that he has pushed through since that desperate day when surgeons at Riley Hospital for Children at IU Health determined there was no other way to save his life than to amputate his arms and legs.

    Now approaching his 5th birthday, Jeremiah is equal parts joyful and fearless. When not wearing his snazzy new leg prosthetics with the cute kicks attached to the feet or rolling along in his wheelchair, Jeremiah gets around by twisting and scooting on his backside.

    Jeremiah color with a marker

    He spends every Wednesday afternoon in outpatient therapy at Riley, working on mobility, speech, writing and self-help skills.

    Last week, occupational therapist Amy Bercovitz and speech therapist Ashley Finch worked in concert with Jeremiah as his mom, Abby, watched nearby. Exercises disguised as play gave both therapists the opportunity to reinforce skills learned over the past several months.

    Bowling, for example, required Jeremiah to adjust his new prosthetic arms (which bend at the elbow now), toss a ball and knock down the bowling pins. For each pin he knocked down, he activated his grabber mechanism on his right arm to pick up a card from the floor and tell Finch what the picture showed.

    “What is he doing?” Finch asked. “Um, underwater,” Jeremiah replied. “Yes, he is swimming,” she said. Next card: “What is she doing?” “Drinking milk.” “Good job. She is drinking milk.”

    Jeremiah puts on a shirt at physical therapy

    Bercovitz wants Jeremiah to show off his skills with his new dressing tree, an assistive device created by the IU Health 3D printing lab. Like a pro, the little boy scoots up close to the hooks on the dressing tree, using one to wiggle in and out of his little shirt. It can also help him remove his prosthetic arms and his face mask.

    “We have been trying to think of ways for him to be more independent with his upper body when dressing because he’s so smart. He learns things so quickly,” Bercovitz said, adding that the dressing tree came out of conversations she had with other team members who wanted to help.

    Abby Cox said her son likes being more independent, especially at home, where he has several siblings.

    “We can’t even help him with one little thing,” said the young mom. “He’ll sit there until he gets something. He won’t give up.”

    Still, she worries about his future now that he will be starting kindergarten in the fall.

    “I don’t like it,” she says. “I’m nervous, I worry about other people. That’s my big fear – I’ve protected him this long, but I’m not going to be able to do that at school.”

    She takes comfort in knowing that Jeremiah’s older sister will be in first grade at the same school, so he will see at least one familiar face.

    If there are any dinosaurs in kindergarten though, Jeremiah should be a happy camper. He eats, sleeps and dreams dinosaurs. Consider this conversation between Bercovitz and Jeremiah during therapy.

    “What else do we do in therapy?

    “Um, we doing … playing with dinosaurs.”

    “What’s your favorite toy?

    “Um, dinosaurs.”

    “What’s your favorite dinosaur?”

    “I like T-rex.”

    “What do we do over here?”

    “Play with dinosaurs.”

    “We practice writing. Let’s practice writing a J. What name starts with J?”

    “Um, T-rex!”

    You get the idea.

    After the two practice writing a J for Jeremiah, they turn the paper over and start work on – what else – drawing a dinosaur.

    “I need help,” Jeremiah says, so Bercovitz shows off her dinosaur-drawing skills, and together the two add spikes to the T-rex’ back.

    Jeremiah uses his prosthetic arm and grabber mechanism to play ball

    Next it’s back to the dressing tree, where Jeremiah hangs up his prosthetic arms before having one last chance to play. He chooses cars and delights in sending them flying down a makeshift ramp with a push from the residual arms left in place after his amputation.

    “I love this,” he shouts as one car flips upside down. “Whoa!”

    When it’s time to go, he pulls on his jacket with help and says to Bercovitz, “See you later, alligator.”

    The two have a sweet bond, forged over the two years that she’s been working with him.

    “He’s making such good progress, especially in the last six months to a year,” Bercovitz said, attributing that in large part to her little patient and his family.

    “I show them things here, and they practice at home, and that’s what makes the difference,” she said.

    “A lot of brains coming together is what has made him independent and successful,” she added, giving a shout out again to the 3D printing lab, as well as physical therapy, speech therapy, occupational therapy, Hanger (the company that provides his prosthetics), his team of doctors and his family.

    “Just everybody working together.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/sickle-cell-story-club-promotes-literacy-with-free-books Sickle Cell Story Club promotes literacy with free books 2021-04-21T17:12:00-04:00 2021-05-24T10:38:36-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    As psychologist Julia LaMotte turns the pages of the book “I Am Enough,” 6-year-old Andraya Hyppolite reads in a soft, halting voice.

    “Like the sun, I’m here to shine.”

    The bright first-grader just became part of a new club at Riley Hospital for Children – the Sickle Cell Story Club. And that means she and other patients in Riley’s Comprehensive Sickle Cell Program receive new books during clinic visits, thanks to generous donors and the passion of Dr. LaMotte and others for literacy.

    Andraya reads "I Am Enough"

    Dr. LaMotte joined the Riley sickle cell team in October from Children’s Hospital of Philadelphia and launched Sickle Cell Story Club just a few weeks ago.

    Modeled after Reach Out and Read, the program aims to improve literacy in children of all ages, specifically those who suffer from sickle cell disease, an inherited red blood cell disorder causing pain, infections and extreme fatigue. In the U.S., the disease is most common in African-Americans.

    “We know that kids with sickle cell are at a higher risk for having reading difficulties due to the disease process and the fact that many of our children will undergo silent and overt strokes,” Dr. LaMotte said, adding there are many benefits to having a book giveaway. “Most importantly, it increases the likelihood of engaging in literacy activities at home.”

    Sickle Cell Story Club

    Renette Hyppolite, who recently moved to Indiana from Florida, says her daughter loves to read and will add “I Am Enough” to her collection of books at home. Andraya says her favorite book is “Knuffle Bunny,” a tale of a stuffed animal’s trip to a laundry mat.

    “Kids light up when they see the books,” Dr. LaMotte said. “There is such joy. We specifically wanted to pick books that have diverse characters,” she added. “We know that having books with characters you can relate to helps increase literacy and confidence.”

    The books promote self-esteem, emotion identification and feeling good about the skin you’re in, she said, and feedback from families has been positive.

    “They really like it, and I think kids like that we have picked books with them in mind.”

    Averey Edwards was excited to show his new book to his dad when he got home from Riley last week. Averey, the 10-year-old son of A.J. and Rhonda Edwards, loves to read. In fact, last week he hit the jackpot, his dad said.

    Averey Edwards show off his "New Kid" book

    “They had a book fair at school last week, and he got about $30 worth of books. He’s always wanting to gain knowledge.”

    Described as mature, independent and quiet by his dad, Averey loves science and wants to be an aerospace engineer at NASA someday. He was able to meet an astronaut through Make-A-Wish two years ago.

    Books aren’t targeted to just young readers, but from ages 0 to 21, Dr. LaMotte said, emphasizing that the program is designed to promote reading across developmental ages, keeping in mind the literacy level of patients.

    It’s all part of Riley’s focus on the whole child, she explained.

    “It’s not just the patient we see in our office, but that patient lives a life outside of our hospital walls. We’re not just focused on their physical well-being, but we care about their emotional well-being and their academic competency. It’s incredibly important.”

    To purchase books for the Sickle Cell Story Club, check out this wish list.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/an-organ-donor-saved-this-little-girls-life An organ donor saved this little girl’s life 2021-04-19T11:25:00-04:00 2021-04-19T16:07:49-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Looking back now, Evalyn “Evie” Robertson says she had a bad feeling that something wasn’t right with her then 3-month-old daughter, Audrey.

    It’s hard to believe when you watch a now 3-year-old Audrey race around the lobby of Simon Family Tower at Riley Hospital for Children at IU Health. Wearing a shirt with the words, “So apparently, I’m dramatic,” the curly-haired preschooler has brought a wagon filled with her favorite toys to her appointment with Dr. Girish Rao, transplant hepatologist at Riley.

    Born “perfectly healthy” at 39 weeks via C-section, she weighed 8 pounds, 13 ounces.

    Mom and baby went home to Columbus after delivery to join Audrey’s big brother, who wasn’t entirely sure he wanted to keep his baby sister at first. Now, the siblings are like two peas in a pod, their mom says.

    It was the yellowish tint to her daughter’s skin that first worried Audrey’s mom. Jaundice, caused by the buildup of bilirubin in the blood, may occur if the liver can’t efficiently process red blood cells as they break down. It’s normal in healthy newborns and usually clears on its own.

    But Audrey’s didn’t clear up. In fact, it was getting worse. Add to that she was lethargic, fussy and not eating well. As her weight dipped below 8 pounds, she was diagnosed with failure to thrive at 3 months and eventually admitted to a hospital on the north side of Indianapolis, where exploratory surgery revealed the devastating reason behind her symptoms.

    Total liver failure.

    She was diagnosed with biliary atresia, a disease of the bile ducts that affects infants. Bile is a digestive liquid made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats. In biliary atresia, the bile ducts become inflamed and blocked soon after birth.

    The only cure is a liver transplant.

    “They didn’t expect her to live past her first birthday if she didn’t get a transplant,” Robertson said. “I was blindsided by it. I never realized you could be in liver failure at 3 months old. And I was in denial that at such a young age she was going to need such a huge procedure.”

    After that shattering diagnosis, Robertson took her daughter to Riley. IU Health Transplant at Riley offers comprehensive transplant services for pediatric patients. IU Health Transplant ranks among the top transplant centers in the country by volume and is the largest, most comprehensive center of its kind in Indiana.

    What followed were lots of tests, paperwork and meetings with doctors and a psychologist. Audrey was added to the transplant list on July 7, 2018. Early on the morning of July 20, the call came.

    Waiting was a nightmare, Robertson said, even if it was only 13 days.

    “I couldn’t sleep. I would wake up in the middle of the night in a panic, thinking, what if I miss that call? I felt like my phone never left my hand.”

    Still, when the phone rang at 2:31 a.m., Robertson told her mom she wasn’t ready. Marcia Baker was her daughter’s strength in that moment: “We have to be. We have to go,” she told Robertson.

    They arrived back at Riley within the hour, then waited for several hours until the transplant was given the green light. Audrey was just 6 months old at the time.

    As anxious as she was about her tiny baby going into the operating room, Robertson also felt relief. With her family gathered around at the hospital, she crawled up on the couch and slept as much as she could in between the hourly updates they were given.

    “I was mentally, physically and emotionally exhausted, and I knew when she got out of surgery she was going to need me. I tried to take that time to sleep because at that point my mind was eased.”

    As she is recounting her experience and corralling her daughter, Audrey’s surgeon, Dr. Richard Mangus, arrives for a mini reunion with the family.

    “She looks great,” he says as Audrey continues to run circles around everyone. “I didn’t recognize her.”

    As surgical director of pediatric liver transplant at Riley, he has seen his share of children in need of transplants. Liver transplants are rewarding, he said, because children do so well.

    “The liver works well, it’s very durable, and rejection rates are low,” he said. “Most of the children in this age group, they grow up and don’t even remember being sick as a child.”

    Dr. Mangus, who performs 12 to 15 pediatric liver transplants a year, said it’s technically difficult to operate on a child so small, but the transplant team is so skilled that the operation typically is seamless. The liver itself can last 30 to 40 years.

    The most important part of the team, however, is the organ donor, he said. In death, that person’s organs can save multiple lives.

    “We need every single person in this country to be an organ donor,” Dr. Mangus said. “There are tens of thousands of people, many children, waiting for transplants, and they all come from people who out of the goodness of their heart donate those organs.”

    Becoming an organ donor is an opportunity to be part of saving a life, he said.

    “We take care of a lot of very sick patients, especially adults, but the children you get to watch grow and develop and know that it’s because of transplant.”

    IU Health performs more than 500 organ transplants each year.

    Listening to Dr. Mangus talk makes Robertson emotional, she said, but she echoes his point about organ donation.

    “If sharing Audrey’s story could convince one person to be an organ donor, that person could potentially save seven lives and one of those seven lives could be a little baby like Audrey. She wouldn’t have seen her first birthday without it.”

    April is Donate Life Month. Find out how you can help here.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-partners-with-milk-bank-to-be-official-donation-site Riley partners with Milk Bank to be official donation site 2021-04-15T11:11:00-04:00 2021-04-15T13:11:43-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Donating breast milk at Riley Hospital for Children at IU Health just got a lot easier, thanks to a partnership between Riley and The Milk Bank in Indianapolis.

    Riley will now be an official donation site for carefully screened and approved donors, one of about 55 milk depots serving Indiana and parts of Illinois and Kentucky. That means IU Health team members can more easily donate breast milk to help NICU moms and fragile infants.

    Due to COVID-19 restrictions, the site initially will be open to IU Health and IU Health Physicians team members, as well as IU School of Medicine staff and current inpatient NICU moms, said Nicole Geist, clinical nurse manager on 9 East at Riley and a board member of The Milk Bank. Eventually, the plan is to open donations to the community.

    “This is helping us protect the supply of pasteurized donor human milk that we use so much of for our NICU population Downtown,” Geist said.

    Not only is mother’s milk easily digestible, it boosts immunity and improves the long-term health of infants by decreasing the risks for allergies, asthma, childhood leukemia, obesity, ear infections and type 2 diabetes. Moms who breastfeed are less likely to develop certain types of breast cancer, ovarian cancer and type 2 diabetes, according to the Office on Women’s Health within the U.S. Department of Health and Human Services.

    The Milk Bank was established to improve health outcomes for infants, particularly preemies whose moms may be unable to breastfeed. Up to 70% of mothers who have infants in the NICU are unable to provide enough milk for their baby, at least initially, despite lactation support.

    Geist, who also manages the Milk Lab at Riley, donated breast milk after the births of both of her children.

    “One ounce of approved donor milk (prepared in Riley’s Milk Lab or The Milk Bank) can provide up to three feedings for a fragile, premature baby,” she said.

    Still, it takes about 500 donors per year to meet the demand at Riley alone. That breaks down to 2,500 ounces per month on average, Geist said.

    Currently, donated milk is collected outside the fourth-floor NICU at Riley. The Riley Depot will be relocated to the Riley maternity tower when it opens later this year.

    Any mom who is an approved donor through The Milk Bank will eventually be able to drop off donated milk at Riley. The milk is analyzed at The Milk Bank, then blended with other moms’ milk to get a more uniform product, Geist said. Then it is pasteurized, bottled and frozen, and a sample is sent to a third party for testing before it is dispensed to hospitals or patients.

    Donor human milk reduces healthcare expenses in many ways, not the least of which is lowering the incidence of necrotizing enterocolitis (NEC) and other infections in preterm babies.

    “As we provide care for some of the most fragile babies in Indiana and beyond, Riley creates a lot of demand for pasteurized human donor milk,” Geist said. “This is a new opportunity for Riley to help The Milk Bank with their supply of something that is so vital to our community, as well as the mothers and babies we serve.”

    Approved donors may offer a one-time donation or more. Register at themilkbank.org.

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    https://www.rileychildrens.org/connections/born-at-24-weeks-her-baby-was-impossibly-small-but-look-at-him-now Born at 24 weeks, her baby was impossibly small, but look at him now 2021-04-13T16:58:00-04:00 2021-04-13T17:05:39-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Ashley Parker is a trained pediatric nurse, but on the day her son was born at just 24 weeks, she was a mom first and foremost.

    Little Jack Parker needed her to be just that, especially during the four months he spent in the NICU at Riley Hospital for Children at IU Health North.

    Parker works in the Heart Center at Riley in Downtown Indianapolis but lives in Fishers, so she had always intended to deliver her first-born at IU Health North Hospital in Carmel. She just never expected that day to come so early or amid a pandemic.

    A nurse at Riley since 2019, Parker previously worked as a registered dietitian at the same hospital for five years.

    “I loved my job as a dietitian. It was a good way to get into the hospital and get comfortable talking with families,” she said. “I would see the nurses working, and I was striving to know more about how to take care of these babies.”

    She went back to school to get her nursing degree and hopes one day to become a pediatric nurse practitioner.

    “I love talking with the families and bonding with them, and in this job I can do that more. Obviously, after having Jack, I feel like I’ve been able to connect better with these mothers who are going through the hardest time in their lives.”

    She knows how that feels, wondering if and when her baby would ever come home.

    Parker suffered a placental abruption, which occurs when the placenta separates from the inner wall of the uterus before birth. Placental abruption can deprive the baby of oxygen and nutrients and cause heavy bleeding in the mother. Sometimes the baby must be delivered early.

    Jack wasn’t waiting.

    Parker’s husband, Ben, rushed her to the hospital when she began suffering debilitating contractions. She was supposed to have an emergency C-section, but before the surgery could begin, she delivered Jack naturally, barely an hour after she arrived at IU North.

    Traumatic is how she describes the experience. The pain was intense, and the worry was indescribable.

    But the NICU team at North is “top-notch,” she said. “I knew immediately he was in good hands.”

    Jack was born Jan. 12, 2020, weighing 1 pound, 9 ounces. A miracle child at just 24 weeks gestation.

    Because his lungs weren’t fully developed, he was on a ventilator for several weeks, but he was weaned off successfully and never needed surgery. That might have required a transfer to Riley Downtown.

    “Obviously, I would have been very trusting in the care Downtown. I just knew the sicker babies are Downtown, so it was comforting to have him at North. If he’s here, things must be going well. And we’re right by home.”

    He came home May 7, 2020, just before Mother’s Day, and today, he is a busy 15-month-old (adjusted age 11 months) who is simply amazing, his mom says.

    “You wouldn’t know he was a preemie. He was taken off oxygen in January, so he’s been off oxygen and monitors for a few months.”

    As she talks, Jack squeals in the background. He is a busy little guy who pulls himself up to a stand and cruises as he holds onto furniture.

    “He’s thriving,” she said. “He says dada, baba and he’s starting to say mama.”

    Jack had an NG tube for six weeks when he came home because he failed a swallow study, but he’s a good eater now, evidenced by his chubby cheeks. He’s also a fantastic sleeper. A blessing, Parker says.

    “Ever since we brought him home from the NICU, he has slept so well. I think he’s giving us a break after the first few months of his life when he freaked us out.”

    She doesn’t mince words when she talks about those early days in the NICU.

    “I don’t even think I felt like he was my baby until maybe the last month of him being in the hospital, when we could actually do things for him,” Parker said. “In the beginning, I felt like, ‘Do I even belong here?’ ”

    While her nursing background helped her understand what doctors were talking about during morning rounds, she didn’t have experience with preemies. In the Heart Center at Riley, she said, they have NICU babies, but they’re big babies. It’s a different expertise.

    Parker is grateful for the noise and toys around her at home now, a far cry from the dark days in the NICU. As a nurse, she knew it was important that she took care of herself while the NICU team took care of Jack. It’s the same advice she gives to exhausted parents in the Heart Center.

    “It’s OK to go home, don’t feel the guilt,” she said. “I felt the guilt – why am I OK with going home? But when your baby is in the hospital for 116 days, you can’t set yourself up for being there every single night. You’re going to go crazy.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/a-mothers-love-torn-between-two-sons A mother’s love: Torn between two sons 2021-04-12T17:05:00-04:00 2021-05-20T08:20:45-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Samar Shohatee never dreamed that the day she gave birth to her second child in one hospital would be the same day her older son would be admitted to another hospital 50 miles away.

    And soon, the reason would be devastatingly clear. Cancer.

    Samar Shohatee and her son Owais Algaad smiling at each other

    The Bloomington mom had been trying to get answers for weeks after her 2-year-old, Owais Algaad, started complaining of pain in his leg following a fall at the playground. But she couldn’t have imagined what that tumble would lead to last October.

    Doctors at first eased her concerns, saying X-rays showed no broken bones and that her son likely suffered a mild sprain. Unfortunately, that was not the end of it.

    “He just kept getting worse. He went from limping to not being able to stand or sit up right,” she said. “At that time, I was eight months pregnant, but I knew something was not right.”

    When he lost his appetite and began complaining of pain in his side, she took him to the hospital, thinking it was his appendix. Scans showed nothing wrong with his appendix, so she took him home.

    It was Oct. 9, the day she was scheduled to deliver her second child with husband Salman Algaad via C-section that Owais’ condition worsened.

    “My husband said he needed to take him to Riley now. He was really sick; his legs were clenched together like a magnet.”

    BURKITT LYMPHOMA

    So while she was giving birth in Bloomington, her husband and son were at Riley Hospital for Children in Indianapolis, where Owais’ condition initially stumped doctors. It was several days later when a biopsy led to the shattering diagnosis – Burkitt lymphoma/leukemia, a fast-growing cancer that in Owais’ case was attacking his bones, kidneys, liver and other parts of his tiny body.

    Owais beginning treatment at Riley Children's Health

    Aggressive treatment was started immediately, but it was brutal for the little boy.

    “The first two months of Owais’ treatment, there are no words to describe it,” Shohatee said. “Mentally, physically, emotionally, I was destroyed.”

    Destroyed because her little boy was so sick she barely recognized him, and her newborn was being cared for miles away by her own parents.

    Initially, she told herself she was not going to chronicle his fight against the cancer, saying the memories would die with her.

    “I didn’t want him to relive the misery.”

    A smiling Owais wearing a Riley superhero outfit

    But along the way, she realized that sharing her family’s experience might help her son and others someday. So she took photos and short videos of her child at his sickest, adding to them as he fought through the worst of it.

    “I need him to see this when he grows up and tells me something is too hard,” she said. “I’ll say, ‘Look what you did as a child. Nothing in the world can stop you now.’ ”

    As she talks, she begins to cry. Sensing her pain, Owais cries nearby from his Riley bed. She comforts him and says, “I had to be the strong one through this. I can’t show my fears, my tears, my emotions. I was afraid that would make him weak and the doctors weak.”

    STRONG FAMILY

    One of her son’s favorite nurses, however, says strength runs in the family.

    Whitney Cherry first met Owais and his parents in November and soon became their primary nurse during her shifts on the oncology unit at Riley.

    Owais smiling with nurse Whitney Cherry

    “I’ve really enjoyed taking care of them. They are the most amazing family,” she said. “Owais got very sick and went through a lot of difficult obstacles, but his mom showed him how to be strong when he was being stubborn and not feeling good.”

    Owais in turn helped his mom focus on the light at the end of their fight, Cherry said. His big personality and smile endeared him to the nurses and therapists.

    “He always brings a little bag of candy with him at every admission and says he wants to give it to his silly nurses,” she laughed. “He’s been very resilient throughout this process.”

    Owais and Riley nurses that cared for him

    Shohatee, who spent most days with Owais while her parents continued to care for her infant son, had to be coaxed to take breaks. She is grateful to the Riley team who walked alongside her and her son during his treatment, recalling how nurse Rachael Harless would entertain Owais at night so his mom could get some sleep.

    They were happy to do it, Cherry said.

    “Having a newborn and turning around and having your other child diagnosed with cancer, that is traumatic,” she said. “They are the kindest people I think I’ve ever met. They are so generous and giving. They have shown true strength throughout this.”

    END OF CHEMO

    Owais, who marked his 3rd birthday at Riley in December, finished chemotherapy at the end of March and is in remission. He and his parents have been staying off and on at the Ronald McDonald House while he builds back his immunity, but he is back to his old self for the most part, Shohatee says.

    “He’s excited to be all done. He misses his nurses, but he says they can come visit him at his house.”

    She is looking forward to the day when they can all be a family again back home in Bloomington and her two sons can bond as brothers. At the same time, she believes their story can make a difference for others going through cancer, specifically Burkitt’s.

    Owais smiling with his "Hey Cancer! You Picked The Wrong Kid" t-shirt

    “I want to show them how Owais was and is now and give them hope. Close your eyes. Breathe. Be patient. Walk through it,” she said. “When I started all this, people told me it would be like a marathon with ups and downs, but nobody can fully understand it until you are really in it.”

    Even at this moment, she said, she may be sitting down but in her head she’s running. Constantly thinking, planning, and yes, worrying.

    That’s what parents do, of course. But Cherry says Owais could not have a better advocate in his mom.

    “Samar is such a good mom. She pushes the doctors and nurses to find answers, and that’s her job.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/nurses-poem-honors-those-who-died-from-covid-19 Nurse’s poem honors those who died from COVID-19 2021-04-11T14:56:00-04:00 2021-04-11T15:30:39-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    “Breathe.”

    Nurse Tiffany Smith breathes in and out slowly as she starts to read a poem she has just written about working in the COVID ICU during the winter surge.

    “Breathe. Up and down I watch your chest move, listening to the inhale and exhale of the machine.”

    “Breathe. I remind myself as I feel suffocated under layers of filters, fabric and rubber. Not nearly as suffocated as you must feel, I think, as I assess your numerous drains and tubes, checking to make sure they’re all doing their jobs as well as I hope to do mine for you.”

    Her voice is calm as she records herself, but her emotions are raw. She swallows back tears and steadies her gaze as she reads the words that poured out of her heart onto the pages of her journal only hours earlier.

    “Squeeze, I ask, and watch for the slightest movement of your fingers around mine. I hope you know there’s a human here with you. I hope you can feel the warmth and love in my gloved touch while all the while hoping you do not have any recollection or cognition of this time.”

    “Squeeze. I remind myself as I prepare your medications and your bath supplies. Squeeze out every bit of emotional, mental and physical strength I have. I feel empty, but I can’t be. You need me to keep going and I need you to keep going as well.”

    Smith is a Riley Hospital for Children resource nurse who was redeployed to IU Health Methodist Hospital last year to help care for COVID-positive patients. She and her Riley colleagues had talked about the emotional impact of their work during the pandemic, and on a Monday morning in March of this year, she decided to put it down on paper.

    “Blink. Open and close your eyes so that I may see into the soul of the person I care so deeply for. What is your family like? What is your career? Do you have any pets? What are your hobbies? Do you have a favorite music?”

    “Blink. I blink away tears as I speak to your family on the phone and then hold the tablet so you can FaceTime with them. Do you know they would be here if they could? Do you know as my gloved hand brushes your hair, bathes you and cares for you that I’m really just an extension of those who love you the most in this world?”

    The eight-year nurse, who lives on a five-acre horse farm with her husband, Elliott, and leads medical mission trips to Haiti, woke up a few weeks ago with a heaviness on her heart, as she recalled the patients she and her nursing family had lost during their time at Methodist.

    “It was more death than I’ve been exposed to in my entire career. They were heavy on my mind, and I wanted to write something to honor them.”

    The poem took her only 20 minutes to scrawl into her leather-bound journal. She recorded it and shared it with a few nurse friends, then posted it on Facebook after clearing it with her manager.

    “Turn. Turn to one side, then the other every two hours so you don’t get a bedsore. I can’t imagine how fatiguing it would be to be bothered every two hours as you try to rest and heal. I explain why and I hope you hear me.”

    “Turn. I turn the page of your Bible that sits on your bedside table as I read a chapter to you. What book is your favorite? What brings you the most peace? I hope I’ve selected well.”

    As a pediatric medical-surgical nurse by training, Smith said walking into an adult hospital to care for ICU patients wasn’t easy, but she doesn’t shy away from challenges. And her mission was the same.

    “I wanted to do best by my patients,” she said. “I have so much praise and admiration for the team at Methodist because they were so accommodating to us. I was never scared of getting COVID, but I was very much aware that I don’t know what I don’t know.”

    While she felt privileged to care for her adult patients, she said returning to Riley last month was like “going home again.”

    “It was kind of like that drink of cold water you need when you’re really thirsty.”

    “Dream. I hope as you lay here you dream of the happiest and most beautiful moments. I hope the beeping, alarming and poking fades away into birdsong, music and loving embraces.”

    “Dream. I also dreamed last night between my shifts. I dream of you and caring for you. I hear your beeping and alarming and hope that I’m taking that away from your dreams. I feel like I haven’t slept.”

    For three months, Smith worked at Methodist, taking turns staying with patients who were critically ill and could not have any family members present.

    “I would ask their family members things to help me get to know them. I sang songs. I read to them. It’s very sacred to be one of the last people that someone makes a connection with, and because of what was going on and the tragedy of it all, that moment wasn’t with their family,” she explains as she fights to keep her composure.

    “It’s an effort to acknowledge their life and the sacredness of being there for that part of it.”

    “Rest. I hope you get some good, peaceful rest until I come in again. I hope I gave you just enough blankets and that your pillows are propped just right.”

    “Rest. I sigh and look out your door to the rest of the unit as I take off the fabric, filters and rubber. I take one more loving, exhausted glance at you as I step out of your room and walk over to your neighbor’s.”

    Smith, who took speech in high school and has always loved writing, said she wrote “Breathe” initially for her inner circle of friends and family as a way to give voice to the pain she and other nurses experienced on behalf of their patients.

    It is her way of speaking to those who have lost loved ones, offering a glimpse into COVID units around the world.

    And if she could talk to them directly?

    “I would tell them that the nurses and respiratory therapists and techs and everyone tried their hardest to embody the love that they felt for their family member. One of the hardest things about death is our fear that a person is going to be forgotten. I want to reassure them that they have left an impact and a legacy on me.”

    “Breathe.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/occupational-therapists-give-patients-and-parents-a-boost Occupational therapists give patients and parents a boost 2021-04-08T16:09:00-04:00 2021-04-08T16:18:45-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Jackson Dewitt is a young man of few words, but he knows how to get his point across with a grin, a frown, even a kick here and there.

    Jackson (Jax for short), 13, is at Riley Hospital for Children for an appointment with two occupational therapists to get outfitted with a new wheelchair and a car positioning vest that allows him to sit upright in a vehicle properly restrained with a seatbelt.

    He and his identical twin, Matthew, were born three months prematurely, weighing about 2 pounds each. Both have cerebral palsy, which affects their ability to move and maintain balance and posture, though Matthew is higher functioning and is able to walk.

    Jax operates cognitively at the level of a 1- to 2-year-old and is unable to sit up independently or walk. So this visit to Riley’s adaptive equipment clinic in the Riley Outpatient Center is important for his quality of life.

    As occupational therapist Tony McGovern explains to the boy’s mom (Jennifer) and dad (Steve) how the positioning vest works, Jax fiddles with McGovern’s ID badge.

    “Want to try on the vest, bud?,” McGovern asks. “On,” says Jax, who is rocking two different-colored socks today.

    With that, Mom and Dad lift the 90-pound boy out of his wheelchair and onto the therapy table so McGovern can slip the vest on and demonstrate how it works.

    When McGovern asks him how it feels, he says, “Good.”

    The adaptive car seat is really not a seat at all, but it straps into a vehicle similar to a car seat.

    “This is for bigger kids who need some positioning support so they’re not falling over at every turn,” McGovern said. “It will help Jackson stay in the right spot in the vehicle and let the seatbelt do its job.”

    “Roundabouts and him are not a good fit,” agreed Jennifer, who lives in Hamilton County.

    Jax loves to ride in the car, and he also loves to kick the seat, his mom said.

    “The more he kicks, the more he slides down. This vest will help. It’s a game changer for parents.”

    That’s because parents typically have to lift their kids into the vehicle, and anything that makes that harder, or higher, presents a challenge.

    “When you have a 90-pound kiddo and you’re trying to get him in and out of the car, it’s awkward anyway,” she said. “With this, you don’t have to deal with lifting him up and forward like other car seats with the lip on the side because he’s sitting on the seat. Our backs don’t feel so good by the time our kids get to 13.”

    Once McGovern is finished demonstrating the positioning vest, occupational therapist Tiffany Stead moves in with a wheelchair trimmed in blue with the name “Jax” on the seat. The chair, which replaces one that Jax has outgrown, gives him more independence and a much better quality of life, Stead says.

    “You like your new wheels, Jax?,” she asks. He grins.

    While Stead would like to think this new chair is indestructible, she knows her patient, calling him a “rough rider.”

    “As he grows, we can modify and adjust it. With Jackson, we’ll probably be doing something within six months. He is hard on his equipment,” she said.

    Jennifer describes her son as a Houdini and “very determined” because he can figure out ways to break things. He has even tried to eat the headrests on his chair.

    Regardless, Jax’ wheelchair gives him more opportunities to interact in school, in therapy and socially, Stead said.

    “Without a chair, he’s limited to lying down because he has a hard time sitting up on his own. This just gives him more access,” she said.

    Jennifer echoes that point.

    “It’s one thing when you’re 30 pounds and a toddler. When you become 90 to 100 pounds and almost as tall as mom, it becomes a whole different story,” she said. “It’s quality of life for him. It’s quality of life for all of us.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/a-life-without-seizures-is-her-dream A life without seizures is her dream 2021-04-07T15:24:00-04:00 2021-05-25T11:59:59-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Addison Lynch looked like she could have done without all the attention.

    With a stocking cap on her head, the 16-year-old sat on an exam table at the Riley Outpatient Center in mid-March while a team of medical folks looked at scans of her brain on a small computer, and a photographer captured images as they talked.

    When Dr. Lisa Smith came into the room, she laughed and said, “She travels with her own paparazzi!”

    Dr. Smith, a neurologist at Riley Hospital for Children at IU Health, was there to examine Addison four weeks after the teen underwent surgery to implant a “pacemaker” in her brain.

    This appointment was to review data that the device recorded, indicating if and when Addison suffered an epileptic seizure. But that was just the beginning. The real point of the visit was to activate the stimulation part of the device so it not only recognizes seizures before they strike, but sends a signal to the brain to stop them in their tracks.

    Neurosurgeon Dr. Jeffrey Raskin implanted the therapeutic device, called a responsive neuro stimulator (RNS), with assist from a trial robot back in February. Electrodes in the brain attach to a battery pack that lives inside the skull. It can then recognize patterns of activity and head off potential seizures.

    Addison sits on the exam table for an brain examination

    The goal is to offer a therapy to reduce or eliminate her seizures that doesn’t require the heavy regimen of medications she has been taking.

    With Addison at this appointment is her mom, Lesley Watson, who has watched her daughter struggle with seizures for half of the young girl’s life. On this day, she is hopeful. She wants what her daughter wants – a future free from seizures and from heavy medication.

    “Heart-wrenching” is how Watson describes the feeling of waiting and watching for her daughter’s seizures. Since the RNS device was implanted in Addison’s skull, Watson has been logging the times when her daughter’s brain appears to switch off for 30 to 60 seconds at a time.

    “I would come in and notice she was out of it, and each time she said she was doing something or watching something but didn’t remember what,” Watson said.

    As Dr. Smith turned her attention to Addison, she had her perform a series of routine movements to check her balance, coordination and strength. Next she checked the incision in her head, which is hardly noticeable amid the teen’s long auburn hair.

    Addison works on brain activities

    “I’m actually really surprised my hair is growing back,” Addison told the doctor, adding that the wound itches but doesn’t hurt. In fact, she was taking only ibuprofen the day after she got home following surgery, her mom said.

    “What’s going to happen now is we’re going to program the device so it starts treating the seizures,” Dr. Smith said. “This little device in your head, when it sees a certain activity in the brain, it’s going to give a little zap to it so you don’t have these seizures.”

    It all sounds good to Addison, a Fishers sophomore, who says she can’t tell when one is coming on. That’s a problem because someday she would like to get her driver’s license so she can visit her grandpa in Florida.

    “I want to see her seizure-free for at least six months,” Dr. Smith said. “I think we can get to that point, then I’ll give her the all clear. But I think you need to take your neurologist to Florida with you,” she joked.

    She recognizes, of course, that for her patient, this therapy offers the promise of a better life.

    “She wants to drive, that’s her goal. And so that’s my goal to get her to drive,” Dr. Smith said. “With this device, we have the benefit of knowing when she’s seizure-free, and not just that she’s telling me she’s seizure-free.”

    Relying on parental reporting and patient reporting of seizures is less than ideal, she said.

    “Now, the device is watching her all the time and picking up seizures she doesn’t even know she’s having.”

    After the RNS was officially “turned on” via a computer, Dr. Raskin stopped in to have a look at his patient, eager to know that his work in surgery would pay off for this young girl.

    “We’re through the immediate post-surgical phase without any problems, but as a surgeon I don’t stop worrying until six months after the device is implanted,” he said. “As we move from sensing phase to sensing and stimulating phase, that’s really exciting. It will be better when we know that it is effective.”

    He and Dr. Smith will get updates periodically over the next three months before Addison returns for a follow-up appointment.

    “We’ll do the same thing to make sure the plan is working,” Dr. Smith said. “We should see a reduction in not just seizures but in long episodes of pre-seizure. We should be on the right track, and if not we’ll make adjustments.”

    Watson reports that everything is going smoothly three weeks after the brain pacemaker was turned on.

    “Addison is doing very well. She went back to school in person last week and so far the device is working.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/covid-vaccine-for-adolescents-looks-promising COVID vaccine for adolescents looks promising 2021-04-06T09:47:00-04:00 2021-04-06T16:42:58-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    The news that Pfizer’s COVID-19 vaccine has shown 100% efficacy in trials involving youth ages 12-15 is exciting for physicians, public health officials and parents.

    Dr. John Christenson, chief of clinical services for the Ryan White Center for Pediatric Disease and Global Health at Riley Hospital for Children, said he believes a lot of families will be relieved to hear the news.

    “A lot of parents have been calling and asking for something to protect their children, so this is news that many are going to welcome,” the infectious disease expert said. “A lot of teenagers have been kept out of school because of the fear of transmission, and many parents know that COVID in older children tends to be as bad as what is seen in adults.”

    Still to be determined is when the vaccine will be available for those in the 12- to 15-year-old age group, but he hopes and expects that it will receive emergency-use authorization by the CDC in time for the start of the next school year.

    “The vaccine showed remarkable results, and I hope that in next few months Pfizer will submit all the data and the FDA will approve it,” Dr. Christenson said.

    The two-shot Pfizer vaccine is currently available to those 16 and older. The company recently began testing the vaccine in kids as young as 5.

    “I think people were a little surprised that the vaccine was so highly effective in young people,” he said. “However, if you look at children, they don’t generally have the co-morbidities that adults do, like obesity and diabetes. For them to have a good immune response is not surprising.”

    WAITING FOR HER SHOT

    Next up after adolescents will be the younger crowd, kids like 9-year-old Lauren Isenhour. Her big brother, Adam, a 16-year-old cancer survivor, recently received his second dose of the Pfizer vaccine.

    “She’s definitely going to get it,” said Lauren’s mom, Alison. “As soon as they open it up, we’re signing her up. She can’t wait. She feels real left out that she’s the only one in the family who hasn’t gotten it.”

    Alison Isenhour, who works at IU Health Methodist Hospital, hopes everyone will choose to get vaccinated against COVID-19.

    “I know some won’t, but make informed decisions,” she pleaded. “Read, educate yourself, and use credible sources to make your decision.”

    It’s no surprise that Dr. Christenson makes the same case for vaccines. He acknowledges the enthusiasm the COVID vaccines have generated, particularly in the 60-and-older crowd. At the same time, there is a group of people who are hesitant, either because of concerns about safety or effectiveness.

    “Unfortunately, there is misinformation out there, with some suggesting this vaccine was rushed to the market,” he said. “People don’t understand that these vaccines and the development of this technology has been evolving over the last 20 years. It was not a rush job; it’s just that the amount of money available to do the trials was much higher because the federal government put a lot of money into it.”

    And what about people who refuse a vaccine because they don’t think COVID is a big problem?

    “That’s where education comes in,” Dr. Christenson said. “There are a lot of people who are sitting on the fence. They are looking for information, but they don’t trust the government. If they hear it from a source they trust like Riley, they tend to listen a little more than they do to the FDA or CDC.”

    Katie Wilson-Perez, whose two kids are 9 and 7, says they likely will get the vaccine when it becomes available to their age group, as long as their pediatrician or an infectious disease doctor at Riley recommends it for Sophia and Jonathin.

    “At first I was a little concerned, but I got it and I was fine,” she said. “With Jonathin’s health issues, I think it would be best for him to get it.”

    Jonathin nearly died three years ago when bacteria entered his body and caused necrotizing fasciitis, commonly known as flesh-eating disease, a rare but potentially deadly infection that spreads rapidly and results in the death of parts of the body’s soft tissue. His right leg was amputated at the knee.

    “I’m very worried about my kids getting the virus,” Wilson-Perez said, adding that her son’s illness was a wake-up call. “I’m not one of those people who thinks, ‘COVID can’t touch us, we’ll be fine.’ We never thought flesh-eating disease would happen to us.”

    A MATTER OF PUBLIC HEALTH

    Seeing how the deadly virus has been politicized over the past year disturbs Dr. Christenson, like it does most healthcare experts.

    “The most important thing to always emphasize is that there is a large number of people in the community who have not been vaccinated, so this is not the time to relax the use of masks or physical distancing,” the physician said last week. “The numbers of COVID cases in the state are going up, 12 to 13% in the last two weeks. I think we’re in the process of seeing another surge. How bad it will be we’ll have to see, but it’s coming.”

    Relying on people to exercise personal responsibility only goes so far, he said. If everyone is to be protected, everyone needs to be vaccinated, but some will choose not to get the shot. Meanwhile, other strategies like mask use and physical distancing continue to be effective, he said.

    Indiana Gov. Eric Holcomb has ended a statewide mandate on mask use, effective April 6, replacing it with a mask advisory. Individual municipalities, however, are free to maintain restrictions. Marion County, which includes the city of Indianapolis, will continue to require masks and have occupancy limits in restaurants and bars. Masks are still required in all IU Health facilities.

    Dr. Christenson said as a medical professional he has a responsibility to inform people, but he understands his limits.

    “There is only so much I can do.”

    Like everyone else, he would love to get back to pre-pandemic routines like eating out and traveling.

    “I haven’t been inside a restaurant other than to get takeout for over a year. And you’re talking about somebody who went to a restaurant three times a week at least. You won’t see me in a restaurant for a long time. And for somebody who traveled a lot, I haven’t gotten on a plane in over a year and I’m not planning to.”

    It’s not the time to let our guard down, he said, as he checks COVID infection rates daily from the Indiana Department of Health.

    Currently, about 20% of the U.S. population has been fully vaccinated against the virus that has killed well over half a million people in this country.

    ]]>
    https://www.rileychildrens.org/connections/chase-smith-kept-the-faith-until-the-end Chase Smith kept the faith until the end 2021-04-04T19:19:00-04:00 2021-05-21T15:53:16-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    “I have fought the good fight, I have finished the race, I have kept the faith.” (2 Timothy 4:7)

    On a day when Christians worldwide celebrate the resurrection of Jesus, one family bid a painful goodbye to their precious son/brother/husband, even while celebrating his entrance into heaven.

    Chase Montgomery Smith, 19, left this world on Easter morning after a six-year fight with Ewing’s sarcoma, a rare cancer that attacked just about every part of the athletic teen’s body.

    The champion swimmer, who once had dreams of competing in the Olympics, died at home, surrounded by his family, firm in his faith.

    Kelli Smith said her son – “her heart’s treasure” – loved Jesus, loved his family, loved swimming and loved life.

    “Anyone who knew him was blessed.”

    SIX-YEAR FIGHT

    With the help of his care team at Riley Hospital for Children at IU Health, including oncologist Dr. Melissa Bear, he fought back the cancer time and time again, beating it into submission from the age of 13.

    Chase smiling at Riley at age 13 and age 18
    Chase with Dr. Bear in 2015 (top) and 2021

    But a year ago this month, it was back. The cancer had metastasized, spreading to his brain, lung, shoulder, back and hip. There was little more that could be done medically to halt the tumors.

    Doctors gave Chase, then 18, three to five months to live. It was just weeks before he was to graduate from Indian Creek High School in Trafalgar, Indiana.

    In the time he had left, he knew he wanted to be with the love of his young life, Sadie Mills. With the help of their family and their community, the two 18-year-olds pulled together a wedding in four days.

    It took place April 29, 2020, in the driveway of Sadie’s home, the same place Chase had picked her up for their first date the year before, the same place they shared their first kiss.

    Sadie in her white dress. Chase in his blue tuxedo.

    “Sadie means the world to me,” Chase said last year. “I can’t put it into words.”

    Their wedding, and their love, captivated the nation, as their story was shared around the country.

    For the past year, the two have been nearly inseparable, with the exception of Sadie’s classes at IUPUI and her training as a champion diver.

    Sadie has been good for Chase, Kelli Smith said last week during a family trip to Topgolf in Fishers, Indiana. “Sadie always sees the very best, and brings the very best to the table. She focuses on the good.”

    ALL EYES ON CHASE

    Kelli sat alone in her car for a few minutes that Tuesday night at Topgolf, talking on the phone.

    It was a warm, beautiful evening, though storm clouds were forming in the distance. Nearby, her family was hitting golf balls and savoring the precious gift of time together.

    Chase gets ready to play golf

    All eyes were on Chase as he stood with perfect form, lined up his club and swung with all the strength he had. Around him were his dad, Brad; sister, Kaitlin; Sadie; and other loved ones who were treated to a night of golf from the local business.

    For Kelli, it was a chance to see her beautiful boy savor one more moment of joy, even if she didn’t know how much time he had left.

    “I never would have imagined that we would be this far into the year, but if there’s anybody that could have done it, it would be him,” Kelli said of her son. “He has survived sheerly on his will.”

    Still, she knew he was growing weary.

    “You can only take these poisons for so long before you’re just wiped out. I know how nasty this disease is and how it is so unrelenting.”

    FAITH GUIDES THEM

    Faith runs deep in the Smith family. While their most anguished moments may play out in private, they are comforted by the belief that God is with them always.

    “I feel blessed 100 percent,” Chase said in an interview last year while on his way to an appointment at Riley. “A lot of people in my situation might think they’re being cheated, but the way I look at it is if I have to go through all of this to point back to God, that’s what I have to do. For him to use me in this way is a blessing.”

    With Sadie by his side, they shared their story with local and national media to be a witness to their faith.

    “I genuinely feel that God put me on this Earth and gave me this platform to be able to share the love that he can spread, to share what’s possible with his love,” Chase said last year.

    He was faithful in that message. His spirit remained strong even as his body grew weak.

    The Topgolf outing was one of many afforded the Smith family by scores of supporters in their community and around the country. It came at just the right time.

    “If you had asked me before today if Chase would be feeling up to golf, I would have said no. Just the drive alone – it’s about 45 minutes – I was worried,” Kelli said. “But he was so excited to get here. He’s hit some balls; his natural athleticism has just carried over.”

    Later that night, she posted this on Facebook: “This boy, he is my heart! I just want to hold him close and put him in my pocket. I am so thankful for today. … I am thankful that Chase felt like getting out and swinging a club. I am thankful that I saw a candid smile on his face.”

    Within a day or two, Chase was slipping away. He was under hospice care at home.

    Chase embracing Sadie as they look out to the ocean

    He and Sadie were within weeks of celebrating their first anniversary. They hoped to honor the milestone the same way they did after their wedding – with a “familymoon” to Florida.

    They didn’t get to make that trip, but they soaked up all the joy they could from the days, weeks and months they had together.

    Even as Kelli desperately hoped to save her son, she finds peace in the belief that his life on Earth isn’t the end.

    “I can’t imagine how glorious it’s going to be when he is up in heaven with God and he doesn’t have a limp and he doesn’t have scars and he doesn’t have pain.”

    More About Chase:

    Newlyweds find joy amid heartache - When doctors told 18-year-old Chase Smith he had just months to live, he knew what he wanted to do first – marry the love of his life. Now the couple want to inspire others with their story of faith.

    Visit with college football champ Tim Tebow uplifts Riley patient - After scans showed that his cancer has spread, Chase Smith and his wife, Sadie, found comfort for a few hours during a trip to Florida. They played games, laughed and prayed with Heisman Trophy winner Tim Tebow.

    ]]>
    https://www.rileychildrens.org/connections/little-boys-pain-was-more-than-skin-deep Little boy’s pain was more than skin-deep 2021-03-31T17:14:00-04:00 2021-05-25T12:53:13-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Elias Otero used to wake up every day in pain. His liver was failing and his small body was covered with lesions from a rare disease. But the emotional pain went much deeper.

    The looks. The comments. The taunts from other kids, even adults.

    He was 2 when the growths on his skin started, but at 3 months old he became jaundiced, and doctors at Riley Hospital for Children at IU Health eventually diagnosed him with Alagille Syndrome, a genetic disorder that can affect the liver, heart and other parts of the body.

    One of the telltale signs for Elias, other than the yellowish tinge to his skin, were growths on his ears, hands and arms – xanthomata – essentially lumps of cholesterol that developed because the boy’s bile ducts didn’t form properly.

    Elias Otero laying on an exam table


    Dr. Jean Molleston, chief of the Pediatric Gastroenterology, Hepatology and Nutrition Division at Riley, said she has seen other patients with the condition, “but his were probably the worst I’ve seen.”

    Because of them, he had trouble writing, opening a water bottle or any seemingly routine task, and he became increasingly isolated. The older he got, the worse his condition got. While his liver continued to work at reduced capacity, he was suffering. When he was 10, Dr. Molleston recommended he be put on the transplant list for a donor liver.

    The surgery marked the beginning of a new life for Elias, now 12 and a year out from his transplant, performed by IU Health surgeon Dr. Richard (Shane) Mangus in February 2020, just weeks before COVID-19 shut down the country.

    “He was amazing,” Elias’ mom, Joy Otero, said of the surgeon. “We were so nervous, but he came in and talked to us and told us he had seen the (donor) liver and it was amazing and we could not pass this up.”

    After surgery, Dr. Mangus told the family that the transplanted liver slipped into Elias like it belonged there.

    It was the best possible news for Joy and her husband, Elias Sr. of Hobart, Indiana.

    “He’s doing so good,” Joy said of her son. “I cannot stress how important organ donation is. He’s not jaundiced, the deposits are fading on his skin, he’s not in pain, and he’s not getting teased. He’s like a totally different kid. Like he has a new will to live.”

    Imagine the relief that brings to his parents, who have watched their son suffer for so long, even hiding away in a hotel room on family vacations.

    “There’s so much more to Eli than people know,” said his father of his namesake.

    Now a sixth-grader, Elias is attending a hybrid schedule of virtual and in-person school, where he says he finally has friends. Before the transplant, his school principal would have to go to his classroom on the first day of every school year to explain that Elias has a skin disorder caused by liver disease. Eli waited in the principal’s office until the administrator had prepared the students.

    Still, he was teased and would come home crying to his mom that other kids wouldn’t play with him.

    Elias childhood photo


    Since the skin growths have begun to melt away post-transplant, her son is more outgoing, Joy said. For the first time, he is able to ride a bike, giving him a new feeling of freedom. He loves sports, football especially, but has been told by his doctors that he can’t play the game.

    So he does the next best thing. He watches the game with his dad, absorbing as much as he can. Now he has a new goal, his mom said.

    “The other day, he told me, ‘Mom, I love football and I know I can’t play it, but I can coach it. I can be a coach.’ ”

    Yes, you can, she told her son.

    On behalf of her son, Joy is most grateful to the Riley team that always made Elias feel comfortable and safe, whether he was going for blood work or an MRI or surgery.

    “They were so kind, and they always knew Eli by name,” she said, “and Dr. Molleston is a great GI. She is compassionate and honest.”

    Eli’s prognosis is very good, Dr. Molleston said, attributing the success to his parents, who were “amazing partners” in their son’s care, as well as the skilled surgeons who performed the transplant and the transplant coordinator. It is truly a team effort, she said.

    None of it would have been possible without the sacrifice of another family, she added.

    “Somebody made this transplant possible for him in a moment of terrible loss. They made that possible for Eli and you get to see his smiling face. His dad says he was ‘ignited’ by the transplant. That’s just beautiful.”

    Elias goes back to Riley for checkups every few months now, but he’s a different child than he used to be.

    “I’m just so happy as a parent,” Joy said. “When you see your child cry and in pain, it’s so hard. He was not living.”

    Now, she says, he’s ready to tackle the world. His parents recently got him Rollerblades because he was upset that his little sister could skate and he couldn’t. His first time out, well it wasn’t easy, his mom laughed. “It’s OK as long as you try,” she told him.

    He got the message.

    “I can try a lot of things now, Mom.”

    ]]>
    https://www.rileychildrens.org/connections/whether-from-around-the-world-or-right-next-door-riley-is-their-home-now Whether from around the world or right next door, Riley is their home now 2021-03-30T15:31:00-04:00 2021-05-20T16:03:53-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Drs. Lisa Smith, Seethal Jacob, Riad Lutfi and Samer Abu Sultaneh all came to Riley Hospital for Children at IU Health because they felt a special connection to the place and to the people.

    “Riley seems like home since I got here,” said Dr. Lutfi, service line director for the pediatric intensive care unit.

    It’s a sentiment shared by many of the team members at Riley, and in honor of National Doctors Day (March 30), we wanted to share the journeys of four physicians who represent the best of Riley.

    Dr. Smith wearing a tropical flower crown

    DR. LISA SMITH, NEUROLOGY

    Dr. Smith, a native of Hawaii, brings a military background to her work as a neurologist at the hospital, having served in the U.S. Army for nearly a decade, including being deployed to Saudi Arabia as a battalion surgeon with an air defense artillery unit.

    She had already completed a residency in pediatrics in Hawaii and been a pediatrician for several years while in the military before coming to Riley in 2001 to complete a second residency in neurology.

    “I had always wanted to do pediatric neurology, but I wanted to finish my military time,” she said. “I came to Riley because my husband (Peter) is from Indiana and I’d heard good things about neurology here at Riley and good things about the hospital from my military colleagues.”

    She interviewed, loved it and was accepted into residency, which she completed in 2004. From there, she needed to fulfill her commitment to the Army, so she was stationed in Germany for three years before returning to Riley for a fellowship in epilepsy in 2007. She has been here ever since.

    Her interest in neurology was personal. A mother of two, her first child suffered a seizure as a toddler and was diagnosed with tuberous sclerosis, a genetic condition known to cause epilepsy. Dr. Smith was still in medical school at the time, but that exposure to epilepsy eventually led her to Riley.

    She and her husband’s second child also was diagnosed with the disease. Both cases were relatively mild and controlled by medication until symptoms disappeared. Now, their oldest is completing a Ph.D. program in linguistics, and the youngest is a first-year medical student at Indiana University.

    While there are times when she wants to share her personal story with patients and parents as a means of hope, she knows that her family has been fortunate.

    “My kids are lucky. They have a mild case. The patients we see at Riley are very involved – lots of seizures, autism, developmental delays.”

    If anything though, she feels her personal experience has helped her understand better what parents are going through when they bring their child to Riley.

    “It’s scary, even as a med student, as a neurologist. This is your child. I get it when I give parents that diagnosis. It takes me back to when I got the diagnosis for my kids.”

    To decompress from the stresses of medicine and maintain a connection to her Hawaiian roots, Dr. Smith runs a Polynesian dance school in Indianapolis – teaching traditional Hula, Tahitian, Samoan and Maori dance.

    “That’s my haven,” she said. “After treating sick kids, I know on Saturdays I’m going to be in Hawaii (if only in her mind), dancing and relaxing.”

    Dr. Jacob wearing a mask for her photo

    DR. SEETHAL JACOB, HEMATOLOGY/ONCOLOGY

    Like a lot of physicians, Dr. Jacob found her way back to Riley after first completing her residency and serving as chief resident here. She left to do a fellowship in Pittsburgh with her husband, then both returned to Riley as faculty five years ago. Her husband is Dr. Jason Niehaus, neonatology.

    Coming out of fellowship, she said, “You’re like a little fledgling that needs a lot of support to move out of being a trainee into being a full-fledged attending. We really felt like Riley epitomized that supportive environment.”

    That was a huge drawing point for both.

    “Having been residents at Riley, we already knew what the Riley family was like,” Dr. Jacob said. “We knew what it meant to be a part of the faculty here, as a trainee here, and I think what surprised us when we came back was that there were so many faculty who were still here and wanted to be here because it’s where they felt fulfilled and where they felt they could make a difference.”

    Dr. Jacob, who leads Riley’s Pediatric Sickle Cell Program, said medicine was a natural draw for her because her father was a physician.

    “He was the first physician in his family, and I was able to grow up seeing him dedicate his life and his time to his patients. He showed me what it meant to be a scientist but at the same time serve others through medicine. He was really my first mentor in medicine.”

    In her time at Riley, the Chicago native who grew up in Dayton, Ohio, is most proud of expanding the hospital’s sickle cell program, advocating for patients locally and at the state and national level.

    “We’ve really created a multidisciplinary team that focuses not just on their medical care but on the whole person because this is a chronic disease that doesn’t just affect them, it affects their whole family.”

    She is passionate about research and incorporates that into her care, helping patients and families understand why research is important and what steps are put in place to ensure that it is safe and equitable and something they can trust.

    “Sickle cell patients for so long have been left out of the research world when you think about advancements in medicine and improvements in clinical care,” she said. “There’s been a drive to change that.”

    That push has led to a fairly robust sickle cell program that she hopes is “providing patients with the care they want and the care they certainly deserve.”

    Dr. Lutfi receiving a vaccine with a thumbs up

    DR. RIAD LUTFI, PEDIATRIC INTENSIVE CARE

    Dr. Lutfi, a native of Damascus, Syria, misses his home country but has found a second home in Indianapolis. Here, he and his wife, Melissa, a Riley nurse practitioner, are raising their 6-month-old son.

    Like many in Syria, he came to the U.S. in search of a better life.

    “Each has their own story, but my path was probably straighter,” he said. “My sister was in the U.S., so I had her guidance.”

    Dr. Lutfi did his pediatric residency at West Virginia University and his fellowship at Cincinnati Children’s, along with a one-year stint in the NICU in upstate New York, so he had time to familiarize himself with American culture before coming to Riley in 2012.

    Still, being 2,000 miles away from Syria is hard at times. And the war there has made it difficult to visit.

    “It can be broken at times, but it’s still home,” he said of his birthplace. “I think I have two homes now. Riley seems like home since I came here. It’s where I met my wife and built a family.”

    Indianapolis is also home to his parents and many close friends.

    On top of the skills he brings as a physician, Dr. Lutfi exudes a deep humility and sense of compassion. He considers himself a lifelong learner, he said, a trait he encourages in the medical students and residents he trains.

    “I know there’s too much to learn and every day coming here is not just to deliver care but also to improve myself,” said the PICU service line leader. “But most important is serving people, and kids especially. Not only feeling the joy, but you have to share some sadness with the family during difficult times when medicine cannot fix everything. There is a lot of compassion in this career, especially in peds and especially in pediatric critical care.”

    Dr. Lutfi believes it is important to remember that for every win he and his colleagues experience, there is often a loss.

    “We should celebrate the win and honor the loss. I think we have a lot more work to do to make things better for the next child.”

    The pandemic has halted the international heart mission trips to Jordan that Dr. Mark Turrentine leads, but Dr. Lutfi is eager to join again when travel can resume.

    “There are a lot of kids waiting, and we all look forward to going back.”

    Dr. Abu Sultaneh poses for a selfie

    DR. SAMER ABU SULTANEH, PEDIATRIC INTENSIVE CARE

    Like Dr. Lutfi, Dr. Abu Sultaneh came to Riley in 2012. Originally from Jordan, he recently became a U.S. citizen.

    After completing his fellowship at the Children’s Hospital of Wisconsin, he was looking for a position in a large hospital with the potential to help more kids and guide future medical professionals in their training.

    As a pediatric intensivist, associate professor of clinical pediatrics and associate director of the Pediatric Critical Care Fellowship Program, he does both. And as co-leader of the Pediatric Community Outreach Mobile Education initiative, he works to improve the quality of pediatric patient care around the state.

    As to why he chose medicine for a career, Dr. Abu Sultaneh said he was always interested in genes during high school and thought that gene therapy would be the way to cure many diseases.

    “I love pediatrics, trying to help kids who have many years to live. They are fighters. I like to help the sickest of them to get better and back to their normal lives with their families.”

    He has joined Dr. Lutfi and many others on Dr. Turrentine’s heart missions as a way of giving back to his home country of Jordan, and he works with medical students there to navigate the system to come to the United States if that is their goal.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/their-world-stops-moving-but-the-world-around-them-keeps-going “Their world stops moving, but the world around them keeps going” 2021-03-29T14:51:00-04:00 2021-05-25T15:51:48-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Social workers are involved in some of the most intimate, painful conversations that go on within the walls of Riley Hospital for Children at IU Health.

    Nowhere is that more evident than the emergency department, where kids with traumatic injuries sometimes don’t make it, despite desperate lifesaving attempts by emergency care teams.

    When a child dies in the ER, social worker Dory Fier is on the scene quickly to assist families who are left in shock by the sudden loss.

    “Nobody knows what to do and they shouldn’t have to,” Fier said. “It’s an experience nobody expects to have – in the emergency room especially.”

    As we mark social work month in March, we wanted to highlight the work Fier and her colleagues do every day. Not all of it is sad, of course, but loss is a fact of life. And Fier wanted to do more to help parents and caregivers who need support and guidance in those critical hours after a loss.

    She came up with the idea of a bereavement packet, filled with resources for parents and siblings.

    Social worker Fier

    “We work closely with families in end-of-life situations that come through the emergency department,” she said. “Most are traumatic situations that are unexpected. We might spend six or seven hours supporting them through this tragic time. It’s more like crisis intervention work that we do.”

    Rachel Rissot, a registered nurse and emergency department case manager, said while offering comfort and resources to grieving families is not new, having a team at the ready and an established protocol for supporting them is critical.

    “Thanks to Dory, the ER social work team now has a collection of resources for families grieving the loss of a child, Rissot said. “I think it’s been super important for our whole medical staff to know we have this resource during such a high-stress, devastating situation.”

    Fier or one of her colleagues will sit down with loved ones to go through the packet (available in English, Spanish, Burmese and Hakha Chin) when they’re ready – either the same day or later – to get advice on what to do next.

    “I decided to create this packet that has all this information to help parents, giving it to them so they could open it on their own time and access resources,” Fier said, “rather than scribbling down notes on a piece of paper they might lose.”

    Information on funeral homes, financial resources, support groups, therapy and sibling support is included, as well as a 24/7 pager number for the social worker on call. A grant will allow Fier to arrange for the purchase of the book “The Invisible String” to be part of the packet.

    “It’s a children’s book, but I really like it for adults too,” Fier said. “It’s very sweet.”

    Fier, who says working with grieving families is humbling, understands that people are absolutely broken after a loss.

    “Their world stops moving, but the world around them keeps going.”

    The ED work is hard because she doesn’t always get to see those parents again, but sometimes she does, and the experience stays with her.

    “A lot of these families have made a huge impact on me. Those are the ones I’ve stayed in touch with and continue to support. They’re just amazing – their resilience after the pain they’ve experienced,” she said.

    “Grief is such a horrible experience, so anything we can do at Riley to start this off in a more helpful way, especially when it’s so unexpected, we want to do.”

    In addition to the support the social work team offers, child life therapists put together memory boxes for parents, and further counseling is available through Riley’s Hope in Healing Bereavement Program.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/pint-sized-superhero-bonds-with-nurses Pint-sized superhero bonds with nurses 2021-03-28T14:36:00-04:00 2021-05-25T11:20:50-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Chelsea Kopelman says upfront her 3-year-old is “a wild child.”

    That’s how mom and son ended up in the emergency department at Riley Hospital for Children at IU Health North in Carmel recently.

    Crew and Chelsea in the ER

    Crew, wearing his favorite Spiderman sweatshirt, was channeling his inner superhero self while doing flips and tricks off the couch at home, his mom said. He lost his footing and hit the back of his head on the corner of a wall.

    “He had a pretty deep cut on his noggin,” said Chelsea, who also has a 6-month-old with her husband, Peter. “And it was pretty bloody.”

    Off they went to the nearest emergency room – IU Health North.

    “For kids’ injuries, I’ve heard that’s the place you want to go,” she said. “They took us immediately back, which was great.”

    That’s about the time the little guy got worried.

    “He was freaked out because at that point he realized something was wrong, that he was hurt,” she said.

    Team members on duty figured out right away that their young patient was a superhero fan. They didn’t have any Spiderman toys, but they brought in a Captain America toy to save the day, distracting Crew while nurses and a physician examined his head.

    “He is obsessed with superheroes, so he was in heaven,” Chelsea said.

    But that didn’t last long.

    Crew needed staples to the back of his head to close the gash, so the medical staff prepared to wrap a gauze bandage around his head to hold in some numbing cream.

    “He freaked out about that,” his mom said. “He didn’t want anybody touching him. They’re all gowned up and wearing masks, so it’s not like he can see smiling faces.”

    Crew wanted his mom to put on a bandage too, so she wrapped a piece of gauze around her head to calm him while waiting for the doctor to come back into the room to close the wound.

    Crew smiles with a thumbs up

    When the door opened, she and Crew couldn’t help but smile.

    “Five or six nurses came in, all with gauze bandages tied around their forehead,” Chelsea said. “He was so distracted and kind of in awe that he didn’t even really notice the staples going in.”

    The whole visit took 40 minutes.

    The next morning, Crew asked his mom if they could go back to the hospital just so he could get another toy. They didn’t go that day, but they did return 10 days later to get the staples out, and the IU Health North team gave him a Hot Wheels toy this time.

    Crew’s wound has healed, but he has a nice scar if he ever forgets that trip to the hospital. Meanwhile, he is as busy as ever, playing golf, baseball and basketball, riding his bike and motorized Jeep and, of course, practicing his Spidey skills.

    Riley pediatric emergency medicine physicians and nurses are available seven days a week in the IU Health North Emergency Department. The team is onsite from 2 to 11 p.m. daily (the busiest time for kids coming to the emergency department).

    A Riley pediatric hospitalist is also always available to help direct care. Ten pediatric emergency medicine physicians rotate at IU Health North, while also supporting healthcare colleagues in practice at Riley Hospital for Children in Downtown Indianapolis.

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    https://www.rileychildrens.org/connections/only-8-months-old-baby-adah-needs-a-transplant Only 8 months old, baby Adah needs a transplant 2021-03-25T08:43:00-04:00 2021-05-24T14:05:18-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Adah Maust doesn’t understand all the fuss being made about her.

    At 8 months old, she doesn’t know what a G-tube is or why her digestive system doesn’t work or why she is in line to get a transplant.

    So she stares wide-eyed at the doctors who are watching her, examining her, talking to her as she is propped up on an exam table by her mom, Jordan Maust, at the Riley Outpatient Clinic.

    Adah on the exam table at Riley Outpatient Clinic

    Adah was born last summer with a birth defect called omphalocele, which affects the wall of the abdomen. The infant’s intestines were protruding outside the belly. She also suffered a congenital anomaly to the intestines where there were multiple areas of stricture or narrowing and incomplete formation.

    “They told us at first it would be an easy fix,” Jordan Maust said of the team at the hospital where she delivered. “But they then realized she had a lot more issues.”

    The first two months of Adah’s life were difficult for her and her parents, Jordan and Ethan of Carmel. At times, they wondered if there was any hope. She underwent two surgeries, but neither was successful at repairing the damage, and she was left with a very small portion of intestines, not enough to do their job of digesting food and regulating the body’s water balance.

    SPECIALIZED CARE AT RILEY

    The young parents, who also have a 2-year-old daughter, transferred Adah to Riley Hospital for Children at IU Health, where she is under the care of Drs. Alan Ladd and Charles Vanderpool, co-directors of the intestinal rehabilitation center at Riley.

    Dr. Ladd examines Adah

    Their team assists with the complex care surrounding children with intestinal disabilities. In addition to surgery and gastroenterology, the clinic also incorporates specialized pharmacists, nutritionists and social work to help families with whatever they need.

    “We aim to optimize the functioning of their intestine so that they may hopefully lead independent lives, but some will require ultimate intestinal transplantation,” Dr. Ladd said.

    Dr. Ladd leads the surgical half of the team, responsible for central lines, G-tubes and intestinal procedures, while Dr. Vanderpool leads the pediatric GI side of care.

    Both physicians have been working to manage Adah’s care, ensuring that she gets proper nutrition through the tube that goes into her stomach. While originally hopeful that Adah’s digestive system could be salvaged, a “heroic” surgery at Riley last fall was not successful, Dr. Ladd said.

    “It’s damaged beyond repair,” he said, though they continue managing her care as they await the next step in her treatment.

    ON TRANSPLANT LIST

    Together with the physicians and with IU Health transplant surgeon Dr. Richard (Shane) Mangus, the family has decided to pursue a multivisceral transplant – involving stomach, liver, pancreas, small and large intestine – believing that will give her the best quality of life long term.

    So now, Adah’s parents wait for the call that could change their baby’s future. After the first few tumultuous months of her life, they have fallen into a comfortable rhythm caring for their baby girl, despite the challenges she faces.

    “Right now we’re doing pretty well because it feels normal at this point,” Jordan said. “The first two months of constant discovery of bad news was less than encouraging, but now that she’s home, I feel we have a different outlook on life and what it means to be a parent.”

    Wearing a shirt with the message Faith over Fear, Jordan said she and her husband believe children are a gift from God, so they accept each day as a precious gift.

    Adah is held up at Riley Outpatient Clinic

    Meanwhile, Adah is growing and developing as she should, her mom said. She’s finally on the growth curve – she weighs a little over 16 pounds – evidenced by her chunky thighs, Jordan said.

    That’s thanks to the full nutritional support provided her by way of IV nutrition, Dr. Ladd said, explaining that the Riley clinic treats kids from all over the state and surrounding states with minor to severe digestive and feeding issues.

    “We see the entire spectrum of cases,” he said.

    Not all require IV nutrition like Adah, but the intestinal rehabilitation center team works together to optimize feeding plans for these kids, oversee the nutrition they get at home and follow them in clinic to make sure they are growing appropriately.

    “There are plenty of kids that might be on IV nutrition their whole life, but they’re eating enough and doing well enough that it’s OK,” Dr. Ladd said. “She’s one of the neat ones that we’ve been able to support perfectly, but we know for her lifetime she needs a transplant. For our kids, that’s not a planned pathway; it’s only for the ones where we can’t intervene.”

    UNDER ADAH’S SPELL

    During a clinic visit earlier this month, Adah earned a good report from both doctors, who were pleased with her liver and kidney function, as well as her iron levels, urine output and overall growth.

    When they walked into the exam room, they were charmed by Adah’s watchful gaze.

    “She’s doing so well,” Dr. Vanderpool exclaimed, noting how much hair she has. “Hi sweetie!”

    Adah lay patiently, enjoying her pacifier, while he reviewed her progress with Jordan and Dr. Ladd.

    The crying began a few minutes later after Jordan asked Dr. Ladd to look at her baby’s G-tube.

    “She’s having trouble with vomiting, and it clogs up a lot,” she told the doctor.

    Dr. Ladd opted to upsize her G-tube a bit to drain her stomach better, thus reducing the episodes of vomiting.

    “I’m sorry,” he told Adah, finishing the brief procedure in a matter of seconds. “That should help.”

    As Jordan finished dressing Adah and put a white bow back in her baby’s dark hair, she thanked the doctors for their care and left for home, knowing that the call for transplant surgery could come at any time.

    This is the calm before yet another storm, but her faith grounds her.

    “We’re not promised our kids for any period of time, or that they’re going to get married and have their own kids,” she said. “We got more than we thought we’d get with Adah. Just looking at life like that has been a huge weight off of us. So now we’re just living and enjoying it and having a good time.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/this-girls-best-friend-is-her-teddy-bear-pup This girl’s best friend is her teddy bear pup 2021-03-24T09:22:00-04:00 2021-03-24T19:45:04-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    It’s pretty hard to say no to a little girl with cancer. But for two years, that’s what Emily Hardy had to do when her daughter asked for a puppy.

    Every time Nyla Evans went in for an appointment with Riley Hospital for Children oncologist Dr. Allison Yancey, she asked the same question: “Now can I get a dog?”

    Dr. Yancey told her it was not a good idea to add a new animal to the household when her immune system was so weak. After about six months, she told her she could get a pet, but it would have to be a fish.

    Nyla got that fish but never let go of the idea of getting a dog.

    Finally, the 10-year-old’s persistence paid off. In November, “Ny” (her mom’s nickname for her) welcomed a cuddly, playful pup named Ty into her arms. Ny and Ty have become best friends.

    Nyla was just 6½ when she was diagnosed with acute lymphoblastic leukemia. She spent a lot of time in the hospital, and after a visit by one of Riley’s therapy dogs, she started asking for a puppy of her own.

    After 2½ years of treatment, Nyla and her mom started talking about what kind of wish she might like granted by the Make-A-Wish Foundation.

    “We talked about different things she could do with her wish, places she could go, but she said if we go someplace for a week, she would probably forget that week at some point,” Hardy recalled.

    “But if I get a dog, I’m gonna have that dog for a very long time,” Nyla told her mom. “I’d rather get a wish for something that will last for a long time.”

    Once Nyla gets an idea in her head, it’s hard to shake it, Hardy said of her headstrong daughter. And even though mom was not wild about the idea of welcoming a four-legged pet into the household, she was not going to tell her daughter no again.

    “When we were in the middle of treatment, it seemed like it was never going to end,” Hardy said. “I’m not particularly an animal person, but she deserved it. She never complained through the treatments, hospital stays, missing school … she just accepted it and did whatever she needed to do. So she inspired me to accept having a dog.”

    The family worked with Make-A-Wish, who partners with a company that specializes in small-breed puppies. Nyla actually picked her pup from the company’s website, but it wasn’t an easy decision. She originally had a list of 18 dogs she liked. When Ty was 8 weeks old, he was flown to Indianapolis, and the family picked him up at the airport.

    Ty is what’s called a teddy bear dog – a mix of Bichon Frise and Shih Tzu bred to be cuddly, playful and good with kids.

    “He has fit right in since day one,” Hardy said, noting that when they went to pick him up from the cargo area at the airport, he headed straight toward Nyla. The two have been inseparable since.

    While Ty doesn’t sleep in Ny’s bed, he does sleep underneath, and that seems to calm the fourth-grader’s anxieties.

    “Even with him under the bed, if he hears something, he barks and he sounds a lot bigger than he is,” Hardy laughed. “He helps her feel safe and protected.”

    Currently, there are 550 wishes on hold in the Indiana, Ohio and Kentucky Make-A-Wish region due to the COVID-19 crisis. While these are mostly travel-related or involve large gatherings, other wishes – like Nyla’s – are going forward.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/young-spiderman-fan-goes-home-after-mis-c-treatment Young Spiderman fan goes home after MIS-C treatment 2021-03-23T08:45:00-04:00 2021-03-23T09:06:46-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Nathan Miranda didn’t realize it, but he charmed the socks off his care team at Riley Hospital for Children.

    Nurses, therapists, physicians and others gathered to celebrate the 3-year-old’s discharge from Riley last week after nearly three weeks of treatment for MIS-C (multisystem inflammatory syndrome in children).

    It was a boisterous farewell as he and his dad, Gerardo, walked down the hallway from his room on 7 West, but Nathan took all the commotion in stride, smiling shyly for photos with occupational therapist Kimberly Voelker and while riding in a Riley wagon.

    Nathan came to Riley at about 2 a.m. on Feb. 28, after treatment at another hospital was unsuccessful at alleviating his symptoms, which included a belly ache, swelling and a high fever. The next two weeks were a blur as Gerardo and Sagrario Miranda feared for their little boy’s life.

    MIS-C seems to be the body’s exaggerated response to a prior exposure to infection, specifically COVID-19. It strikes adolescents most often. Though treatment with IVIG (immunoglobulin) and steroids is typically successful, there is no single diagnostic test for the illness, meaning doctors must first rule out other possible causes.

    In mid-May, the CDC issued a health alert in the U.S. about this new condition impacting children, who began coming into the hospital about four weeks after the peak of COVID surges with what looked like shock or sepsis.

    The common denominator in their bloodwork is inflammation, along with evidence of past COVID infection, whether based on antibodies or exposure history. Additionally, two or more organs are typically affected. Often, that could be the heart, GI system, kidneys and/or skin.

    “It was the scariest thing we had to go through in our lives,” Gerardo said. “He would get better, then something would happen and he would get worse. It was like the doctors said – one step forward, two steps back.”

    By Saturday, March 13, Nathan was on the road to recovery. That meant team members might see him wheeling around the unit on a trike as part of his therapy, a sight guaranteed to make people smile.

    “Spending time with Nathan is definitely a bright spot in my day,” said child life specialist Taylor Krile. “When I walk into his room, I’m always greeted by a big smile ... and a lot of Spiderman toys! It's been a joy to watch his personality shine through these past few weeks.”

    Anna Busald, a nurse on 7W, said the little boy was one of the sickest kids on the unit for several days. Not surprisingly, he was quiet and sometimes tearful because he wasn’t feeling well, but that changed in time.

    “As he’s felt better, he has really shown us his sweet and goofy personality,” Busald said. “We have loved watching him ride his tricycle through the hallway. While we will miss seeing him and hearing his giggle, we are so happy he gets to go home after almost three weeks on 7 West.”

    Even without the Spiderman light spinner the team gave him, Nathan was a bright light on the unit, just as he is at home. His dad is grateful for the care his son received and for the farewell fun.

    “It was a nice goodbye,” he said.

    Photos provided by the family and Taylor Krile, child life specialist

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    https://www.rileychildrens.org/connections/young-athlete-hopes-to-get-back-in-the-game-after-rehab-at-riley Young athlete hopes to get back in the game after rehab at Riley 2021-03-21T12:07:00-04:00 2021-03-21T12:37:50-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Kendall Eberly loves basketball, volleyball, tennis and cheerleading. She was looking forward to participating in all of these activities at Fountain Central High School in Veedersburg, Indiana, until complications from exposure to COVID-19 threatened her life.

    The 14-year-old high school freshman tested positive for COVID on Jan. 19 and completed her 10-day quarantine without experiencing any symptoms. Soon, however, she developed encephalitis and spent several days in the hospital.

    It was a few days later at home when she started complaining of pain in her back, then tingling in her legs. Within two days, she was unable to walk.

    Back to the hospital she went for treatment of transverse myelitis, an inflammation of the spinal cord typically caused by a viral, bacterial or fungal infection. Recovery can take months or years in some cases.

    Kendall was so weak she needed intense rehab to regain her strength, stamina and confidence, so her parents transferred her to Riley Hospital for Children’s inpatient rehab unit.

    For two weeks, she worked with occupational therapist Kelly Salter, physical therapist Emily Williams, student therapist Samantha Ausnus and others to regain her mobility and independence.

    The results have been astounding, says her father, Jason Eberly.

    “If you would have told me three weeks ago that she would be doing what she’s doing today, I would have said you were crazy,” Eberly said as he watched his daughter dribble and pass a basketball and play a little volleyball during an outdoor therapy session last week at Riley.

    “To see her walking on her toes right there is crazy.”

    It was two days before she was to be discharged from Riley, and she couldn’t wait to get home to see her friends and family. While her school and community are small, the support from both has been huge, her dad said. A Facebook page has kept followers updated on her progress.

    Kendall and her dad acknowledge that her spirits were low when she first arrived at Riley because no one knew for sure what to expect.

    Kendall lost her mom, Kim, in 2019, but her stepmom, Amanda, has been active in her recovery, alongside Kendall’s dad.

    Together, they fought through the darkness of those early days and reminded themselves to celebrate baby steps – small victories along the way.

    “I always tell her to find the good in something,” Jason Eberly said.

    The therapists are good, Kendall said with a smile. “They work me hard.”

    “It’s a tight schedule here,” her dad agreed, “but it really impressed me the way the therapists work with them according to their interests. OT and PT worked together so great.”

    Williams said Kendall’s progress has been nothing short of amazing.

    “From where we started to where we are now, it’s awesome,” the physical therapist said. “She’s a hard worker; we call her the Energizer Bunny. We have to remind her to take breaks.”

    Kendall is scheduled to return to school after spring break. She won’t be able to play tennis this year for school, but she will manage the team, so she will stay involved.

    She will continue outpatient rehab closer to home and hopes to be able to participate in some summer workouts for basketball, something that didn’t seem possible just a few weeks ago.

    “I have to give kudos to this group here at Riley,” Jason Eberly said. “They are top-notch.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/nicu-nerd-soaks-up-knowledge-and-experience “NICU nerd” soaks up knowledge and experience 2021-03-19T10:47:00-04:00 2021-03-19T11:00:48-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Brittany Kyle calls herself a “huge NICU nerd.” So much so that she has earned three specialized nursing certifications in NICU care.

    What better time to recognize her than Certified Nurses Day (March 19)?

    Kyle, among nurses identified by the Nursing Professional Development team at Riley Hospital for Children, spent the first six years of her nursing career in the NICU at IU Health Ball Memorial Hospital, but opted to move down to Riley in December to gain more experience caring for the most fragile babies.

    “I loved my NICU at Ball and all of my co-workers there, but this has really been excellent,” she said about her Riley experience. “Every day I get to take care of babies with conditions that I have learned about but haven’t seen previously, so it’s really good. It is fulfilling my need for knowledge.”

    A mother of two, Kyle wasn’t always intent on being a nurse. In fact, she took a rather circuitous path to her current profession – trying on different majors over several years, including global studies, early childhood education and medical assistant.

    “Meandering” is how she describes her journey into nursing, but once she found it she grabbed hold and wouldn’t let go.

    And the NICU was the only place she wanted to be. Hungry for knowledge and experience, she has soaked up every opportunity for both – burying herself in textbooks to earn her certifications in neonatal intensive care, neonatal neuro intensive care, and care of extremely low birth weight neonates.

    She is involved in professional organizations available to neonatal nurses and does peer review for national educational journal articles.

    In fact, on the day we talked, she had a peer review she needed to finish for an article on advances in neonatal care. And this was her off day. She spends quite a bit of her time away from Riley immersed in professional growth activities, including co-chairing Riley’s NICU Professional Practice Council and participating in the Distinguished Nurse Excellence Program.

    Last year, when COVID-19 first began its assault on the United States, Kyle was anxious and uneasy like the rest of her colleagues. She wrote an essay on Facebook that was shared more than 13,000 times. Below are portions of that March 31, 2020 post:

    “I am a NICU nurse and, as such, I am not on the front lines of this pandemic (yet). … I feel guilty for not being on the front lines. I feel guilt, and relief, and then even more guilt for feeling relief. But I also feel fear. It is always present, always looming. … I fear that first patient. I fear we won’t know how to help. I fear we might not even recognize it before it’s too late.

    “I fear what this might mean for our most vulnerable patients – the patients born so early and so frail, with no immune system to speak of and already fighting the greatest battle of their lives. I also fear the added trauma my patients will experience by having their earliest days, weeks and months of life with caregivers whose faces are half covered. … I fear that they will feel and embody the pervasive anxiety that is felt by every healthcare worker.

    “Stay home. Stop the spread. The babies I take care of fight so hard every day. Do your part in keeping them from having to fight even harder.”

    Earlier this month, she was among healthcare professionals from around the world who spoke at the United Kingdom’s virtual Neonatal Nurse Association Conference on the impact of COVID-19.

    While she may one day decide to pursue an advanced degree, Kyle is happy to be at the bedside now, caring for Riley’s tiniest patients and learning as much as she can.

    When she thinks about the roundabout way she came to nursing, she recalls a story she heard about her grandmother – a nurse – at the older woman’s funeral.

    “When she was a child, she entered the county fair for flower arranging. She spent hours putting together this perfect arrangement, put it in the basket of her bike and started riding to the fair. She hit a pothole, the flowers go flying, she goes flying and busts her knee. But she got up, dusted herself off, gathered her flowers, went to the fair and won the blue ribbon,” as the story goes.

    “I love that metaphor for life,” Kyle said. “You hit all the potholes, you face lots of detours, but you keep going.”

    Melissa Hollar, nursing professional development specialist with the Riley Maternity Center OB ICU, said there are multiple benefits to having nursing specialty certifications:

    Certified nurses have a positive impact on patient care and patient safety; employing certified nurses validates to patients and families that nursing staff have obtained a high level of experience, knowledge and skills; a hospital staffed by certified nurses in turn attracts more qualified nurses, she said.

    For the nurse, obtaining certification provides:

    A personal sense of accomplishment; recognition of expertise; increased confidence in clinical skills; enhanced collaboration with members of the healthcare team; potential for advancement; evidence of professional growth; national validation of specialized expertise; and greater job satisfaction.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/kids-with-cystic-fibrosis-escape-worst-of-covid Kids with cystic fibrosis escape worst of COVID 2021-03-14T11:31:00-04:00 2021-11-10T11:28:17-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Eight-year-old Zarrien Tingey is used to spending weeks in the hospital every year.

    As a child with cystic fibrosis, a hereditary disease that clogs up the lungs and digestive system, visits to Riley Hospital for Children to treat respiratory infections are a given.

    But for the past year – the year of COVID-19 – Zarrien has not spent a single night in the hospital.

    Wolfe-Tingey Family Photo

    A disease that sparked so much anxiety in already anxious parents, COVID has been a bit of a blessing for one family, said Zarrien’s mom, Christine Wolfe-Tingey.

    It didn’t start out that way, said the mother of three who lives in Indianapolis with her boys and husband, James.

    “I was very freaked out at first,” she acknowledged. “I took him out of school two weeks before school went virtual.”

    He’s been home ever since, along with his older brothers, all doing online school from the safety of their “bubble.”

    The truth is, she said, “he’s never been healthier.”

    Over his life, he’s had more than 25 hospitalizations, usually for up to two weeks at a time. Most were CF-related, though a couple were for asthma. On average he gets about six to eight antibiotics a year.

    Zarrien’s last hospitalization was in February of 2020, and he has taken just one antibiotic in the past year – in August when he had a little bit of a cough.

    “OUR PATIENTS LOCKED DOWN EARLY”

    Dr. James Chmiel, chief of pediatric pulmonology, allergy and sleep medicine at Riley, said when he and his colleagues across the country initially saw the signs of a mysterious coronavirus racing across the globe, they were frightened for their patients.

    “We were very worried initially,” he said. “During H1N1 (in 2009), a lot of CF patients were hospitalized, and a lot of patients across the country died. We haven’t seen that with COVID. In fact, we’ve had very few patients get infected. And not only did we not see a lot of COVID, we didn’t see a lot of RSV or influenza.”

    Zarrien playing outside

    He believes that’s due to pre-emptive precautions taken by parents and patients early last year. CF patients are already accustomed to social distancing and mask-wearing in public. COVID introduced the world to what they had already been practicing.

    “These families are medically savvy and are used to isolating,” Dr. Chmiel said. “Our patients locked down early.”

    The COVID infectivity rate is lower for CF patients than the general population, and the number of hospitalizations due to COVID in this population is lower as well, he said. That may be attributed in part to the fact that CF patients are generally younger (average life expectancy today for someone with the disease is mid-40s), but there might also be some biological reasons as yet undetermined. Research into COVID and its impact on CF patients is underway now.

    Wolfe-Tingey said before the coronavirus that causes COVID-19 hit Central Indiana, Zarrien was going to school regularly. If he was in a class with a child who was sniffling or coughing, he knew he could ask to be moved away from that person. When flu season came around, he would wear his mask all day.

    Zarrien walks his dog in their Indianapolis backyard

    Now a third-grader, Zarrien loves virtual school, his mom said, because he still gets to see his classmates but they don’t have to see her setting up his feeds for the G-tube he uses for nourishment. He can just turn off the camera on his computer. If he has a problem with his G-tube or his CF, he doesn’t have to walk down to the nurse’s office at school with all eyes on him.

    And if he wants to get up and give his mom a quick hug, he can do that too.

    MENTAL HEALTH CRISIS

    Zarrien’s life has not been easy, and the stress of caring for a child with a serious illness has taken a toll on the family, particularly his mom, who is upfront about her struggle with anxiety and depression.

    “I work in layers – like an ogre,” she said, a reference to Shrek. “The top couple of layers are OK – we’re doing everything we can, we take precautions, we have our faith if anything does happen. But there is this deep-down anxiety where sometimes I can’t even catch my breath. There are just those days where all of a sudden I can’t breathe.”

    She sees a therapist who has helped her learn to stop and assess when she feels the panic rising.

    “I have to dig down and think about what happened that triggered this,” she said. “Sometimes it’s someone delivering groceries without a mask on and that will freak me out. Maybe not always on the outside, but on the inside.”

    Zarrien and his mother embrace each other

    She talks freely about mental health because she knows she is not the only parent who struggles with sometimes paralyzing anxiety.

    When Zarrien was 1, he started vomiting frequently and couldn’t keep any food in his stomach. His physical growth was affected, while Wolfe-Tingey’s mental health suffered.

    “Watching your child vomit three to four times a day is traumatizing. It got to the point where I was sleeping with one ear open. Usually at 2 or 4 in the morning it would happen because he was on a night feed through his G-tube.”

    Multiple adjustments were made to alleviate the vomiting, but it continued off and on for two years, she said. In that time, Wolfe-Tingey slipped into a deep depression and while Zarrien was being treated at Riley, she sought help from a hospital social worker, who connected her with mental health professionals.

    After intensive outpatient therapy several times a week for three months, Wolfe-Tingey came through the worst of the darkness, but she continues to see a therapist. She calls her husband her champion and is grateful that they were able to get nursing help two days a week to assist with Zarrien’s care.

    TAKING TIME FOR HERSELF

    She appreciates the importance of self-care and finds that making art feeds her spirit.

    Asked how she’s coping now, Wolfe-Tingey didn’t hesitate in her reply.

    “A million times better. I have a great therapist. She has taught me to simplify, she has taught me to not be co-dependent, and she has taught me to take care of myself.”

    Dr. Chmiel said when he began treating patients with CF in the mid-1990s, he and his colleagues around the globe were so focused on trying to keep patients alive, they often missed the signs of anxiety and depression in patients and parents. Now, mental health screenings are offered.

    With a pandemic layered on top of their child’s already fragile health situation, it’s no wonder parents found themselves braced for impact last year.

    “If you take it from the parents’ perspective, they’re just waiting for the other shoe to drop,” Dr. Chmiel said. “March becomes April, April becomes May, numbers are spiking and you’re stuck at home, thinking every day, ‘please don’t get infected.’ Of course in front of the child you’re going to put on a brave front, but you can imagine what toll this takes on an individual and a whole family.”

    Despite signs that life is slowly beginning to return to normal, Wolfe-Tingey is in no hurry to jump back into life as it looked pre-pandemic.

    “I pretty much feel like we are going to be hunkered down for at least another year. I think Zarrien is content to stay this way.”

    He said as much the other day when he told her this: “I’m gonna try for two years out of the hospital.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/a-great-leader-a-great-clinician-a-rising-star “A great leader, a great clinician, a rising star” 2021-03-11T16:03:00-05:00 2021-05-25T16:09:38-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    From the time he was a little boy, Kamal Abulebda wanted to be able to take care of his family. If they had aches and pains, he wanted to be the one to answer their questions and make them better.

    In Syria, where he was raised, there were engineers and other professionals represented in his extended family, but there was no one in the medical field. He decided to be the first.

    “As a child, I always wanted to be that person who can actually help people in my family to start with, then maybe help my neighbors, then my city or my country,” he said. “Now, I accomplished that goal I had in my mind 30 years ago.”

    Dr. Abulebda is a critical care physician in the PICU at Riley Hospital for Children at IU Health. He is an associate professor of clinical pediatrics, medical director of Pediatric Sedation Service, and he oversees simulation service.

    And now he is being honored as one of Indy’s Best and Brightest, a who’s who of accomplished professionals in 10 different fields who have made significant contributions to the community before the age of 40. Junior Achievement created the event, which this year is virtual, to recognize the next generation of leaders who will serve as role models for JA students and youth in the community.

    At 39, the Riley physician jokes that he got in under the wire this year as a finalist in the competition. He was nominated by other physicians, who highlighted his work in pediatric simulation, sedation and community outreach.

    MEDICAL MISSION TRIPS

    Dr. Abulebda joined Riley seven years ago after completing his residency at Louisiana State University Health Science Center and a fellowship at Cincinnati Children’s Hospital.

    Other than a couple of uncles who live in the United States, Dr. Abulebda has no family here. After finishing medical school at the University of Aleppo in Syria in 2008, he moved to the U.S., and not long after that, his family moved to Dubai to escape war in their home country.

    The civil war in Syria, which has killed upwards of 400,000 people, continues today. Because of the unrest, Dr. Abulebda has not been able to return home, but he has furthered his commitment to taking care of his countrymen by volunteering for medical mission trips organized by Riley cardiothoracic surgeon Dr. Mark Turrentine.

    Dr. Turrentine has made multiple trips to Amman, Jordan over the years, where he and his Riley colleagues, including Dr. Abulebda, have treated many Syrian children with heart conditions. Those medical trips have been on hold for the past year due to the pandemic, a fact that weighs heavily on all involved.

    “I’m very said that I’m not able to get back to Syria to do what I wanted to do there. I always have in my mind to go back to Syria and provide care,” Dr. Abulebda said.

    That’s why the medical trips are so important. More than half of the pediatric patients he and his colleagues have treated in Jordan are Syrian or Syrian refugees, he said.

    “Luckily, through the cardiovascular surgery team we are able to find alternative channels to help Syrian kids, and it’s meant a lot to us,” he said of himself and two Syrian colleagues, Dr. Riad Lutfi and Dr. Mouhammad Yabrodi.

    “Those trips are a way for us to feel like we are contributing to healthcare worldwide, helping kids who are desperate.”

    OUTREACH PROGRAM

    Dr. Lutfi, service line director for the PICU, first met Dr. Abulebda when both were fellows at Cincinnati Children’s nearly a decade ago. He describes his colleague as “a great leader, a great clinician and a rising star.”

    “He has been leading our sedation services with great success. He has taught a lot of our fellows, and he’s very caring,” Dr. Lutfi said, adding that he believes Dr. Abulebda has surpassed him in many areas in which Dr. Lutfi trained him. “There is no more joy for me than seeing him be better than me in all of those instances.”

    With his solid clinical training and extra training in simulation, he was a big part of establishing an outreach program at Riley to help in the care of children around the state, Dr. Lutfi said.

    He helped establish the pediatric procedural sedation protocol at Riley and expanded sedation service to include pediatric patients throughout the hospital. He is a member of the Indiana Emergency Medical Service for Children Facility Quality Improvement Project designed to improve pediatric emergency readiness in the state.

    As a leader of the Pediatric Community Outreach Mobile Education program, he and a multidisciplinary team of pediatric critical care physicians, emergency physicians and critical care transport providers have helped improve the care provided to sick and injured children in emergency departments around the state and country by providing simulation training and education.

    Dr. Abulebda says the success of Riley’s outreach program, and in fact his nomination to Indy’s Best and Brightest, are a testament to his colleagues and made possible by the support of Riley and IU Health leadership.

    “It’s very exciting for sure, very rewarding,” he said. “The mission and the vision of this team is to connect with all the community providers in the state, in the emergency departments and pediatric offices, and help establish a collaborative network that closes the gap in care.”

    BUILDING RELATIONSHIPS

    In other words, he said, “we took on the mission of Riley being not only Downtown Indianapolis, Riley should reach out to all our colleagues, collaborators, community partners, the whole state to ensure that all the kids being seen at any location in the state of Indiana are receiving high-quality care the same way they would receive it here at Riley.”

    Instead of trying to bring all these people to Riley, the team reaches out to those community partners, providing resources and educational material. To do that, they use simulation, a technique that allows them to replicate patient experiences, diseases and presentations.

    COVID vaccines

    Not surprisingly, the COVID-19 pandemic has tested the program. A lot of the outreach planned last year had to be canceled or placed on hold because of restrictions put in place and the reality that emergency departments were hammered by COVID cases. The team eventually shifted to a virtual model of learning in place of in-person training.

    But the goal is the same – to improve the health of pediatric patients around the state.

    “For us as clinicians, we care about improving the care of patients everywhere,” Dr. Abulebda said. “At the same time, as a leader in pediatric care and as a center of excellence, Riley also cares about inspiring that relationship with our community partners.

    “Most of the time when these kids get sick, they don’t come to Riley right away; they go to emergency departments throughout the state before they come to us, so we work pretty closely with our front-line community providers to help them improve their skills based on what we do here at Riley.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/sgt-mommy-shares-love-for-kids-every-day “Sgt. Mommy” shares love for kids every day 2021-03-08T16:12:00-05:00 2021-05-25T11:09:28-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    At work, Tamika Thompson is a bright light, a jokester and an encourager. At home, she says she’s known as Sergeant Mommy with her kids.

    She believes in hard work, order and generosity, lessons she is passing on to her sons, ages 10 and 14, just as her great-great-aunt passed them on to her. And she shares her creative gifts with the patients she meets at Riley Hospital for Children every day.

    Thompson delivers meals to Riley patients as a nutrition services representative, but she brings them much more than food. There’s always a smile, a kind word and often a drawing on the back of their placemat.

    “Parents can’t be there all the time, and kids are used to seeing nurses and doctors who poke them and give them medicine,” she said. “I bring them all the snacks and joke with them. They can’t see my smile, but everybody knows my raspy voice.”

    Thompson delivers a meal at Riley

    It’s not only her job to drop off trays, she says. “It’s also my job to remember names and rooms and patients.”

    Patients like Lucas Grounds, a 15-year-old champion dirt bike racer who was paralyzed in an accident and spent two months recovering at Riley.

    “I saw him before he left,” she said. “I always talked to him and his mom. He has such a good heart and lets off so much good energy, there’s no telling what he’s going to do in life.”

    When 5-year-old Makayla Owens got her new heart and moved over to rehab, Thompson put on a jingle bell hat and a light-up necklace at Christmas time and danced into the little girl’s room while delivering her meal tray.

    Thompson is witness to so many powerful stories of healing at Riley, and she prides herself on doing what she can to promote an atmosphere of hope and joy to encourage healing.

    It comes naturally for her.

    “It’s just who I am and how I was raised,” she said. “I was raised by my great-great-aunt, and I got my old soul from her. I always wondered why she took so many kids in, but she accepted all of us. I find myself giving back in a different way. I just have her heart, I guess.”

    Anna King, director of nutrition services at Riley, said Thompson embodies IU Health values.

    “She takes time every day to connect with patients, parents and caregivers. She knows when to just listen to their stories or frustrations and when to offer comfort,” King said.

    King shares stories of how Thompson helped a nurse get a patient to drink his chocolate milk that had meds mixed in by telling him the nurse added more chocolate to it. Thompson also creates beautiful drawings for patients on the backs of tray mats, King said.

    Thompson working in the kitchen

    In fact, one patient who was getting discharged earlier than expected was so intent on getting the picture of an owl that Thompson had promised her that she called down to the kitchen so that Thompson could meet her in the lobby and give her the drawing.

    “They said she’s not leaving without her owl,” Thompson laughed. “I had to hurry and finish the wings, and she was actually waiting for me in her wheelchair.”

    Thompson gets inspiration from patient rooms, noticing what kinds of stuffed animals the kids have and creating little masterpieces she thinks they will enjoy.

    Her joy comes from seeing their smiles and listening to their stories.

    “You never know what’s going to come out of their mouths,” she said. “And some of these kids are really grateful. They ask me, how am I doing?”

    The connection she makes with the kids on every unit of the hospital is what makes her special, King said of Thompson. She doesn’t focus on why they’re in the hospital but on what she can do to bring a smile to their day.

    “I think she does it from the perspective of a mom,” King said. “If her sons were in the hospital, this is how she would want them to be treated. Tamika is all about putting patients first. We just love having her on our team.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/she-almost-lost-her-boy-but-the-stars-aligned-that-january-night She almost lost her boy, but the stars aligned that January night 2021-03-07T16:00:00-05:00 2021-05-20T14:41:38-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Zane Hendrickson remembers seeing colors just before he collapsed on the pool deck during an early morning swim practice.

    The 15-year-old sophomore at Boonville High School near Evansville, Indiana, doesn’t remember much else about that day or the week that followed, but his mom still can’t shake the realization that she almost lost her son.

    Christa Hendrickson adopted Zane as a baby from Kazakhstan. For most of the past 15 years, it’s been the two of them.

    He is her only child. Her world.

    Zane Hendrickson swims laps

    That world was nearly shattered Jan. 7 when she got a text from her son’s swim coach that Zane, a champion swimmer, was complaining that his stomach, shoulder and back hurt after swimming laps. Muscle cramps caused by dehydration seemed a logical cause, but then Zane began shaking.

    That’s when Hendrickson, who was home sick herself, asked a friend to take Zane to the hospital.

    “By the time he got to the ER, I don’t think anybody thought he was that bad,” she said. “He said the abdominal pain was getting better, but then he said he couldn’t breathe. He had a seizure and threw up and went into cardiac arrest.”

    And that marked the beginning of a chain of events involving a network of medical professionals from three hospitals, including Riley Hospital for Children at IU Health and IU Health Methodist Hospital, who refused to give up on a young teen who seemed healthy one minute but lay close to death within the next hour.

    HIS HEART STOPPED

    Hendrickson was with her son in the emergency department of Deaconess Hospital in Evansville when he coded the first time. When his heart stopped, hers nearly did too.

    She will never forget the image of so many hands working feverishly to bring her boy back. Zane would suffer cardiac arrest at least eight more times, requiring more and more lifesaving support over the next several hours.

    How could this be happening to her healthy teenage son? He was fine that morning when he left for swim practice. A swimmer since the age of 8, he loved the water and he loved competing. It didn’t make sense, and her brain had trouble accepting it.

    It wasn’t until the hospital chaplain came in to speak with her that the fog lifted long enough for her to comprehend that her son was not expected to survive.

    “This is a fatal event,” she recalls one of the emergency physicians telling her.

    And yet, no one would give up on him, she said.

    “You could see the intensity in the room.”

    Behind the scenes things were happening too. A physician from Deaconess reached out to Riley for a consult. Dr. Riad Lutfi was on service that day in intensive care at Riley and discussed the feasibility of transporting Zane up to Indianapolis, but the teen was too unstable for the trip at that point.

    And there was another problem. Zane needed to be on ECMO (extracorporeal membrane oxygenation), which provides prolonged cardiac and pulmonary support to patients whose heart and lungs are unable to do their job. A surgeon in Evansville could get the process started, but the hospital wasn’t equipped to handle the extensive care that Zane would require.

    Riley has an outstanding ECMO team but no way to transport a patient while on ECMO. That’s where Methodist comes into the picture. The adult hospital has an equally outstanding ECMO department and frequently handles adult ECMO transports, but it had never transported a pediatric patient on ECMO.

    Zane laying on a bed within Riley

    “BRING YOUR ‘A’ GAME”

    Phone calls were made, texts were sent over the next few hours as Dr. Mrunal Patel and Dr. Kashif Saleem at Methodist discussed with the Riley and Methodist teams the viability of transporting a pediatric patient via IU Health LifeLine ambulance, not to Methodist, but to Riley.

    Lucky for Zane, “the stars aligned in terms of people being willing to give their time to do it and do it quickly,” said Tracie Layne, manager of clinical operations for the adult ECMO program at Methodist. “I’m just so grateful that we were able to do what was best for the patient.”

    Layne didn’t have staff to spare at Methodist to make the trip, so she called in two of her best ECMO clinicians – James Peoples and Lindsay Maurer – from home to ask if they were willing to staff an overnight ECMO transport from Evansville back to Indianapolis. Like everyone else in this story, they said yes.

    “James and I went, and we were privileged to be able to do that,” Maurer said.

    Still, it was outside her comfort zone.

    “I don’t work with kids very much, they tug on my heart,” she said. “But this is what I’m needed for. If I can help in any way … I’m going to do that. When you hear there’s a 15-year-old, it’s a unique situation, and we need your experience, we can’t say no.”

    Riley ECMO manager Gail Hocutt stood ready to help in any way she could, even offering to send Riley technicians to Methodist to support that team. In the end that wasn’t required, but it represents the collaborative nature between the two IU Health hospitals.

    “Without their team being willing to do this, we would not have been able to get our patient here,” Hocutt said of Methodist’s action. “We were fortunate that an adult CV surgeon (in Evansville) was willing to put cannula in this patient and put him on support, not knowing how we would get him here. Tracie and her team stepped up to make that happen, and we are grateful.”

    Layne knew it was asking a lot of two clinicians who typically treat adult patients to assume care for a child who was so desperately ill, but she also knew they were his best shot at survival.

    “When you’re talking about kiddos, that’s not something we’re used to,” Layne said. “There were layers to the challenge of this from an emotional standpoint. You just hold your breath and hope that everything goes the way it’s supposed to. And you bring your ‘A’ game.”

    When Maurer and Peoples, both respiratory therapists by background, arrived in Evansville later that night along with the LifeLine crew, they found a very sick boy with an exhausted team of nurses and physicians working mightily to keep him alive.

    It would be a few more hours before they were able to leave, but they got him to Riley safely, arriving shortly after 7 a.m. the next day.

    “You see all of these Riley team members standing there waiting on us with gowns on, gloves on, ready to go,” Maurer said. “That team was phenomenal. He had somebody looking out for him that day. He was very sick, but we managed to figure it out and get him to a higher level of care.”

    FEELING OF PRIDE

    Dr. Patel, a pulmonologist at Methodist, said the willingness of so many people to set aside their initial reservations to help this teenager shows a deep commitment to patient care and teamwork.

    “From the story I heard from the intensivist at Riley, this was someone who was young and we thought we could help if we could just get him (to Riley) safely. I talked with our surgeon that night (Dr. Saleem), and he agreed that it was a good idea and potentially lifesaving for him,” Dr. Patel said.

    “I was really glad when I heard that we were able to get him here safely and we actually, really and truly made a difference,” he added. “Kudos to the IU Health team. We’ve been stretched with COVID, and for people to come in on their time off, it shows we really care about our patients.”

    Layne saw what Dr. Patel saw, the same as Dr. Lutfi and the Riley team saw: Everyone working hard to figure out how to make this transport work.

    “It makes you so proud,” Layne said. “We talk about our values; we talk about our IU Health promise. We needed to make this right for this patient. We were able to still do what we’re good at but make sure we got him to the right place to be managed in the right way because that was best for him. It was nice to be able to coordinate that and do it so quickly.”

    Dr. Lutfi said this is a perfect example of IU Health stepping up to a challenge.

    “I never had a single person who said you can’t do this.”

    Zane recovering in the rehab unit at Riley

    ZANE IS BACK

    Because of that, Zane is recovering today in the rehab unit at Riley after suffering a stroke and undergoing open-heart surgery by Dr. Mark Turrentine to repair a defect that had gone undiagnosed his whole life. It was cardiologist Dr. Tim Cordes who suspected an underlying heart problem and ordered the heart catheterization that found the defect.

    There were many dark days early on in the teen’s treatment when physicians worried that he might not wake up or he might have suffered significant brain damage due to the multiple cardiac arrests. But Zane is still Zane, his mom says. His sense of humor with a side of sarcasm is intact.

    He suffered loss of function on his left side, but has regained much of it and continues to work out in therapy several times a day. His appetite is recovering, though he prefers pulled pork and Mexican food to hospital meals, Hendrickson said.

    Hearing how well Zane is doing two months after that emergency transport filled ECMO clinician Maurer with elation.

    “That just made my day!”

    ROOMMATES AT RILEY

    Hendrickson has a hotel room in town but prefers to sleep on a cot in her son’s room.

    “I can’t really sleep, but when I leave, I kind of panic and find I can’t sleep at the hotel.”

    It will get better, she tells herself. It already has.

    She has flashbacks to the codes, the CPR, the somber warnings from that first day.

    “Initially, I was just in shock, trying to make sense of it, but you have to keep going. You do what you do as a mom – whatever has to be done.”

    She remembers whispering to her son even when he couldn’t hear her.

    “I told him to prove them wrong when they said he wasn’t going to make it. He’s a swimmer, and many times I sat in the stands and tried to talk him through a meet. So I tried to talk him through this, telling him to be strong and keep fighting.”

    His spirits are surprisingly good, she said, helped no doubt by a recent parking garage visit from friends who gathered on a blustery day to talk to Zane by phone while he could see them from a window on the third-floor cardiac step-down unit.

    Zane working through rehabilitation with the Riley team

    His goal is to regain full function so he can get his driver’s license this summer, she said. Meanwhile, he jokes about his condition, saying “How many 15-year-olds do you know who’ve had a heart attack and a stroke?”

    Hendrickson said it’s hard as a mom to put your trust in others to care for your child. But the Riley team has made it easy.

    “He made some special friends in these units; it’s just been amazing,” she said, commending the nurses, physicians, therapists, child life specialists and chaplains. “And Dr. Turrentine – you’re not going to find a better surgeon.”

    Despite the heart attacks, the stroke, the setbacks and the rough road to rehab, she is rejoicing.

    “I still have my boy, and if anything can come from this to help other children, that would be wonderful.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/burn-victim-goes-home-after-150-days-at-riley Burn victim goes home after 150 days at Riley 2021-03-04T14:44:00-05:00 2021-11-10T11:55:54-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Natalie Zofkie has walked through fire and lived to tell about it.

    On Wednesday, the 12-year-old Noblesville girl walked out of Riley Hospital for Children on her own power – 150 days after suffering critical burns over 93% of her body.

    Natalie with her friends and family after recovering from critical burns

    By her side this week and throughout her difficult recovery were her mom, Sarah, her dad, Michael, her older siblings and a host of family and friends praying for her from afar.

    Sarah can’t quite believe the day has come when she can take her little girl home, but she is busy fielding phone calls and packing up her daughter’s things while Natalie does the talking.

    “Everyone says that I’m a hero of some sort, but I don’t feel that way,” Natalie said just minutes before she was discharged. “I’ve never saved anyone or been through a battlefield.”

    But in fact she has been through a battle unlike any most people will ever see in their lifetime.

    “Natalie was one of the sickest patients we had in the hospital when she arrived,” Dr. Brett Hartman said. “She was in a critical state.”

    Dr. Hartman, the burn team and the rehab team at Riley worked together to make Wednesday’s celebration possible. Natalie was injured the night of Oct. 4 when she poured gasoline onto a small backyard fire at a friend’s house and it erupted into a ball of flames that engulfed her.

    Most of her burns were third-degree burns, meaning they penetrated deep into the layers of skin and fat. All of that tissue had to be removed before Dr. Hartman could begin the process of covering her with temporary skin, then grafting skin from the small parts of her body that were not burned – her scalp and under her arms, and “growing” more skin to cover her body.

    The challenge for Natalie, whose beautiful face was left untouched by the flames, was to slowly get comfortable in that new skin, something she admits has been hard and painful.

    “None of this is fun,” said the former gymnast, before offering some advice to other burn victims. “If you do what you’re supposed to do like stretching and walking and moving, you’ll get to full function again. Don’t feel sorry for yourself. Get out there and help yourself.”

    Natalie is honest about her painful journey over the past five months, saying there were many days when she didn’t want to get out of bed to do the hard work that recovery required and sometimes she took her frustration out on her therapists.

    But she also knows that she wouldn’t be walking out the doors of Riley without their help. Same goes for her family.

    Natalie leaves Riley Hospital for Children with her family

    “My parents had to help me with everything, and I’m so lucky that I had parents to be there with me because I probably wouldn’t have gotten through this,” she said.

    What she didn’t know was that hundreds, if not thousands, of people were praying for her, not just in Indiana but around the country. Strangers who had heard about her accident through Facebook joined hands and hearts to lift her and her family up through her arduous journey.

    In fact, a Columbus, Indiana couple drove up to Riley on Wednesday just to meet this young girl who had been in their prayers. They were standing in the background just outside the doors of Riley when Sarah Zofkie noticed them.

    “We wanted to tell you that you are an inspiration to so many people,” the woman said to Natalie, who responded with a hug.

    Just before that moment, she had said goodbye to her rehab therapists, nurses and other team members on the third floor, who cheered as she rang the bell and pinned her butterfly to the wall, signifying the end of her in-patient stay. Her rehab will continue on an out-patient basis.

    Natalie, who will finish out the school year online, expects to be back with her friends in middle school in the fall. Many of those friends were among the hundreds who stretched out for a mile on the side of the road Wednesday, waving signs and cheering as a police escort led her home.

    A Riley Wagon with Natalie's name

    “I’m grateful that people want to be there for me and take time out of their day to welcome me home,” she said.

    She knows her life has changed but says she takes things less for granted because of it.

    “I think mentally it’s made me stronger. It’s made me work hard. I have a better understanding of how short life really is, and it’s made me grateful.”

    A Riley wagon with Natalie’s name on it will serve as a reminder to other patients and parents about the little girl who walked through fire and lived to tell about it.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/she-is-an-ambassador-for-riley-on-and-off-the-clock She is an ambassador for Riley on and off the clock 2021-03-02T16:24:00-05:00 2021-05-25T11:17:25-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    If it’s not the rock star pins weighing her down, it’s the Daisy, the Red Shoe, the kidney pin and any other recognition that will fit on Brenda Phillips’ ID badge.

    She laughs when asked if it’s hard to carry around all those commendations.

    “The children like to look at the pins, so I leave them on so the kids have something to talk about.”

    That bling tells you something about Phillips, an IU Health team member for 26 years, the past 10 at Riley Hospital for Children.

    Valued by patients, families and her co-workers, Phillips is a registered nurse who takes to heart her job as caretaker of so many precious lives.

    Brenda Phillips Riley RN Badge

    “I feel like if we’re going to do this work, we all need to operate as a unit, we all need to be respectful of each other,” she said. “This hospital is our community, especially with the transplant kids, and we need to be that village for them. That’s what we’re here for.”

    Phillips, who previously worked as a medical assistant at IU Health Methodist Hospital, went back to school to become a registered nurse more than a decade ago after her children were grown. She spends every Monday morning in the transplant clinic at Riley, working with patients who’ve had kidney transplants. The rest of the week she works in the surgery medical service area on the second floor of the Riley Outpatient Clinic.

    It was Tina Ray, pediatric renal transplant coordinator, who wanted to call attention to Phillips and what she brings to Riley, describing her as “remarkable.”

    In addition to looking out for her patients medically, she makes it her purpose to see to it that they have the resources they need outside of Riley, Ray said, whether that be educational support or something else.

    “There are so many caring things that Brenda quietly does. She makes sure that the patients who have little resources have food. And this winter, she has been taking blankets, hats and hot meals to the homeless people in our community,” Ray said. “She is such an inspiration to me.”

    Phillips didn’t set out to be an inspiration, but she does believe in doing her part to help others.

    “If you see someone and you’re blessed enough to help, you should help.”

    It’s as simple as that.

    It’s why she, her husband Al and daughter frequently distribute items to the homeless around Indianapolis.

    “These tent cities, they’re everywhere,” she said, “especially since the pandemic. “We started getting together things we thought they would need, and I asked co-workers to bring in blankets, scarves, gloves, socks. We just dropped some things off yesterday.”

    Brenda outside with a bike

    Among the treats she shared was Girl Scout cookies because, after all, she said, “Who doesn’t like Girl Scout cookies?”

    Phillips is most definitely a people person. The mother of three and grandmother of two is also a kid at heart, she says.

    “I’m just a big kid. I like to ride my bicycle (a pink Cadillac bike). You get some exercise, but it still feels like fun. And nothing makes you feel more like a kid than riding a bike. I love to color in my coloring book. And I like to bake and drop off baskets of goodies for the neighborhood kids,” she said.

    “Anybody who knows me knows I love children. I don’t know what my life would be if I wasn’t doing something for children,” she added. “And Riley is the best place to be for that.”

    When she and her husband are out and about and she is wearing her Riley uniform, someone is guaranteed to stop her and want to share their Riley story.

    “My husband knows if anyone stops me and wants to talk about Riley, I’m going to stop and listen because they’re so proud. And they’re grateful. I take the time to listen because it’s important.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/parents-blindsided-by-covid-related-illness-in-kids Parents “blindsided” by COVID-related illness in kids 2021-02-28T12:04:00-05:00 2021-08-02T14:54:34-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Two teenage boys, two frantic sets of parents, one scary diagnosis – MIS-C.

    Multisystem Inflammatory Syndrome in Children burst onto the health scene last May, mostly in Europe at first, then in the U.S. It seems to be the body’s exaggerated response to a prior exposure to infection, specifically COVID-19, and it strikes adolescents most often.

    For Wyatt Hudson (pictured above) and Richard Barnes, it meant a frightening trip to Riley Hospital for Children, lots of tests, lifesaving treatment in intensive care and, thankfully, a return to home, school and some of the activities they love.

    Wyatt, 14, is an eighth-grader in Perry Township Schools in Indianapolis. Richard, 15, is a freshman in Rushville (Indiana) Consolidated Schools. Both teens were otherwise healthy before being hit by MIS-C, an illness their parents knew nothing about before it threatened their children.

    Amy Hudson still remembers that helpless, terrifying feeling when she realized her son was very ill. His heart rate was dropping, his oxygen saturation levels were falling, and he was moved to Riley’s PICU on Christmas Day.

    “Blindsided” is how Hudson described the scare she and her husband, Dewayne, suffered in December when their “quiet Wyatt,” then 13, began running a fever, vomiting and said his throat hurt. Then he developed a rash on his hands. He was tested for more run-of-the-mill illnesses before his pediatrician ordered blood work, then called the Hudsons to tell them to take Wyatt to Riley immediately.

    That was two days before Christmas. His first symptoms began to appear three days before that.

    “It was horrible, just a nightmare,” Amy Hudson said. “I knew if she was telling me to take him to Riley this was serious. We got right up there. They were fast in the ER, and that was comforting.”

    Barnes family photo

    MIS-C IS A PUZZLE

    The challenge with MIS-C is that there is no one diagnostic test for it, so doctors have to rule things out as a matter of course.

    When Richard Barnes was transferred from another hospital by ambulance to Riley early on the morning of Friday, Jan. 29, he was complaining of abdominal pain, and tests revealed swelling, so there was some concern that he was suffering appendicitis. For a couple days prior, he had an elevated temperature and was vomiting.

    “We kept thinking if it was his appendix, it would be a simple procedure,” Beth Barnes said. “But they kept putting the surgery off and all these other doctors started coming in. We saw our son go downhill quickly. By that afternoon, he was on oxygen, and by Saturday he was in the ICU.”

    Dr. Samina Bhumbra, associate medical director of infection prevention at Riley, saw both boys either during their in-patient stay or after discharge. She and the team at Riley have been compiling as much data as they can on the mysterious illness to help educate physicians around the state to recognize the signs of disease and establish treatment protocols.

    While it’s not yet clear what causes MIS-C, most children who are diagnosed had previously tested positive for COVID-19 or were exposed to someone who had the virus. In Richard’s case, he and his parents and siblings had COVID in December. Richard’s father, Steve, had the worst case, but all recovered.

    Wyatt at The Apple Works

    Wyatt’s parents also had the virus back in November, but neither Wyatt nor his younger sister showed any symptoms of being infected. He did, however, test positive for the antibodies later, so his parents assume he also carried the virus.

    Currently, three nationwide studies are looking at different aspects of the illness, and Riley is participating in at least two of them.

    HEALTH ALERT

    In mid-May, the CDC issued a health alert in the U.S. about this new condition impacting children, specifically adolescents, who began coming into the hospital about four weeks after the peak of COVID surges with what looked like shock or sepsis.

    The common denominator in their bloodwork is inflammation, along with evidence of past COVID infection, whether based on antibodies or exposure history. Additionally, two or more organs are typically affected. Often, that could be the heart, GI system, kidneys and/or skin.

    Because there are similarities to Kawasaki disease (which mostly affects younger children), diagnosis can be tricky. Apart from fever and GI symptoms, Dr. Bhumbra said the next most-common sign of MIS-C is redness of the eyes and skin rash.

    Other symptoms can include: irritability and decreased activity, diarrhea, vomiting, belly pain, cracked lips or a red, bumpy tongue, swollen hands and feet (sometimes with redness and peeling) and swollen lymph nodes.

    Parents can look for these things, but not everyone is going to have identical symptoms, Dr. Bhumbra said.

    “There’s not a single lab that can diagnose these kids, so we have to use all parts of the workup – the history, the labs and the physical findings to help come to this diagnosis,” she said.

    That’s why so many specialties get involved. MIS-C affects multiple parts of the body so multiple doctors are consulting on a child’s care. They include critical care specialists, infectious disease specialists, rheumatologists, cardiologists and hospitalists.

    Beth Barnes can’t count the number of doctors who came in and out of her son’s room at Riley, but she remembers when he started feeling better after he received IVIG (immunoglobulin) treatment and steroids, standard for MIS-C patients.

    “He improved tremendously after the first dose,” Barnes said. “I saw my son smile and try to joke. He is very loving, ornery, loves to joke, smiles all the time. I went six days without seeing him smile.”

    Richard smiling in his baseball uniform

    Richard was released on Feb. 3, five days after he was admitted to Riley. The football and baseball player returned to school the following week but continues to be seen by Riley specialists in a new outpatient clinic for MIS-C patients. The twice-monthly clinic offers a one-stop shop where kids can be seen by infectious disease, rheumatology and cardiology specialists.

    Richard likely won’t be able to play baseball this spring, but his coach has already told him he will remain part of the team.

    KIDS DO WELL WITH TREATMENT

    For Wyatt’s parents, who lost their baby girl Kylie to a genetic disease at Riley nearly 15 years ago, returning to the hospital brought back painful memories, but Amy Hudson said Riley staff were sensitive to their fears then and now.

    “I was really terrified, especially not knowing much about this MIS-C,” she said.

    After spending six days in the hospital, Wyatt went home Dec. 29. In January, he celebrated a belated Christmas and his birthday with his family. He returned to school in February.

    “The good thing is, despite these kids coming in as sick as they are, they generally do well with treatment,” Dr. Bhumbra said.

    And the illness itself is still a rare phenomenon, she said. As of Feb. 8, there had been 2,600 cases of MIS-C reported in the United States. That compares to 3.1 million children testing positive for COVID in the U.S. since the beginning of the pandemic.

    Riley has cared for about 50 patients with MIS-C since May, Dr. Bhumbra said.

    “If your child is having fever and not feeling well, definitely always reach out to your physician. Don’t be afraid to reach out or take your child to the emergency room for evaluation,” she said. “This illness can be mild or severe. There’s a lot we still need to learn.”

    One of the benefits of Riley serving the whole state, she added, is its focus on outreach and education, so other hospitals and pediatricians know what to look for and how to recognize and treat the illness.

    The first line of defense, however, is always parents, who know their kids best.

    “Watch your kids, especially if they’ve had COVID,” Beth Barnes said. “As a parent, it was very scary. We’re very lucky.”

    Amy Hudson wants to be sure other parents know the signs.

    “Even though it is rare, it does happen and I don’t want someone else to be so blindsided,” she said. “In that situation, I feel like every minute counts. Thank goodness Wyatt had a doctor who was aware, and thank goodness I was paying attention.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-saved-her-life-and-now-she-helps-save-others Riley saved her life and now she helps save others 2021-02-22T17:00:00-05:00 2021-05-24T13:18:58-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Keleigh Sims is one of the newest nurses on 3 West at Riley Hospital for Children, but she is no stranger to the hospital or the unit.

    Sims’ days at Riley go back 23 years, when she was an infant, and doctors were scrambling to figure out what was wrong with her tiny heart.

    Keleigh with Drs. Don Girod, John Brown, and Robert Darragh

    Lucky for her – and her frightened parents – she had some of the best heart doctors you could ask for on her case: Dr. Don Girod, Dr. John Brown and Dr. Robert Darragh.

    Sims was born with dextrocardia, a rare heart condition in which the heart points toward the right side of the chest instead of the left side. But it was more than that.

    As Sims tells it today, it was her mom who kept pushing for more answers, knowing that something more was going on with her child, the youngest of four.

    In a book given to her mom by a nurse, tear stains mark the page where scimitar syndrome is explained. It is described as a rare association of congenital cardiopulmonary anomalies. In her case, it included dextrocardia, a hole in her heart, an extra artery off of the aorta going back to the lung and flooding the lung with blood, and pulmonary veins on the wrong side of the heart.

    Sims had her first surgery at 6 weeks old and another at 18 months old. She credits her parents and her doctors at Riley for saving her life, and today she has no restrictions on living the life she wants.

    In fact, growing up she led an active life – playing travel softball, showing horses and helping out on her family’s farm.

    And today?

    Sims working within the cardiac step-down unit

    “I’m a nurse because of the care I received at Riley,” she said. “I feel another level of connection with these families and kids.”

    Sims was working as a tech on 7 West while she finished nursing school, but she knew she wanted to eventually find a position in the heart center. After shadowing another nurse on 3 West, Sims got an offer she couldn’t refuse.

    Debbie Hazel, clinical manager on the cardiac step-down unit, told Sims she would have a job for her when she graduated.

    Sims was overwhelmed. She couldn’t believe her dream was coming true.

    “I called my mom. She was over the moon. She keeps saying it’s full circle. My dad cried.”

    From that point forward, Sims began picking up extra shifts as a tech on 3 West to get accustomed to the flow and get more experience on the unit.

    She started as a nurse just a month ago and couldn’t be happier. During orientation, she is working days, but in March, she will be on the night shift.

    “It’s awesome! I love it!”

    Baby photo of Sims

    Dr. Darragh was on service recently and had all three of Sims’ patients, she recalled. One of the patients’ moms was talking to her about him when she volunteered that he was also her cardiologist.

    “I can relate to these families,” she said. “You can see the heartbreak and you know when someone needs a glimmer of hope. I tell them, ‘You’re in the best hands here at Riley, and you can beat the odds.’ ”

    The people she works with are beyond amazing, she said. And she is honored to be part of the team.

    “It’s crazy that I’m now working for the people who literally saved my life.”

    Her manager is thrilled for her as well.

    “She has been eager to work with this cardiac population of patients since beginning at Riley,” Hazel said. “She is so engaged with our patients and families, eager to learn from our team and a great team player. You can tell her heart is more with these patients due to her personal experience with our medical team and her own health story.”

    Sims and her husband, Cory, are looking forward to being parents someday, and the planned opening of the Mother-Baby Tower at Riley later this year makes that all the more exciting.

    “I appreciate the comfort of knowing worst case if something were to go wrong, Dr. Darragh is going to be there,” she said. “The team is going to be there. If something’s wrong with my baby, I have the best team. If something’s wrong with me, I have the best team. It will be so nice to have all of my doctors in one building.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/teen-gets-pacemaker-for-the-brain-to-control-epilepsy Teen gets “pacemaker for the brain” to control epilepsy 2021-02-21T16:26:00-05:00 2021-06-03T13:06:24-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    She had the first seizure when she was a baby. At the time, doctors attributed it to a high fever.

    It would be years before she suffered another, but at 8 years old, Addison Lynch was diagnosed with epilepsy.

    By then, the seizures were occurring more frequently. Medications helped, but they couldn’t stop the seizures from happening. Upping the doses and adding more meds wasn’t a good long-term solution.

    Addison celebrating her 16th birthday

    Now 16, Addison is eager to learn to drive, something she can’t do until her epilepsy is controlled. She longs for the freedom and independence that her friends have.

    “Heart-wrenching” is how Lesley Watson describes the feeling of waiting and watching for her daughter’s seizures.

    “For my peace of mind, Addison wears an Apple watch that has a seizure detection alarm,” Watson said.

    The watch sends a text or calls the teen’s mom or dad, Derek, if it detects something amiss.

    “I feel bad for her because I can’t relax, and she doesn’t get to stay home by herself very often. I still go in and check on her in the night even though she’s 16 because I’m so afraid she’s going to have a seizure during the night.”

    So last year, Watson brought her daughter to Riley Hospital for Children to see epileptologist Dr. Lisa Smith. After consultation with neurosurgeon Dr. Jeffrey Raskin and others, the decision was made to try a surgical intervention.

    READY FOR A ROAD TRIP

    The night before surgery, Addison was ready, if a bit anxious.

    “I’m a little nervous, but if it will help, then I’m down for it,” she said, adding she is most looking forward to getting her driver’s license and heading to Florida to visit her grandpa. “I want to be able to drive all the way to Florida.”

    Her mom laughed at that response. “She went big. I thought she would say she wants to drive to work.”

    Team of health professionals implant RNS

    On Wednesday morning, Dr. Raskin, surrounded by a team of health professionals, implanted a therapeutic device for epilepsy called a responsive neuro stimulator into his teenage patient. The RNS is basically a pacemaker for the brain.

    Offering a big assist in this surgery was a new cranial robotic system that Riley is the first in the state to trial. About the size of a shoebox, the robot helps pinpoint where to implant the device, providing a roadmap of sorts to reach the intended brain targets.

    “Instead of these sweeping incisions of the past and then big craniotomies and putting grids on top of the brain, what we’re doing now is actually creating a GPS system around the head and that is called stereotaxy,” Dr. Raskin said.

    Stereotactic surgery is a minimally invasive form of surgical intervention that makes use of a three-dimensional coordinate system to locate small targets inside the body.

    “Once we make a GPS system using this robot, we can achieve a trajectory through a 3-millimeter incision. So we place an electrode into the substance of the brain from the outside of the head and put it exactly where we want it,” he said.

    The electrode attaches to a battery pack that lives inside the skull. It can then recognize patterns of activity and head off potential seizures.

    “This is the pinnacle of neurological surgery, using a cranial robotic system to implant the newest generation of brain pacemaker,” the neurosurgeon said. “It’s as interesting as it gets.”

    Riley has already done about 50 brain surgeries to treat epilepsy with help from a larger robot nicknamed ROSA (Robotic Stereotactic Assistance), and in fact is the only children’s hospital in the state to have a ROSA. But the new Autoguide cranial robotic device the hospital is trialing has a smaller footprint and is easier and faster to use, Dr. Raskin said.

    An up-close of the Autoguide cranial robotic device

    LEADING THE WAY

    This kind of surgery is done in just a handful of centers around the country, he added. Using the latest technology is what sets Riley apart, he said, adding that IU Health has a forward-thinking attitude, especially when it comes to the treatment of epilepsy.

    Patients like Addison are expected to have shorter stays in the hospital, less blood loss and less pain with the minimally invasive approach to brain surgery.

    Dr. Smith, Addison’s epilepsy doctor, said the advent of RNS opens a whole new way of treating patients who previously would only have the choice of more medications and/or a vagus nerve stimulator, both of which would be palliative for her seizures. (The vagus nerve extends from the brainstem through the neck and the thorax down to the abdomen.)

    “While traditional resective epilepsy surgery (removing the part of the brain where the seizures are coming from) has also been a wonderful advancement in the treatment of intractable epilepsy, most of the time this is only for a specific subset of patients,” Dr. Smith said, adding it was not a good option for Addison.

    Diagram where Addison's brain surgery took place

    “What this device offers is not only the chance for us to monitor the frequency of her seizures, but also to simultaneously treat them with this same device,” she said. “I am hopeful that this will be a huge step in the direction of gaining independence for Addison and allowing her to have an improved quality of life.”

    Two days after surgery, Addison had already been able to get up and move around, talk and eat a little, her mom said Friday. She was expected to be discharged by the following day.

    “I think after her having epilepsy and seizures for half of her life I’m ready for her to experience other things that she hasn’t been able to do,” Watson said. “It will be great for her, giving her a little independence from me so I’m not always hovering.”

    The Fishers sophomore is a good student whom teachers love because she always comes to class ready to learn, her mom said.

    “She loves art and music, she writes stories – she wants to be an author – and she loves animation.”

    The stigmatizing and cognitive effects of the seizures and maxing out on medications to control those seizures take their toll, Dr. Raskin said. While nobody wants to go through brain surgery, he believes this procedure will be life-changing for Addison, allowing her to do all the things she dreams of doing.

    But maybe save that drive to Florida until she gets a little more experience behind the wheel.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/living-his-best-life-even-while-in-the-hospital Living his best life even while in the hospital 2021-02-18T10:17:00-05:00 2021-06-29T09:16:24-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Eight-year-old Lucas Reinoehl might be in the hospital, but he’s living his best life while there.

    Lucas plays on a phone

    The second-grader has been playing video games and organizing his Pokemon trading cards pretty much nonstop since he arrived at Riley Hospital for Children from his home in Ohio three weeks ago.

    In preparation for spinal surgery, Lucas is undergoing halo traction for several weeks, a method of gently stretching and straightening his severely curved spine. Halo-gravity traction pulls the head and spine upward carefully, applying a slow stretch to the spine. Doctors do this by attaching a metal ring that surrounds the head to a pulley system with weight gradually added over time.

    On March 2, Lucas will head into the operating room, where orthopedic surgeons Dr. Tyler Christman and Dr. Ryan Fitzgerald will implant growing rods to correct his spine over time.

    It sounds like a lot for anyone to deal with, but Lucas is unfazed. After a day or two of getting used to the traction device, he settled in nicely in his eighth-floor Riley room decorated with his favorite posters and stuffed animals.

    “We are putting more than 20 pounds of weight through his spine now, and he doesn’t seem to be fazed by it,” Dr. Christman said.

    The device comes off for showering, dressing and physical therapy, but otherwise Lucas wears it all the time – in bed and in a wheelchair.

    His parents, Tyler and Sarah Reinoehl, say he’s handling this ordeal better than they are.

    Baby photo of Lucas

    Lucas has been a Riley kid since he was about 10 months old. His parents noticed he seemed to sit a little crooked, and X-rays revealed a significant curve in his spine. They were referred to Riley, and Lucas was fitted with his first upper body cast to stabilize his spine when he was 15 months old. He would go on to wear 15 more casts over the next seven years.

    “The first casting was very hard,” Sarah said. “We didn’t know how he would react, but he has been amazing through the whole process. I think it’s been harder on my husband and me.”

    Tyler and Sarah spend alternate weeks at Riley with their only child, whom Tyler describes as “a high-spirited, cheerful little boy.”

    “He has his moments,” Tyler said, “like when he doesn’t want to take his medicine, but what 8-year-old does? Otherwise, he’s taking it like a champ, better than I would.”

    Father and son spend their days playing video games together and enjoying precious time that they wouldn’t ordinarily have at home.

    “For me, it was an adjustment to be in the hospital 24-7, but we’re doing good,” said Tyler, who sleeps on the couch in his son’s room. “The couch needs to be about 3 inches longer and 3 inches wider. Other than that, it’s perfect,” he laughed.

    Both parents can’t say enough about the Riley team during their current stay and their visits over the years.

    Lucas smiles with his family

    “Everybody at this hospital has been great,” Tyler said. “It’s been a long journey, but we’ve never had a bad experience. And the best thing is the results.”

    Lucas has severe kyphoscoliosis, an abnormal curvature of the spine, in addition to cleidocranial dysplasia, a genetic condition that affects teeth and bones, often including the skull, face, spine, collarbones and legs.

    While casting can be curative for some kids with early onset scoliosis or infantile scoliosis, Lucas’ case is much more serious, Dr. Christman said. Casting helped keep the curve from getting worse, but it never got better. So traction was the next step, followed by surgery.

    “If we were to take him to the operating room without halo traction, he’d be at greater risk for nerve or spinal cord injury,” the surgeon said. “The spine only likes to stretch so far. By doing this halo gravity traction, we can gently stretch his spine pre-operatively.”

    After the 6- to 8-inch magnetic rods are placed in Lucas’ spine, he will heal for a few days before going home. He will return to Riley every three to four months to have X-rays, then the MAGEC rods will be lengthened a few millimeters in clinic using an electromagnet, so no incision is required.

    Lucas, who is about 42 inches tall and weighs 48 pounds, might even grow a smidge during surgery.

    With large curves, kids do gain some height as the spine is gently stretched, Dr. Christman said.

    “It’s not uncommon for teens to gain an inch or two during surgery. That’s one of the questions kids ask,” he said. “How much taller will I be?”

    Lucas is more concerned about being able to go swimming and having fun with his cousins, his parents say, activities that were limited by the casts.

    Lucas preparing for his surgery

    Meanwhile, he continues to charm the nurses, doctors and therapists, even persuading some of them to play Pokemon, Minecraft and Fortnite with him. Count Dr. Christman among that bunch.

    “I have played some games with him,” the surgeon said with a laugh. “He has moved in and gotten very comfortable in his room. I look forward to rounding and stopping in, saying hi and playing some games.”

    Sarah appreciates the relationship Dr. Christman has with Lucas and the family.

    “He has been so great,” she said. “It makes me feel more at ease that we have a doctor who listens, answers all of my questions and is willing to play with our son.”

    With a kid like Lucas, it’s easy, Dr. Christman said.

    “Lucas has been a patient of mine for a long time. We have a great relationship. I’m honored to take care of him and to have his parents put that trust in us.”

    As Lucas continues to grow, the Riley team will keep up with that growth using the magnetic rods, Dr. Christman said. Eventually, he will require a formal fusion – removing the rods and fusing the spine with traditional screws and rods – once he is finished growing.

    “It’s been a great experience to treat Lucas and to learn from him,” Dr. Christman said. “His positive attitude is contagious, and he’s just a fun kid. He has been through so much with casting and now with traction, but he lives fearlessly.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/their-bones-are-brittle-but-their-bond-is-unbreakable Their bones are brittle, but their bond is unbreakable 2021-02-17T08:28:00-05:00 2021-05-21T14:58:02-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Watching them play, you wouldn’t know anything’s wrong with siblings Emery and Ellis Fogt. And that’s just the way they like it.

    The 5- and 7-year-olds are the children of Dustin and Lauren Fogt, who live northeast of Indianapolis. Active, engaging and creative, the kids serve pretend ice cream sundaes to visitors, sing songs and show off their video game skills.

    Dustin and Lauren playing at their house together

    It’s a loud, busy household, but one thing you don’t hear on this winter evening is fighting or crying. These two get along well; they’ve been looking out for each other since they were toddlers.

    Emery and Ellis were born with osteogenesis imperfecta, OI for short. Also known as brittle bone disease, the genetic disorder causes imperfect bone formation due to a lack of collagen. People with this condition have bones that break easily, often from mild trauma or with no apparent cause.

    The Fogt kids inherited this disease from their father, who inherited it from his father. Lucky for them, it’s on the mild side as OI goes. Other children with the condition may not be able to walk or play.

    Each of the siblings has suffered multiple breaks in their arms, legs and hands, but quarterly bone-strengthening infusions at Riley Hospital for Children have done a world of good, their parents say.

    Lauren Fogt, a former nurse at Riley, took care of babies with OI, so she was ahead of the game, and Dustin was able to share his first-hand experiences with the disease.

    “Between the two of us, we navigate pretty well,” Lauren said. “We don’t know how people who don’t have the experience get through it.”

    As a young nurse at Riley, she never thought she would eventually have Riley kids herself, but when she met Dustin for the first time, she was immediately drawn to his eyes.

    “When I met Dustin, I knew he had OI because of the sclera (the whites of his eyes were bluish-gray). They all have these hauntingly beautiful eyes,” she said.

    The couple has been together for 13 years, married for 10.

    They knew, when they decided to have kids, that there was a 50-50 chance their child or children would be born with OI. They chose not to find out ahead of time, but Lauren had extra ultrasounds in utero to look for breaks. None were found, and Lauren delivered both children naturally.

    While Ellis was diagnosed clinically with OI at 4 months, he didn’t suffer his first break until Lauren was already pregnant with Emery. He was almost 2 and broke his leg not long after learning to walk.

    Baby photo of Lauren and Dustin

    Emery was about 2½ when she had her first break. The couple originally held out hope that Emery would be spared the disorder. Dustin’s brother has three kids – one boy and two girls. The boy has OI, but the girls do not.

    During one nine-month span, both Ellis and Emery suffered multiple breaks, but they’ve had none for two years now. For Lauren and Dustin, it means the infusions are working.

    While Lauren acknowledges being super anxious when the kids were younger, worried that any wrong move could result in a fracture, she is more relaxed now. When one of the kids takes a tumble, which is bound to happen, neither she nor Dustin overreacts.

    “We try to remind them how hard it was being in a cast, but at the same time, we don’t want to scare them,” Dustin said.

    He remembers what it was like when he was little, spending a lot of time in the hospital after breaking nearly 30 bones during his childhood.

    “I was almost ashamed of it, of always being hurt,” he said. “So we don’t tell them they have bad bones or soft bones. We want them to feel as normal as possible.”

    Emery and Ellis, who are under the care of Riley geneticist Dr. David Weaver, are old enough now and understand their body well enough to know if they’ve suffered a fracture, Lauren said.

    “Ellis has two speeds – fast and faster,” she laughed. “Usually if he falls, he gets right back up. We can tell if he trips and looks at us funny, we know something is wrong.”

    It might sound counterintuitive, but the best therapy for increasing bone density and growth in toddlers with mild OI is jumping, Lauren said. Both kids have been in physical therapy over time, and they love jumping on small trampolines. It helps with their confidence too, both parents say.

    Lauren and Dustin reading a book outside

    Emery also loves to dance. She takes ballet and tap classes and frequently hosts dance parties around the house. Ellis played soccer and did karate, both of which help with balance and coordination.

    The siblings have learned to lean on each other through their various setbacks.

    “Their condition has brought them closer together,” Lauren said. “One thing we didn’t expect at this age is the empathy they have, not only for each other but for everybody. The last time she had a break, he was waiting at the garage for us, ready to grab my bag, and he had a pillow and an ice pack for his sister.”

    The Fogts expect their kids to have pretty normal lives. Right now, Ellis likes to draw and play video games, while Emery loves practicing her French with help from the TV program “Fancy Nancy.”

    “She has a huge vocabulary,” Lauren said of her daughter. “And she loves the French language because it’s so pretty.”

    Whatever they choose to do in life, she added, they both have the “panache and joie de vivre” to be successful.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mgilmer1@iuhealth.org

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    https://www.rileychildrens.org/connections/meet-crystal-livers-powers-new-manager-of-internal-communications-at-riley Meet Crystal Livers-Powers, new manager of internal communications at Riley 2021-02-15T08:21:00-05:00 2021-03-15T09:41:13-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Crystal Livers-Powers is the newest member of the Riley Hospital for Children communications team. As manager of internal communications, she will lead efforts to provide information, stories and updates to team members as they work to make a difference in the lives of Riley patients and families.

    Livers-Powers has led communications teams at high-profile employers around the city, including Eli Lilly and Co. and Indianapolis Power & Light. She has a degree in Journalism and African-American Studies from Indiana University in Bloomington.

    A mother to three girls (and a dog named Sundae), she loves the beach and looks forward to playing in the sand with her daughters and nieces when it is safe to travel again.

    Q: Why did you choose to come to work at Riley?

    A: Riley’s reputation in our community is certainly something that stands out to me. I have a special spot for children (mom of three daughters, longtime volunteer for Girl Scouts of Central Indiana, auntie in a big family, etc.) and a love for communications, so an opportunity to combine those passions while supporting people who help children means something to me.

    Q: What are your most immediate tasks/goals?

    A: I am responsible for leading communication efforts to our leaders and team members. I am in learning and listening mode now. I will be focused on telling the Riley story and helping Riley team members have the information they need to do their best work.

    Q: What are your early impressions? Do they match what you expected?

    A: I have been pleased to be welcomed into a culture with values that I respect and that align so closely with mine. While all of the hiring activity was virtual, I had several interviews and conversations that helped me to develop a good understanding of Riley’s culture and work ethic.

    Q: As a new team member, your perspective is important. Any surprises (good or bad)?

    A: I have been impressed by how my new colleagues live and model the Riley values. I have been struck by their compassion for each other and for the patients and families we serve. I don’t think I’ve been in a meeting yet where I haven’t seen that on full display. It has not escaped my attention how devoted and immersed they are in helping people, particularly in the midst of the COVID crisis.

    Q: How did your past professional and personal experiences prepare you for this job?

    A: I’ve been very fortunate to work for some of the best companies in this community. Originally from Evansville, I began my career here at The Indianapolis Star, where I had the opportunity to learn from and work with so many great journalists. I’ve also worked for Indianapolis Power & Light Co., where I worked with people who were dedicated to providing a vital service to the community every hour of the day and every day of the year. And I’ve worked for Eli Lilly & Co., where I had the opportunity to experience bringing life-changing and life-saving solutions to people in a way that I hadn’t been involved with before.

    And then there was my work as a longtime volunteer for Girl Scouts of Central Indiana, which allowed me to help girls and women develop and use leadership skills and give a voice to issues that matter to me and to them. Community and service have been a big part of my professional and personal life. I look forward to using all of those experiences in my Riley career.

    Q: How does it feel to take on a new job in a hospital during a pandemic?

    A: I’ve watched the pandemic play out like so many others on the outside – fearful and uncertain of what to do next; hopeful and appreciative of what people are doing to help others. It’s been humbling and reassuring to get a look at all of that effort, expertise and care from the inside.

    Q: What is your take on IU Health’s focus on diversity and equity efforts?

    A: Diversity and equity are very important to me both personally and professionally. It has never been more important for everyone – from individuals to companies and organizations to educational and health-related institutions – to take actionable steps that create a climate of true diversity, equity and inclusion for all people. Not only is that ethical and humane, but our children are watching and will follow our lead.

    Q: What should I have asked you that I did not? Any special talents or interests?

    A: I have a big family, including five sisters and a bunch of nieces and nephews. I am the favorite auntie, and all the babies love me (LOL). When they get to be pre-teens and teenagers, not so much. I played the flute in grade school, high school and college. So a few years ago, I bought myself a beautiful teal-colored flute, only to find I don’t even remember very many of the notes. I hope to take lessons someday.

    I get cabin fever, so social distancing in the house has been tough. During COVID, I took up gardening with a friend, even though I don’t really like being in the dirt. I’m struck by the beauty and by nature’s timing. But when I saw my first tomato worms, that was almost enough to drive me indoors!

    I discovered the DJ “D-Nice” (part of the hip-hop group Boogie Down Productions) and his Club Quarantine. I’ve been to so many virtual party nights – it’s really been the highlight of this time. When the world opens up and D-Nice has a live party, I’m going no matter where it is. Something funny about this is that I did NOT know him well before February/March. I’m usually more of a Kem, Mary J. Blige and Anthony Hamilton fan.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/at-35-her-heart-belongs-to-riley At 35, her heart belongs to Riley 2021-02-14T14:25:00-05:00 2021-05-24T08:59:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Tracy Ziegler-Sanders was too young to remember when she first became a Riley kid. But at 35, she embraces the label today with all her heart.

    Tracy Ziegler-Sanders Baby Picture

    Her heart is what connected her to Riley Hospital for Children as a newborn, and she hasn’t skipped a beat since.

    Ziegler-Sanders was born in March 1985 in Tipton, Indiana. Her parents, Richard and Tena Ziegler, didn’t know anything was wrong with their baby girl until she was delivered.

    She was blue.

    Tricuspid atresia was the diagnosis. It is a congenital heart defect in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle. It is considered rare, affecting 1 in 15,000 births, and it occurs equally in boys and girls

    Baby Tracy was rushed by ambulance to Riley, about an hour away, for surgery, while her mother had to remain in the Tipton hospital for a few days. Tracy’s dad headed down to Riley to be with her.

    “I remember my mom always telling me we didn’t have a chance to find out ahead of time that something was wrong, but she was always kind of glad that she didn’t know when she was carrying me, because today when moms find out, they have all that time to think about it.”

    Despite her heart defect, Tracy had one thing going for her – she weighed nearly 10 pounds at birth.

    “The doctor told my mom that was good because I was hearty and it helped me,” she laughed.

    Tracy Ziegler-Sanders Baby Picture

    At the age of 5, she underwent open-heart surgery to improve blood flow to the heart and lungs. Dr. John Brown, the world-renowned heart surgeon at Riley who recently retired, performed the Fontan procedure on the kindergartner.

    The procedure involves disconnecting the inferior vena cava – the largest vein in the body – from the heart and routing it directly to the pulmonary artery. Usually a large tube called a conduit is added to make the connection.

    “I remember parts of that,” Ziegler-Sanders said during a phone call from her home in Elkhart, Indiana. “I was in kindergarten. I think I was in the hospital for several weeks.”

    Imagine her surprise when 21 years later, she was back at the same hospital, with the same surgeon by her side.

    “In 2012, when I found out I was going to have to have it again, Dr. Brown came in, shook my hand and said, ‘You don’t remember me, but I remember you.’ That’s probably the best feeling in the world to know that the guy who did the original surgery still remembers you,” she said.

    “He had the biggest smile. You could tell he was proud of how well I’d done for that many years. You could tell the confidence he had in what he was about to do, and that is something that makes you feel so much better when you’re going into that kind of operation.”

    “GOD HAS A BIGGER PLAN FOR YOU”

    Growing up, Ziegler-Sanders said, her life seemed normal to her. She lived on a farm, and she barrel-raced horses in rodeos alongside her mom. She played softball when she was younger, then switched over to managing the team when it became too hard to keep up.

    In high school, she knew she wanted to letter in a sport, so she chose golf and lettered all four years.

    Her darkest time over the last three-and-a-half decades was her senior year in high school when a blood clot sent her back to Riley for several weeks. She missed all of her school’s homecoming activities and slipped into a depression that she now recognizes was borne out of her situation and her youth.

    “High school was hard because that’s when you’re figuring out things,” she said. “When you’re younger, smaller things are bigger to you.”

    Ziegler-Sanders Wedding Photo

    Now married with an 11-year-old stepson, Ziegler-Sanders said she has a beautiful life, but her 17-year-old self couldn’t see that in her future.

    “What I wouldn’t give to go back and tell her,” she said.

    When asked what else she would tell her teenage self, the tears start to fall.

    “I wish she would have seen all the possibilities. I would tell her, ‘God has a bigger plan for you, and you don’t even realize it.’ I just wish I would have known how awesome it was going to turn out.”

    Ziegler-Sanders said her work as a certified nursing assistant on the heart floor at an Elkhart hospital inspired her to go back to school to study nursing.

    “I realized how much I enjoyed helping patients right after surgery on the cardiac floor especially. I knew firsthand what my patients were going through. I learned quickly that if I let them in on my secret, show them my scar, it gave them a lot more confidence.”

    That’s exactly what Riley cardiologist Dr. Mark Ayers and nurse practitioner Nichole Gralia did for her when she went in for checkups. She found out early on that they were Riley heart patients as kids too, so she has been able to turn to them with questions over the years.

    RILEY IS HER SECOND FAMILY

    Tracy Ziegler-Sanders at Riley Hospital

    Ziegler-Sanders will turn 36 next month, but as a congenital heart patient, she continues to be seen at Riley.

    “I refuse to go anywhere else,” she said. “It’s like a second home to me. I don’t get nervous. I look forward to seeing all the people who are always rooting me on.”

    As a child, she saw Dr. Donald Girod in cardiology, then transitioned to Dr. Adam Kean. Recently, she has seen Dr. Larry Markham, division director of pediatric cardiology.

    It was Dr. Markham who suggested she share her story, in hopes that it might help others, especially young parents whose children have been diagnosed with a heart problem.

    Ziegler-Sanders is passionate about doing just that. She joined a couple of Facebook pages a few years ago that share information about tricuspid atresia and other heart defects.

    “I noticed parents would come to the page and say they just found out the baby they’re carrying has this.”

    They were desperate for reassurance, so she would post a photo of herself and tell them she has lived with the heart defect for 35 years. Not just lived, but thrived. She leads an active life with her family, enjoying hiking, fishing and working out.

    She tells young parents: “I’ve had these procedures that your child might need. It’s not going to be easy, but it’s going to be OK. Don’t let this be something that just rips your dreams apart. You can still have all that.

    “It can still be a beautiful life.”




    ]]>
    https://www.rileychildrens.org/connections/being-a-heart-parent-is-a-privilege-but-sometimes-it-feels-like-a-curse “Being a heart parent is a privilege, but sometimes it feels like a curse” 2021-02-11T13:43:00-05:00 2021-10-19T16:26:54-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Congenital Heart Defect Awareness Week is not just a hashtag to Dorie Medler and her husband, Jed. It is deeply personal.

    The young couple became members of an exclusive club two years ago when their first child, Josiah, was born with multiple heart defects. Membership in that club exacts a toll on them they never expected. Countless tears and never-ending fears for the health of their little boy.

    But there is also laughter and love. So much love.

    Through it all, the southern Illinois parents have put their faith in Riley Hospital for Children, handing their son over to surgeons from the time he was barely a week old.

    Josiah baby photo at Riley Hospital for Children

    Josiah was born with dextrocardia, hypoplastic left heart syndrome, pulmonary atresia and transposition of the great arteries.

    As renowned Riley heart surgeon Dr. John Brown put it to the couple when he met them before Josiah’s birth: “Your baby has a strong beating heart, but some very bad plumbing that we have to fix.”

    Now 2 years old, Josiah is a happy, goofy toddler with big, brown eyes and a melt-your-heart smile. It’s been a long road to get here, and there are many more hurdles to come, but Dorie wanted to share parts of her family’s journey with other heart moms and dads.

    So she poured out her emotions in a diary of sorts, which we have linked to here.

    “Being a heart parent is a privilege, but sometimes it feels like a curse,” she says. “Every one of us has a different story to tell, and I thought I would share mine to offer encouragement to other parents and families.”

    Her life changed forever on Nov. 6, 2018, she said. That was the day her journey as a heart mom began.

    “Most moms will tell you that they got to instantly hold their warm soft baby and give it kisses. That wasn’t my situation at all, and it wasn’t for many of the heart moms I have met along our journey, either,” she writes.

    Dorie and Josiah smile towards the camera

    Josiah had to be resuscitated after the emergency C-section delivery.

    “A WHOLE NEW HEART FULL OF LOVE”

    “I waited for them to bring Josiah to me for what felt like an eternity. When he was carried over to me, I was instantly in love. I felt like I grew a whole new heart full of love just for him. I wish that was the case so I could have given him that heart when he needed one.”

    Josiah would need his first heart surgery nine days after his birth, and Dorie found herself caught up in feelings of guilt and depression. A Riley social worker helped her through it.

    “It sounds ridiculous to some, I’m sure, but sometimes when you’re struggling and you’re in that dark state of mind, you don’t care about anyone or anything,” Dorie writes. “Josiah was in surgery, and the social worker took a walk outside with me. It was freezing cold outside, but I was so numb to everything I wore slippers, sweatpants and a T-shirt. That walk was the first step I took to getting better.”

    Josiah got better too, and thanks to strong support from family and the CVICU team, Dorie, Jed and little Josiah were discharged the day before Christmas in 2018. Even though they were four hours away from Riley, the family received constant support from the hospital’s pediatric cardiology home-monitoring program, headed by nurse practitioner Dana Hartman.

    Dorie, Josiah, and Jed family photo

    Since then, Josiah has had additional, shorter stays at Riley for heart caths, ear tubes and his second open-heart surgery at about 6 months old.

    “The hemi-Fontan surgery worked wonders for our son,” Dorie said. “He felt so much better after and had so much more energy. Josiah has been able to enjoy playing and enjoying a surgery-free life for a little while.”

    Josiah is due back for a follow-up cardiology appointment at Riley next week, at which time they will discuss when his next heart catheterization will be and from there, determine when the third and final surgery to treat his hypoplastic left heart syndrome will be scheduled.

    LEAN ON OTHER HEART PARENTS

    The past two years have been an education for Dorie and Jed, but they would go through it all over again for their little boy. Now, they want to help other parents who may be just starting down that road.

    “When I was in the hospital giving birth to Josiah, I knew he had heart problems, but there was nothing that prepared me for what we would be going through as a family unit,” Dorie said. “It's messy, and it is extremely hard.”

    Collage of Josiah's journey at Riley

    That said, she regrets not getting more involved with heart parents earlier.

    “I say this because you meet so many parents who are or have previously experienced the same things. I truly believe that parents should have some kind of knowledge of what they’re going to be experiencing, or just an outlet where they can read, share their thoughts and experiences, and ask questions.

    “The people I have met along Josiah's journey have been some of the most amazing humans I have ever met in my life. We all come together as heart families and help each other through every situation, even if we’ve never met in person. It’s really quite beautiful.”

    Dorie wants heart parents to know that it will get better. Lean on one another, talk to other parents, talk to nurses, interact with child life specialists, take a walk, take a shower, she says.

    “From one heart parent to another: You can do this!”

    ]]>
    https://www.rileychildrens.org/connections/teens-spirit-unbroken-after-accident-leaves-him-paralyzed Teen’s spirit unbroken after accident leaves him paralyzed 2021-02-09T09:02:00-05:00 2021-05-20T15:38:56-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    When Lucas Grounds’ adventure bike spun out on a covered bridge in northern Indiana and slid into a pole, the course of the teen’s future was forever changed.

    That fateful day, Dec. 10, 2020, the seven-time national champion motocross racer who had just signed a deal to go pro, suffered a life-altering injury.

    At first, he thought the slow-speed collision had just knocked the wind out of him. But soon he realized he couldn’t sit up. The high school sophomore’s spinal cord was severed.

    Lucas attending the Monster Energy AMA Supercross with his Riley nurse

    Yet today, his spirit remains unbroken.

    That spirit, that optimism, that resilience saw him through nearly two months of treatment at Riley Hospital for Children, where he was flown by IU Health LifeLine from IU Health Arnett Hospital in Lafayette, Indiana.

    It hasn’t changed the fact that he is paralyzed from the waist down, but Lucas will never be defined by this fact. He holds out hope that someday he might walk again, yet he is not slowing down in the meantime.

    The 15-year-old rural Martinsville boy has been racing dirt bikes since he was 4. The eldest of Justin and Shanda Grounds’ four children had the drive, the brains and the talent to do well in the sport, his dad said. He proved that over the years as he racked up win after win on the racing circuit, while continuing to do well in school.

    But he was smart enough to know that there was risk in the pursuit of his passion.

    On Saturday, Lucas was supposed to compete in the Monster Energy AMA Supercross at Lucas Oil Stadium in what was expected to be his last year of amateur competition.

    Instead, he would be a spectator at the event, along with his entire family.

    Still, he was excited, chattering good-naturedly as he prepared to leave Riley last week for a visit to Lucas Oil in advance of the competition. He’d been working hard to get ready for this.

    Lucas, his family, and his Riley support team at Lucas Oil

    FREE-WHEELIN’

    One day before his discharge from Riley Hospital’s inpatient rehab unit, Lucas, his parents and three Riley therapists got a tour of Lucas Oil in preparation for the big day.

    Lucas, whose mom once told him that the Indianapolis Colts stadium was named after him, spent 90 minutes propelling his wheelchair up ramps, around corners, across concourses and through tight spaces in a practice run designed as a therapy session. He checked out his seat in Section 345, along with the concession stands and the bathrooms.

    The idea was to get him and his family familiar with the venue so that when they returned on Saturday, there would be less anxiety about where to park, what door to go in and how to get to their seats.

    Occupational therapist Whitney Kozlowski, physical therapist Lindsay Schaefer and recreation therapist Jaye Hajduk each had goals they wanted to see Lucas accomplish on this trip, knowing how important it was to him and his family that he attend Saturday’s event.

    “I like that we could come out and get this figured out so they can really enjoy it and experience it as a family,” Kozlowski said.

    “We’ve practiced getting into dad’s truck and mom’s van, but this is first time we’re actually leaving,” Schaefer said. “I want him doing more on his own, versus me helping him.”

    She watched, ready to step in to help, as Lucas shifted from his wheelchair into the passenger seat of his mom’s van. That transfer required significant upper body strength on his part as he pulled his 6-foot frame up and into his seat. But he made it look easy.

    Lucas has an easy way about him. He has made friends with patients and staff at Riley and even helped motivate other kids in rehab, Hajduk said.

    “He joins all the activities. He always wants to be engaged,” she said.

    And when other patients who are facing similar life-changing injuries see Lucas become more and more independent, it gives them hope too, she said.

    “I think this experience went really well,” Hajduk said of the trip to the stadium. “One of the things I loved to see was him able to go really fast here in the wheelchair. We don’t have the room to do that at Riley, and he’s not going to be able to do that Saturday, but it was great to see him experience that freedom,” she said.

    Lucas Strong message delivered by Moose Racing

    #LUCAS912STRONG

    As he trailed behind his son who was watching heavy equipment operators carve out the dirt race course on the Colts’ home field last week, Justin Grounds reflected on the accident and how his son has faced his injury.

    “The first few days after the accident felt like …” his voice trails off. “But honestly, now, everything feels right. Anybody that rides a dirt bike, especially competitively, they know there’s a chance of injury. You just always try to avoid the big one,” he said.

    Through it all, No. 912 (Lucas’ racing number) has had a tremendous attitude, his dad said. He told a friend who also signed a deal to go pro that his accident will allow him to help more people.

    “He’s special,” Justin Grounds said. “With his positive attitude, you don’t have a choice but to be positive.”

    It helps that the family has received substantial support from the racing community and their Mooresville community, including making their home handicap-accessible and having a police escort to the high school after discharge, where the cheering student body gathered to welcome Lucas home.

    On Friday, the day he was discharged, Lucas’ emotions got the better of him at times as he talked about seeing his family again after two months in the hospital.

    Lucas prepares to be released from Riley Hospital for Children

    But the joy on the faces of his siblings, his parents and his care team said it all.

    “The excitement, the nerves … going home is always a lot,” Schaefer said, adding that it’s important to process those emotions, not only the patient but the entire family.

    In an Instagram post days after Christmas, Shanda Grounds acknowledged the difficult road ahead, but shared one of her daily prayers: “Today’s prayer request is for Lucas to be light in the heart and (for) God to help him through the difficulties he will face. … As always I want to pray for all the kiddos up here at Riley and at every children’s hospital. God is all over this. I believe in miracles!”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/her-heart-was-broken-but-fast-action-saved-this-baby Her heart was broken, but fast action saved this baby 2021-02-04T11:58:00-05:00 2021-02-06T13:59:01-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Cami Elsasser knew the baby was coming.

    Fast.

    While on the phone with the birthing center down the street from her Fort Wayne home, her water broke in the tiny half-bath off the kitchen. She yelled for her husband, Eric, when she felt the baby’s head poke through.

    It was all adrenaline at that point, Eric said later.

    “The head was out, it was pretty quick – two pushes and I caught her,” he said. “The harder part was figuring out the logistics after she was born.”

    It happened so fast they didn’t have time to grab any extra towels or sheets. He handed the baby girl to his wife, while they were on speaker phone with the midwife.

    When Cami stood up, she felt her placenta starting to fall, so while holding her daughter in one arm, she and her husband lunged to grab the placenta before it fell to the floor. Eric put it in the first thing he could grab – a Target bag – and looped it around Cami’s wrist.

    From the first contraction at 12:47 a.m. to birth at 2:19 a.m., just 92 minutes had elapsed. But their whole world was about to change.

    TEN FINGERS, TEN TOES

    Scarlett Rose Elsasser was, by all appearances, perfect – if not a little impatient to enter the world. She weighed 8 pounds, 5 ounces at birth in late November, her color was good, and her delivery was smooth, albeit unorthodox. She is Cami and Eric’s second child, so they knew labor might progress a little faster, but they figured they would have at least a few hours to get ready.

    Scarlett had other plans.

    After making sure his wife and baby were OK, Eric gathered up their 4-year-old, wrapped Cami in a robe, bundled up Scarlett and drove to the birthing center less than a mile away, where mom and baby were declared healthy and sent home.

    They returned 24 hours later for another well check. All good.

    Cami took Scarlett to the family’s primary care provider at three days old, two weeks, then again at one month. It was at that one-month visit – just days before Christmas – that things rapidly changed.

    The physician, a close friend of Cami and Eric’s, noticed an odd heart noise. It wasn’t a murmur, but it didn’t sound quite right. She told the Elsassers that she would feel better if they took Scarlett in to see a pediatric cardiologist in her practice.

    “It was hard for her to tell us right before Christmas,” Cami said. “The last thing she wants to tell anybody is that there might be something wrong with your baby’s heart.”

    But it turned out to be a precious gift.

    A week later, Dec. 29, they returned to see the cardiologist.

    “You could tell they didn’t expect it to be anything huge,” Cami said. “They started with a standard EKG, and the technician delivered it to the cardiologist.”

    But within minutes, the technician returned and said she needed to run it again.

    When those results mirrored the previous ones, the cardiologist came in and told the couple their daughter’s heart tests were abnormal and they needed to do an echocardiogram, an ultrasound of the heart.

    “As soon as they started, they stopped it because Scarlett became fussy and the cardiologist knew what the problem was,” Cami said.

    EMERGENCY TRIP TO RILEY

    From there, things escalated. The Fort Wayne cardiologist got in touch with Riley Hospital for Children in Indianapolis, and arrangements were made to fly 5-week-old Scarlett to Riley via IU Health LifeLine.

    It was all too surreal for Cami and Eric, who could only see a perfectly healthy baby. Timing was critical. Scarlett was alive and well at the time, but she needed surgery as soon as possible, they learned.

    “All of the sudden, we’re in the ER and she’s getting in a helicopter. Her heart was not healthy, but we wouldn’t have known that without the heart monitors, which kept alarming when she cried,” Cami said.

    Her parents followed by car, and by the time the couple arrived at the hospital a little over two hours later, the Riley team had confirmed the Fort Wayne cardiologist’s suspicion and diagnosed her with a rare congenital heart defect called ALCAPA (anomalous left coronary artery from the pulmonary artery).

    This is where Riley cardiothoracic surgeon Dr. Mark Turrentine and his team entered the picture.

    Baby Scarlett is lucky, he said this week, five weeks after he performed open-heart surgery on her to reroute her left coronary artery from the pulmonary artery back to the aorta to establish a good flow of oxygenated blood to both sides of her heart.

    Riley sees three to four cases of ALCAPA a year, so it’s not unique, but it is rare. One in 300,000 babies are born with this heart defect.

    RILEY WAS READY

    What is unique about Scarlett is that her problem was diagnosed several weeks earlier than most children born with the disease, leading to earlier intervention and less long-term damage to her heart, Dr. Turrentine said. Her prognosis for a fairly normal life is good, he believes.

    “That curiosity by their primary care physician – saying ‘I’m hearing something not quite right’ – not everybody would pick up on that,” he said. “That led to being sent to the local cardiologist, who has a connection with our Riley cardiologists, and there was a rapid transfer, rapid diagnosis and a fairly rapid repair.”

    He was so impressed that he wrote a note to the Fort Wayne physician, Dr. Anna Menze, grateful for her diligence and for the network of care Riley counts on throughout Indiana.

    “Here’s a story that speaks to the quality of care out in the communities in Indiana,” Dr. Turrentine said. “It speaks to what can happen with the linkage to Riley; it speaks to how we’ve created a highly integrated heart center that functions efficiently and with high quality, and this just worked out the way you would want it to work out. It’s just a great story for this family all around.”

    For their part, Cami and Eric couldn’t be more grateful to everyone involved in their daughter’s care, including the doctors and nurses at Riley.

    “Our overwhelming feeling is just absolute gratitude for the treatment we received,” Eric said. “There’s not a single thing I could complain about.”

    GUARDIAN ANGELS

    It’s the nurses that Cami will always remember. In fact, she wrote notes to each of them before leaving Riley on Jan. 6, just one week after Scarlett’s surgery.

    “The nurses are beyond incredible at Riley,” she said. “They focus on the mental health of the parents too, and that’s huge. They were so kind to Scarlett, and that’s what means the world to you as a parent.”

    She’ll never forget the night before surgery when it was so important to keep Scarlett calm to avoid any more damage to her tiny heart. Crying would set off her alarms, sending a panic through her parents.

    “That whole night we held her and prayed she didn’t cry,” Cami said. “Every time she fussed a little bit all the alarms would go off and it looked like she was having a heart attack. It was terrifying.”

    But Cami and Eric (and Scarlett) had a guardian angel that night named Julia Doyle, a nurse who usually works on the step-down unit but was pulled over to the CVICU that night.

    “She sat with me and helped me through it,” Cami said. “She kept us calm. We were her only patient that night, and I can’t even tell you how much she meant to me. Each nurse meant so much. We had the perfect nurse at the perfect time. They all mean so much. They get you through the really hard times.”

    Those nurses, the cardiologists, the Heart Center team, the surgeons – all contribute to a top-ranked pediatric cardiology program, a fact that Dr. Turrentine believes we don’t celebrate often enough.

    “We’re very understated in this state, but every now and then, you have to remind people what we have here,” the surgeon said.

    Of the 120 programs that contribute their outcomes data to the Society of Thoracic Surgeons congenital database, Riley is one of fewer than 10 with the highest quality rating (three stars) from the STS. Last year, the cardiology and heart surgery program at Riley was ranked fifth in the nation by U.S. News & World Report.

    GRATEFUL PARENTS

    The Elsassers knew none of this when their baby was born, but all of it came into play to save her.

    From a well-baby visit to a life-threatening emergency that might have gone undiagnosed for another month or two if not for a physician who had a nagging feeling that something wasn’t right.

    The infrastructure was in place to connect with the Riley cardiology group, get emergency transport, be admitted into the congenital heart center at Riley and be in the operating room the next day.

    Riley has built one of the few truly integrated, comprehensive, congenital heart centers in the country, Dr. Turrentine said.

    “There are few that match up to what we’ve developed and designed, but we’ve also built this linkage to the communities throughout the state so that our cardiologists can read the echos and have a line of communication and a transport system that is excellent,” he said.

    “We don’t ever want to brag about ourselves and what we have, but on the other hand, you hate to have families in the state feel like they have to go out of state to get the highest quality of care because they don’t know what’s available here.”

    One week after her surgery, Scarlett was back home in Fort Wayne with her parents and big sister, Evelyn. At her one-month post-op appointment last week, doctors said her left ventricle ejection fraction is now considered normal.

    “This is so incredibly exciting for our family,” Cami said. “Her heart is still healing, and she has mild mitral valve regurgitation, but things are going in the right direction. We are so grateful for the incredible healing that has occurred.”

    So after a surprise delivery in the bathroom followed by open-heart surgery, Cami and Eric hope Scarlett is finished with the drama, at least for a while.

    “We are hoping for calm now.”

    Photos submitted and by Legacy Portraits by Kayte

    ]]>
    https://www.rileychildrens.org/connections/plastic-surgery-chief-brings-passion-for-innovation-and-collaboration-to-riley Plastic surgery chief brings passion for innovation and collaboration to Riley 2021-02-02T15:12:00-05:00 2021-05-25T11:34:27-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    After 11 years in Canada, Dr. Gregory Borschel is back home again in Indiana this year, taking on the job of division chief of pediatric plastic surgery at Riley Hospital for Children.

    Dr. Borschel, who graduated from Brebeuf Jesuit Preparatory School in Indianapolis, had been with The Hospital for Sick Children, otherwise known as SickKids, in Toronto for the past decade-plus.

    An opportunity to lead and grow the plastic surgery program at Riley, coupled with the chance to be closer to his two teenage children, was too good to pass up.

    Dr. Borschel receiving a shot

    With an appreciation for Riley’s collaborative culture, Dr. Borschel said he looks forward to being part of its team approach to care.

    “By nature, all these people who work in the specialties at Riley bring something special, so hearing the voices of as many people as possible, including the families and the patients, is critical,” he said.

    “I like to be part of a team, and I love bringing people together to form teams. The other thing I really like doing is developing new approaches to treating certain conditions.”

    His clinical work focuses on pediatric facial paralysis, nerve injuries, hand surgery and other plastic and reconstructive surgery. In addition, he has pioneered corneal neurotization to treat blindness in patients with neurotrophic keratopathy, a devastating condition in which the nerves in the cornea are, in effect, dead.

    Children with the condition likely are either born with it, or it results from tumors, he said. Other causes can include diabetes, trauma, herpes and – in some parts of the world – leprosy, an infectious disease that has been around since ancient times.

    “We came up with a way to help blind kids see using nerve transfers – corneal neurotization – a wonderful collaboration with ophthalmology,” he explained.

    The original treatment required a large, invasive incision, but he helped develop a minimally invasive approach that has been widely adopted.

    “I’ve been fortunate to collaborate with lots of specialties in the operating room, and we’ve come up with some novel solutions to difficult problems through teamwork. That would be the cornerstone of what I bring to Riley, a lot of experience working with people of different backgrounds,” said Dr. Borschel, who has traveled extensively and treated people around the world.

    “I’m a plastic surgeon by training, but I collaborate and operate a lot with orthopedic surgeons, neurosurgeons, general surgeons, ophthalmologists.”

    He recently met with Dr. Christine Caltoum, division chief of pediatric orthopedic surgery, to talk about trauma cases and how their teams can complement each other.

    “We are very excited to have Dr. Borschel here to lead the Pediatric Plastics Division,” she said. “We envision working collaboratively as we grow the pediatric hand and upper extremity offerings at Riley.”

    Dr. Borschel also oversees the treatment of burn patients, who frequently require multiple surgeries.

    “That team is a special bunch,” he said, after meeting a young patient who suffered burns over 95% of her body. “The burn nurses and Brett (Dr. Brett Hartman) – that is a very special dedicated group that should be cherished.”

    He also gives a shout out to the cleft and craniofacial team, which includes audiologists, nurse practitioners, dietitians, social workers, dentists, oral surgeons, ENTs, plastic surgeons and other specialties.

    “It’s a huge group, but they are really focused on getting the best outcomes for these kids. That’s a very special program where kids and families come in and it’s like one-stop shopping, where they see everyone and get all their needs addressed.”

    His first week on the job, Dr. Borschel worked with Dr. Josh Adkinson to care for a child injured in an auto accident. Together, they performed nerve transfer surgery to alleviate paralysis on one side of the patient’s body.

    Dr. Borschel poses outside

    “Dr. Borschel is an exceptional plastic surgeon and international leader with a unique experience in managing very complex peripheral nerve problems all over the body,” Dr. Adkinson said. “His clinical work and research are at the cutting edge of what can be done in plastic and reconstructive surgery.”

    That kind of advanced surgery is Dr. Borschel’s passion.

    “The goal is to bring in or develop the best strategies in the world for these patients with these traumatic injuries,” Dr. Borschel said. “Nerve injuries are a focus of mine. Facial paralysis is another focus.”

    Two patients – one from Europe and the other from Western Asia – are scheduled to come to Riley this quarter for facial paralysis surgery, he said.

    “I focused a lot on that condition in Toronto, and now I want to offer it to all the patients who need it in the region and beyond.”

    Dr. Borschel earned his medical degree from Johns Hopkins University School of Medicine. He completed his residency at the University of Michigan Medical Center in Ann Arbor, followed by a fellowship in Toronto, where he went on to join the faculty of SickKids and founded the Borschel Lab, dedicated to researching better treatments for peripheral nerve injuries.

    “Indiana University School of Medicine, the Division of Plastic Surgery and Riley Hospital for Children are fortunate to have recruited such a talented individual and leader,” Dr. Adkinson said. “I look forward to working with him to deliver state-of-the-art care for the children of Indiana and beyond.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/nicu-mom-honor-doesnt-give-up-so-how-can-i NICU mom: “Honor doesn’t give up, so how can I?” 2021-01-31T15:59:00-05:00 2021-05-24T13:46:47-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    For months, Jessica Rose has spent hours looking out the window of her son’s room at Riley Hospital for Children. It helps anchor her in reality as day fades into night in the NICU.

    Jessica Rose stares out the window at Riley

    Some days are clear and bright, some cloudy and gray, often reflecting her mood. But it was all blue skies and sunshine greeting her through that window Thursday morning.

    She took the opportunity to shower while her baby was with occupational therapist Brittany McFarland, and when she dressed and stepped out of the bathroom, she saw a message of hope outside the window on top of the Riley parking garage. It was directed at her and her tiny son with the big name, Honor Ace Alexander Rose Jackson.

    In big, bold letters were the words #HonorStrong.

    The surprise chalk drawing was the work of Riley music therapist Lauren Servos, in tandem with Riley art therapists who created the message Thursday after an overnight snowfall.

    Rose held back tears as she looked out the window.

    “It’s very touching,” she said, while cuddling 7-month-old Honor, who was born in June, three months premature. The fact that he is alive today is reason to celebrate, but the fact that others care so much for them means everything to her.

    “I know Lauren would do something like this,” Rose said. “The whole time we’ve been here, you could just see it in her eyes, her wishing with all her heart she could do something to cheer me up.”

    A MOTHER’S LOVE

    Servos was thrilled to be able to give Jessica this simple, but powerful, gift.

    Baby photo of Honor

    “Honor and Jessica have been through so much during this hospitalization, but their love for each other remains stronger than ever,” Servos said. “Honor has been a music therapy patient of mine for over six months. When he feels good, we sing songs and play with toys to help him reach developmental milestones. When he doesn’t feel good, I sing lullabies and play guitar.”

    The idea for the chalk drawing came from Rose, but she had no idea that Servos was working behind the scenes to make it happen.

    “I contacted my boss and got approval for the chalk art,” Servos said. “When I presented the idea to some other members of the psychosocial care team and the creative art therapists, many people were eager to help. Since the NICU is Honor’s home for now, we hope the artwork gives Jessica some joy and hope until her baby can come home with her.”

    Rose is grateful for the gesture and to know that her son has made an impact on those around him.

    “As we watch Honor get better, they’re her victories, too,” she said of Servos. “She’s helped us so much. She comes and sings to him. She holds him when I can’t be here. It means a lot to me.”

    PAINFUL MEMORIES

    This is not Rose’s first long-term stay at Riley with a child. Seventeen years ago, when she was just 16, she gave birth to a little girl, Jaylen, who spent nine months at Riley before she passed away.

    The memories are painful, but Rose knew this is where Honor needed to be. Seeing some familiar faces, including NICU nurse Chrissy Cary, who cared for Jaylen all those years ago, has been comforting, she said.

    “She’s amazing; she knows how to deal with me.”

    As Rose talks, she rocks Honor in her arms, even as he is connected to various machines and monitors. His brown eyes follow people around the room before they grow heavy and close, revealing long, beautiful lashes. Rose calls the lashes his super power.

    Baby photo of Honor

    Born at 27 weeks via emergency C-section, Honor weighed 1 pound, 10 ounces. He was delivered early to save his mother’s life when she developed pre-eclampsia, a life-threatening condition characterized by high blood pressure and organ failure.

    Today, he is a cuddly 12 pounds, 12 ounces, a boy full of personality who has charmed everyone on the NICU floor.

    “Honor’s a really big deal around here, aren’t you,” she says to her sleeping baby. “Everybody loves this little boy. When I’m not here, I know he’s loved on.”

    Count Dr. Brian Gray, pediatric surgeon, among his fans.

    “Honor certainly is a miracle baby,” Dr. Gray said. “I first operated on him when he weighed about 1 pound and was in septic shock. We could never find a source for his illness, and he amazingly pulled through with some antibiotics.”

    His tiny patient required several more operations, the surgeon said, “and he has kept on trucking through it all. I’m truly astounded every time I see his growth and progress in the NICU.”

    Rose is amazed as well. She admits that when he was first born, the fear of losing him kept her from bonding with him immediately. It’s not just the loss of her daughter 17 years ago. She has lost two more babies pre-term due to pre-eclampsia. Their names were Freedom and Pride.

    Twelve years ago, however, she gave birth to a healthy boy who is the joy of her life.

    “I had a perfect pregnancy with Dalen,” she said. “He is perfectly healthy, and he is eager to meet his little brother.”

    The brothers have been unable to meet in person due to COVID-19 visitor restrictions.

    “HONOR IS STRONG”

    With Honor’s father working out of state, Rose has been the one staying by her baby’s bedside as much as she can. But don’t call her strong.

    “What people knew about me for so long was that I’m the girl that had a baby that passed away,” she said, referring to her daughter from long ago. “People would say, ‘you’re so strong.’ It made me so angry. I am not the strong one. You have no idea what that baby went through. So when they started telling me that with Honor, I say, ‘Honor is strong,’ ” she said.

    “If I knew how to give up, I might do it. I haven’t had a choice. Honor doesn’t give up, so how can I? This boy has literally beaten death so many times.”

    When her little boy was born last June, she knew the odds weren’t good, and she prepared his dad for the worst, she said.

    “I thought for sure I was going to lose him.”

    But Honor kept fighting, so Rose did too.

    And on this day, she has just finished reading him a new book she picked up on the way to the hospital. It’s a baby version of Dr. Seuss’ “Oh, the Places You’ll Go.”

    “Baby, oh, baby, the places you’ll go! The worlds you will visit, the friends you will know.”

    She wonders about the places her little guy will go, but right now she just hopes he’ll be headed home soon.

    “He’s touched a lot of lives,” she said. “I think he’s gonna shock us all.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/beyond-nursing-she-wants-patients-and-parents-to-know-im-here-if-you-need-me Beyond nursing, she wants patients and parents to know “I’m here if you need me” 2021-01-28T08:17:22-05:00 2021-01-28T08:17:22-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    As a kindergartner, Mary Claire Fagan loved nothing more than going to work with her dad, then a physician in Bloomington.

    She would plant herself on a chair or at a desk and watch with intense interest as the nurses went about their jobs.

    “I idolized those nurses there and I loved to hang out with them,” she said. “It taught me nothing about nursing, but it gave me a good feeling.”

    So perhaps it’s no surprise that she turned that feeling into a healthcare career.

    Fagan has been a nurse on the PICU at Riley Hospital for Children since July 2019 and was a tech on the unit for a year before that.

    “I love that you never know what kind of patient you’re going to get on the PICU,” she said. “As a new nurse, you need a supportive group around you in the ICU and because of the people around me, I was able to feel comfortable as I progressed to patients with higher acuity.”

    She laughs though when she remembers her first week or two on the job as a nurse.

    “As a tech, I could always say, I’ll get the nurse, but then I looked around and realized I was that person. I kept thinking I should be in teal scrubs right now.”

    She’s only half joking, but she has learned a lot in the past 18 months on the job. Not just nursing skills but how to really be present for her patients and their parents.

    Visitor restrictions typically mean only one parent is allowed to be with the patient, which puts a lot of stress on that person, Fagan said.

    “It’s made me realize they also need someone to support them, whether it’s grabbing a cup of coffee for them or whatever it may be. As much as it’s about the patients, it’s also about these parents,” she said.

    “They’re also struggling. If there’s anything I can do for a patient or a parent, I want to be that person for them in these critical moments. Beyond nursing, I want them to know, ‘I’m here if you need me.’ ”

    On her busiest days, she knows there’s always a nurse nearby ready to help her when needed.

    “I couldn’t feel more supported, so it makes me motivated to do my very best. I want to grow in the PICU. I want to be that person for new nurses, too.”

    One of those people for her has been PICU nurse Kelsi Lawless.

    “Kelsi is always very helpful to me, very supportive and positive. She’s like my wing woman. I look up to her a lot. She is a patient’s advocate, whether she’s had that patient for a day or for a month. That’s something I strive to be.”

    For her part, Lawless describes Fagan as “such a positive person and an amazing nurse.”

    “She always is going above and beyond. She has spent a lot of shifts with COVID patients too. She’s just an angel to our patients, truly.”

    Caring for patients with COVID-19 remains challenging, but Fagan said it has helped her hone her critical-thinking skills. And as more is learned about the virus, she believes the unit has gotten into a better rhythm when providing care.

    Outside of work, Fagan enjoys the occasional road trip in normal times but says she’s a homebody at heart, preferring to spend time with family. (Although there was that one time a couple of years ago when she says she decided to be adventurous for once and go to Rome.)

    She was thrilled earlier this month when her grandmother was able to get her first COVID vaccine at Riley and looks forward to the days when she can hang out with her again.

    Fagan thrives on routine and that includes her palate. Buttered noodles is a staple.

    When her co-workers saw a tiny bit of pesto on the pasta she was eating in the break room recently, they gave her a hard time, knowing that she’s a picky eater.

    “My unit has a pretty good read on me,” she laughed. “They know my quirks.”

    Fagan is eager to learn all she can in the PICU, then perhaps take on an educator role in some form.

    “I want to be the person people can go to and learn from,” she said.

    One of the things she has learned is that being there for all of the critical moments in a patient’s journey is not as important to her as being present for the smaller moments – the laughs and the smiles.

    “I was obsessive at the beginning about being there for the big things. But now I realize that my goal is just to brighten someone’s day. Sometimes it’s the little things that make a difference.”

    She recalls a former patient who was only on the unit a day or two for observation, but Fagan connected with the child’s mom in that short amount of time.

    “They were the sweetest family. With only one parent being there, I felt like it was my responsibility to say, ‘I’m here, I can be that second person for you.’ ”

    She received a letter from the mom a month later, which still amazes her.

    “It’s crazy to me that in those scary moments with their child that she sat down afterward and thought of me. I’m thinking I’m the last person she should think of. She is the one who was so strong here in the hospital taking care of her baby.”

    Sometimes it’s the little things that make a difference.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-pharmacists-worlds-collide-in-vaccine-effort Riley pharmacist’s worlds collide in vaccine effort 2021-01-26T08:43:20-05:00 2021-01-26T08:43:20-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Since mid-December, Michael McGregory, director of pharmacy at Riley Hospital for Children, has been hustling to ensure the delivery of COVID-19 vaccines to Riley.

    Simultaneously, he has worked with the Civil Air Patrol to see to it that vulnerable populations in remote areas of the Midwest also have access to the lifesaving vaccine.

    Talk about worlds colliding.

    Capt. McGregory joined the CAP as a volunteer pilot in 2016 and is now director of aircraft operations for the Indiana Wing. In this role, he was called upon to ready an aircraft based at Indianapolis Executive Airport in Zionsville for a flight to Minnesota, where pilots were standing by to deliver a load of vaccine to Indian Health Service locations from Sault Ste. Marie to Ann Arbor, Mich.

    The Civil Air Patrol, which serves as the official auxiliary of the United States Air Force, is a volunteer organization that supports American communities during times of emergency.

    While you may have seen footage of large-scale vaccine transport by the likes of FedEx and UPS, those large aircraft aren’t suited for more targeted drops in remote locations. The small general aviation aircraft piloted by professional volunteers with the CAP is one of the most cost-effective ways to distribute the vaccine, particularly with the speed required, McGregory said.

    “The drive time for a vehicle to go from a major airport hub to some of these locations isn’t feasible with the temperature storage conditions these vaccines require,” he said.

    His efforts earlier this month, alongside others within the organization, were extraordinary, said a CAP spokesman, but McGregory is low-key about his role.

    “It was more of that worlds collide kind of moment where over the weekend I’m switching between computers trying to get supplies and make sure everything’s running smoothly in our Riley clinic, while at the same time in my volunteer work trying to do our small part to make the CAP mission a success,” McGregory said.

    “I’m just really proud to be a part of two organizations on the front lines of the COVID response.”

    McGregory joined the CAP in 2016 after earning his private pilot’s license. He was looking for a way to use that skill while also helping his community, and CAP was the perfect opportunity.

    He soon learned about its cadet program for young people and encouraged his daughter to join.

    Last spring, Capt. McGregory and his 13-year-old daughter, C/MSgt. Emma McGregory, worked with the CAP, National Guard and Gleaners Food Bank to help distribute groceries at the Indiana State Fairgrounds and Indianapolis Motor Speedway as part of a massive food giveaway for Hoosiers in need after the coronavirus led to business closures and high unemployment.

    CAP’s Indiana Wing helped in the distribution of 1,467,720 meals to Hoosiers over the spring and summer.

    Back on the front lines at Riley, McGregory said the hospital’s vaccine response has been “fantastic.”

    “Our team has really come together, and it has been inspiring to see everybody work to provide that service both for our team members and now for our community. It’s a really positive energy in the clinic,” he said.

    “Everybody’s been working additional shifts to help make it possible, and they’ve done an amazing job to make sure it’s a safe environment with proper distancing and minimizing waits in line. I just can’t thank them enough.”

    Currently, the Riley vaccine clinic and others throughout IU Health continue to vaccinate team members, as well as residents 70 and older. McGregory said Riley is vaccinating about 300 people per day for a total of nearly 10,000 shots so far.

    ]]>
    https://www.rileychildrens.org/connections/ive-spent-my-whole-career-at-riley-so-i-feel-like-ive-grown-up-here “I’ve spent my whole career at Riley, so I feel like I’ve grown up here” 2021-01-24T16:34:55-05:00 2021-01-24T16:34:55-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    For two decades, she has brought joy to kids at Riley Hospital for Children through special events, celebrity guests and fun activities in the Child Life Zone.

    Now, as she marks her 20th anniversary with Riley following a year like no other, Melissa Sexton has had to reimagine every facet of her job, thanks to COVID-19. No special events, no celebrity guests, no volunteers, no activity at all in the Zone.

    If 2020 turned our lives upside down, imagine the adjustments Sexton and her team have had to make on the fly.

    “It’s been a weird year,” says the supervisor for special events, the Zone, pet therapy, CCTV and contract services (massage therapist, cosmetologist, tech specialist) in a classic understatement. “I’m going from doing over a hundred in-person events with a thousand one-time volunteers to no events and no in-person volunteers in over a year.”

    And those volunteers are missed deeply, she said. “Our core volunteers so desperately want to be back in the building.”

    Sexton, who celebrated her 20th anniversary with Riley on Friday, longs for the days when we can all be together again, but she is also grateful for the things she has learned this past year.

    She has become a master at programming for Riley Kids TV, which airs 24 hours a day, seven days a week on closed-circuit TV. Daily game shows allow patients to interact with one another safely, while virtual concerts, magic shows and story hours add to the entertainment.

    There’s been a lot of trial and error over the months as she explores what works and what doesn’t, while also trying to get people on board with virtual events in a time of virtual overload.

    “It’s hard to manage and it sometimes feels very unsocial, but other times it really is the lifeline that’s keeping people in the moment.”

    ZONE TO GO

    Meanwhile, CLZ child life specialist Kim Ziegler has taken her show on the road with Zone to Go. Several times a week, she packs up games, crafts, Play-Doh and everyone’s favorite – Slime kits – on her cart and makes her way around the hospital, dropping off items to patient rooms.

    “Kim has been the one to make that work,” Sexton said. “She has activated it so well and completely pivoted from what she was doing.”

    Ziegler also leads Riley’s pet therapy program, which was put on pause when the pandemic hit. She and Sexton work hard to keep those two-legged and four-legged volunteers engaged even though they can’t come into the hospital and do the thing they love most – be with the kids.

    Occasionally, Riley Kids TV will include video of some of those volunteers going for walks around their neighborhood or doing tricks (the dogs, not the humans).

    “Kim is really focused on the cart, and I focus my attention on the closed-circuit television, making programs, partnering with other not-for-profits who are providing virtual entertainment, and trying to think of fun ways to activate our robots.”

    Most recently, those “robots” have been used for Indianapolis Colts and Santa Claus virtual visits.

    Ziegler and Sexton have taken their holiday parties on the road too, offering a full week of Halloween events and two weeks of fun in December where they went room to room providing crafts, games and special treats to patients at the bedside.

    One of the lessons they’ve learned through this is that the “party cart” needs to be part of their regular rotation, even when things return to normal.

    “Even when we’re back to regular parties, there are still going to be people who can’t attend,” Sexton said, “so we want to activate that cart to take up to patients in isolation or for kids who can’t come down. Our patients with cystic fibrosis cannot come to parties because they can’t be around one another. But they shouldn’t miss out on that opportunity, and now we’ve kind of figured out how to make it happen.”

    FANGIRL

    Keeping CLZ activities going, even if in a different form, is important to honor all of the donors who support the Garth Brooks Teammates for Kids Foundation, Sexton said. The country singer’s foundation paid for the CLZ, which opened in 2014. The outdoor zone, dubbed the Backyard, opened in 2017.

    Maybe that’s why she’ll tell you that meeting Brooks and his wife, fellow country singer Trisha Yearwood, at Riley has been one of her biggest thrills. And she has rubbed shoulders with her share of famous people.

    But that’s not what she’s here for, obviously. Like so many others, she’s here for the kids.

    “I’ve spent my whole career at Riley, so I feel like I’ve grown up here,” said Sexton, who actually grew up on a farm in Hendricks County, where she still lives with her husband, Steven. Together with her brother, they raise beef cattle, sheep and goats. She serves on the boards of Hendricks County 4-H and the Hendricks County Beef Cattle Association and is active in her church and the Modern Homemakers Extension Club.

    “I am a very involved person,” she said. “I thrive on social servantship.”

    In her two decades at Riley, she has seen both the physical space of the hospital and her department grow.

    “There were six child life specialists when I started, and now we’re a department of 28. That’s amazing. But what’s really special and why I stay is because the culture really hasn’t changed,” she said. “It has always been about the kids. Our Riley kids are what bring each one of us to work every day.”

    “A LIVING LEGEND”

    She might not realize it, but Sexton is one of the drivers of that culture, and in honor of her 20th anniversary, we asked some of the Riley team to talk about what she brings to the hospital every day.

    Jenna Yarnell, child life specialist and educator: “We are so lucky to have Mel as part of our child life team and the larger Riley team. She brings a wealth of knowledge to all that she does due to her commitment and dedication to Riley and our patients and families. When I first started at Riley, everyone told me that if I had questions or needed anything that I should ask Mel because she would know the answers or know where to find the answers, and I still find that true eight years later!

    Dr. Paul Haut, chief operating officer: “Mel was one of the first people I met when I started at Riley in May 2002 as director of the stem cell program. Immediately, I recognized her as an expert in child life and a critical member of our small, dedicated team. Mel is a passionate advocate for children and her teammates. She is always ready to lend a hand, lead an effort or be a shoulder to lean on. Over the past 20 years, Mel has left an indelible positive mark on Riley.”

    Sara Barnett, manager of Volunteer Resources and Child Life: “Mel is a living legend! She is interconnected with multiple community partners and groups within the Riley Children’s Foundation. She is a valuable resource for various departments throughout Riley. She answers to ‘Hey Mel,’ and people often say they need a ‘pocket Mel’ because if she doesn’t know the answer, she will find it. I am grateful for her service and would be lost without her.”

    Abigail Rainey, child life supervisor: “If you have ever worked with or been cared for by Mel, you know that she makes a positive impact. Her focus is always on others and how to make the hospital experience better for our community members. Riley is like an extended member of her family, and Mel is certainly an integral part of the Riley family. We are lucky to have her.”

    Kim Ziegler, child life specialist for the CLZ and coordinator of the pet therapy program: “Wow, how to describe Mel! She is one of the most talented people I know. She wears so many different hats in her role here at the hospital and does it with ease. When we have a need, Mel is the person to go to in order to make it happen. Not only is she an amazing child life specialist and supervisor, she is also a self-taught CCTV studio guru. With our studio programming, we’ve been able to reach so many patients and families with unique and interactive game shows at a time when we need them the most.”

    FOCUS ON THE KIDS

    Sexton will no doubt blush at the compliments, emphasize that she is part of a bigger team, and then get back to work. She has picked up other responsibilities as needs have arisen.

    “I have to be really flexible, and I’m doing things I wouldn’t normally have time to do – helping with staff support, activating tranquility spaces, working on staff morale projects – things not in my wheelhouse. I picked those projects up because someone needed to do them.”

    Her passion, though is for the kids. She reminds herself and everyone around her that, “Kids are always 100 percent kids. They’re just patients when they’re within the walls of the hospital.”

    Keeping them involved with activities even when they can’t be together in the playrooms or the zone not only helps them pass the time, it’s a reminder to them that other kids are in the hospital too, she said.

    “It’s also a nice way to highlight for our patients that people outside the hospital still want to do something for them. That’s a big piece of special events – let the patients and family know that the community cares for them. It’s a nice reminder and a way for the community to give back.”

    Whenever things do return to normal, Sexton doesn’t want to forget the lessons learned the past year, even as she talks about her hopes for this year.

    “Number one, I hope that everybody who can get vaccinated chooses to get vaccinated because that gets us to whatever this new normal is going to be faster. Take advantage of the science and the effort that’s gone into the vaccine.

    “Number two, I hope we can get back to being together soon and getting all the resources that are available to Riley kids 100 percent back.

    “Number three, I hope that the lessons that we have learned from 2020, the good lessons and the hard lessons, aren’t wasted. The biggest lesson for me would be embrace flexibility, be willing to try and fail. Don’t waste the hardships because there’s a reason you’ve had to learn that lesson.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/she-has-a-new-heart-but-the-same-old-sass She has a new heart but the same old sass 2021-01-21T12:25:00-05:00 2021-05-21T15:33:21-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    She has lost count of the days her daughter has been in the hospital, but Mariah Gavia-Locke is definitely counting them down until the day 5-year-old Makayla Owens comes home.

    Makayla poses with a smile as she plays

    It’s been well over a year since Makayla was admitted to Riley Hospital for Children at IU Health, her young heart too weak to do its job. Born at IU Health Methodist Hospital in August 2015, she was transferred to Riley with a congenital heart defect – hypoplastic left heart syndrome – and has been in and out of the Indianapolis hospital ever since.

    In August 2019, she was re-admitted to Riley as her condition worsened. It seemed her best hope was a heart transplant. Meanwhile, she spent birthdays and holidays in the Riley Heart Center, where team members grew to love her like their own.

    On Oct. 8, 2020, Riley cardiothoracic surgeon Dr. Mark Turrentine transplanted a new heart into Makayla, and her recovery has slowly continued. In late November, the heart center team said goodbye to the sassy young girl with a small parade (shared virtually so others could join in) as she moved over to the inpatient rehab center, where her recovery continues.

    There, she works with physical, occupational and speech therapists several times a day to regain her strength, flexibility and motor skills, while also shoring up her confidence for a life outside the hospital.

    “She’s doing a lot better,” Gavia-Locke said. “We’ve had a whole bunch of ups and downs over the past year … but now she has a new heart and she has to start working to get better.”

    During her time in the heart center, Makayla got a little spoiled, her mom said.

    “She is used to getting her way, and she thought she could do the same over in rehab. She’s always been her little sassy self and that hasn’t changed.”

    Even though she can be tough, Makayla is a happy child, Gavia-Locke said.

    “She has such a great spirit. It’s good to see how she can still smile. Through all of it, she still has her personality.”

    TIME TO WORK

    Occupational therapist Whitney Kozlowski arrives in Makayla’s room on a Friday morning, ready to take her down to the rehab gym. But therapy actually starts before they arrive in the gym, with Makayla maneuvering her wheelchair out of the room and down the hallway, stopping here and there to wave to other patients.

    Makayla working through physical therapy

    Even when they arrive in the gym, their work looks more like play, and that’s the idea, Kozlowski says as she helps Makayla step out of her wheelchair and lie down on a flat scooter, which she propels with her hands and arms.

    Everything they do is designed to build up Makayla’s strength – to keep her moving forward, not sliding backward.

    And with that, she scoots over to a giant dollhouse, where Kozlowski encourages her to reach for the dolls and ponies she wants to take with her on a ride around the gym.

    “I need help,” Makayla says.

    “You gotta reach out with your arms,” Kozlowski tells her. “Stretch.”

    Makayla lets out a tiny whine before following Kozlowski’s directions. Soon, she has gathered two little ponies, a tiny chair and a miniature sled to take with her on her “adventure” across the room.

    It’s all a balancing act in therapy – encouraging patients to do as much as they can, while supporting them when their body or their spirits sag.

    Kozlowski challenges her young patient to reach farther, pull harder and be braver throughout the session, the first of two that day.

    When one of the ponies falls off the scooter, Kozlowski suggests getting a bandage to put on it. Another form of therapy. Makayla uses her fine motor skills to peel open the paper, then pinch the plastic and apply the tiny strip across the pony’s flank.

    As they finish up and wheel back over to Makayla’s chair, she wraps her arms around Kozlowski, who encourages her to push her body up, then sit back in the chair.

    “My feet hurt,” Makayla says. “You’re almost there,” Kozlowski replies.

    Even when she is seated again, she’s not finished.

    “Can you buckle your seatbelt,” Kozlowski asks, but it’s not really a question. “Click it or ticket. You can do it.”

    And she does.

    Makayla gets pushed in her wheelchair throughout the Riley halls

    “MORE TO HER STORY”

    Waiting in her room when she returns is mom, who has two other children at home doing e-learning with their aunt so Gavia-Locke can come to the hospital.

    Makayla, who is under the care of cardiologist Dr. John Parent, hasn’t seen her older brother and sister in person since late 2019. They were able to visit before flu restrictions went into effect, but then flu season was quickly followed by the COVID-19 lockdown.

    FaceTime has taken the place of hospital visits, but next week this 5-year-old is expected to head home to be reunited with her siblings. There, the Christmas tree is still up, with presents waiting for Makayla, her mom said.

    She is grateful to the Riley team for the love they’ve showered on her daughter and for the extra time they’ve spent with her, sometimes even after their shifts have ended.

    “They do it from their hearts, they spend extra time with Kayla. That’s their spirit, and it’s beautiful.”

    It’s been a long, hard road, Gavia-Locke acknowledged, but her faith has remained strong.

    “You have to hold onto hope,” she said. “The Lord didn’t make her just for her to die this way – that’s what I held onto. There’s more to her story.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-physician-incredibly-relieved-to-bring-her-parents-in-for-covid-vaccine Riley physician “incredibly relieved” to bring her parents in for COVID vaccine 2021-01-19T08:54:00-05:00 2021-01-19T09:22:47-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    It wasn’t the needle going into her arm that made her cry. It was the tremendous sense of joy and relief that came with it.

    Julie Drake received her first dose of the Pfizer vaccine to protect against COVID-19, alongside her husband, Steve, at Riley Hospital for Children on Sunday.

    “You can take my picture if you don’t mind tears,” she said, as Riley nurse manager Nicole Geist prepared to administer the shot.

    The Drakes, both 70, are the parents of Riley nephrologist Dr. Amy Wilson, who brought them to Riley over the weekend to get their shots.

    Dr. Wilson has lost plenty of sleep over the past 10 months as she worried about her parents contracting the virus. When vaccinations opened up to Hoosiers 70 and older last week, she was quick to register her parents at Riley.

    It was not the closest vaccine site for the couple, who live in Lebanon, Indiana, but Riley had open spots a full two weeks earlier than a site closer to their home. Dr. Wilson wasn’t waiting around.

    “Probably most physicians have shared these sentiments of just chronic worry for our parents over the last many months,” an emotional Dr. Wilson said after her parents had received their vaccine. “None of us have to invoke our imaginations to know what COVID can do.”

    As a pediatric dialysis doctor, she couldn’t take time off during the early weeks and months of the pandemic, nor could she work from home. Her husband juggled working from home and caring for their two kids, while she worried about how to keep her patients safe and her family safe.

    As the months wore on, a routine developed. But it was a “routine without end,” she said.

    “We didn’t know how long we would continue doing this, and there were a lot of days where it felt like it would be forever. This winter has been a really up and down time … we’ve had many more kids hospitalized with COVID, many more kids critically ill with COVID.”

    So news of the vaccine and its availability to seniors was welcomed by Dr. Wilson and her parents.

    The Drakes didn’t have to be coaxed into getting the vaccine. They’ve been eager for the opportunity, even texting their friends about when and where to get theirs.

    Dr. Wilson said her mom likened the group texts about the vaccine to the rush by her and her friends – then young moms – to find Cabbage Patch dolls in the 1980s when that popular toy was so scarce.

    Julie Drake, who began making masks early on in the pandemic, said her physician daughter was pretty “militant” about their safety, dissuading them from taking any unnecessary chances. Naturally, they appreciate her vigilance and her role as a “healthcare hero” at this time in history.

    “It makes you so proud, but you always worry,” Drake said.

    The mood was hopeful in the Riley Outpatient Center vaccine clinic over the weekend, where a steady stream of senior citizens came through for a shot in the arm – literally and figuratively. The entire process takes less than 30 minutes – that includes a few minutes for the shot and a 15-minute observation period afterward to ensure that vaccine recipients experience no side effects.

    Julie Drake said she knows how worried her daughter has been, and she and her husband long to be able to see their grandchildren more often, particularly in the colder months.

    Over the summer, the Drakes were able to get together outdoors on their 16-acre property with their two daughters and their families, who camped in their yard while still social distancing and wearing masks. But the colder weather has intensified the isolation many older people feel.

    “It’s hard to be a physician and to know really how horrible COVID can be, particularly in that age group, and know that there’s not a good way to prevent it except to keep your distance,” Dr. Wilson said.

    Simple and yet so very hard.

    For her part, Dr. Wilson said the overwhelming relief she felt at seeing her parents vaccinated Sunday vastly eclipsed the feeling she had when she completed her own two-shot series, as important as that was.

    “I’m incredibly grateful to have been able to get the vaccine early as a healthcare provider, but I have been less worried about myself than I have been about my parents.”

    When her 11-year-old son told her that his “mimi” said she was excited to hug him and his 14-year-old sister again, he said, “I thought I better ask you if that’s really OK.”

    It will be OK soon, she believes, and she can’t wait.

    “They’ve missed each other. To be able to feel like the kids can be with them again safely will be a big relief.”

    For those who may still be wary of the vaccine, Dr. Wilson has this message:

    “I know that there’s a lot of hesitancy in the community about the vaccine. I don’t know how to take that away, and so I feel like it’s important for me as a physician/pediatrician to say I rolled up my sleeve and I’ve had both of my doses, and I’m bringing my parents in to get their doses. I don’t know of any better or more powerful way to say that I think this is safe and I think it’s our ticket out of this.”

    Find out if you are eligible for a vaccine and register here.

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    https://www.rileychildrens.org/connections/nursing-can-be-a-roller-coaster-ride-especially-during-covid-19 Nursing can be a roller coaster ride, especially during COVID-19 2021-01-17T17:09:51-05:00 2021-01-17T17:09:51-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Angie Parsley always knew there was something more. She had a husband she loved, two kids she adored and a job she enjoyed.

    But the call to nursing kept ringing in her head.

    It was a rare quiet moment on the couch one day, she said, when she had an epiphany of sorts. It was time to follow her dream.

    “In high school, I wanted to become a nurse, and I always knew I wanted to be a peds nurse if I was going to be a nurse. There was no other option for me.”

    So while her kids were preschoolers, she enrolled in nursing school. Getting started was the hard part, she said, but she had good support from her husband and family.

    Three months before graduation, she and her husband, Rob, learned that their son, Graysen, had type 1 diabetes. Now she was getting an education in healthcare from an entirely different vantage point.

    Graysen, now 7, is doing well today. He sees Dr. Juan Sanchez in endocrinology at Riley Hospital for Children.

    A RILEY MOM AND NURSE

    In a matter of months, Parsley became a Riley mom and a Riley team member, starting her tenure as a registered nurse on 9 East in September 2019.

    “I don’t think there was a better choice for me at all.”

    Just six months later, she and all of her peers at Riley were preparing for something they never expected – a pandemic.

    “It felt like everybody else was learning together, like everybody was a new nurse then,” she said.

    The hardest part in the beginning was the unknown, Parsley said. The virus has revealed itself over the months to be easily transmissible and deadly.

    For that reason, Riley and all of IU Health instituted restrictions on visitors to the hospital. For pediatric patients, that means just one caregiver is allowed per day. The policy is hard on families, but it’s hard on nurses too, Parsley said.

    It goes against their instincts. Nurses appreciate how important the presence of family can be in the recovery of a patient and how heavy a load it is to bear alone.

    “I remember with Graysen in the hospital, I couldn’t imagine doing it all by myself,” Parsley said.

    She was lucky. She didn’t have to because there were no restrictions in place at that time.

    TAKING A TOLL

    The past 10 months have been an education in not only caring for patients amid a pandemic but caring for families as well.

    Nicole Geist, Parsley’s manager on 9 East, understands the toll it takes on her team and their patients.

    “We have families here sometimes for quite a bit of time. Mom and dad can switch out every 24 hours, but then they are going sometimes days, weeks without seeing each other or having time at home with their own family,” Geist said.

    “Especially around the holidays it was really tough,” she added. “We just feel for the families because they’re tired and it’s hard to get a break when one person is always either at home with the other children or at the hospital with the sick child.

    “All of my team – nurses, techs, secretaries – we want nothing more than both parents or both caregivers to be able to be at the bedside with their child, but we also know that that puts everyone at risk. It’s hard.”

    Like her peers on 9 East and other units of the hospital, Parsley does her best to be an extra set of hands and a sympathetic ear for caregivers who are isolated in their child’s room.

    Geist has noticed.

    “Angie throughout this entire time has been such a positive light and is frequently recognized by her peers and by patients and their families for continuing to go above and beyond for her patients,” Geist said.

    DAISY AWARD

    That positivity was recognized in the form of a Daisy Award for Parsley, presented last month. Once a splashy event with photographers and crowds of people, now even the Daisy presentations are limited to staff on the floor, individually wrapped Cinnabon rolls, flowers and the Healer’s Touch sculpture.

    Created in memory of Patrick Barnes, who died in 1999, the award is meant to “ensure that nurses know how deserving they are of our society's profound respect for the education, training, brainpower and skill they put into their work, and especially for the caring with which they deliver their care,” said Barnes’ father, Mark.

    In nominating Parsley for the award, the parent of a patient who now wants to become a nurse herself had this to say:

    “Not only did Angie go above and beyond what was expected to help make this difficult process easier for her patient, my daughter, but she went above and beyond for me as well. Angie is always gentle and caring when checking vitals and administering medications. Her priority was always her job and my daughter. (She) would take a few minutes to talk to my daughter and ask her about school and her siblings. Angie treated my daughter like a friend and not just a patient. Angie displayed excellent professionalism and true compassion every time she came into the room.”

    The recognition goes a long way in reinforcing Parsley’s commitment to her job and her patients. As a Riley mom herself, she knows the value of a kind word or an unspoken gesture, so she does her best to be that person for her patients and their caregivers.

    “Some days I go home and feel defeated, and other days I feel like a super hero. It can be a roller coaster, but I love what I do.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/what-to-expect-when-youre-expecting-in-the-age-of-covid-19 What to expect when you’re expecting in the age of COVID-19 2021-01-15T08:54:00-05:00 2021-01-15T08:55:05-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Pregnant women are faced with a lot of hard questions these days.

    What does labor and delivery look like during the coronavirus pandemic? Should expectant moms get the COVID-19 vaccine? Does the virus pose a more serious threat to them than other healthy individuals? Can they safely breastfeed their newborn if they have the virus?

    Dr. Chemen Neal, assistant professor of obstetrics and gynecology and an attending physician for IU Health, breaks down some of these concerns for moms-to-be.

    “A lot of pregnant women are worried that if they test positive for COVID at the time of delivery that they will be separated from their baby, and that is just not true,” Dr. Neal said.

    “We use the testing to help keep everyone who’s caring for them safe and to cluster patients when we can. It also helps us guide parents in how to take care of their newborn and how to decrease the chance that they will transmit the virus to their baby.”

    Strategies for caring for baby if a new mom is positive for the coronavirus include wearing gloves and a mask, perhaps even avoiding skin-to-skin contact for the first few days and expressing breast milk.

    “Those are the conversations that we have with new parents,” Dr. Neal said. “Patients have autonomy. Our job is not to make mandates and take babies away from moms. Our job is to really give parents the information they need to decide how they’re going to handle their child if they are positive (for the virus).”

    It’s really about having a conversation, she said.

    “The team is there to support you and give you all the right information. Things change rapidly, and our job is to help you make good decisions.”

    IU Health continues to allow a support person or partner to be with a woman during labor and delivery, Dr. Neal said, despite visitor restrictions in place to prevent the spread of COVID-19. If a woman chooses to have a doula, that person is considered part of the care team, so the patient can still have a support person with her in addition to the doula.

    Support persons and everyone on the care team are required to wear masks, but women do not have to wear masks while they are laboring.

    As for the vaccine itself, Dr. Neal said that while pregnant women were not included in studies of the vaccine efficacy, there is no reason to believe it poses a risk.

    IU Health, along with experts from the CDC, the Society for Maternal-Fetal Medicine and the American College of Obstetricians and Gynecologists, agrees that pregnant women should have access to the COVID-19 vaccine and recommends that those who are pregnant or breastfeeding consult with their physicians on the best course of action.

    Pregnant women with COVID-19 have an increased risk of severe illness compared with those of reproductive age who are not pregnant, according to the CDC. For that reason, Dr. Neal is advising her patients that if they want to get the shot, “they absolutely should get it.”

    The COVID-19 vaccines do not contain the virus so there is no risk of infecting a baby through breast milk. Because our bodies make antibodies to fight the infection, these same antibodies can pass into breast milk and on to the infant and might help prevent infections.

    Again, IU Health recommends that women who are pregnant or breastfeeding consult with their physicians on the right course of action.

    Dr. Lana Dbeibo, medical director of infection prevention at IU Health Methodist Hospital, is breastfeeding her infant son and did receive the COVID-19 vaccine.

    “There is no COVID in that vaccine, and it has no potential to cause the actual illness,” she said. “I think when I look at the risk-benefit, it is safer for me getting the vaccine rather than not.”

    While pregnant women are advised to take extra precautions to stay safe from the virus, including reducing exposure to those outside their household, the miracle of birth hasn’t changed, Dr. Neal said.

    “I want to reassure pregnant women that there’s not a fundamental change in the way care is being delivered when they come in to have a baby. We are working hard to make their experience still magical and positive, and we will continue to do that.”

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    https://www.rileychildrens.org/connections/iu-bicentennial-medal-awarded-to-dr-john-brown IU Bicentennial Medal awarded to Dr. John Brown 2021-01-13T19:40:00-05:00 2021-05-20T16:14:53-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    How do you sum up the 43-year career of a world-renowned surgeon in 15 minutes?

    Dr. John Brown’s cardiothoracic surgery colleagues did their best in that window of time to honor the man whose influence helped chart the direction of their own careers.

    Drs. Mark Turrentine, Mark Rodefeld and Jeremy Herrmann, all of whom care for the pediatric heart patients at Riley Hospital for Children at IU Health, spoke eloquently of their regard for the heart surgeon who mentored them and so many others over the years.

    Indiana University's Bicentennial Medal

    The occasion was a break in the IU School of Medicine’s Department of Surgery virtual conference Wednesday morning, during which Dr. Brown was presented with the Indiana University Bicentennial Medal. The bronze medal is handcrafted from materials salvaged from the bells that once rang on the IU Bloomington campus, thus giving its recipients a lasting piece of IU history.

    The Bicentennial Medal honors distinguished and distinctive service in support of Indiana University’s mission – those who have enlarged the footprint of IU, helping to put it on the map in unique ways.

    Dr. Brown, who retired last month, has done that and more, his colleagues say.

    “Our careers would not be what they are without Dr. Brown,” Dr. Turrentine said, recalling that he was encouraged by a former resident to visit IUSM and meet with Dr. Brown in the 1980s.

    “I did and I stayed, and it has been the most wonderful professional marriage that I could ever imagine,” Dr. Turrentine said. “The beauty of the group here is that there’s no turnover. People are committed, and a lot of that commitment is out of respect for our leader, Dr. Brown.”

    Dr. Turrentine talks at a ceremony for Dr. Brown

    Although acknowledging the desire to have a bigger celebration to honor their friend, colleague and mentor, the surgeons who spoke Wednesday all talked of their deep admiration for a humble but brilliant Hoosier who devoted his professional and personal life to caring for the people of Indiana.

    A native of Gosport, Indiana, a young John Brown grew up on a farm where the qualities of hard work and humility took root early, Dr. Turrentine said. He was a four-sport athlete in high school and went on to Indiana University, where he graduated Phi Beta Kappa before enrolling in medical school at IU.

    He would go on to perform the first pediatric heart transplant in Indiana in 1989, eventually operating on nearly 15,000 children and adults and training nearly 100 cardiothoracic surgical residents and fellows who practice throughout the United States and in 12 other countries.

    His academic imprint has been equally prolific, Dr. Turrentine said. He has authored more than 275 peer-reviewed research articles and 25 textbook chapters.

    “He is an exemplary son of the state of Indiana. His work has touched the lives of innumerable people, and his contributions will continue to benefit the care of patients with congenital heart disease for generations to come,” Dr. Turrentine said.

    Dr. Rodefeld discusses Dr. Brown's achievements

    Dr. Rodefeld first met Dr. Brown in 1986 as a 23-year-old first-year medical student and had the good fortune to work in his research lab. Whether serendipity or luck, he said the experience had a “profound impact on me that is still alive today.”

    Describing him as a role model, trusted adviser, go-to person, supportive colleague and guiding light, Dr. Rodefeld said Dr. Brown, is “a real surgeon’s surgeon.”

    In presenting the Bicentennial Medal to his mentor, Dr. Herrmann said Dr. Brown has been a tremendous anchor throughout his career, including the past four years at Riley working side by side in the operating room.

    A consummate gentleman and an eternal optimist, he also has the uncanny ability to simplify the most complex subjects in a way that residents, fellows and colleagues can learn from, Dr. Herrmann said.

    Dr. brown receives the IU Bicentennial Medal

    “We will never be able to fully account for his influence in the field.”

    For his part, Dr. Brown said he wouldn’t be standing there receiving this honor if not for his parents, hardworking farmers who taught him that you don’t quit until the work is done. From there, he gave credit to his wife of nearly 52 years.

    “I couldn’t have accomplished any of this without the love and support of my wife, Carol Ann. She blessed us with three children whom I love and I’m sure I’ve disappointed on many occasions when I couldn’t attend their events because I was taking care of a sick child.”

    He reminisced about his own mentors – Dr. Harris B. Shumacker Jr., Dr. Harold King and Dr. Robert D. King “and many others who inspired me along the way.”

    And he wasn’t finished, pointing to his three surgical colleagues in the room with him, to whom he said he gives all the credit; his residents, “who always try to make me look good”; the anesthesia team and cardiologists “who express confidence in me and the way we do things – without them, none of this would be possible.” And finally, to his support staff, who have kept things humming all these years.

    “It’s been an amazing, wonderful career. I thank the Department of Surgery and IU School of Medicine for allowing me to stay here these 43 years to do what I love and love what I do.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/cheers-for-charlie-keep-getting-louder Cheers for Charlie keep getting louder 2021-01-12T16:02:00-05:00 2021-05-21T13:50:30-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Ask 2-year-old Charlie Smith if there’s someone new in his Franklin home, and he’ll tell you straight up: “It’s Baby George Walter.”

    Baby George Walter is Charlie’s baby brother, born to parents Cody and Stephanie Smith in late November and marking the third boy in the family. Now Charlie is sandwiched between older brother Henry, 4, and George Walter, 7 weeks.

    The birth of baby boy George was a high point in a difficult year. As the coronavirus tightened its deadly grip on the country and the world, the Smith family continued navigating the grueling course of Charlie’s cancer treatment.

    Charlie was diagnosed with neuroblastoma in November 2019. Just 16 months old then, his life since has been a whirlwind of chemo, radiation, stem cell transplant and now immunotherapy. He’s a regular at Riley Hospital for Children, where his faith-filled parents have spent long days and nights praying fervently for their son and his Riley team.

    Charlie rests his head while at Riley Hospital for Children

    Supporting them from near and far has been their Facebook group Cheering for Charlie, with more than 6,300 fans.

    We caught up with Charlie and his dad just before Christmas at Riley as they finished up another week of inpatient care while Charlie received immunotherapy. This was Round 4 of 6 in his immunotherapy regimen – the last big piece of his aggressive treatment, Cody said.

    Usually, Stephanie is by Charlie’s side during these often difficult days in the hospital, but she is recovering at home after delivering George via C-section.

    “THE DAYS RUN TOGETHER”

    While a now 2½-year-old Charlie played with decorations for a tiny Christmas tree brought in by child life specialist Maddie Kinzel, his dad talked about their remarkable journey over the past year.

    “The last year, all the days run together,” Cody said. “It seemed like we pretty much lived here. It’s like a family reunion every time we come back up here.”

    One of the nice things about Riley, he said, especially on the fifth floor where patients with cancer and blood disorders are treated, is that the nurses get to know you really well.

    “They’re here on the hard days and on the good days,” Cody said. “Charlie has a couple favorite nurses, and mommy and daddy have favorite nurses too.”

    Cody, wearing a University of Notre Dame sweatshirt, said he doesn’t sleep well at night, so when Charlie is asleep, he sometimes steps out into the hall to talk with nurse Jake Harmon about Notre Dame football and music.

    Cody didn’t go to Notre Dame – it’s the one school he applied to that did not accept him, he said ruefully. But he’s philosophical about that now.

    “It was a blessing in disguise. If I had gone there, I wouldn’t have met my wife and had these kids.”

    As Cody talks, Charlie gets restless, so his dad reaches down to pluck him out of his big-boy bed. He wanted a big bed instead of a crib because he likes his mom or dad to lie down with him when he sleeps.

    “Does your tummy hurt? Do you want me to hold you?”

    With that, Charlie snuggles his head into his dad’s shoulder contentedly and closes his eyes.

    “He’s melting,” Cody says quietly.

    The love between father and son positively radiates in this simple moment.

    HOME FOR THE HOLIDAYS

    Family photo of the Smith family

    Charlie is infatuated with his baby brother, his dad said, though he does an impression of George’s cry that tickles both mom and dad.

    The young family looked forward to being home for the holidays.

    “We’re gonna party like it’s not 2020,” Cody said with a laugh.

    On Charlie’s wish list for Christmas was “Star Wars” gear. He and Henry love dressing up in character. On his good days, Charlie likes nothing more than pulling on his Darth Vader costume, belt, cap and mask and chasing his big brother around the house with a play sword.

    “Being home does a lot for the soul after being in the hospital,” Cody said. “You lose a sense of time in the hospital. It’s hard to remember how long you’ve been here.”

    COVID-19 has exacerbated that disconnect for many who are working from home, including himself, he said.

    “It feels like the longest Monday of my life. That’s 2020; that’s what it feels like.”

    But 2021 is a new year and it represents the home stretch of Charlie’s treatment. The toddler had clean scans last month. After his last treatment in February at home, he’ll have another round of scans, then another every three months for a year.

    FINISH LINE IN SIGHT

    Charlie and Cody returned to Riley this week for his last in-patient stay for treatment. The sixth and final round will be completed at home. They both have felt the love on each visit but none more so than this week. A poster signed and decorated by Riley staff greeted them when they arrived: Happy Last Treatment Charlie!

    “We don’t know what the future holds, but we know who holds the future,” Cody wrote in a Facebook post after arriving at Riley armed with his faith, good humor and breakfast and lunch from Charlie’s favorite restaurant, Chick-Fil-A. “So close to the end of this treatment we can taste it!”

    Charlie sits with Cody at Riley

    In a post-COVID world, the family hopes to have a big Cheering for Charlie bash to celebrate the community that came together to lift them up during Charlie’s battle. They would be thrilled to combine it with Charlie’s third birthday in June but understand that the timing might be too soon.

    “People all over country and the world have sent cards, donations and said prayers,” Cody said. “It would be cool to get people together to celebrate this victory. We did something big, even with the odds stacked against us. A lot of people have been praying, and the staff here is phenomenal. It’s a long journey, but the finish line makes it all worth it.”

    Cody and Stephanie have documented much of Charlie’s journey online, on video and in a journal. They want to remember not only their son’s fight but also the love and support they felt from their community.

    “To see these people just bless us, doing the work of Christ, it’s really inspiring,” said Stephanie in an earlier interview. “It’s teaching us.”

    Some day they will tell Charlie his own story, perhaps even turn it into a book, Cody said, as a way to help others.

    “We want to be an encouragement to other families.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Related stories:

    Thousands of people are Cheering for Charlie - Their 19-month-old baby is fighting neuroblastoma, but this Franklin couple finds comfort and peace in their faith, family and friends.

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    https://www.rileychildrens.org/connections/when-opportunities-came-her-way-she-said-yes When opportunities came her way, she said yes 2021-01-11T10:27:00-05:00 2021-05-21T14:11:04-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    It was the kids who first drew Debbie Carter to the field of physical therapy. She knew she wanted to work with pediatric patients when she started her career in Indianapolis.

    Still, it took a while for her to achieve that goal. Out of school, she worked for two years with adult acute-care patients at the former Indiana University Hospital, now IU Health University Hospital.

    She learned a lot but missed the kids, so she moved into a school-based therapy position for the next six years. It took a move to Riley Hospital for Children in 1988 for her to find the sweet spot.

    “I really missed acute care and the clinical setting,” she said of her school job. “And I missed the camaraderie with other therapists. When I started at Riley, I can never forget those first few days and weeks, thinking, ‘Oh my goodness, I have so much support here and so much to learn.’ ”

    Childhood photo of Debbie's two grandchildren

    And now, after 32½ years in a variety of roles, Carter said goodbye to her team last week, retiring to take on a new role – helping to care for her two grandchildren, ages 2 and 3 months.

    It’s not easy to walk away.

    “Every day is just really weird,” she said last week. “It’s such a strange feeling, knowing this will be the last time I do any of this.”

    Carter, who grew up on a farm in Wabash, Indiana, retired as in-patient manager for rehab services at Riley, supporting the acute care multidisciplinary team of physical, occupational and speech therapists.

    She says she never aspired to a leadership role, but opportunities came her way and she chose to say yes.

    Carter worked in front-line patient care at Riley from 1988 to 1997, primarily in the burn unit and NICU, and loved it. She felt the Riley “magic” as soon as she started, attributing much of that to “really strong and proactive leadership.”

    “It was such a good experience to have mentors around you all day long,” she said. “I could see in the medical center environment how many learning opportunities there were, so I never looked back.”

    In 1997, she was working part time as a physical therapist while her own children were young. She was a team leader but did not have much administrative responsibility. That all changed when University Hospital, Methodist Hospital and Riley merged to become part of Clarian Health Partners and later IU Health.

    She said yes to a management role, in part to be a voice for her team at Riley and University hospitals. She served as pediatric supervisor, managing all of the pediatric physical therapists at Methodist and Riley, both in-patient and outpatient. A few years later, she picked up all of acute-care adult PT as well.

    “My care group became my team members that I was going to help support more than individual patients,” she said. “My goal was to do my best to support them and be their voice in a big place.”

    Debbie smiles as she poses for a selfie

    A reorganization in 2018 left her with a smaller but more manageable team at Riley, yet her passion for patients and their therapists never waned. Seeing patient outcomes improve as the disciplines evolved has been most rewarding, she said.

    “I have seen the clinical specialty development really growing,” she said. “To watch my team develop with the NICU, the burn unit, congenital disorders and in the ICU, it’s just incredible.”

    She points to a program launched last year in the pediatric intensive care unit designed to improve the mobility and recovery of critically ill children and led by Dr. Danielle Maue, associate medical director in the PICU.

    “We’ve known in the adult world for a while that increased mobility earlier leads to better outcomes – decreased mortality, decrease in the number of ventilator days and a decrease in length of stay,” Dr. Maue said last spring.

    Why not do the same with pediatric patients?

    Physical and occupational therapists are active partners in the program, working with a multidisciplinary team of physicians, nurses, respiratory therapists, speech therapists and child life specialists to plan and implement the new strategy.

    Not every patient can be up walking around on a ventilator, but the goal is to get patients moving as safely as they can, even if that means just shifting them in bed or helping them sit up, rather than keeping them sedated.

    Seeing the evolution of care, particularly for burn and ICU patients, as well as the growth and development of so many therapists whom she hired over the years, has been especially meaningful to Carter. The changes may have seemed gradual, but their collective impact has been substantial in the healing and recovery process for so many, she said.

    The same could be said about Carter’s impact over the past 32 years.

    Riley physical therapist Attie Vogler described her manager as “caring and hardworking,” someone who put her team first.

    Debbie and Ben on a beach

    “She is always willing to stay late or change plans to meet with her employees. She is constantly taking requests for items we need and will order them or go out and buy them herself if that is what is needed to allow the therapists to be able to best do their job,” Vogler said. “She follows up on the small details that help keep things running smoothly.”

    Right down to cleaning up for people after a busy day, with help from a vacuum that she kept in her office, Vogler said.

    The decision to retire wasn’t easy for Carter, but the pandemic and the birth of her newest grandchild last fall helped put things in perspective.

    “I just didn’t want to miss out on this time with my grandkids.”

    She’ll also get to spend more time with her husband, Ben, and her “best buddies,” Finn and Faye, the feline siblings she rescued from the Humane Society several years ago.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/its-a-new-beginning-for-us-mama “It’s a new beginning for us, Mama” 2021-01-10T16:39:00-05:00 2021-01-10T16:41:34-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Sometimes, Angel McNeil can’t quite figure out who’s taking care of whom.

    That’s because 6-year-old Bri’Alle, a bit of an old soul despite her youth, has a way of lifting her spirits and making her believe anything is possible. Even as she lay in a hospital bed, the first-grader was encouraging her mother.

    “We got this, Mama,” Bri told her mom. “I’m gonna keep getting better, just watch.”

    Mother and daughter needed to believe that more than ever during the past two months.

    Bri was asleep in her bed Nov. 5 when an errant bullet fired outside her home ripped through the wall of her bedroom and tore through her tiny body. She suffered serious injuries to one kidney, her adrenal glands, pancreas, intestines, liver and one lung, according to Dr. Brian Gray, pediatric surgeon at Riley Hospital for Children.

    The miracle was that she was still alive.

    “She has a lot of spirit and she’s going to be fine,” Dr. Gray said when Bri was moved out of the intensive care unit after several weeks to continue her recovery. “It’s just amazing how far she’s come, but that is a testament to her family and the team.”

    For seven weeks, Angel McNeil stayed by her daughter’s side in the hospital, praying for the medical team that would save her child’s life. Two days before Christmas, a tearful but joyful McNeil brought her baby girl home.

    And now the two are reunited with Bri’Alle’s older brother, Jaiden, carefully figuring out day-to-day life in a new place, a few miles away from the scene of the trauma that unfolded last November.

    While her daughter was recovering, McNeil packed up her apartment and moved across town, setting up a new household in a place where she hoped her daughter could continue to heal, away from the memories of the shooting.

    Since the day she arrived home, Bri has been doing well, McNeil said, walking up and down stairs like nothing ever happened. She returns to Riley weekly for occupational therapy but otherwise is progressing better than expected.

    “Bri’Alle has done amazingly well since discharge just two days before Christmas,” Dr. Gray said. “She still has some hurdles to leap in her recovery, but I think she will recover completely before too long.”

    Christmas was a joyful time for the family, with Bri finding an escape in her new LOL dolls and a dream house for those 3-inch-tall toys. “Best Christmas ever,” was how she described it.

    On New Year’s Eve, McNeil steeled herself for the sound of celebratory gunshots that some people like to shoot into the air. But if Bri heard anything, she was unaffected, her mom said.

    “I was expecting when she came home that she was going to be kind of afraid because it’s a new house. And New Year’s triggered it all over again for me, but she was acting like nothing happened.”

    On New Year’s Day, Bri marched up to her mom and said, “It’s a new beginning for us, Mama. It’s 2021, and lots of good things are going to come to you.”

    Her daughter’s face was so serious, McNeil recalled.

    “She gave me a fist bump and went upstairs. And I’m like, whoa. She’s a kid, and she just has so much to say.”

    While at Riley, Bri kept up with her schoolwork, thanks to the help of Riley teachers, and now she is learning virtually again at home.

    Her classmates welcomed her back, not with probing questions about what had happened to her, but with smiles and songs, McNeil said.

    “They were happy to see her and glad she’s getting better.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Related stories:
    “God told me to check on my babies - When she heard the gunshots, Angel McNeil knew they were close, but she wasn’t prepared for what she saw.



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    https://www.rileychildrens.org/connections/be-kind-to-each-other “Be kind to each other” 2021-01-06T12:33:00-05:00 2021-01-06T15:42:28-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Carmel Buckner is tired. But it’s a good tired.

    After a half-century of dedication to Riley Hospital for Children and IU Health Methodist Hospital, she retired last week, just before the ringing in of a new year.

    Buckner, 72, looks forward to kicking back a little, working on some long-delayed house projects and being home for dinner with her husband. When she gets bored, she said, she might even return to school to finish her bachelor’s degree.

    The EVS team member has worked second shift in housekeeping at Riley for close to 15 years. Before that, she worked for 37 years at Methodist in a variety of jobs, including certified nursing assistant, patient services, insurance verification and pre-registration.

    “It feels pretty good,” Buckner said before reporting in for her last day. “I’m going to miss the people. That’s the main thing.”

    People like Antionette Chapman, who describes her EVS colleague as “passionate, empathetic, loving and caring.”

    “She has served the Environmental Services Department and IU Health with dedication and commitment for over 50 years,” Chapman said. “As a team, we are certainly going to miss her. Her knowledge and experience in the department are invaluable.”

    Buckner learned a long time ago that hard work and a good attitude can help shape a good life. She laughs when she remembers how her mother used to send her (and her siblings) to the bathroom if any of them had a bad attitude.

    “She would tell us to stay in there until we had a better attitude.”

    What was the longest time she had to stay there? “Not too long,” she laughs again.

    Laughter and joy come easily to Buckner. She recalls how one co-worker at Methodist told her she set the tone for the entire floor.

    “When I wasn’t there, things were dull,” she said. “But when I was there, it seemed to be uplifted. I smile often and encourage people. I attribute a lot of that to my faith and my upbringing.”

    Her colleagues threw a small going-away party last week, attended by Riley chaplain manager Marcos Collado and Carrie Lahr, Riley’s vice president of operations, who complimented Buckner on her “incredible career” and wished her well in retirement. All signed a large banner as a keepsake.

    “Her tireless dedication and kind demeanor inspired everyone around her,” said her manager, Blayke Humphrey. And she didn’t leave before sharing a final piece of advice, telling everyone to “Be kind to each other.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/i-hope-theres-something-ive-left-behind-at-riley “I hope there’s something I’ve left behind at Riley” 2021-01-04T10:08:00-05:00 2021-01-12T14:57:45-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Darla Cohen didn’t know 38 years ago that a baby would truly shape the course of her career, but that’s exactly what happened.

    That baby, her daughter, was born full-term at Methodist Hospital before the hospital was part of the IU Health system. Complications would lead to her being admitted to the neonatal intensive care unit, where she was treated for several weeks.

    Being a NICU mom was a different kind of education for Cohen, who has a bachelor’s and master’s degree in education and worked for Indiana University in Bloomington and the IU School of Medicine for many years. Yet she took that experience and years later turned it into a role at Riley Hospital for Children at IU Health that has changed the lives of countless patients and families.

    And now she is stepping down to move into a new role – that of grandmother to her first granddaughter, Mazie Rose, born to that long-ago NICU baby in August.

    TRAILBLAZER

    As project manager for Patient and Family Experience at Riley, Cohen launched the first Patient and Family Advisory Council within IU Health and became an advocate for parents who needed to be listened to and supported during their child’s healthcare journey.

    Because she was once that parent.

    For the first time, families had a voice and a place to tell their stories. Those stories would lead to so many firsts over the years – the first mentoring program in the Riley NICU and a similar program in the Heart Center; an app (to be expanded next year) that helps families navigate Riley; in-room meal service for patient families; even something as simple as automatic door openers in the ROC parking garage.

    Those are just a few of the improvements her leadership has inspired. Last year alone, there were 40-some concrete changes the advisory council saw implemented.

    After her daughter’s stay in the NICU nearly 40 years ago, when there weren’t even chairs at the bedside, Cohen later became a Riley mom as her daughter suffered gastrointestinal problems as a child.

    At the time, she was already steeped in the principles of family-centered care as part of continued research she was doing, and one of those principles was dignity and respect for all, she said.

    Now we call it patient experience, Cohen said, but it’s still about making things easier for families and concentrating on what matters most.

    Why then, she asked more than a decade ago, did families have to come to Riley five days a week for appointments for their child when they could be coordinated into two or three trips? Surely that would be better for parents, all of whom had busy lives outside the hospital.

    That way of thinking has driven everything she has done since she was hired into her current role 13 years ago.

    “It was sort of a blending of my professional background as an educator with my personal experiences as a parent,” Cohen said. “It gives you a different perspective once you’ve lived it.”

    Even though she had to stand by her daughter’s isolette every day, Cohen said she felt supported at Methodist in those weeks after her daughter’s birth. There were parent-to-parent mentors who provided emotional support to families in the NICU.

    “Having that support made my experience survivable. We’ve come a long way in terms of accommodating families’ basic needs while they’re in the hospital, but it’s always been paramount to me.”

    Those who know her agree.

    LONG-TERM IMPACT

    Tracy Miller, director of Patient and Family Experience, said Riley leads the IU Health system in bringing the voice of the customer to key decisions, thanks to Cohen’s influence and stewardship. And she helps providers learn about patient-centered care approaches not only at Riley but within the IU School of Medicine and School of Nursing.

    In addition, she said, “Darla shares her best practices across the country and is a long-term advocate for parents and families involved in safety improvements in the healthcare setting.”

    Melody Holmes joined the Patient and Family Advisory Council earlier this year, but she has known Cohen for more than a decade. Holmes’ daughter has been a Riley patient since she was 6 weeks old.

    “Darla was always there for me, whether we were coming for an outpatient appointment and she would just stop in and say hi, or we were in-patient. When she walks into the room, it’s like a breath of fresh air and just peace. Her presence brings peace,” Holmes said.

    “And she gives really great hugs when it’s not COVID time.”

    Having someone who was always in her corner even as her daughter went through various diagnoses was comforting to Holmes, and Cohen could be counted on to be a good sounding board when Holmes needed to talk things out.

    “If nothing else, she just always reminds me that I’m doing the right thing in advocating for my kid.”

    And when she’s gone?

    “I have her phone number,” Holmes laughed, “so I won’t miss her too much.”

    Laura Spiegel has served on the family council for four years and has led it for the past two years. She values Cohen for her heart and her insight.

    “I think it’s rare to find somebody who understands the ins and outs of the hospital from an operational perspective and a strategic perspective but who also is able to maintain the compassion and the empathy and the authenticity that she does,” Spiegel said.

    “She gets it, and she doesn’t give up. The fact that she went through the experiences she did with her own daughter gives her that perspective. I have witnessed so many times when she was able to comfort someone under immense stress just with her words. That’s a real skill set and will be hard to replace.”

    PARTNERING WITH PARENTS

    When she first took the job at Riley, Cohen said a conversation with then-CEO Dr. Ora Pescovitz had a lasting impact.

    “She told me the most important thing for me to do was to make myself indispensable, and I took that to heart, together with the principles of family-centered care. Her advice and those principles have guided every single thing I do at Riley.”

    She has had the opportunity to work with wonderful families during her tenure, she said, mentoring them to a point where they feel they can do things that they never dreamed possible, including giving presentations at national conferences.

    Last year, Cohen and her team of parents gave a record eight co-designed parent-professional presentations at national conferences.

    “I don’t present alone. I always have a family member with me,” she said. “I’m serious about that partnership, and I encourage them to grow and do that.”

    Still, listening to their comments during a virtual meeting when she announced her retirement was a bit overwhelming.

    “It’s somewhat embarrassing when you listen to multiple people saying ‘you changed my life,’ ” she said, adding that she could not have accomplished anything without the support of the families she has worked with.

    “If I had known that I was that influential as we were going through life, I would have been crushed by the responsibility. It’s frightening to think about. It really was a lot.”

    Riley Chief Operating Officer Dr. Paul Haut said it’s hard to imagine Riley Hospital without Cohen walking the halls, “that is until you begin to think about the lasting positive impact she has had.”

    “She helped us bring Dr. Morris Green’s philosophy of family-centered care to life,” he said, “from the Patient and Family Advisory Council to Family as Faculty to helping lead through our Guest Management initiatives. While I will miss Darla being a part of our daily life, I am confident her presence will continue to be known.”

    LEAVING IS BITTERSWEET

    Cohen is hopeful that someone will come along to build on what she has been able to accomplish.

    “I tried to provide people with the support and the encouragement to be leaders, to be family advisers, to help us get better,” she said. “I explain to them that their lived experiences are something we can’t buy as a hospital system. They are invaluable to us. They are the ones who give you the information you need to be better. All we have to do is act on it.”

    Leaving now is bittersweet, but the time is right, said Cohen, who was feted in a virtual celebration last month.

    “I could have retired a year ago, but I thought it was too early when I love what I’m doing,” she said.

    But then 2020 happened. When you pile a pandemic on top of her daughter’s difficult pregnancy and the loss of her mother, and layer it with new-to-her terms and processes like Twistle and ERP and Zoom and Bang the Table, it’s a lot.

    Especially for someone who admits to being technologically challenged.

    “I made a list of all the different terms that people were referencing in October and thought, ‘Do I really want to struggle with this at my age (68)?’ ” She answers her own question. “I do not.”

    But she leaves with no regrets.

    “I’m going to miss my families a lot,” she said, taking a moment to compose herself before continuing. “And I hope there’s something I’ve left behind at Riley. I’ve tried to make a difference; I’ve tried to make the experience better for families.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-cardiologist-leaves-a-legacy-of-excellence-kindness-and-compassion Riley cardiologist leaves a legacy of excellence, kindness and compassion 2021-01-03T14:39:00-05:00 2021-11-10T11:52:40-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    The important thing is not what you do in life, but what you leave behind.

    That advice from Dr. Morris Green has guided Dr. Randall Caldwell since he was a young cardiologist-in-training nearly a half-century ago.

    Dr. Green was the longtime physician-in-chief at Riley Hospital for Children who championed family-centered care before it was widely practiced around the country. That culture is the rock upon which Riley is built, and it has fit well with Dr. Caldwell’s kind, unassuming manner of care and leadership for nearly 43 years.

    “It’s not about us; it’s about what we leave and what we can do for others,” he said just days before he would work his last shift at Riley, reading echocardiograms on New Year’s Eve to give others time to be at home with their families.

    Dr. Caldwell, who brought the echocardiography program to Riley, is retiring after a year like no other, thanks to COVID, but also after a career like no other.

    KIDS AND FAMILIES FIRST

    It’s a career the IU School of Medicine graduate and Navy veteran said he was blessed to have, working with people who always put Riley kids and their families first.

    Kids like one 9-year-old heart transplant patient who scrawled a heartfelt note to “his friend” Dr. Caldwell when he learned that his next visit to the pediatric cardiologist who had treated him for most of his life would be his last.

    “It just brought tears to my eyes, reading his words,” Dr. Caldwell said. “He described me as his friend.”

    Pillow made with Dr. Caldwell's uniform

    That’s just one of scores of notes and letters and mementos he has received since announcing his retirement. A video tribute posted on the Riley Children’s Facebook page elicited heartfelt comments, and a team member whose daughter he took care of two decades ago pilfered one of his white coats and made a pillow out of it, complete with a shirt and tie, which he will treasure.

    “The love I have received from people is more than I ever deserved.”

    That humble nature defines the beloved cardiologist, who was just the third pediatric cardiologist in the state when he joined Riley the day after completing his fellowship. The other two – Drs. Don Girod and Roger Hurwitz – were also at Riley. Together they elevated and expanded the young pediatric cardiology program into a world-class heart center, currently ranked fifth in the nation in U.S. News & World Report’s hospital rankings survey.

    Dr. Caldwell and heart surgeon Dr. John Brown, both of whom started on the same day back in July 1978, worked hand in hand to launch Riley’s heart transplant program in the decade that followed.

    “John and I hit it off because we were similar ages and had young families,” Dr. Caldwell said. “We worked very closely together … to help propel the program. We started on the same day, and now we’re retiring the same day.”

    Not by design, he said. It just happened. He always figured he would work a few more years, as long as his health was good, but COVID-19 changed his outlook.

    “IN GOOD HANDS”

    “I’ll be 75 here soon and … COVID really gave me a chance to see that there’s life beyond my work and to realize that I am married to a saint of a wife. She is the reason I’ve succeeded at everything.”

    Dr. Caldwell and Jessica Jones

    He and his wife, Sherry, raised five children, who have given them 11 grandchildren. Their daughter, Jessica Jones, is clinical manager of the cardiovascular critical care unit at IU Health Methodist Hospital.

    The virus, which has been so deadly and destructive, killing more than 340,000 Americans now, helped him appreciate his own mortality and that of his loved ones.

    And so he decided now was the time to step away from his life’s work, as bittersweet as that is.

    “I know I am leaving things in good hands with Larry Markham, who has done an excellent job taking over for me as division chief. I realized that there are people coming after me who are going to do just as well if not better than me,” he said. “Patients are going to be in good hands.”

    Dr. Markham said the opportunity to be mentored by Dr. Caldwell for nearly three years was a significant factor in his decision to join the Riley team.

    “Our rather regular and often impromptu meetings allowed me to float ideas but also to better understand the history and the culture of our division,” said Dr. Markham, who referred to his mentor as a true Midwestern gentleman who set a high bar when it comes to caring for patients.

    “After seeing some of your now adult patients, those patients and families adore you and remain appreciative of the time and care that you’ve given them,” he said, referring to both Drs. Caldwell and Brown in remarks to the cardiology team before Christmas.

    SAYING THANK YOU

    Dr. Caldwell missed the chance to see some of those patients at the annual December heart transplant reunion put on by Riley, which had to be canceled this year because of COVID. But he has heard from many others via Facebook who have shared their love and respect for him.

    “Dr. Caldwell, we first talked to you in the very early hours on a Sunday morning when (our daughter) was transferred to Riley as a newborn. We have been so fortunate to have you leading her care through all of the years and surgeries. You always stopped in to check on her and helped us navigate parenting a heart warrior. We can never express the gratitude we have for you.”

    That same patient is now a nurse practitioner on the Riley cardiology team.

    Dr. Caldwell uses his stethoscope

    “Riley Hospital is what it is because of people like Dr. Caldwell,” wrote Regina Rossetter, heart transplant coordinator. “His warmth, kindness, compassion, leadership, mentoring, integrity, intelligence, commitment and moral compass are just a few of his qualities. I have worked at the same place for 42 years because of colleagues like Dr. Caldwell. He will be missed.”

    Never one to seek the spotlight, Dr. Caldwell said it’s the nurses, medical assistants, coordinators, administrative staff, housekeeping and other physicians who share all the credit for Riley’s success. All have a heart for the children and the families who seek their expertise.

    “It has been such a pleasure working at Riley,” he said. “We were blessed beyond our expectations.”

    And now he wants the attention focused on those people coming up behind him – they are the future.

    “I’m not seeking accolades. I want to pay it forward. I want to build up the people coming after me, and I know John (Dr. Brown) feels the same way.”

    Cleaning out his office has taken him on a trip back in time, but he is grateful for the journey.

    Being division director wasn’t something he aspired to, yet he brought his philosophy of servant leadership to that role just as he has in everything he’s done in life. And if you do things for the right reasons, he said, it usually works out well.

    “I have some kids now who are out 28-29 years from transplant and doing very well. That’s very rewarding, knowing these are patients who would have died if you hadn’t been able to do this,” he said.

    “My major goal was to help these kids who were suffering and not surviving. I think that’s why we’re here on Earth – to help others. Whatever we have, we can’t take it with us.”

    As Dr. Morris Green said, it’s all about what we leave behind.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/city-of-indianapolis-honors-retiring-riley-legends City of Indianapolis honors retiring Riley legends 2020-12-31T09:14:00-05:00 2021-11-10T11:23:09-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    COVID put the kibosh on a big party, but there was no way Riley Hospital for Children could let two living legends walk out the door in 2020 without a little pomp and circumstance.

    Cardiologist Randy Caldwell and cardiothoracic surgeon John Brown joined several members of the Riley heart center team three days before Christmas for a surprise announcement.

    Riley Chief Operating Officer Dr. Paul Haut was on hand in the lobby of Simon Family Tower to honor the two retiring physicians with proclamations signed by Indianapolis Mayor Joe Hogsett, highlighting their remarkable careers and designating Jan. 1, 2021, as Dr. John W. Brown Day and Dr. Randall L. Caldwell Day.

    The two men, who began their full-time Riley careers on the same day – July 1, 1978 – are retiring at the same time. Not by design, Dr. Caldwell said, but for two physician