The cardiovascular intensive care unit at Riley Hospital for Children can be a scary place, but leave it to Alma Estrada to bring a little sunshine.

A secretary on the unit, Estrada brings love and compassion to work with her every day. Like the nurses, doctors and other team members on the CVICU, she leads with her heart.

That’s why the transplanted Texan wanted to do something for the families who spend days, weeks and months on the unit and in other areas of the hospital as their children and loved ones receive care.

And what better way to do that than to feed them, she thought.

“One of our moms mentioned to me that being close to their family member was very important to them, but they did struggle with food,” said Estrada, who worked with her colleagues and got permission from her manager to fundraise and plan Meals that Heal monthly through Ronald McDonald House and a local restaurant.

“I just like to help anyone and everyone if it’s within my hands to help,” she said. “I work with the families here and see the way life changes for them when a baby is born with a heart issue. They don’t go back home, back to their own bed or their refrigerator, so they’re not eating what they are used to eating.”

The first meal was street tacos, rice and beans in April, and another meal is planned in June. Donation boxes can be found around the CVICU.

Estrada, who has no kids of her own, helped raise her niece, and the two like to volunteer in the community outside of work.

“I love my job because I get to learn something every day,” she said. “My unit took me in with lots of patience, and they gave me a great opportunity. For that I will forever be grateful. Riley is a paradise of opportunities.”

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

Hannah DeLong was just 15 when she faced a life-threatening illness.

“I was definitely terrified for my life,” the soon-to-be 18-year-old from Garrett, Indiana, said of the experience that shaped her teen years.

It started with headaches that she likened to migraines, “but 10 times worse.”

They lasted much of the summer in 2022, recalled her mom, Erin Reynolds. Hannah has worn glasses since kindergarten, so Reynolds took her to the eye doctor first.

As the headaches persisted, doctors suspected a sinus infection.

When Hannah asked to stay home from school one day, Reynolds knew something was definitely wrong.

“She never misses school. I had to demand answers.”

After visits to other medical providers and hospitals, where Hannah was diagnosed with obstructive hydrocephalus, Reynolds ultimately took her daughter to the emergency department at Riley Hospital for Children, nearly three hours from her home.

“My mom gut kicked in,” Reynolds said, adding that it was her husband, Arthur, who first noticed that one of Hannah’s eyes seemed to be drifting inward. “Something else was going on.”

Hannah had cerebrospinal fluid on her brain that needed to be drained, but the “something else” turned out to be a tectal plate glioma, a slow-growing, low-grade brain tumor that typically occurs in a region of the brain responsible for visual and auditory reflexes.

The hydrocephalus she was suffering is secondary to her glioma, but it is what needed to be addressed immediately, so Riley neurosurgeon Dr. Jignesh Tailor implanted a programmable shunt in Hannah to automatically drain any fluid buildup.

Since then, Hannah says she has felt like herself again, even while the team at Riley continues to monitor the tectal plate glioma and incidental lesions throughout her brain in its nonsurgical surveillance clinic.

While the glioma tumors don’t usually grow, they must be monitored, said Kelsey Knight, nurse practitioner in the pediatric neurosurgery department at Riley. She and oncologist Dr. Scott Coven run the surveillance clinic.

“Typically, we try not to operate in the tectum because it can cause nerve deficits and can impact vision,” Knight said. “But the biggest problem they cause is the obstructive hydrocephalus. They block the pathway of the cerebrospinal fluid. That’s why she required the shunt.”

Hannah, described as “truly an amazing kid” by Knight, chose to come forward with her story as a way to help other families and kids dealing with hydrocephalus and other medical challenges. She also wants to show her love for Riley.

“I wanted to raise money for Riley because they changed my life in so many ways,” the high school senior said.

Her fundraising at school led to her being named Riley prom queen this year, and she has pushed herself to speak about her experience in school assemblies.

“It was scary, but it was really cool sharing it,” she said. “Everyone was so confused about what happened to me.”

Today, Hannah is back to full strength, working and finishing up school. She plans to work as a cosmetologist after graduation.

The frequency of her return visits to Riley for MRIs has slowed from every three months at first, to six months, and now to yearly visits to ensure there has been no growth or change in the glioma.

“We continue to follow her for the time being,” Knight said, just as they do with about 150 patients in the surveillance clinic.

Eventually, Hannah will transition to the adult side for her hydrocephalus, but she should be able to graduate from surveillance if all of her lesions stay stable, Knight said.

“She’s come a long way. Early on, they were so anxious, and rightly so,” Knight said. “That whole process was really scary, but now three years later, she’s doing all these great things. It goes to show that this doesn’t have to define her.”

The experience was a hard one, for sure, Reynolds agreed, but “I feel like Riley did an amazing job figuring out exactly what was wrong and what she needed. They were amazing with her care. Things could have gone south pretty easily had we not gotten the care we did.”

As she has become accustomed to the shunt in her head and the need for vigilance going forward, Hannah said the health scare has changed the way she thinks.

“I live life regularly but with caution,” she said. “This experience was an awakening for me to keep living my life.”

There is something undeniably sweet about a humble heart surgeon who saves lives for a living turning the spotlight on his mom this Mother’s Day weekend.

Riley Children’s Health cardiothoracic surgeon Dr. Jeremy L. Herrmann goes about his work quietly but skillfully, performing heart transplants and other complicated heart surgeries.

But true to his Hoosier roots and the Riley way, he shuns the limelight in favor of lifting up others. This time it just happens to be his mom he wants to focus on, because she has found a way to quietly support her son and his patients through quilting.

Dianne Herrmann took up quilting about 20 years ago as a way to keep her mind sharp and give her creative instincts a proper outlet. But there are only so many quilts she could give to friends and family.

“I needed a new outlet for my hobby, and when Jeremy joined Riley (in 2016), I talked to him about maybe making quilts for his transplant patients,” she said.

He got the approval from the necessary people, and the Riley Children’s Foundation donated 100 Riley patches for her to sew onto each quilt. She estimates she has made about 50 quilts – both kid-sized and adult-sized – dropping them off in bundles for transplant coordinators to give to patients and families when they leave the hospital.

“Knowing her passion for quilting and what our patients go through, it seemed like a fitting way to help honor them as they go home,” Dr. Herrmann said.

Just like her son, Dianne Herrmann is uncomfortable with fanfare. But she loves the idea of supporting his work in a small way.

“It gives me a connection to Jeremy that I wouldn’t have. I’m very proud of him, so whatever I can do to support him and especially this fantastic hospital, I’m willing to do it,” she said.

Jeremy Herrmann is the oldest of Dianne and Gary Herrmann’s four sons, all raised in Evansville with the same expectation: Share the gifts that you’ve been given.

All of her kids took that message to heart, she said, including her heart surgeon son, whom she occasionally calls “Dr. Herrmann.”

“His gift just impacts people in a more serious way,” she said.

From the time he was a little boy, he loved taking things apart and putting them back together, she said.

“He could sit for hours figuring it out. I think that was maybe your first clue you should be a surgeon,” she said to her son during a visit to Riley last month.

“We sometimes tease him about being 36 before he got his first real job (after years and years of school and training),” she added. “But what a job.”

What a job indeed.

Duncan Diehl and his mom, Nina Collins, are grateful that Dr. Herrmann went into medicine. Duncan, 15, was transplanted in January with a donor heart and is doing well today, Collins said. When he left Riley, he received a quilt made by Diane Herrmann, presented by social worker Laura Weiger and transplant coordinator Debbie Murphy.

“My grandmother used to quilt, and I wanted to learn to quilt from her, but life gets away from you,” Collins said, adding that she later bought a second-hand sewing machine and taught herself to quilt.

“It’s a very intimate process. Being an artist, I was able to appreciate that this was a different kind of art,” she said. “So, to me, when we were gifted that quilt, it was almost like a family connection, a strong feeling of caring.”

To feel that care from a relative stranger has its own healing energy, Collins said.

“Knowing what I do about the work that goes into a quilt, every stitch means something. And being on the maker’s side, I feel that energy come through.”

Dr. Herrmann appreciates the connection between his mom and the patients he treats, even though she will never know them.

“She can’t see what these families go through, the sacrifices they make, their determination, how they are doing everything they can to help their child or family member go home,” he said.

“That’s what inspires me constantly, and my parents inspired me and supported me all my life. For me, this is a unique connection in a tangible way.”

Mother’s Day looks different this year for three Central Indiana moms and their teenage daughters.

All will be away from home Sunday as the girls complete treatment for leukemia while the moms lean on each other to make it through each day.

Hallie Crane, 18, Lauren Klusmeier, 19, and Ashlynn Corn, 16, were diagnosed toward the end of last year – Hallie on Nov. 1 (acute lymphoblastic leukemia and acute myeloid leukemia), Lauren on Dec. 2 (AML) and Ashlynn on Dec. 24 (AML).

They have spent more time at Riley Hospital for Children than in their own homes over the past six months, enduring rigorous chemotherapy and, in Hallie’s case, a stem cell transplant.

By their sides through it all have been their moms, each trying to hold it together for their daughters while juggling families at home and acknowledging that their lives have been forever changed.

For all the laughter and joy that enveloped a Riley family lounge last week as these six got together for an interview, you wouldn’t know these moms and teens have been on a roller coaster that has shaken them to their core.

“I think going through something like this changes who you are,” said Tabatha Corn, Ashlynn’s mom. “It makes you more compassionate toward others, at least for me, and you learn things. You learn what to say, what not to say. You learn what to be thankful for and the gratitude you have for life, for sparing your child’s life, for the medical professionals who care for your child.”

And they’ve learned to give and accept grace – among one another and within their community, whether that be at Riley or home.

Tara Crane, Hallie’s mom, recalls meeting Corn on the cancer unit at Riley just before Christmas.

“I saw Tabatha crying in the hallway, so I said something to her just because I understood how she felt,” Crane said. “It’s overwhelming, and you don’t want your kid to see you bawling your eyes out. We needed each other’s support.”

That was the beginning of their friendship. Their daughters’ rooms were two doors down from each other. Nearby was Lauren, along with her mom, Jami Copenhaver. The two met Hallie when she wrote Lauren a short letter introducing herself. Hallie was in isolation, so she couldn’t leave her room, but Lauren began visiting Hallie, standing outside her door just to talk.

It helped, Hallie said, “just being able to relate.”

“It’s hard even for your siblings to understand what you’re going through,” Lauren said, “and there are some things we just don’t want to hear, like when people say, keep fighting. When was I not going to fight?”

Eventually, they met Ashlynn, and the three teens have bonded over their shared misery – the nausea, the hair loss, the blood and platelet transfusions, the fear, and the realization that the lives of their friends and siblings have gone on uninterrupted while this trio has been frozen in time.

“Everything continues to go on outside of here,” Corn said. “Like prom last weekend,” Crane said. “Or softball or college. It’s hard to watch everybody else’s world keep going.”

But of course it does, and they understand. Still, it’s hard.

“Lauren said to me one day that it feels like she is mourning her old life,” said Copenhaver about her daughter, who was enrolled at Indiana University Bloomington when her cancer was diagnosed.

Her new life will mean transferring to IU Indianapolis so she can be close to Riley for follow-up appointments. Her goal is to become a child life specialist at Riley. The family lives in Greenwood.

One of the bright spots in her days at Riley was a private visit by her favorite singer, Megan Moroney, last month, when Moroney was in town for a concert. Copenhaver reached out to the singer’s team on social media, and they were quick to respond and plan the visit to the Child Life Zone, where all three girls got to meet her.

“It was even better than I expected,” Copenhaver said. “I think God put that on her heart. It was very special; she even made a TikTok with Lauren.”

Hallie, diagnosed in November, missed most of her senior year in high school and all the milestones that come with that. She will graduate next month, but she won’t be able to attend the ceremony.

The North Vernon teen, who hopes to become a teacher like her mother, was discharged from Riley last week, but she and her mom will be staying in Indianapolis until July, giving time for her donated stem cells to continue doing the work of healing her. (Hallie received cells from an unrelated donor through the donor registry at a 100% match.)

“I’m not going home yet, but at least it will be a different view and some fresh air,” she said.

At 16, Ashlynn is the youngest of the trio. The high school sophomore from Leesburg is missing softball season with her travel and school teams but hopes to return in the fall or next year.

“She’s gonna be rocking it on the softball diamond,” Lauren said about Ashlynn, who did accomplish a big thing the last time she was home – getting her driver’s license.

Both Ashlynn and Lauren expect to be discharged in the next two weeks, their final chemo treatments finished.

Slipping back into “normal” life might be difficult at first, but the girls and their moms are ready for that next step.

“When all this is over, we need to have a girls’ trip,” Crane said.

For now, they are following doctors’ orders and say they are exactly where they need to be, as they give a shout out to their nurses for being “sunshine in the storm.” Oncologists for the three are Dr. Anthony Ross (Hallie), Dr. Allison Yancey (Lauren), and Dr. Emily Mueller (Ashlynn).

“Even though we’re ready to go home, we know how quickly things can change,” Corn said. “We’re here for a reason; they know what they’re doing here with our girls.”

Copenhaver, whose birthday falls on Mother’s Day this year, would like nothing more than to be home with Lauren and the rest of her family on Sunday, but she accepts that it’s not likely to happen.

“We’ll figure it out,” she said, adding that being a mom is “the biggest blessing God could ever give me. It’s the best job in the whole world.”

Her daughter says her mom was made for the job.

“She was born to be a mom. She is my best friend.”

Corn agrees that being a mom is one of the most rewarding experiences in life.

“God gives us these little people that we don’t know what to do with, but … just watching them grow and thrive and become good human beings is so rewarding,” she said.

It’s all about unconditional love and pride, Crane said.

“I could not be more proud of how Hallie has handled this, of how all my kids have handled this because this has been hard on all of them.”

All three moms are counting their blessings as they watch their daughters beat back cancer. One of those blessings is the unbreakable bond they have formed amid this health crisis.

“Having them has helped tremendously because they get it,” Crane said of her new friends. “They understand the pull between here and your family at home and the hardships and what these babies are being put through. We can relate on a different level.”

“This is a journey where you feel alone even though you’re getting so much attention, so this makes it feel less alone having other moms who understand and are feeling the same emotions you’re feeling,” Copenhaver said.

“It’s been amazing having them, and it’s been amazing for our girls to have each other,” Corn agreed. “As hard as this has been, this is one of the blessings that’s come out of it. I think it was fully orchestrated by God to have us all here at the same time and be able to meet and mesh as well as we do.”

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

Mother’s Day is an overwhelming, challenging time of year for bereaved mothers.

That’s why Riley Grief Services hosts a brunch for these moms on Bereaved Mother’s Day (the first Sunday in May) each year to honor them and their children.

Katie Kavanaugh and her wife, Rosa Pasillas Labak, attended Sunday’s brunch at Eagle Creek Park last weekend, just as they have every year since their infant daughter, Niko, passed away at birth at Riley due to prematurity.

That was in 2022, and Kavanaugh and her family (which also includes their 5-year-old) have found a great deal of support through Riley Grief Services in the past three years.

The brunch holds a special place in their heart because it was one of the first activities they participated in as a family to process their grief.

“It is a safe place to explore your grief and figure out how you need to grieve,” Kavanaugh said. “In life, we don’t get lessons on grieving, but it’s one of the most human experiences. And when you lose a child, you’re forced into that grief space.”

Kavanaugh has also taken advantage of free counseling sessions through the program, as well as a family grief retreat and family art therapy.

Amber Nelson’s son Chandler died of cancer in 2022 after a year of treatment at Riley Hospital and before that, IU Health University Hospital. She attends the brunch every year, bringing her best friend with her.

This year’s event was perfect, “even with the rain,” she said. “It is beautiful every year. We bring a picture of our child to display and light a candle to put with it. We make jewelry, eat delicious food, listen to a beautiful poem, and we get to say our child’s name as we receive a carnation.”

The event is also a chance to be present physically and emotionally for other grieving moms, she added.

“We are extremely blessed to have a program like Riley Grief Services and the amazing staff that walk alongside us during these horrible times,” Nelson said. “They are the most welcoming, caring and loving individuals. They always remember and say your child’s name.”

Kavanaugh agrees: “I think Riley’s grief department has been instrumental in helping me figure out what my grief is and how I need to manage it.”

She and her wife are expecting another child this year.

Other events planned this year by Riley Grief Services include Family Day on June 1 at an Indianapolis Indians game; the Riley Grief Retreat Oct. 3-5 at Camp Pyoca in Brownstown, Indiana; and the Riley Candle-Lighting Service on Dec. 14 at Jameson Camp in Indianapolis.

Learn more about services and activities offered here.

Audrey Leisinger’s family had stealthily arrived in the back of the auditorium when the 2025 Riley Nursing Excellence Awards program started Tuesday morning, but she had no idea they were there.

Not until she was named the Margaret Martin-Roth Award winner, and her parents, sister and husband stepped out of the shadows to celebrate with her.

The award, named in honor of a legend at Riley, is the most coveted nursing award at the hospital. It is presented annually to someone who embraces the spirit and skills of the former director of nursing at Riley, who worked with Dr. Morris Green to help transform pediatric care. Martin-Roth died in 2023 at age 102.

Leisinger, a pediatric oncology nurse at Riley for nearly six years and a nurse for 10, was stunned, her eyes brimming with tears, as her family and colleagues wrapped her up in hugs. Even her kids got to be part of the celebration, albeit virtually, through a video.

Her nomination letter reads in part: “Audrey is amazing at building relationships with her team and her patients. Immediately after taking on the new role of nurse navigator, she became indispensable to her physician partners. Her patients and families love her … From little things like personalizing their chemotherapy calendars to writing a special poem to commemorate their bell-ringings, Audrey is incredibly in tune with her patients’ needs and wants. … If I could ethically clone (her), I would do it in a heartbeat.”

She also brings joy and a sense of calm to her colleagues, they said.

“Audrey, you’re an outstanding nurse and your compassion for both your patients and your team is amazing, said service line administrator Meredith McMahan in a short video. “You’re talented, dedicated, caring and always a team player. Your hard work makes such a difference, plus you always know how to bring a smile and a laugh to anyone around you.”

Despite the attention focused on her, Leisinger wanted to share the award with her team.

“I couldn’t do my job without my team and the two amazing physicians I work with. I have great patients and a great team. I love them, and I love taking care of kids.”

Among those congratulating her were Laura Koke and Stacy Nance, previous Margaret Martin-Roth Award winners in hem-onc themselves. The three gathered for a photo, all sporting red shoes in a nod to the family-centered care philosophy at Riley.

“Laura Koke was in this role before I was, and I remember coming to clinic for the first time and seeing this award and seeing her face and seeing Stacy’s face on the plaque and knowing they are amazing nurses,” Leisinger said. “I very much look up to them, and so to be nominated and to get this award alongside them just means a lot.”

Others nominated this year for the award were: Jen Brown, Emergency Department; Katherine Collier, Pediatric Pulmonary; Alyssa Hall, PICU; Kathleen Klemple, ED; Susie McSwain, Simon Family Tower NICU; Lisa Mollenkopf, Riley Maternity Tower NICU; and Erika Pierce, 5 West.

Tuesday’s awards ceremony kicked off Nurses Week, and featured a record number of nominations this year, according to Koke, Magnet Program coordinator, and Megan Isley, chief nursing officer.

“We are here to celebrate you,” Isley told the large group filling the auditorium in the Riley Outpatient Center. “Step back and think about all the lives we change every day. As the number one pediatric healthcare center in the state, think of all the things we are doing. No matter where you are, I bet you can look back at a patient this year and think, wow, that was amazing work we did,” she said.

“The expert care you provide, the compassion, we see it in the feedback we get all the time from our patients and families,” Isley added. “I think if Florence Nightingale were here today, she would be really proud of you.”

Multiple additional awards were presented Tuesday:

The Nurse Excellence Award went to Kara Bush, Behavioral Health. “Kara stays current with the latest research in her field and actively shares this knowledge with her team. … Kara is deeply engaged in the nursing profession and consistently advocates for the well-being of her patients and her colleagues.”

Others nominated were: Nikki Boggess, ED; Carly Cason, 5 West; Jill Chapman, Riley Center of Hope/ED; Tori Coe-Addison, Mother-Baby; Amy De St. Jean, Behavioral Health; Cara Flanigan, Nursing Practice; Brenna Joyce, Center of Hope/ED; Samantha King, ED; Audrey Leisinger, Pediatric Oncology; Kira Logsdon; Burn Critical Care; Valerie Love, Vascular Access; Erin Maddox, 9 West; Tanya Malone, Center of Hope/ED; Joe Shelton, Behavioral Health; Alysen Shields, Labor and Delivery; Elizabeth Thach, Infusion/PHO; and Mackenzie Zehr, Behavioral Health.

The DAISY Nurse Leader Award went to Robin Roller, Gastroenterology. “Robin is a fun, trustworthy, hardworking, compassionate and invested leader. … She creates an environment of learning and camaraderie.”

Others nominated were: Laura Alter, Nursing Administration; Maureen Battles, Nursing Professional Development; Nicole Blanford, Fort Wayne Specialty Clinic; Jen Brown, ED; Ashley Brunic, North NICU; Keegan Caughey, 9 West; Katie Copeland, 5 West; Donna Cox, Behavioral Health; Heather Dewees, 9 East; Emily Gunselman, Maternity and Newborn Health; Sarah Hardacker, Nursing Professional Development; Jaclyn Holtgrewe, ED; Maria Martinez, Behavioral Health; Anne McCallister, Quality and Safety; Ashell Moore, Maternal Fetal Medicine; Brianna Mosley, Labor and Delivery; Sara Murff, 8 West; Kelly Orr, 7 West; and Dianne Seibold, OR.

The DAISY Team Award went to 8 East for “an extraordinary year providing patient-centered care to all.”

Also nominated were: 3 West Cardiac Stepdown, 5 West, 5 West PPC Chairs, Behavioral Health, North NICU PPC, Neonatal-Maternal Simulation Nurse Educator Team, 9 West, Burn Team, ED, High-risk OB Transport, Maternal Fetal Medicine, OBICU, Outpatient Hem-Onc Infusion, SFT NICU Bereavement Team, Small Baby Team in Maternity Tower NICU, Riley Fetal Center/RMT and individual collaborators for the MMC Repair Program, virtual mentors of the Riley Cancer and Blood Disorders Center (5W and 5E).

Riley Children’s Foundation grants went to Laura Gant, RMT NICU, who is pursuing a doctorate in nursing practice; Rachael Harless, Nursing Practice, who is pursuing a master of science in nursing; Carol Hayden, 5 West, who is pursuing a master of science in nursing; Brianna Logston, Q&S, who is pursuing a doctorate of nursing practice; Madelyn Pittard, Pediatric Hem/Onc, who is pursuing a doctor of nursing practice; Brianna Qualizza, Q&S, who is pursuing a doctorate of nursing practice; and Rachal Sperka, CVICU, who is pursuing a master of science in nursing.

The Brittany Gaskins Award was presented to Brooke Robert, Burn Critical Care. “As a new nurse on the burn unit, Brooke has consistently demonstrated the IU Health values in numerous ways, making a significant impact on patients and the healthcare team.”

Others nominated were: Stephanie Ames, ED; Paige Babb, RMT NICU; Ashley Dudley, 9 West; Hailey Hoy, ED; Emma Rutan, 5 West; and Claire Wilhelm, SFT NICU.

The Stephanie Pottenger Award went to Nicole Graham, Heart Center, for her compassion, teamwork, dedication, passion for learning and commitment to patients and colleagues.

Others nominated were: Rachal Ivy and Heidi Scoggins, CVICU; and Sarah Kuntz and Courtney Worland, Cardiac Cath Lab.

The Coach Award went to Angie Hammond, 3 West, for her dedication in onboarding new nurses, while also being “the voice of expertise in a kind, approachable manner.”

Others nominated were: Kayla Beckett, Burn Critical Care; Gabby Brinson, Labor and Delivery; Brooke Christian, 9 West; Tara Coolbaugh, PICU; Jade Depoister, PICU; Sam Ellert, OBICU; Jacqueline Frazier, CVICU; Rachel Gibbons, PICU, Regina Hedge, ED; Katie Klemple, ED; Meaghan Koors, Pediatric Rehab; Kira Logsdon, Burn Critical Care; Melissa Lyles, North NICU; Kristy Mattingly, OR; Crystal Overstreet, Maternal Fetal Medicine Clinic; Kruti Patel, Mother-Baby; Kristin Pothier, Burn Critical Care; Maci Reed, 9 East; Sandy Rivera, Maternal Fetal Medicine Clinic; Amy Sageser, PICU; Katie Schaller, RMT NICU; Megan Thompson, 5 West; Lauryn Watson and Kendal Williams, RMT NICU.

The Partner in Care Award went to Drew Harding, supply chain, for “consistently supporting nurses and nursing in achieving quality outcomes” and for always connecting colleagues with the “why” behind the project he is supporting.

Others nominated were: Adeline Agee, Behavioral Health; Nancy Attebury, Burn; Lindsey Biggs, Q&S; Lori Brookshear, MFM; Hannah Carlson, L&D; Robin Carr, North NICU; Katherine Carter, ED; Brenda Center, 3 West; Araceli Frazier, Behavioral Health, Jeremiah Gamauf, Environmental Services; Anthony Hedge, ED; Jasmine Henderson, 5 East; Brooke Hunter, ED; Amanda Kendall, 9 East; Sandie Kennedy, GI Transplant; Hank Knouse, Developmental Peds; Emily Koehn, 5 West; Cameron Koehne, Clinical Engineering; Alejandro Marcial, ED; Kevin Marshall, RMT NICU; Alyssa Mckillip, ED; Dr. Lee Murphy, physician/ACMO; Kevin Nicholas, Behavioral Health; Teresa Nunn, RMT NICU; Sarah Patrick, Behavioral Health; Gina Petty, AHC Language Services; Hannah Picket, Riley Inpatient Rehab; Bethany Pollock, MFM; Kayla Reddington, Patient Experience; Becky Rose, NICU; Heidi Scoggins, CVICU; Hannah Shuck, Resource; Carly Simeur, ED; Haleigh Smarr, RMT NICU; Jayme Smith, Radiology; Hettie Smith, 9 West; Gabrielle Thomas, Behavioral Health; Ashley Thomas, RMT NICU; and Joshua Wooten, ED.

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

Read this blog to learn more about a fetal echocardiogram—when it’s recommended for pregnant mothers, and how it can provide support for you and your baby.

What is a fetal echocardiogram?

A fetal echocardiogram, or a fetal echo, is a prenatal ultrasound focusing on the baby’s heart that is done during pregnancy when there is a possible problem with the unborn baby’s heart. The test evaluates the structures and function of the baby’s heart, taking detailed images of the fetal heart to determine if there is a problem.

Fetal echoes are typically performed between 18 and 20 weeks of pregnancy but can be done at any point later in pregnancy, too. If your OB doctor has concerns, or if any of the risk factors below apply, a fetal echo should be scheduled. Prompt fetal cardiac imaging leads to the best possible outcomes.

Reasons to Have a Fetal Echocardiogram

Although not necessary for all pregnant mothers, your OBGYN or maternal-fetal provider might recommend a fetal echo if a prenatal ultrasound suspects a possible fetal heart issue. Other reasons for a fetal echo might include:

• Family history of heart problems
• Genetic disorders
• Anomalies or problems involving your baby’s organs
• Twin, triplet, or multiple gestation pregnancies
• Maternal health conditions (such as diabetes, lupus, or other chronic diseases)
• Previous pregnancies involving a congenital heart defect
• In vitro fertilization (IVF) pregnancies

Benefits of Fetal Echocardiograms

There are several important benefits to getting a fetal echo, including:

• Early detection: Finding heart problems before your baby is born allows for better planning and treatment.
• Prepared birth plan: If your baby needs special care after delivery due to a heart problem, your medical team can arrange a proper birth plan.
• Improved outcomes: Early diagnosis of fetal heart problems can lead to better outcomes, including improved chances for survival and less risk to baby, after birth.

What to Expect During the Procedure

A fetal echo is completely safe and painless, and it works like a normal pregnancy ultrasound. It is performed in a calm, comfortable setting and is typically done after 18 weeks gestation. The process looks like:

• Lasts about 30 minutes
• A sonographer or fetal cardiologist will perform the test while you lie on your back.
• An ultrasound probe (small hand-held device) is moved across your belly to capture images of your baby’s heart in real time.

After the test, your fetal cardiologist will carefully evaluate the imaging to learn how your baby’s heart is functioning and give you the results immediately after. If a problem is found, your care team—involving fetal cardiologists, MFM providers and other disciplines—will determine an individualized care plan that will best suit you and your baby through the rest of your pregnancy and beyond.

Peace of mind starts before birth

Though hearing that you might need a fetal echo can be scary, know that it is an important tool that provides answers, guides care, improves outcomes for babies with heart disease, and offers peace of mind before your baby is even born. Whether it rules out a concern or helps your team prepare for a heart condition, a fetal echo can empower you with clarity so that you can raise your baby with great confidence.

Learn more

At Riley Children’s, the Fetal Cardiology Program supports you and your baby at every step of the way, offering comprehensive care for fetal heart conditions. Learn about fetal cardiology at Riley Children’s.

Additionally, for more, read these related blogs about fetal echoes:

• What to Expect During a Fetal Heart… | Riley Children's Health
• Understanding your baby’s heartbeat: A… | Riley Children's Health
• Why fetal echocardiograms are essential in… | Riley Children's Health

Ashley Dudley is a young nurse not quite two years into her career at Riley Hospital for Children. Yet she showed maturity beyond her years as she cared for a young patient recently.

Dudley, a nurse on 9 West, was honored with a DAISY Award last month for her compassionate care and clinical skills. She was nominated by her manager, Keegan Caughey, for the care she delivered over three nights to a patient and family during the patient’s end-of-life transition.

“Ashley operates with a constant sense of calmness and security that radiates to everyone around her,” Caughey said. “Though I know death is something that others here at Riley frequently handle with grace and empathy, it was a new process to provide direct care for a patient on our unit.”

Still, despite limited experience, he added, “Ashley never wavered at doing everything in her power to meet the patient's wishes, doing so with maturity, poise, delicacy and love. Her leadership in that moment will not be forgotten by the unit, and her care will never be forgotten by the family.”

Dudley, who describes Caughey as “one of the best managers I’ve ever had,” said the support he and other team members provided made all the difference and that she was honored to be there for her patient and their family.

Caring for others is in her DNA. She was raised in a small town in southeastern Indiana, the sixth of 10 children.

“I grew up taking care of my younger sisters, and anytime I had little nieces or nephews or cousins around, I’d always be hanging out with them, even when I was a teenager,” she said. “I loved to help other people.”

She attended nursing school at Ball State University and had the opportunity to spend a few days shadowing at Riley.

“I loved the atmosphere at Riley and the kids. It’s definitely been a great place for me.”

Dudley, whose fiancée, Gabi Garcia, is studying for her doctorate in psychology, enjoys playing Spikeball and pickle ball, working out and hanging out with friends and family during her time away from the hospital. She also dotes on her cat, Louie.

Reflecting on her chosen career, she said she has learned a lot from her patients, mainly: Lead with compassion, and don’t take the time you have with people for granted.

“We never know what life is going to bring us.”

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

In this blog, we discuss everything you need to know about brain and spinal cord tumors in children—what they are, common symptoms, and diagnosis and treatment options.

About pediatric brain tumors

Brain and spinal cord tumors are abnormal cell growths that can develop quickly or slowly in the brain or spine. While the exact cause is unknown, some risk factors include exposure to radiation (like microwaves, CT scans, X-rays, etc.) or existing genetic conditions. It is important to remember that there is nothing you or your child could have done to prevent one from occurring.

Brain and spinal cord tumor symptoms in kids

Symptoms of brain or spinal cord tumors depend on the tumor’s size, type and location. Symptoms may be caused when a tumor presses on a nerve or damages a part of the brain. They may also be caused by a tumor blocking fluid that flows through and around the brain, causing the brain to swell.

If your child is experiencing the following common signs and symptoms, it’s important to speak with a healthcare professional immediately:

• Balance problems
• Changes in vision, hearing or speech
• Difficulty walking
• Fatigue or sleepiness
• Headaches, especially when waking up in the morning
• Increased head size
• Memory problems
• Nausea and vomiting
• Personality or behavior changes
• Scoliosis
• Seizures

Diagnosis and treatment options

If you suspect a brain or spinal cord tumor in your child, your pediatric provider will first start with a thorough medical history and physical examination. Other procedures and tests may also be needed to get diagnosis. The Pediatric Neuro-Oncology Program at Riley Children’s consists of a multidisciplinary team of neurosurgeons, neuro-oncologists, neuroradiologists, and more that may perform or order advanced imaging, such as:

• Angiogram
• Biopsy
• Computed tomography (CT)
• Lumbar puncture/spinal tap
• Magnetic resonance imaging (MRI)
• Positron emission tomography (PET) scan
• X-rays

Once a brain or spinal cord tumor is diagnosed, a customized treatment plan will be recommended depending on the size and location of the tumor. Your child’s general health status and age will also determine the best treatment options. Some of the common treatments are:

• Surveillance: Involves monitoring with routine MRIs and appointments to ensure no growth of the tumor and no symptom development.
• Surgery: This is often the first step of treatment to remove some or all the tumor to help guide further medical care, if needed.
• Chemotherapy: A form of medicine that attacks the growing cells of the tumor.
• Radiation therapy: This method uses high-energy beams to kill or shrink the cancer cells.

Prognosis

While about 3 out of 4 children with brain or spinal cord tumors survive at least five years after diagnosis*, your child’s long-term outlook depends on the type, size and location of the tumor, as well as your child’s age and overall health.

Follow-up care and resources

After completion of treatment, regular follow-ups with your medical team are essential to managing your child’s condition. These are important to monitor for worsening symptoms, tumor recurrence, effectiveness of treatment, and managing late effects of treatment. Some children require inpatient or outpatient rehabilitation, such as physical therapy, occupational therapy or speech therapy to help their recovery. You will have direct access to your medical team to help guide and answer any questions that may arise throughout your child’s journey. Riley Children’s also offers a Cancer Survivorship Program, AYA Program, Fertility Preservation and the only Stem Cell Transplant Program in Indiana for additional follow-up care options.

Expert team at Riley Children’s

While the idea of brain or spine cancer can be overwhelming, there’s always hope with the help from the Comprehensive Pediatric Neuro-Oncology Program at Riley Children’s. Through our unique neurosurgery-oncology partnership, our highly skilled team has access to the latest surgical techniques, clinical (medical) trials and state-of-the-art imaging to help your child at every step of the way. To learn more, visit Pediatric Neurosurgery or Pediatric Hematology/Oncology at Riley Children’s.

*Source: American Cancer Society

As the rain fell outside, rubber ducks floated into the Riley Outpatient Center by the thousands today, thanks to a donation from a patient, his family and their community.

Well, mostly these ducks came in boxes, but they are destined to float in patient tubs and be used in therapy and play sessions very soon.

Tristan Abbott, 13, and his mom, Sherry Harp, of Chandler, Indiana, have been collecting little yellow, red, blue and green ducks for the past couple of months to donate to the Riley Cheer Guild for distribution to units with young patients. But these are not just ducks of different colors. There are Disney ducks, Minecraft ducks, tiger ducks, little police ducks and just about any kind of themed duck you could imagine.

The duck collection came about from a conversation Tristan had with a nurse on the burn unit at Riley Hospital for Children, but more on that in a minute.

Tristan became a Riley patient earlier this year after what his mom first thought was a simple sinus infection took an aggressive turn, moving into the teen’s brain.

It’s a tough story, she said, one that she is just now able to tell without crying.

Despite multiple trips to doctors closer to their southern Indiana home, it wasn’t until Tristan was transferred to Riley that he received the care he needed, his mom said.

And not a moment too soon.

“They told us if we had waited one more day, he would have been gone,” Harp said, still unable to believe how quickly a relatively simple condition morphed into a life-or-death situation.

The middle-school student and baseball player was diagnosed with orbital cellulitis, a rare and serious bacterial infection of the tissues within the eye socket, often caused by a sinus infection that spreads to the eye area. Symptoms can include pain, swelling, redness and a bulging eye, as well as fever and impaired eye movement. If left untreated, orbital cellulitis can lead to blindness or other serious complications.

Tristan’s symptoms started back in January when he came home from school complaining about something in his eye, then he developed a bad headache. Eye drops and pain medication didn’t help. The next day he woke up with his left eye swollen shut.

Trips to urgent care and an ophthalmologist followed, and Harp and her husband, Greg, were advised to take Tristan to the emergency room, where physicians eventually arranged for him to be moved to Riley in Indianapolis.

“They told us he had orbital cellulitis and if it reaches the brain, it can be deadly,” Harp recalled.

The Riley medical team, which included neurosurgeon Dr. Thomas Larrew, otolaryngologist Dr. Lauren Sowa and ophthalmologist Dr. Keegan Mechels, as well as infectious disease specialists, quickly mapped out a care plan, which would eventually require three tricky surgeries to remove the infection.

During that time, burn unit nurse Chris Swift developed a connection with Tristan, and the two began talking about Jeeps and the custom of “Jeep ducking” (where Jeep owners leave rubber ducks on other Jeeps) that began several years ago.

The burn unit and other units at Riley go through a lot of rubber ducks, and they’re not just for babies, Riley Cheer Guild director Ann Hannan said.

“Kids who are on the burn unit for burn injuries have to go through dressing changes and burn debridement,” Hannan explained. “They do that in the tub room, so when they have items that can float (like ducks) in the tubs, it’s a great distraction from the pain. We also use them for imaginative play with younger kids – we make up stories and songs.”

And because they’re cute and small, they are fun to hold and can be used like a stress ball, she said. Riley police officers occasionally have “police ducks” that they can hand out to young patients who seem particularly anxious during a visit.

Because Harp felt indebted to Riley, she decided to seek duck donations in her community, thinking she might get about 200. But she ended up with 3,200 ducks for Tuesday’s delivery.

She and her husband, along with Tristan and his brother Sebastian, made the long trip from home to Riley and dropped off boxes and boxes of ducks as a donation to the Riley Cheer Guild.

“Riley saved my son,” Harp said, “so It’s near and dear to me.”

Tristan, who has healed and is back in school, hopes to return to the baseball diamond in the fall. Today, he was on point for the delivery mission – decked out in a brain surgery T-shirt and duck-decorated shorts. He wears glasses now because he lost some vision in his left eye, but he said he feels good.

His mom is counting the family’s blessings.

“Had it not been for God sending us to Riley and having amazing doctors there, we could have lost him. Everybody there is just amazing.”

Learn more about donating to the Riley Cheer Guild at rileycheerguild.org/wishlist

Kristin Lile grew up playing school in the basement of her childhood home. Being a teacher like her grandmother was all she really wanted to do.

So it was especially sweet for her to be recognized as Teacher of the Year at Riley Hospital for Children on Friday in a surprise ceremony attended by fellow educators, therapists, physicians and others who have seen the joy she brings to the job.

The celebration coincided with Lile’s ninth work anniversary at Riley, where she currently teaches on the inpatient rehab unit, as well as supporting neuro-oncology and neurology patients.

“You do so much for our patients and families, and all these people are here because they love working with you,” Madison Stewart, manager of Riley’s school program, told Lile as she walked into a room filled with colleagues cheering for her.

Lile, whose husband, Joe, was also there to surprise her, said she couldn’t do her job without everyone there and many more throughout the hospital.

“I’m thankful so many people support the school program here at Riley,” she said. “Something that’s so special about Riley is how much everyone here values school and how they are so supportive of making sure I have what I need to advocate for our parents and students.”

Erica Maginn-Doss, a speech therapy supervisor on the rehab unit, describes Lile as “a bundle of joy” who does a tremendous job of advocating for her patients.

Physical therapist Lindsay Schaefer agrees. “She’s really made the school program on the rehab unit what it is today. She puts her heart and soul into it every day.”

Last year’s winner, Stacy Willett, passed the invisible crown to Lile, saying teachers don’t seek recognition, but it’s sweet just the same.

“We are all doing what we can in the best way to serve our patients and families. But Kristin always goes above and beyond. She is so knowledgeable and stays positive.”

That positivity comes naturally when you love what you do, said Lile, who loves to read and garden during her time away from the hospital.

“When you’re happy in what you do and you’re surrounded by happy, supportive people, it’s easy,” she said. “I love being able to provide a little normalcy to our kids when they’re in the hospital. I enjoy being a small part of their journey.”

That journey is made just a little easier by Lile, said Stewart, who values her colleague for the passion she brings to her educator role.

“Her families really respect her and gravitate toward her for support,” Stewart said. “And all these doctors here, they really value her and work well with her.”

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

The little boy with the bright eyes has spent half his life at Riley Hospital for Children.

Leo (Leandro) Galvez, who turns 3 on May 3, has captured the hearts of nurses, doctors and therapists on just about every unit of the hospital, starting in the NICU, where he spent five months after he was born.

But his Riley journey started before birth, when his parents, Luis and Cinthia Galvez of Noblesville, learned their baby had Beckwith–Wiedemann syndrome, a rare genetic disorder characterized by overgrowth, an increased risk of childhood cancer and certain congenital features. He also has 1p36 deletion syndrome, another disorder that leads to a range of physical and developmental issues.

“All the specialists started looking at his case,” Luis Galvez said of the Riley team. “They had a good plan when he was delivered; the room was full of doctors.”

That was the beginning of their love story with their lionhearted little boy. (The name Leo from its Latin origins means lion and is often associated with strength and courage.) He would go on to have multiple surgeries and spend time on the fourth floor, the fifth floor, the seventh floor and the eighth floor.

“He is so loved by everyone,” his dad said. “And he loves the attention. He has developmental delays, so he doesn’t speak, but his eyes definitely tell you what he wants.”

Often what he wants are nonstop videos of Ms. Rachel, a YouTuber who has captured the hearts of toddlers everywhere.

“He is Ms. Rachel’s biggest fan.”

But after making the rounds at the hospital for the past three years, through genetics, pulmonology, cardiology, gastroenterology and other specialties, little Leo is back in his own bed now. His parents made the difficult decision to bring him home on hospice care last week.

That’s because Leo’s latest battle – cancer – cannot be overcome, his dad said.

The timing seems particularly cruel.

“For the longest time, Leo had a happy story,” Luis Galvez said. “He was doing great. They did a sleep study last year, and he was taken off the ventilator. He was starting to make a lot of progress.”

Leo was named a Riley Champion by the Riley Children’s Foundation for 2025 and recently had a Riley wagon dedicated in his honor.

Luis and his wife got pregnant again, excited to see Leo become a big brother.

“Then cancer came and set us all back. He was in good shape, and then he wasn’t.”

It was last fall when the family found out Leo had Wilms tumor, a type of kidney cancer that is often treatable. They soldiered on. He had surgery and started chemo, then another surgery.

“He has been so brave, so resilient.”

In February, they learned the cancer had spread to his spine. After consulting with his Riley team, they chose to bring Leo home to spend as much time together as a family as they could.

In the midst of this heartbreaking transition, Cinthia gave birth to the couple’s second child last Saturday – a boy they named Alonso.

The brothers had their picture taken together just days ago, but no matter how long they have together, Luis said Alonso will know his big brother.

“We will teach him how brave his brother was and all the love and care that went into him,” Luis said. “Leo has really showed everyone the value of life and love. He fought every day.”

They remain grateful for the many teams at Riley who cared for and loved their little Leo. And as the family of four settles in at home, they cherish all the small moments.

“Leo is staying comfy and getting spoiled by all of his friends and family,” said Luis, adding that the family will celebrate Leo’s birthday this weekend, a week shy of his third birthday.

“He is the sweetest little boy. He’s so calm. Through everything, he’s been a joy.”

Annaka Salazar is going to prom this weekend. Next month she plans to walk at her high school graduation. And soon, she hopes to get her driver’s license.

All of these things are rites of passage for teens, but they were not a given for Annaka, who has spent every one of her 18 years living with liver disease after being born with biliary atresia, a condition that blocks bile from draining properly, leading to liver damage.

That all changed one month ago when Annaka received a new liver and a new chance at life.

After being so sick for so long, she and her mom, Amber Salazar, are looking forward to living life with a little more freedom as they make plans for the future.

“We’ve been coming here since she was a baby,” Amber said from Annaka’s room at Riley Hospital for Children, where the teen worked on a creative mosaic earlier this month. “There are a lot of emotions, but I’m just so happy for her.”

After a year on the transplant waiting list, Annaka received her donor liver last month. IU Health transplant surgeon Dr. Chandrashekhar Kubal performed the transplant at Riley.

Getting the call that a donor liver was waiting for Annaka was a surreal experience, Amber said.

“We were both asleep, so it was jarring. We had a bag packed like they tell you, but I still was scanning the apartment to make sure we had everything.”

The drive itself, normally a 15-minute commute that Amber could do in her sleep (considering how often she and Annaka were at Riley), was a challenge, and not just because of early morning rush hour traffic.

“I said to Annaka, ‘I don’t know how I’m supposed to drive safely to the hospital when I have all these emotions,’ so it was difficult,” Amber recalled. “It was hard to be in the moment and aware of my surroundings. She is my world, my one and only, so I was thinking about all the possibilities and things that could happen.”

They made it to Riley safely, and the transplant took place that same day.

And now Annaka, who is under the care of renowned Riley gastroenterologist/hepatologist Dr. Jean Molleston, is back home with a liver that is outperforming expectations.

“Her new liver is doing so well, better than I could have imagined,” Amber said. “All of her numbers are just amazing. We are really happy with her progress.”

Annaka, described as funny, smart and thoughtful by her mom, hopes to return to Riley as a nurse someday. She plans to study nursing at Ivy Tech in the fall.

“I just want to help people,” the teen said, adding that she is grateful to her donor for changing her life “in a good way.”

Her mom expresses the same gratitude, for the selfless gift of organ donation and for the village that has surrounded her these past 18 years.

“I am so thankful for everyone who has been part of the journey,” Amber said. “I just love Riley so much. I recommend it to anyone struggling with the health of their children. It’s been a big part of my life.”

To register to be an organ, eye or tissue donor, visit RegisterMe.org or DonateLifeIndiana.org/signup.

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

After 42 years at Riley Hospital for Children, Sandra Kennedy still gets caught up in the wonder of it all.

The medical breakthroughs.

The lifesaving care.

The family focus.

The kids.

“When I first started as a nurse, I wanted to be in a place where you were learning and discovering and not just reacting to what everybody else did,” she said. “I wanted to be where the action was.”

That place, for her, was Riley. She has spent her entire career here, a nurse for most of that time and a nurse practitioner for the past 16 years. Many of those years were spent in the pediatric ICU, which is where she first began taking care of transplant patients.

For the past four years, she has been part of the GI team caring for liver and multivisceral transplant patients on 9 West.

Described as “the backbone” of the GI transplant team on the unit by her colleagues, Kennedy, married to a high school guidance counselor and mother of three, has a passion for her patients, many of whom have battled serious illness for years.

With transplant, she said, “You get to see them progress from being so sick … going from a really hard life where they are suffering, to a life where they look and feel so much better.”

Count Annaka Salazar among them. The 18-year-old Beech Grove High School senior has lived with a bad liver her entire life and has been a Riley kid all that time.

She was born with biliary atresia, a rare liver disease in newborns where the bile ducts, which normally carry bile from the liver to the intestines, are blocked or absent. The blockage prevents bile from draining properly, leading to liver damage.

While medications and surgery can help treat the condition, an estimated 80% of those with biliary atresia will require a liver transplant by the age of 20.

Now nearly a month out from transplant, Annaka is home with her mom, Amber, and her dog, Mila, feeling like a new person and ready to graduate from high school and start college in the fall.

“There’s a better life ahead” for these patients and their parents, said Kennedy. “That’s the rewarding part for me.”

“I really enjoy pediatric care because you get to care for the whole family,” she added. “The kids are really great, and this gives them the opportunity to have a great life.”

Once they have a transplant, “they look better, they grow better, their nutrition is better, and their activity is better. It is so good to see that progression,” she said.

Advances in surgical techniques and medications have helped improve outcomes for transplant patients over the years. But the need for organ donors is great.

“It truly is a selfless gift that everyone should speak to their family about,” Kennedy said. “It is offering life to someone who didn’t have that possibility before. They could have died of biliary atresia within two years, but now they can live a full life.”

The organ transplant programs at Riley are part of IU Health Transplant, which offers a living liver donation program. The liver is the only organ in the body that regenerates to its full size.

A liver from an adult living donor can be split, with a portion growing back to normal size for both the donor and recipient. This is similar to when a liver from an adult deceased donor is divided and transplanted into two patients, with a smaller portion going to a child, and the partial transplanted liver growing to a normal size in the body in time.

At death, those organs are no longer needed by you, Kennedy reminds us.

“You have the opportunity to make a big difference in someone else’s life – to let them live. I would hope everyone would think about organ donation, consider it for themselves, and most of all, let someone know.”

Unlike the adult transplant world, Riley does not have a huge volume of liver or multivisceral (multiple abdominal organs) transplants each year. There were approximately 11 last year, Kennedy said.

IU Health transplant surgeons Dr. Richard Mangus and Dr. Chandrashekhar Kubal perform pediatric transplants at Riley.

Kennedy then follows those patients after transplant while they are still in the hospital and when they return for checkups. It’s a system that works well, she said, and offers the opportunity for full collaboration among the transplant team, including nursing, education, social work, nutrition, child life and psychology.

“The staff here is so supportive, especially on 9 West,” Kennedy said. “They suffer along with the families when they’re going through a rough time. We as a group try to get through things together.”

That sometimes includes the loss of patients. Those children are never forgotten, she said.

“They fought so hard for so long.”

And that is why Riley is so important, she said, because when kids are here, they get to be kids – to play and learn and accomplish things.

“We treat the whole person, and we are not afraid to show emotion and feel those feelings,” she said. “We make a difference in their lives.”

Kennedy, who grew up in Anderson and fell in love with medicine and the idea of nursing as a form of service at a young age, said there is no place like Riley.

“Every family out there has been touched by Riley in some way. We can do so much, and we are so lucky to have Riley here in our own backyard.”

To register to be an organ, eye or tissue donor, visit RegisterMe.org or DonateLifeIndiana.org/signup.

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

It was two weeks before her 16^th birthday last December. Days before the start of competition for the dance team she cherished.

Aleta Frerichs of Lafayette came down awkwardly during a modified headspring at dance practice. She heard the pop in her knee and felt something shift.

“When I landed, I knew something was wrong.”

Still, she tried to shake it off and continue dancing.

“They were five days away from their first dance competition of the season, so she was locked in and wanted to be there for her team,” Deanna Wise-Frerichs said of her daughter.

But it wasn’t to be.

Aleta went to her pediatrician the next day, and tests confirmed she had torn her ACL. The physician recommended she go to the pediatric sports medicine team at Riley Children’s Health for further evaluation and treatment.

The sports medicine clinic at Riley Children's Health at IU Health North is an hour away from their Lafayette home, but they didn’t think twice about making the trip, Wise-Frerichs said. It helped that both Aleta and her sister had some experience with Riley previously.

There, they met orthopedic surgeon Dr. Gunnar Tysklind, who completed medical school at Indiana University School of Medicine, followed by orthopedic residency at Akron General Hospital (now part of the Cleveland Clinic) and fellowship training in pediatric sports medicine at Boston Children’s Hospital. He has been with Riley for nearly five years.

An athlete himself in high school and college, Dr. Tysklind still plays soccer recreationally, so his interest in sports medicine comes naturally.

When he first saw Aleta a few days after her injury, he sensed how overwhelming it was for her.

“There is a lot going through these young patients’ minds,” he said. “Will I dance again? How is school going to go? How am I going to sleep?”

The big question – will I dance again – weighed heavily on both mom and daughter’s minds.

“I knew I wouldn’t be able to dance that Saturday for the competition, but I still hoped for at least part of the rest of the season,” Aleta said.

Instead, she missed it all. She underwent ACL surgery at IU North in mid-January and returned to see Dr. Tysklind and medical resident Dr. Jon-Luc Poirier for a three-month checkup last week.

The first thing Dr. Tysklind noticed was that her smile was back.

“I’m feeling much better, hopeful,” she said.

The soft-spoken teen, a straight-A student who wants to study aeronautical engineering at Purdue University, is now walking without assistance. Her knee has the appropriate range of motion, and she is regaining her strength, thanks to regular physical therapy.

She won’t be cleared to do any serious dance moves that require jumping or spinning for several months, but practicing simple choreography and working with a personal trainer will be OK, Dr. Tysklind told her.

“The stuff I get worried about is the cutting, pivoting and hopping around with weights,” he said. “We’re not quite ready for that, but any of your foot-planted activities are good.”

That’s a step in the right direction for Aleta, who has been dancing since she was 5 years old.

“I can’t remember a life without dance,” said the high school sophomore who mostly performs jazz and hip-hop. “It was really hard to have one of the most important parts of my life just gone.”

But with the help of friends and her family, she has pushed through the hard parts and now wants to help other young people who are struggling with a similar challenge.

“I want to let them know it will get better,” she said. “It just takes time.”

She has been inspired by other people’s stories of overcoming injuries, especially on TikTok, her mom said.

“To be an athlete like she is and to have this injury take out a year of her high school dance career, there’s definitely been some grieving,” Wise-Frerichs said. “But she’s been encouraged by dancers who have documented their recovery.”

And while Aleta is eager to rejoin her team as they begin practicing for the next season, she knows she can’t push it and risk a repeat injury. For now, Dr. Tysklind has given her the green light to ramp up her physical therapy without taking her eye off her goal – to be completely healed before she takes the floor in competition again in the fall.

She will return for a follow-up visit in three months, at which time she will be fitted for an ACL brace, then she will be scheduled for an MRI about two months after that, as well as return-to-sport testing, before she can be cleared to fully dance again.

It can’t come soon enough for Aleta, who has maintained her connection to dance by cheering on her team and continuing to teach younger kids at the local YWCA where she had her first lesson as a child.

She hopes to join the Purdue Golduster Dance Team someday, performing alongside her sister who is in the school’s marching band.

Aleta also plays saxophone and piano and enjoys painting and gardening, but dancing is her passion, so she intends to follow the healing regimen set out by the Riley sports medicine team to give her the best opportunity for success in the future.

She is the kind of motivated patient Dr. Tysklind likes to see because she is working hard to heal.

“Therapy is rough,” he said. “It’s a lot of work.”

The flip side is that sometimes these patients want to do more before they should, “so you have to reel them back in,” he said. “The knee might be feeling good, but that doesn’t mean you can push the limits.”

It can be tricky to assess when a patient is ready to come back to their sport, he acknowledged, but research has shown that about nine months is appropriate.

“We test it at six months and nine months to see how the knee is performing,” he said, noting that the first two years after an ACL tear is the riskiest period for reinjury. And young females are especially at risk for ACL injury.

Dr. Tysklind, who is supported by another pediatric orthopedic physician, a resident and a sports psychologist at IU Health North, said while Riley Children's is well-known for its excellence in caring for the sickest of the sick, the pediatric sports medicine program is the only one in the state exclusively focused on children and teens.

“Here, we have everything they need.”

Click here to learn more.

“Only a handful of pediatric hospitals across the country offer a full array of these advanced, less invasive procedures, which can be highly effective and serve as important alternatives to open surgery in some cases,” said Brett J. Hoskins, DO, pediatric advanced endoscopist and physician leader of the advanced endoscopy program at Riley Children’s. “We’re filling an important gap in care for children in Indiana and the Midwest, providing procedures in a specialized field that’s relatively new and emerging.”

Fellowship trained in pediatric gastroenterology and endoscopy at Johns Hopkins University School of Medicine, Dr. Hoskins joined Riley Children’s in 2023 to help launch the Pediatric Advanced Endoscopy Program with Marian Pfefferkorn, MD, director of endoscopy.

The new program at Riley Children’s currently offers these advanced endoscopy techniques:

• Balloon-assisted enteroscopy (BAE)
• Botox injection
• Complex polypectomy
• Endoluminal functional lumen imaging probe (EndoFLIP) and EsoFLIP
• Endoscopic incisional therapy
• Endoscopic mucosal resection (EMR)
• Endoscopic retrograde cholangiopancreatography (ERCP)
• Endoscopic ultrasound (EUS)
• Esophageal, pyloric, and intestinal stricture dilation
• Esophageal variceal banding
• Gastrointestinal bleeding control
• Gastrointestinal stent placement
• pH/impedance monitoring
• Peroral endoscopic myotomy (POEM) and third space endoscopy
• Transnasal esophagoscopy (TNE)
• Video capsule endoscopy

Most of the procedures are performed at both Riley Hospital for Children in downtown Indianapolis and at Riley Children’s Health at IU Health North in Carmel, Indiana. This ensures patients and families have access to the specialized services and features of a leading pediatric hospital, including pediatric anesthesiologists, child life specialists, nurses and team members specially trained to care for children.

In addition, Dr. Hoskins and the advanced endoscopy team at Riley Children’s have a strong collaborative relationship with adult GI specialists at Indiana University Health. With both groups part of the same IU Health system, there are numerous opportunities to share resources and expertise that contribute to exceptional patient care. For example, based on the inherent lower volumes associated with pediatric ERCP and endoscopic ultrasound, adult GI specialists perform these procedures with support from endoscopists at Riley Children’s.

“Having these advanced, minimally invasive procedures available at Riley Children’s means that families don’t have to travel far to access the latest techniques for diagnosing and treating complex GI conditions,” said Dr. Hoskins. “These procedures often allow for faster recovery and, in most cases, come with minimal risk of complications.”

There are not enough tissues in the small conference room on Riley Hospital for Children’s fourth floor.

One by one, people step inside the room to share their memories of a kind, gentle and joyful man, each grabbing a tissue to wipe away tears as they talk about Carmelo Rodriguez, who passed away suddenly Feb. 24 after dealing with a heart condition for several years. He was 59.

“He was the heart of our unit,” said Stacia Nickell, a veteran nurse leader on the neonatal intensive care unit who hired Rodriguez as an equipment technician 16 years ago. “Losing him was like losing a piece of our heart.”

“He was a father figure and a mentor to me,” said Alfredo “Freddy” Saucedo, who worked alongside Rodriguez for six years. “He taught me patience and how to do things the right way. He taught me to be there for others. He was always there for me.”

Indeed, he was there for everyone in his life, agreed Caryn Sundling, a NICU nurse who knew him for more than a dozen years.

“There are not enough words for Carmelo,” she said. “He was all the positive things – kind, considerate, reliable, beyond helpful, just a perfect person. He was wonderful to everyone.”

Amy Bales, manager of clinical operations for the NICU, was already crying when the first words came out of her mouth in that conference room last week. There was just one tissue left.

“I’ll never forget our last conversation. He was talking about his health, but chuckling – he was always laughing – telling me, ‘I’m going to keep going, Amy. I’m always here. I’m not tired. This keeps me going. I love my job.’”

Rodriguez frequently stopped by Bales’ office near the end of the day, just to say hi and sometimes empty the trash even if it wasn’t part of his job. Those visits often were the highlight of her day.

“I never met anyone who took more pride in their job,” she said. “He was so appreciative of everything this unit did for him, and he would always tell you that.”

But it was what he did for the unit and everyone in his orbit that people will remember. He was the kind of person who makes you want to be a better person.

“You just had to know him to feel all the feels,” Bales said.

Olivia Rodriguez, Carmelo’s wife for 29 years and a longtime secretary on the NICU, knew him better than anyone. He made her laugh, he fixed her coffee at 5 every morning, he drove her to work.

And sometimes he drove her a little crazy – with his love for the Dallas Cowboys, his obsession with toy collector cars (real ones, too), his zeal for hats and holidays (her garage is crammed with decorations for every celebration) and his ability to talk to everyone, while also outworking most.

“He was my friend, my crazy man,” she said. “He was always happy, and he kept me happy.”

Born in Mexico, her husband had 10 siblings and countless nieces and nephews, whom he showered with gifts and love. One of his nieces, Alicia Rodriguez Acosta, also works as a secretary in the NICU.

“A man of vibrant spirit, Carmelo had a passion for dancing, particularly to the rhythms of Mexican music. He was a gifted storyteller, captivating listeners with his tales and experiences,” read his obituary.

His funeral services, held last month in Speedway, attracted scores of Riley team members, according to Nickell, who stayed from beginning to end.

“There were probably 200 people from Riley at the service,” she said. “That speaks volumes about him.”

People came from supply chain, environmental services, the operating room and the NICU, all with stories to share about his impact on them.

And no doubt he would have known all their names, Nickell said, just like he knew the names of all 200-plus people who work in the NICU. He had a gift for connecting with people. And they were richer for it.

“Anyone who worked with him could tell you he never had a bad day,” she added. “He loved this place. He wanted to be here.”

Now that he is gone, the hallways of Riley are a little quieter. His laughter no longer rings out, but it still sings in the hearts and memories of his friends, his family and his team.

Olivia Rodriguez said she returned to work earlier than she needed to because she feels closest to her late husband at Riley. Sitting in the same little conference room where she often shared lunch with him, looking at a memory book that the NICU made for her, feeling their support – it is comforting.

She still has lunch in this room, offering a quiet prayer for the man who captured her heart 29 years ago.

“It feels like he is still here,” she said. “For me, it’s like he’s on vacation, like he hasn’t really gone. I’m just waiting for him.”

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

In February 2024, Indiana had its first case of measles in five years in Lake County. Indiana is currently experiencing a measles outbreak in Allen County that began on April 7 and raised the number of people infected in the state to six. The low rates of immunization in Indiana may be cause for concern. About 95% of individuals need to be vaccinated against measles to help prevent outbreaks through herd immunity. But according to the Indiana Department of Health, almost 10% of Indiana kindergarteners are not up to date on their MMR vaccines, which protect against measles, mumps and rubella. In specific counties, this rate is even lower.

Learn more about measles and what you need to know to stay safe:

What is measles?

Measles is a highly contagious disease that spreads through the air when someone with an infection breathes, coughs or sneezes. You can catch measles from someone simply by being in the room with them, even up to two hours after they leave. Measles causes a red, blotchy rash on the skin that typically begins in the face and spreads downward on the body.

Someone who contracts measles will probably be contagious for several days before they know they are sick. Symptoms of measles show up seven to 10 days after contact with the virus, and may include:

• A high fever, which can rise past 104° F
• Coughing
• Runny nose
• Loss of appetite
• Red, watery eyes or pink eye infection (conjunctivitis)
• Tiny white spots may appear in the mouth
• A rash that begins as flat spots near the hairline and spreads to the neck, trunk, arms, legs and feet. The rash typically appears two to four days after other symptoms begin

Measles is a virus, so there’s no treatment available. The only option is to alleviate the symptoms.

There’s a possibility that contracting measles can make you more vulnerable to other infections. Scientists are learning more about how measles causes the immune system to “forget” how to fight off other infections in what’s called immune amnesia. This can last for years after having measles.

Who’s at risk for measles?

Anyone who hasn’t had measles or two doses of the MMR vaccine is at risk for this virus. While some people get sick from measles and then pass the virus in a couple weeks, this disease can also cause complications. Complications include ear infections and diarrhea. About one in 20 people suffer severe complications like pneumonia and about one in 1,000 experience brain swelling. In the United States, about one in five people who are not vaccinated and get the measles will be hospitalized, and about one to three of every 1,000 children who get the virus will die from severe complications.

Measles is particularly dangerous for:

• Children younger than five years of age
• Adults older than 20 years of age
• Pregnant women
• People who have weakened immune systems, such as people with leukemia or an HIV infection

How to prevent measles

The best way to avoid contracting measles is by getting vaccinated. The MMR vaccine is delivered in two shots and proves 97% effective against measles. More than 50 years of research on tens of millions of infants and children has produced data showing that the MMR vaccine is safe and effective. The MMR vaccine does not cause autism, and serious side effects from the vaccine are rare. Though vaccine skepticism has led to drops in immunization rates, local health officials say the MMR vaccine continues to save lives.

There are two types of vaccines for measles: MMR and MMRV, which also vaccinates against varicella, or chickenpox. For adults, these two doses are delivered at least 28 days apart.

Children typically receive the first dose of MMR between 12 to 18 months of age and the second one between four and six years. During an outbreak, infants can get a dose of the MMR vaccine as early as six months of age. This is not considered part of the routine vaccine series, and your child will still need to receive two doses of MMR after they turn 12 months of age. When a child has already received a dose of MMR after turning 12 months of age, they can receive the second dose as early as 28 days later. They will then be considered fully vaccinated.

If you’re unsure about the vaccination status for you or your family, the Centers for Disease Control offers a guide to track down vaccination records.

If I’ve been vaccinated against measles, do I need a booster?

If you’ve had the two-dose MMR vaccine, you do not need another immunization. If you’ve contracted the measles virus in the past, you’ve also developed life-long immunity and do not need a booster. However, if you had a measles vaccine before 1968, you may need a booster because that vaccine was not as effective as current options.

Talk to your doctor if you want to schedule a vaccination are uncertain about your vaccination status. If you think you have measles, be sure to stay home and take steps to prevent the spread the virus.

Remember:

• Measles is a highly contagious viral disease that can cause severe complications.
• Young children and people who are pregnant or immunocompromised are most at risk for severe illness from measles.
• There’s no treatment for measles, only symptom management.
• The two-dose MMR vaccine is highly effective at preventing the measles virus.
• People who have had the two-dose MMR vaccine or experienced the virus have lifelong immunity.
• Ask your doctor if you are not sure of your vaccination status.
• If you are concerned that you or your child may have measles, call the doctor’s office first before seeking care. This helps them better care for you and provide additional instructions to keep everyone safe.

Kiersten Vetter is a little on the shy side, but she has a wicked sense of humor, a wit that has only sharpened since she underwent surgery, chemotherapy and radiation for a rare brain tumor.

When Riley Children’s Health neuro-oncologist Dr. Alex Lion asked Kiersten during a recent visit if she was experiencing any headaches, she said nothing, choosing instead to slyly point to her parents, Scott and April, who had joined her in the exam room.

They laughed, he laughed, and she smiled, delighting in her signature sarcasm, also evidenced by the T-shirt she wore, giving her tumor one out of five stars.

For Scott and April Vetter, this is the child they know and love, a child who freely admits she prefers animals to people. And who doesn’t shy away from speaking her mind.

“She likes to ruffle my feathers,” April said.

Kiersten, who just turned 13, has had a rough time over the past 18 months or so. She was 11 when the real headaches started – back in August 2023.

The youngest of three siblings, she and her family live on a farm on the Indiana/Ohio line, in the tiny town of Hicksville, Ohio. August is a busy month for the family, with all three kids showing animals in 4-H. Kiersten, who describes herself as “farm girl-tough,” raises pigs and goats.

SEEKING ANSWERS

Her mom remembers how Kiersten woke up vomiting one morning in early August 2023. She went back to bed and seemed to be fine later. The next week, it happened again – twice. When it happened the following week – county fair week – April called the pediatrician, who theorized it was anxiety-induced acid reflux.

School started the next week, and Kiersten made it to only one or two days of classes before it happened again. Off they went to see the nurse practitioner at their pediatrician’s office, who suggested it was a body image issue, a notion both mom and daughter rejected.

It was about that time when April’s mama bear instincts really kicked in, and she asked for a referral to a Riley gastrointestinal specialist, but the appointment was a few weeks out.

The next day, Kiersten vomited again, and April took her straight to the emergency department at a Fort Wayne hospital, which eventually transferred her via ambulance to Riley, where mom and daughter arrived at about 1:30 in the morning.

“They knew within an hour or so what it was,” April said, recalling how multiple doctors met with them in the ED at Riley, trying to gently break the news that Kiersten had a rare malignant brain tumor called a teratoma.

A teratoma is basically a mass of tissue, including hair, muscle, bone and teeth, derived from a person’s own germ cells. The cause is not completely understood.

As Riley neurosurgeon Dr. Jignesh Tailor explained to Kiersten and her parents: “It’s kind of like a little mini-Kiersten inside of her brain.”

The tumors themselves are rare, he said, especially in the brain, and while he had seen them before, this was the first one he’d operated on at Riley.

It was an anxious time for the entire family. One person who helped relieve some of that anxiety on Kiersten’s part was certified child life specialist Maddie Rodriguez, who formed a tight bond with the young girl, especially in those early days.

“Maddie is a big part of Kiersten’s story,” April said. “When the nurse said that child life was coming in to see her, we had no idea what that meant.”

They would soon find out.

“Maddie flung the door open and said, ‘what’s going on in here, kid?’ We all looked up, like who is this lady? But Kiersten instantly clung to her.”

BUILDING TRUST

Remember how Kiersten said she doesn’t really like many people? Well, count Rodriguez among her favorites. The two just clicked.

“I still remember meeting Kiersten and her family for the first time,” Rodriguez said. “Kiersten is tough and may seem like a tough cookie to crack, but once she opens up, she is fierce, witty and so incredibly kind. As child life specialists, we work to see the patient as an individual and a child first. Although this new and devastating diagnosis was lingering over Kiersten and her family, I knew in order to help gain Kiersten's trust, we had to get to know one another as individuals first to build that connection.”

So, while her mom and dad stepped out of the room, Kiersten and Rodriguez spent time talking about her interests, not her diagnosis, taking the time to let Kiersten be a kid.

“We talked about goats and pigs, we played Barbie fashion, we talked about school ... this may seem small, but our trust and rapport clicked and continued to grow from that moment,” Rodriguez said.

That was key in Kiersten’s treatment, both Dr. Lion and Dr. Tailor said.

“Maddie was a big part of that surgery discussion and helped her get through that,” Dr. Lion said. “Our team has always been multidisciplinary. I love being a neuro-oncologist, and I love being a physician, but I need the nurses and child life specialists who sometimes connect with patients more than I can.”

“The child life team made a big difference for her,” Dr. Tailor agreed, recalling how Kiersten initially was reluctant to talk much.

When Kiersten woke up after her first surgery in early February 2024, the first person she asked for was Maddie, her mom said.

Unfortunately, the neurosurgery team at first was only able to remove about 5% of the plum-size tumor because of its thickness and location. It was as hard as a rock, April recalled.

Dr. Tailor, who had consulted with colleagues at Johns Hopkins and St. Jude, among others, wanted to go back in to remove more, fearing without additional surgery, Kiersten would not survive more than six months to a year.

CHILD LIFE SUPPORT

“We didn’t handle it really well,” April said. “We disagreed on the surgery. I was worried about her having another operation so close to the first one.”

Rodriguez was asked to come in to talk with Kiersten and her parents. She came in with options A, B and C on a poster board, April recalled.

“Maddie was pretty crucial in all of it,” she said.

Kiersten looked to her dad for his opinion, and together they decided to go ahead with another surgery – on Valentine’s Day 2024.

Rodriguez was there to take her down before surgery, another all-day operation.

April remembers Dr. Tailor talking to them late that night in the PICU.

“He said, ‘I think we got it all.’”

She was almost too scared to believe it, but follow-up scans confirmed that the tumor was gone. And repeat MRIs, lab results and visits with Dr. Lion every three months reaffirm that good news more than a year out from treatment.

“I’m so proud of her,” Dr. Lion said during their recent follow-up appointment. “She has been so courageous.”

While the type of tumor Kiersten had is not common, he said Riley sees a few each year and the team is part of a nationwide group that helped develop treatments to cure this kind of cancer in children.

WORKING AS A TEAM

One of the first people Kiersten sought out when she returned to Riley last month was Rodriguez.

Asked about their bond, Rodriguez said she and her colleagues worked to help Kiersten feel like she was a part of her own care team and learned to advocate for herself.

“We wanted to make sure she understood in a developmentally appropriate way her brain tumor diagnosis, the different procedures she had to encounter, her cancer diagnosis and what treatment would look like,” Rodriguez said.

“We did this through interventions like creating Play Doh brains together for teaching, breaking down the big medical words doctors use, practicing port access through medical play, and fully assessing that she understood what was going on with her body.”

She said she is lucky to work alongside physicians who understand and rely on the child life team to support patients and families.

“Dr. Tailor, Dr. Lion, Dr. (Chiari) Flores and I worked as a team to create an emotionally safe approach to discuss and explain with Kiersten what the different treatment options looked like moving forward,” Rodriguez said. “During these conversations, I was so incredibly proud how she advocated for breaks, took the time to feel her emotions, and felt safe to ask me the hard questions that I could then relay to Dr. Lion and Dr. Tailor.”

Today, Kiersten is back home on the farm, gearing up for the busy summer season with the animals in her care. Just last week, she and her family returned from a Make-A-Wish trip to the Bahamas, where Kiersten was able to swim with baby pigs (apparently that's a thing) and the family swam with dolphins.

While she adored swimming with pigs and dolphins, Kiersten told her mom her favorite part of the trip was playing tag as a family in the swimming pool.

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

Nick and Alyssa Pugliese will forever be grateful to the team at Riley Hospital for Children that safely delivered and cared for their baby girl. But one nurse in particular stands out.

Breanna Magness, a neonatal intensive care unit nurse at Riley for three years, was surprised with a DAISY award recently, after being nominated by Alyssa Pugliese.

Valerie Pugliese was born last November and required a lengthy stay in the NICU due to a birth defect called omphalocele. The abdominal defect, diagnosed at Alyssa’s 20-week scan, results in abdominal organs protruding outside the body.

It was a devastating diagnosis for the Pittsboro couple, but they were comforted by the results of genetic testing, which revealed no other serious health concerns for their baby.

And while the 56 days that Valerie spent in the NICU were long and hard, the path was easier because of Magness, they said.

“We knew during pregnancy that (Valerie) would be born with a defect that would require a long stay at the Riley NICU,” the new mom said in nominating Magness. “We were scared and nervous. We met Breanna our first week in the NICU, and we knew right away there was something special about her.”

Watching the young nurse take care of their daughter brought them a sense of relief during her stay, they said.

“The way she would interact with our daughter and care for her like she was her own settled our nerves. We hated leaving each night, but when Bree was our nurse, we knew she would be in good hands, and we could relax and feel more comfortable leaving.”

Magness, who started her nursing training as a patient care tech at IU Health Methodist Hospital, accepted a position as a registered nurse in the Riley NICU after graduation from nursing school.

“I have wanted to be a NICU nurse for as long as I can remember,” she said. “My niece was a NICU baby for a little bit, so I saw the impact nurses had. I just loved it.”

Being recognized with a DAISY for clinical excellence and compassionate care means the world to her, she said, and being surprised at work, surrounded by nurses, physicians and other colleagues, was truly special.

Nursing is a challenging career, but the rewards go beyond recognition ceremonies, as nice as they are.

“I love that I can help these families,” she said. “Knowing that I can give them reassurance and comfort to be able to leave and know their baby is being well taken care of. And I love the good days when I can discharge a baby home, a baby who’s been there a really long time and has been through so much.

“Even on the bad days,” she added, “it’s nice just knowing I can help relieve some anxiety or stress that these parents may be going through on some of the worst days of their lives.”

That compassion is what Alyssa and Nick witnessed from mid-November, on through the holidays and into January before Valerie was discharged home, with Magness there to wish them well.

Now almost 5 months old, their daughter is doing well, Alyssa said. She requires no respiratory support, and her feeding tube has been removed. Pediatric surgeon Dr. Alan Ladd will operate to correct the baby’s abdominal defect when she gets a little older.

Alyssa still gets emotional thinking back to her daughter’s NICU days and seeing how Magness doted on Valerie.

“She has been a godsend to us. I’m not sure we would have made it through the NICU stay without Bree. She’ll probably always be in our lives.”

And when Valerie gets a little older, she likely will get the chance to reconnect with Magness, Valerie’s mom said.

“I can’t wait for my daughter to meet the wonderful nurse who took such great and gentle care of her.”

Magness and her husband, Jared, don’t have children of their own, but they do have a Goldendoodle that Magness considers her baby. Outside of Riley, she enjoys spending time with friends and family and traveling, most recently to Italy with her husband.

Nominate a nurse who exemplifies excellent clinical skills and compassionate care here.

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

Brittany McCormick laughs when she talks about the energy of her 5-year-old daughter, Clarke.

“This kid has one speed – running. She never stops moving,” the young mom said by phone from her Evansville home. “She is on a competitive dance team, she likes to do acro-ninja, swim, ride bikes, and she loves animals.”

All of that might have been in doubt when Clarke was born in Evansville in 2019, diagnosed with a severe cranial defect (metopic craniosynostosis) and heart issues. On top of that, she had difficulty feeding and couldn’t gain weight.

“I immediately knew something was wrong when she was born,” said Brittany, who, along with her husband, Lucas, advocated for their daughter to be transferred to Riley Hospital for Children in Indianapolis.

There is a reason they wanted Clarke to go to Riley. Both parents were Riley kids themselves, and in fact, their love story took hold at Riley 15 years ago.

At that time, the two were in high school, and Lucas was being treated for severe kidney disease at Riley. He underwent two kidney transplants at Riley, one in 1997 and another in 2013. Long before that, Brittany was treated at Riley as a baby when she had a staph blood infection and digestive issues.

“We owe a lot to your hospital,” she said. “When Lucas ended up getting really sick, I asked my mom to take me up there every single weekend until he came home. She said she got to see us fall in love.”

Brittany remembers how the two explored the hospital hallways, tossed coins in the fountain and frequented the Riley library during Lucas’ lengthy stays.

“We owe our whole lives to this hospital.”

So, it made sense that they sought the comfort and expertise of Riley when their newborn daughter needed care.

Before she turned 1, Clarke underwent cranial vault reconstructive surgery by Riley neurosurgeon Dr. Laurie Ackerman. Cranial vault surgery reshapes the bones of the skull to correct an abnormal shape or size.

Brittany recalled the surgery being more traumatic for her as a mom than for her daughter.

But it went well, as did follow-up visits with cardiology, plastic surgery and ophthalmology.

Last month, Clarke returned to Riley with her mom to follow up with Dr. Ackerman, and the surgeon took a moment to pose for a photo with her young patient.

When Brittany thinks back to the early days when she first met Dr. Ackerman after Clarke was born, she says she was an “emotional mess.”

“My husband was having open-heart surgery, and I had severe postpartum anxiety. I didn’t want anyone to touch my baby.”

Dr. Ackerman, though, had an “amazing bedside manner,” she recalled. “She took great care with my baby.”

She extends the same gratitude to the nursing staff and the other physicians involved with her care.

“They have always been so supportive. Anytime we had concerns, I could call with questions, and they would put to rest any fears.”

As their daughter has healed, so has Lucas, who underwent his third kidney transplant last summer. Brittany captured a photo of her husband walking hand-in-hand with Clarke after his surgery.

“His hands were always horrifically cold from poor circulation,” Brittany explained. “The first thing Clarke said when she took his hand was, ‘Daddy, your hand is warm!’”

With their little girl excited to start kindergarten in the fall, the couple wanted to share their gratitude in a more public way, reaching out to Riley’s social media team.

“You would never guess she had surgery on her skull,” Brittany said of their daughter. “Nobody would believe there was something wrong with this kid for the first two years of her life. The transformation is like night and day,” she said.

“Riley Hospital holds a very special and cherished place in our hearts.”

A miracle in the lanky shape of an 18-year-old high school senior walked into Riley Hospital for Children last month.

A miracle because Matthias Pfister might never have walked out of the hospital in the first place – five years ago when he was critically injured in an auto accident near his Danville, Indiana, home.

Matthias suffered a devastating head injury, multiple broken bones and a stroke for starters. He was comatose, literally dying, said doctors who brought him back from the brink.

The teen’s return to Riley was triumphant in ways his doctors, his therapists, even his own parents can’t truly know.

Only Matthias knows the extent of the internal and external struggles he faced hour after hour, day after day, month after month to get him here today.

He has come to Riley with his parents, Kyle and Lauren Pfister, to reunite with some of the intensive care unit team who cared for him in those early uncertain days when his life was literally in their hands and in the hands of the neurosurgery team.

“He will probably walk out of the hospital as one of the truly most amazing recoveries I have ever seen,” said former Riley neurosurgeon Dr. Jeffrey Raskin in 2020.

PICU physicians Dr. Matthew Friedman and Dr. Brian Leland are inclined to agree, but what has brought them to the lobby of Simon Family Tower five years later to see this young man – a boy of 13 when he was injured – is the chance to witness a happy ending in the flesh.

As PICU doctors, they don’t often get the chance to see their patients once they are stable enough to be moved to another unit.

“This is what we hope for,” Dr. Friedman said, as he took in the sight of a 6-1(ish) Matthias greeting him with a solid handshake and a half hug. “These are the patients we live for and train for.”

A “full-court press” is how he describes the medical intervention that saved Matthias’ life. It’s a basketball term Matthias can appreciate. The senior at Ben Davis High School manages his school’s basketball team and plays the game in a church league. He also plays golf for his school’s team and bowls.

Dr. Friedman, who saw Matthias a few months after the accident when he was still struggling to walk and talk in rehab, recalled that his patient suffered a severe traumatic brain injury, bleeding in multiple areas of the brain, a stroke and dissection of an artery in his brain.

Surgeons performed a decompressive craniectomy to remove part of his skull, repair scalp lacerations, debride the brain and stop the bleeding.

“It takes a huge team of people between the neurosurgery team and the PICU team and all of our nurses, respiratory therapists, physical therapists and rehab,” Dr. Friedman said.

So to see that same patient five years out from the crash smiling and joking with doctors and therapists on the PICU and in the inpatient rehab unit, even pointing out his old room in rehab, was a day to remember.

“To see you now is just incredible,” Dr. Friedman said. “In the ICU, so often we see kids and … get them better, but where they end up, we don’t always know, so thank you so much for coming back so we can see how awesome you’re doing. Seeing patients recover and come back and tell us they’re going to college, that’s what makes it worth it.”

“We get you to the beginning of your recovery,” agreed Dr. Leland, “but we usually don’t have the luxury of seeing what one year, three years, five years out looks like.”

It’s not just how far Matthias has come, but where he is going.

The recipient of a $20,000 college scholarship from the Kiwanis Club’s Abe Lincoln Awards, Matthias will graduate from Ben Davis this spring and has been accepted to Indiana University Indianapolis to study neuroscience. His goal is to become a vascular neurologist, focused on strokes and brain injuries like he suffered.

“My passion for neurology has grown from my accident,” he said. “I want to help other children who have experienced brain injuries like me or other defects. I just want to give them the best chance to succeed.”

His parents, who have held space for their son’s pain, as well as their own these past few years, couldn’t be prouder.

“We are so excited and really proud of him and all of his hard work,” Lauren Pfister said after the awards program in February, just days before the five-year anniversary of the crash. “It brings up a lot of emotions, but we’re just excited that we can celebrate another year with him.”

Thinking back to those critical first few days in the ICU, she remembers the fear and the desperate search for hope.

“Some tough memories and stressful days,” agreed her husband.

To be on the other side of that trauma with the hope that each new day brings is a gift that humbles them.

“Thank you so much,” the teen’s mom said to the doctors. “Thank you for being honest with us throughout the journey. You helped us get through that next minute, that next hour.”

When asked if it is hard to be reminded of the accident, Matthias is matter-of-fact: “I’m reminded of it every day, but it makes me grateful for another year.”

The one sport Matthias hasn’t been able to return to is his beloved baseball, but he could take the field again in September as a Riley First-Pitch Kid, throwing out the ceremonial first pitch at an Indianapolis Indians game.

While he has made a remarkable recovery, he still struggles to fully move his left arm and hand. His gait is mildly affected. But nothing stops him from moving forward.

“When I was here, it was all about working hard, getting better, one step at a time. Now, I’m just happy that I’m here,” he said while talking to the PICU physicians. “I’ve always had a positive attitude, so I just focused on the positive things.”

“That seems to have worked out pretty well for you,” quipped Dr. Leland, who added that he and Dr. Friedman will be glad to offer advice and encouragement as Matthias dives into the study of medicine. They even agreed to have the teen shadow them on the job down the road.

The whole ordeal has brought the family (including Matthias’ two younger siblings) closer together, Lauren Pfister said.

“You don’t take anything for granted. You spend as much time together as you can, sharing love and care for each other. You just never know what tomorrow will bring,” she said.

“The better he gets, the better we all get,” Kyle Pfister said. “We got pretty lucky overall. After Matthias woke up (in the PICU), he could not move his legs for almost a week. He promised us he would walk out of there on his own when it was time to leave, and he did just that.”

Matthias, who still sees rehab specialist Dr. Sara Cartwright at Riley, said he continues to work hard, grateful for the second chance he was given, grateful to the Riley team who didn’t give up on him.

“I want to thank them for supporting me through my journey, no matter how bad things looked at some point,” he said. “Thank you for saving my life. Hopefully, I will accomplish my dream of becoming a doctor someday.”

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

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The sun has just come up when Sara Massy and Emma Lesage arrive at the Williams home in Mooresville.

The two therapists from the new Riley Children’s Health Early Intervention First Steps program are here to see 2-year-old Westin Williams, son of Tim and Danielle and brother to Waverly.

Like any active toddler, he is ready to play, and the Riley therapists are ready to work as they sit down on the floor to engage Westin in therapy that looks like play.

Since January, they’ve been working with Westin on developmental issues, specifically speech and fine motor skills. He was born four weeks early with a partial chromosome deletion that could affect his development, so the family was matched with First Steps, an early intervention program (ages 0 to 3) for children with delays or disabilities.

Massy, a speech-language pathologist, and Lesage, an occupational therapist, have worked in an outpatient setting before, but both now go to patients’ homes for therapy, seeing about 20 families each week.

For Westin, they frequently do combined appointments, feeding off each other’s interactions to improve a skill – whether that’s engaging him with the names of colors, imitating his delight when he scoops beads up into a toy dump truck or encouraging him as he practices early writing strokes.

"When we started in January, he wasn’t using very many words you could understand,” Massy said. “We’ve been working with him on telling mom what he wants. We made a picture board with his favorite shows and foods to help.”

In the past several weeks, the improvement has been remarkable, she said.

“He says so many things you can understand now, he’s labeling things, tells when he wants to help, asks for help. He has a lot of confidence to use his voice. A lot of times when kids know speech is hard, they are afraid to use their voice.”

But not Westin, she said.

“He is continuing with that confidence and trying to say more things. A lot of kids like him know what they want to say, but the brain is not actively sending that message to the mouth on how to say the word. We use a lot of practice and repetition, visual cues to help him figure out how to use his lips.”

Westin shows off some of his skills as he says “uh-oh,” “mess” and “I help” as he loads and unloads the tiny truck.

He displays his improved fine motor skills by picking up beads with his fingers, pulling apart plastic firefighter hats and bending his wrist to help scoop up toys.

“He loves to help with the laundry and the dishwasher,” Danielle said about her son. “He’s loved the broom since he was little. He has his own little cleaning set.”

Watching Westin play and giggle, she is grateful for the progress he has made in such a short time.

“He’s come a long way in just a few months,” said Danielle, who said she chose Riley as a First Steps provider because the family has had a relationship with the hospital since Westin’s older sister was born.

"He’s a very quick learner, very smart,” said Lesage, as she modeled different wrist motions while playing with the toys he has on hand. “For Westin, he’s so strong that he likes to manhandle things, not really trying to use those little muscles. But if you make it a fun game, he will.”

And it translates into a functional skill, like feeding himself, she said.

Rather than bringing in a bag full of toys and tools to each home, the therapists use toys already there so parents can reinforce the same lessons between visits.

“We’re trying to coach parents on techniques,” Massy said. “At the end of every session, we give them little things to work on.”

Both therapists say connecting with families and patients is much easier in a home setting, which they believe improves progress.

“It’s fun to be able to give parents the tools to be successful in their house and really be able to see that follow-through,” Lesage said. “We’ve been able to work with some amazing families.”

To learn more about this program, email rileyearlyintervention@iuhealth.org or call 317-944-4638.

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

Bridget Franklin bops from room to room in the pre-op area on the second floor of Simon Family Tower, checking on patients who are being prepped for surgery.

As a certified child life specialist for Riley Children’s Health, her goal is to calm fears and wipe away tears by teaching, listening and encouraging the kids in her care as they prepare to go into the operating room.

For Hadley Bender, 11, Franklin talks about the mask she will wear as the anesthesia is delivered. With Franklin’s help, Hadley has decorated her mask with stickers and used a root beer-scented lip balm on the mask to lull her to sleep.

Hadley, who is accompanied by her mom and grandma, is calm and relaxed, even though this is the first time she has had any kind of medical procedure at Riley.

“She’s a rock star with all of this,” said her mom, Megan Turner.

Down the hall, a preschooler is a little antsy as she’s getting ready for surgery, so Franklin walks with her out of the pre-op room to select a push car to distract her for a few minutes.

Franklin has a “Mary Poppins” bag filled with other items to distract – a glitter wand, squishy donut-shaped stress balls and Pop Its – as well as items to educate, including photos of the OR and cards with simplified explanations of procedures.

Her approach to patients varies, depending on their age, type of procedure and level of anxiety, but the goal is always the same – to help them understand step by step what will be happening, to answer questions and to advocate for them.

It’s a job that Franklin dearly loves in a place that holds special significance for her. Her brother was treated for a brain tumor at Riley nearly 15 years ago.

The Evansville native remembers coming to the hospital as a 12-year-old to visit her older brother, Josh, throughout his treatment and during follow-up visits.

“I found out about child life through a sibling perspective,” she said, adding that her brother is doing well today – he’s married, a homeowner and a proud dog dad.

Franklin, 27, whose bachelor’s degree is in child development and family studies from Ball State University, earned her master’s in child life from Ohio University. She volunteered at Riley during her undergrad years, did a practicum at Oklahoma Children’s Hospital and completed an internship at American Family Children’s Hospital in Wisconsin.

All of that preparation led her right back to Riley 2½ years ago, which was her end goal but something she didn’t expect to happen so quickly.

“It’s a full-circle moment coming back,” she said. “I love this area because you get to do so much in such a short time. Often this is the biggest medical thing a child has gone through, whether it’s a typical procedure like tonsils or ear tubes, or something like a spinal fusion.

“We get to see different populations and different procedures. We support them in pre-op, all the way through induction until they’re asleep in the OR,” she added.

That’s right, Franklin follows patients into one of the 16 operating rooms on the second floor, staying until they are asleep.

“We’re so privileged that we are integrated so much into the ORs,” she said. “We have a great rapport with the anesthesiologists and the surgery teams.”

Franklin credits one of her child life colleagues on the unit, Lindsay Morgan, for expanding the role on the surgery unit.

“It’s not common in a lot of children’s hospitals to go into the OR," she said. "We help create a plan, whether it’s for a patient who needs lots of sensory support or our nursing staff has let us know that a patient is particularly anxious, so everyone’s safe and understands what’s helpful and what’s not helpful.”

For her part, Morgan describes Franklin as "an absolute ray of sunshine to our patients, families and staff."

"She does a wonderful job connecting with the kids to prepare them for surgery, builds them up so they're confident when walking to the OR and supports them during anesthesia induction," Morgan said.

"We see the impact she has on patients daily as she's always getting a thank you from families and a hug from patients as they walk out the door. It is an honor to work alongside her every day."

Not surprisingly, the biggest misconception about child life specialists is that they are here to just play with kids, Franklin said.

“We use a lot of play in our interventions – play is universal – but it’s never just play. We’re using it to assess, we’re using it to teach ... in a way kids can understand.”

She knows that child life looks different throughout the hospital because the patient population and medical specialty can be so different.

“Child life on the PICU is very different from child life on the second floor,” she said. “A lot of our role is to be extra support that might look like a teacher, or giving a hand to squeeze, or helping someone mark a milestone.”

The most rewarding part of job, she said, is helping kids go through hard things and giving them the tools to cope, revealing their strength, even when there might be tears.

“Crying is coping. It’s a high-stress day for kids, who are also feeling the emotions of their parents,” she said. “Being anxious for something you’ve never done before or is medically invasive is appropriate. It’s their body trying to regulate their emotions.”

So while crying is OK, she said, she tries to help them through those moments by focusing on ways to keep their body calm. That could be big breaths or a squishy stress ball or something else.

She uses those same devices in her own life.

“Many times after I finish a day on the unit and I’m working at the computer, I still have a stress ball in my hand,” she said. “Self-care is very important in this field.”

Outside the hospital, Franklin is planning her September wedding to fiancé Aaron Beck, and things are falling into place nicely, she said.

“I found my wedding dress and the venue on the same weekend. I credit a lot of it to God.”

On her days off, she likes to spend time outdoors but also indulges in what she laughingly calls “grandma hobbies” – crocheting, knitting and watching documentaries.

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

What is a normal baby head shape?

When babies are born, the skull has flexible spaces between the bones, called sutures. These sutures cause the skull to resemble a “puzzle,” which is very helpful and allows the head to reshape or “mold” as the baby moves through the birth canal (this is why some babies have a “cone-head” shape when they are born that rounds-out after a few weeks). These flexible spaces also allow for enough space in the skull for brain growth. The brain grows rapidly in a child’s first two years, with the most rapid growth occurring in year one.

It is expected that any abnormal head shapes will begin to resolve on their own a few weeks after birth. If there are concerns for prolonged flat spots, soft spots or an uneven head shape, your pediatrician may refer your child to a pediatric neurosurgeon for further evaluation. The nationally ranked Neurosurgery Team at Riley Children’s is highly skilled in evaluating head shape abnormalities and will help determine if an abnormality in the shape of the skull is caused by craniosynostosis or positional plagiocephaly.

Common types of head shape abnormalities

Positional plagiocephaly

Positional plagiocephaly (commonly referred to as “flat head syndrome”) is one of the more common diagnoses seen by the Riley Neurosurgery team. Positional plagiocephaly is a cosmetic flattening (often seen on the back of the head) that occurs when the baby’s skull bones are re-arranged by an external cause, not an early fusion of the sutures. This is usually caused by how the baby is positioned, especially if they are lying in a particular position for extended periods of time, it can result in the skull flattening on one side of the head. This is a non-life threating, non-surgical finding. There is nothing wrong with the underlying brain development and the shape does not affect long-term development or cause delays in developmental milestones.

Common causes

• Infants that have a preference to turn their neck towards one side over the other or history of trauma/injury to the neck at birth.
• If they are a breastfed infant, they have a preference to feed from one breast over the other.
• Infants who do not like “tummy time” or do not spend very much time each day on their tummy.
• Young children or children with motor delays who are not yet able to roll or sit unsupported.
• Children who have head sizes on the higher end of the growth chart (it may take longer for neck-muscles to develop the strength needed to support larger-sized heads).
• Babies born early (prematurely), or who were hospitalized in the Neonatal or Pediatric ICU for a prolonged period.
• Abnormal in-utero positioning (such as breech position) or multiple-gestation pregnancy.
• The use of vacuum or forceps during delivery, or any other reported birth trauma.

How to treat plagiocephaly

Since positional plagiocephaly is caused by external forces, the best treatment is to start repositioning therapy at home as soon as possible. In general, your baby should lie on the side of the head that is not flattened. Once your baby spends more time off the flattened area and changes their head position more frequently, you will start to see improvement in the head shape as the brain and skull continue to grow.

• The American Academy of Pediatrics recommends tummy time two to three times each day.
  • Start with three to five minutes, then gradually increase the time and frequency.

• Promote range of motion of the head and neck.
  • As soon as they are able, help and encourage your baby to sit and play upright.
  • Try to keep your baby off the back of the head as much as possible.
  • Move toys and lights on the floor, play area, or car seat to their less-favored side. This encourages them to lie on the non-flat side to see those items and helps to promote neck range of motion.
  • It is not recommended to stop Back to Sleep (AAP). Continue to place infants “back-to-sleep” for SIDS prevention, but allow more belly and upright time during their awake-times while monitored by an adult.
• If your child has a preference to lay on one side of their head, it may be important for them to be evaluated by physical therapy (PT)/First Steps.
• If your baby prefers to breastfeed on one side over the other, make sure you switch sides when you hold the baby so they don’t spend more time on their preferred side.
• Cranial molding therapy
  • Cranial molding therapy (also known as helmet therapy), is a noninvasive form of management for severe plagiocephaly that can be considered after treatment failure with PT and conservative management.

Craniosynostosis

When babies born with the sutures of the skull already closed or with concerns for early closure (meaning the sutures are no longer flexible enough to allow for rapid brain growth), this is called craniosynostosis. Unlike plagiocephaly, craniosynostosis is not preventable and requires surgical intervention. If left untreated, the deformity will worsen, and can risk damage to normal brain tissue by not expanding to accommodate the growing brain. This may impact or delay normal brain growth and development.

Physical assessment is the first step your pediatrician will take to help differentiate between craniosynostosis and plagiocephaly. If a diagnosis cannot be made on physical exam alone, imaging can be used to obtain better pictures of the skull. The quickest and easiest imaging option is an X-ray which shows if the sutures have closed. At Riley Hospital for Children, a CT scan can also be utilized to provide images with a 3D reconstruction of the skull. CT scans show not only the bone and sutures, but how the brain is fitting inside the skull. These images will show the Neurosurgery team if the sutures remain open, have closed or if there are concerns for early closure of the sutures.

How to treat craniosynostosis

Children with craniosynostosis are managed by the Craniofacial Multidisciplinary Team at Riley Children’s. This team consists of Pediatric Neurosurgery and Pediatric Plastic Surgery specialists that focus on disorders of the face and skull. Many children also see Genetics to look for underlying causes of craniosynostosis, and ophthalmology to assess whether the eye socket shape and vision are developing normally.

Surgical options are dependent on the patient’s age and which suture is affected. Riley Children’s is home to the state’s largest cleft and craniofacial team and is one of the few programs approved by the American Cleft Palate-Craniofacial Association in Indiana. The Craniofacial Team will discuss the condition with you and work with you to create the best personalized plan of care for each individual child.

When to seek advice

Talk to your pediatrician if you are concerned about your child’s head development or shape. They will discuss and review your concerns and refer to Riley Children’s Neurosurgery Team if further evaluation is needed.

Two weeks ago, Duncan Diehl, 15, had what might be one of his best days ever. He rang the bell to finish rehab following a heart transplant, and he was reunited with his beloved dog, Peggy, outside Riley Hospital for Children.

It was hard to tell who was more excited. Both were grinning.

Peggy was a surprise visitor, brought by Duncan’s older brother, Dylan Collins, to celebrate Duncan’s last day of COLTT (Center of Life for Thoracic Transplant), located at IU Health Methodist Hospital.

It was a sweet reunion, as Dylan and Peggy came up behind Duncan, who was enjoying the fresh air in the green space across from Riley with his mom, Nina Collins. The family lives in Lafayette, Indiana.

There were hugs and sloppy kisses and lots of tail wags between the boy and his dog.

The two hadn’t seen each other since before Duncan’s transplant Jan. 12, exactly two months earlier. The family got Peggy as a pup last summer.

It was last Mother’s Day when Duncan first became ill, but no one knew what it was at first. He stayed home from school for nearly a week, but the following Sunday, he told his mom he was having trouble breathing.

That began a two-week back-and-forth with doctors and urgent care in Lafayette to look for answers. Finally, Collins had had enough.

“He’d try to sleep at night and wake up gasping for air,” she said. “One night he said he was hot, but his skin was clammy, and I remember seeing my dad that way before his heart condition was diagnosed. That was the moment I’m like, I’m pretty sure this is his heart. I’m not messing around anymore. Riley is the one place where I know they’re going to take my concerns seriously.”

Her older son, Dylan, now 23, had been a Riley patient as a baby when he battled liver cancer, so she knew she would get answers there.

She loaded Duncan into the car and drove him to the Emergency Department at Riley, where Duncan was almost immediately taken back for care due to his alarming symptoms.

And so began a journey that she never thought she’d be on. Duncan didn’t have any heart issues that she was aware of. Testing later revealed that the teen was suffering from dilated cardiomyopathy, a condition that makes it hard for the heart to pump blood to the rest of the body.

It can be caused by infection, diabetes, high blood pressure and other issues, and if left untreated, it can lead to heart failure.

Still, when cardiologist Dr. Sabena Hussain brought up the possibility of transplant, it was a lot for Collins to process.

“Dr. Hussain, bless her, she was really great about telling me what I needed to know when I needed to know it, and not worrying me unnecessarily before it was time,” Collins said.

There was another Riley team member who supported the family during that time, someone they knew from 20-plus years earlier.

Laura Weiger, social worker on the Heart Center, previously worked in a similar capacity on the hematology/oncology team at Riley and had met Collins and her older son during his cancer treatment in 2003.

Imagine both women’s surprise when they passed each other outside an elevator at Riley last June. At the time, Duncan was in the stepdown unit, but when his condition worsened and he was moved to the CVICU, Weiger was there to help once again.

“Because Laura and I had the best relationship from ages ago, when I found myself in this situation with Duncan and his care, there was already this ease with her,” Collins said.

“It was just this huge weight that I didn’t have to bear. Without having Laura on the team, I don’t know what kind of extra worry I would have had. I knew she was going to advocate for us.”

Watching Collins caring for her son in the hospital, Weiger knew the single mom was still the same strong, reliable parent she remembered from Dylan’s cancer journey as a baby.

“It means everything to me to support this family,” the social worker said. “It’s validating to see that a seed that was planted so long ago with this relationship was able to continue to grow and the time was right again. They are just a wonderful family. They have a special place in my heart.”

Weiger stepped up to support Duncan and his mom when it became clear that he would need an LVAD (left ventricular assist device) to help his weakened heart pump blood, providing a path to transplant.

Collins remains grateful for their honest relationship.

“I always felt part of the team and that my concerns were valid,” she said. “I felt safe to ask questions, and Laura was instrumental in that.”

Dr. Jeremy Herrmann was the Riley heart surgeon who placed both the LVAD and performed Duncan’s heart transplant. Because Duncan was so weak when the LVAD was implanted, his recovery was tough.

“Duncan showed a great deal of character after the VAD placement,” Dr. Herrmann said. “He worked hard to prepare for the ultimate transplant surgery, then basically sailed through it. He and his mother made a tremendous impression on the Heart Center, and many people celebrated his transplant.”

Today, Duncan, who towers over his mom at 6-2, is happy to be going home again, to play with his dog again, draw comic books and start planning for the next holiday. He’s a master at event planning, his mom says, most recently celebrating Mardi Gras while staying at the Ronald McDonald House during COLTT sessions.

The high school sophomore is not keen on heading back to school just yet, but he’ll be doing plenty of homework – academically to catch up on his studies and physically to take care of his body and his new heart.

And his mom said she finally feels like she can look forward again, thanks to the blessing of a donated heart and the care of the Riley team.

“Up to now, I’ve just been focused on ‘here’s what we have to do now.’ I always and forever had the roadmap in mind, like here are the steps we need to take to get us on the list.”

And now with a new heart, she said, the road is “wide open.”

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

The pediatric intensive care unit at Riley Hospital for Children can be a tough place to work.

A lot of critical injuries. A lot of difficult conversations. A lot of success, yes, but also a lot of sadness.

So, it’s important to have a ray of sunshine now and then. And that sunshine in human form is charge nurse Jane Watson, according to her PICU colleagues.

Watson, who has spent most of her nearly 40-year career as a nurse on the PICU, is beloved by families and fellow team members for her joyful spirit and her tender heart.

That’s why it’s hard for the PICU to see Watson leave the unit, even if she’s not leaving Riley entirely – at least not yet.

Thursday was her last day on the PICU. On Monday, she begins a new job with Riley’s infectious disease team, helping outpatient families with education on central lines for long-term IV antibiotics.

Why the move?

“I need less sad,” she said, even as she was surrounded Thursday by the laughter and good wishes of her team. “My heart is kind of mush right now. It’s been regenerating for a lot of years, but I think it’s done.”

Watson said it’s her co-workers and patients who have gotten her through the good and bad times.

“I’ve been blessed with a lot of good people. That’s really what gets you through it,” she said. “No one really knows what it’s like to work here; that’s a bond you have with each other.”

As she looks around the unit, where nurses are busy caring for the sickest patients in the hospital (think car accidents, fires, gunshot wounds, child abuse, disease and other traumas), she says it’s the kids and families who have inspired her.

“Look at these little kids, their sweet little spirits. God love ’em. They’re so amazing.”

That’s also how her co-workers feel about her. Around their wrists are bracelets with the letters WWJD. In this case, it stands for What Would Jane Do, said PICU nurse Kelsi Croy, Watson’s “work sister” for 10 years.

That’s because she has set the standard for nursing on the unit, Croy said, adding that the PICU plans to recognize nurses each year who exemplify Watson’s spirit.

“The Jane Watson Award will honor someone who embodies these core values: Always doing what’s right, making others feel valued and respected, and always delivering passionate care to patients and colleagues,” Croy said.

“You’re gonna make me cry,” Watson said. “I know I am leaving this unit in very good hands. I feel blessed that I’ve had a job I loved.”

Just for fun, the team has positioned a life-size cutout of Watson in the break room, so she won’t ever truly be gone. For her party, they sprinkled in references to her “Fryday” habit of splurging on a McDonald’s quarter pounder, fries (with salt on the side) and a Diet Coke to close out the work week, as well as her brush with fame as a contestant on “The Price Is Right” and her penchant for sending cards and notes to people.

For Valentine’s Day, she writes everyone on her team a personalized card that is “encouraging and uplifting,” Croy said.

Ruth Johnson has been a secretary on the unit for 47 years, so she has known Watson since she started as a nurse. The two are not just colleagues, but dear friends.

“Today is a very difficult day for me because I will truly miss her,” Johnson said. “She is an awesome person. She holds this place together.”

The two made a pact years ago that they would exit the unit together. Watson has a head start on her, but Johnson won’t be far behind. She plans to retire in June.

Kearstin Deno is just one of the many younger nurses who have blossomed under Watson’s encouraging leadership.

“I started here in 2016 (as a nurse in training), and Jane immediately took me under her wing. That’s literally the person she is. She will welcome anyone with open arms and a smile on her face and make you feel right at home,” Deno said.

“This unit is incredibly stressful and can be so depressing, but she is always there to give you a hug and give you positive feedback. It’s been amazing to work with her, and it’s a huge heartache to see her go. She is the light on this unit, so even in the sadness, she is our sunshine.”

In an interview a few years ago, Croy talked about that light and how it can emanate from different people at different times.

“When we can’t be that light, one of our teammates steps in and picks up our defeated souls,” she said.

“This is not an easy unit to stay on for that many years,” Croy said. “To do it for that long and to do it like Jane has – she doesn’t cut corners. In such a busy atmosphere, you can’t do everything perfectly, and Jane still does.”

“It takes me longer to get it done,” Watson said with a smile.

“It might take her longer, but I feel in this day and age we’re always looking at what we can do more quickly and efficiently, and Jane just does it better,” Croy said. “There are lots of departments that could use Jane’s spirit, her sparkle, her power.”

As she said her goodbyes throughout the day, Watson, mom to three, did her best to keep it together.

“My heart is here, and that’s the hardest part about leaving.”

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

What are chest wall deformities?

Dr. Makar: Chest wall deformities are conditions where the bones and muscles of the chest don't form the way they typically do. These conditions can change the shape of the chest, but they usually don’t cause problems with how the heart or lungs work. The three most common conditions we see are pectus excavatum, pectus carinatum, and Poland syndrome.

What is pectus excavatum (“Sunken Chest”)?

Dr. Makar: Pectus excavatum is when the middle of the chest, or breastbone (sternum), sinks inward. This gives the chest a caved-in appearance. It happens because the ribs and breastbone grow in an unusual way. Pectus excavatum is usually more noticeable in teenage years and can affect how the chest looks, but it rarely causes problems with breathing or the heart. If it does cause problems, like shortness of breath during sports or other activities, then you need to see a pediatric surgeon, not a plastic surgeon. If you don’t have any problems like this, and you are bothered by how it looks, our pediatric plastic surgery team can help.

Treatment: To improve the appearance, we offer custom implants designed to fill in the sunken area of the chest, making it look more even. For girls, sometimes breast implants are also used to enhance symmetry and appearance.

What is pectus carinatum (“Pigeon Chest”)?

Dr. Makar: Pectus carinatum is the opposite of pectus excavatum. In this condition, the breastbone sticks out more than usual, giving the chest a bulging appearance. This happens because of abnormal growth of the ribs and breastbone. Like pectus excavatum, pectus carinatum usually does not cause health problems but may affect confidence or self-esteem.

Treatment: For pectus carinatum, we offer procedures that help balance the chest appearance. In some cases, breast implants can be used to camouflage the more prominent chest and create a more even look.

What is Poland syndrome?

Dr. Makar: Poland syndrome is a condition where the muscles on one side of the chest don’t fully develop, making one side of the chest look smaller or flatter than the other. This condition can also affect the shoulder, arm, and hand. People with Poland syndrome may have underdeveloped or missing chest muscles, causing an uneven chest shape. Girls with Poland syndrome either don’t have a breast on the affected side, or the breast is much smaller than the normal side.

Treatment: We can use custom implants to replace the missing muscles and make the chest look more symmetrical. For females, breast implants can be used to balance the chest and create a more even appearance. Sometimes we can also use a technique called fat grafting, where we use your own fat to reconstruction your breast, but this requires more frequent trips to the operating room.

How does pediatric plastic surgery approach treatment for chest wall deformities?

Dr. Makar: Our team specializes in procedures to improve the appearance of chest wall deformities. These treatments are mainly done for cosmetic reasons, as most of these conditions don’t affect how the body functions. However, since this is something kids are born with, insurance usually covers these procedures. We’re here to help our patients feel more confident and comfortable with their appearance. If your child has pectus excavatum, pectus carinatum, or Poland syndrome, we are ready to discuss treatment options that fit your needs.

It might come as a surprise to some that Dr. Mark Turrentine is not super-human.

A superhero, yes, to many people, but even the renowned cardiac surgeon falls ill occasionally.

That was the case this week when the flu caught up with him, forcing him to take it easy for a day or two.

Just two weeks ago, “Dr. T” was celebrated on the Heart Center at Riley Hospital for Children, as his 200^th heart transplant patient, 7-month-old Emmaus Christian McCollum, was discharged.

Never one for the spotlight, the surgeon insisted that the transplant team be on hand to be recognized as well. That includes surgeons, cardiologists, nurses, transplant coordinators and more.

“If this (celebration) was going to happen, I wanted it to be about the team.”

The number of transplants attached to him is not important, he said.

“The richness of the program here is what we were celebrating, not one individual. The fact that you have one of the most highly regarded pediatric transplant programs in the country as part of the overall transplant program at IU Health, I’m not sure people understand the historical significance of this program.

“It may be 200 transplants here, but you’ve got a program here at IU Health (Methodist and Riley) that’s just north of 950 heart transplants,” he added, noting that patients have ranged in age from 4 days to just shy of 70 years old.

FIRST BERLIN HEART

The development of mechanical support devices for infants and young children as a bridge to transplant was critical to improving outcomes.

“Mark was instrumental in bringing the VAD (ventricular assist device) program to Riley,” Dr. John Brown said. “He put in the first Berlin heart. He has shepherded that program.”

Dr. Brown was among those present at the celebration earlier this month. He helped develop the heart transplant program at Riley in 1986 with cardiologist Dr. Randall Caldwell, now retired.

“Mark is an excellent cardiac surgeon,” Dr. Brown said of the man he mentored and worked side by side with for more than three decades. “He doesn’t like to talk about himself, but in the operating room, he’s very good in everything he does.”

In fact, the OR is where he feels most at home, Dr. Turrentine acknowledged during a phone conversation Wednesday.

“That’s where I am most comfortable,” he said. “John Brown and I, we’re both old farm boys.” (Dr. Brown grew up on a farm in Indiana, while the younger surgeon grew up in rural Kansas.)

“We had that farm work ethic, and we had a lot of similarities, but we had enough differences that it made for an interesting relationship.”

Dr. Brown formally retired at the end of 2020, but he has returned to Riley on occasion to assist in the operating room.

Also on hand for the celebration was Dr. Jeremy Herrmann, who trained under both Dr. Brown and Dr. Turrentine. And while Dr. Turrentine is not one to dispense unsolicited advice, his “tremendous integrity” speaks for itself, Dr. Herrmann said.

“He is always willing to do the right thing for a patient, no matter how difficult. I’ve seen that consistently over eight years. He is widely respected for that reason.”

And contrary to what some might think, he knows how to have fun.

It’s been rumored that he has the occasional water gun fight with a patient. When asked, he replies dryly: “Very old accusations. Not documented.”

Transplant coordinator Debbie Murphy said she admires his dedication to the children that come into the program for care.

“Parents never forget that he saved their child’s life, and they love him for what he does. He takes time to know these patients and enjoys hearing about their lives many years later.”

TEXAS WAS CALLING

Dr. Turrentine, who earned his medical degree from the University of Kansas School of Medicine and completed his residency in general surgery there, thought he would end up at Texas Medical Center in Houston. But he came to Indiana to interview for a fellowship in 1988 on the advice of a colleague and decided this was the place for him. He went on to do a second residency in cardiothoracic surgery here, loved it and never left.

Lucky for Indiana, his colleagues and patients would say, but he says it was lucky for him. The opportunity to be part of a cutting-edge program surrounded by stellar people has been gratifying.

“I’ve gotten a lot more back from it than I gave to it, I think,” he said.

“This has always been a very quiet, understated program,” said the surgeon, who performed the first infant heart transplant at Riley. “People are very modest here … we became one of the top 3 pediatric heart transplant centers in the country in the early ’90s, and credit to everyone here that was forward-looking and not risk-averse but out there pushing the envelope. And that’s been the history on this campus for the last half-millennium.”

“If you go back and look at the history of cardiac surgery and in particular congenital, it’s a pretty phenomenal history and legacy for our founders,” Dr. Turrentine added, pointing to Dr. Harold King and Dr. Brown.

“The professional marriage I had with John Brown, I don’t know that it’s been matched by anybody in our specialty in the country,” he said.

BELOVED BY FAMILIES

The dynamic duo, who have performed more transplants than anyone in the program on an individual basis, are beloved by generations of Riley families, who regularly comment on any content that features one or the other on Riley’s social media pages, just as they did two weeks ago when photos of the transplant team were published.

“Amazing surgeon,” Riley echocardiogram technician Susan Gude wrote about Dr. Turrentine. “Trained under the best, Dr. Brown.”

“My family and I are on the forever grateful list,” writes Franzetta Jackson. “Dr. Turrentine performed my second open-heart surgery in 2010. I will always remember his quiet and humble spirit.”

“An amazing achievement,” said Jennifer Gray. “Fabulous surgeon and gifted man. Forever grateful my son was one of the 200 transplants he performed.”

"Dr. Turrentine and Dr. Brown performed my son’s transplant 29 years ago,” said Tonya Glaspie. “We are so blessed by them and the others on the transplant team. My son will be celebrating his 30^th birthday in May.”

“Thank you from the bottom of my heart. Our boy was one of the 200 just last year. You changed our lives, Dr. T.” – Josue Yako Hernandez

Dr. Turrentine is not one for individual accolades. He would rather celebrate the richness of the program and its people.

“There are very few places in the country that can offer what we can offer here at IU Health, not just Riley,” he said. “One thing I’m really proud of is that no one has a better outcome in single ventricle transplantation than we have here. No one has reported better outcomes. That’s pretty phenomenal, and that’s because of the quality of the people we have here.”

IN THE ZONE

His love for his work is undeniable, Dr. Brown said of his friend and longtime colleague.

“He is passionate about transplant. His technical skills are excellent. He is conscientious, and he holds everybody to high standards,” the senior surgeon said. “He and I had a great time working together. He has a dry sense of humor, and he’s actually much more animated in the operating room than he is outside of it. It’s his comfort zone.”

It’s business in the OR, of course, but Dr. Turrentine likes to keep the atmosphere light-hearted up to a point.

“Everybody knows there’s a point where you’re going to be really focused and quiet,” he said. “It’s not chaotic. Dr. Brown likes to call it a symphony, where everybody knows when to come in to play their part.”

That’s reassuring for Carley McCollum, whose son was transplanted Feb. 7 (officially No. 200). She is still amazed at the whirlwind journey she and Emmaus have been on since the little boy was rushed to Riley by LifeLine helicopter from Frankfort, Indiana last summer.

It was later determined that he was suffering from undiagnosed dilated cardiomyopathy.

Emmaus received an LVAD (left ventricular assist device) to take the stress off his heart in late September 2024, then was listed for transplant in October. He received his hero heart four months later.

“He’s such a happy, thriving baby,” McCollum said. “It feels like a dream that this happened.”

But one thing is clear, she said. The entire Riley team was amazing. She gives thanks to God for that.

“I want people to know that only by the grace of God have we gotten through this. He is taking care of us.”

201 TRANSPLANTS

Since Emmaus’ transplant, Dr. Turrentine has assisted Dr. Jeremy Herrmann on one more transplant – 12-year-old Ja’Karr Ashley, who has been inpatient since November.

That brings the transplant total to 201, not that Dr. Turrentine is counting.

He’s actually hoping to wind down a bit, letting younger surgeons pick up the mantle. That would give him more time for the medical mission trips that he takes several times a year to operate on sick children in the Middle East who have little access to medical care. It’s the closest thing to the pure practice of medicine, he said.

Having completed 40 trips (he has another trip to Jordan planned in April), he and the Heart Center team who accompany him have operated on about 600 children, he said, most who would otherwise not have received lifesaving care. That’s what keeps him going back.

“The people there honestly become like family. It’s always good to see them. Some of them have really had it rough, and it’s nice to be a part of something good in somebody’s life.”

It’s also eye-opening for medical residents and others who travel with him. They come back with a better understanding of the privilege they enjoy in the U.S., he said.

“It’s a nice extension of Riley and IU Health, giving something back to those less fortunate in other parts of the world,” Dr. Turrentine said. “You learn a lot from that.”

He’s not ready to retire yet, but he is reflective as he considers his career. And he is grateful.

“I can’t imagine having had a more rewarding professional life than what I’ve had here,” he said, taking into account the inevitable highs and lows. “Fortunately, there are more highs, but the lows are tough.”

Still, he said, “There’s nothing else I can imagine ever having wanted to do more than this and feel like maybe I did something to impact somebody’s life for the better. I think when you have that opportunity, you can’t help but feel blessed.”

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

For Matthew Mast and Brandon Hawk, nursing and teaching go hand in hand.

Mast, a nurse in the Emergency Department at Riley Hospital for Children since 2019, and Hawk, a nurse on the inpatient rehab unit at Riley since 2019, believe that sharing their knowledge with the next generation of nurses helps encourage students and new nurses.

The two are among Riley Hospital for Children’s newest class of certified nurses, a distinction celebrated each year on March 19 – Certified Nurses Day.

Both earned their certifications last year (Mast in pediatric emergency nursing and Hawk in nursing education and rehabilitation nursing), joining more than 200 Riley nurses who have earned and maintained the highest credentials in their specialty, according to Kristin Miller, a certified pediatric nurse herself and senior project manager for Riley.

“Professional certification is a voluntary designation earned by individuals who demonstrate a high level of competency, skill and knowledge in their field,” Miller said. “Certification affirms advanced knowledge, skill and practice to meet the challenges of modern nursing.”

Mast has served as charge nurse and shift coordinator in the ED and more recently transitioned to a clinical advisor role, which allows him to coach new nurses, especially those right off orientation, and teach classes in the ED.

“I love learning, so I saw getting my certification as another way to gain knowledge,” said Mast, who studied for the certification exam last fall before taking and passing the test in December.

“When I started as a new grad, I would see the certification badges, and I looked up to those nurses and wanted to make that a priority in my nursing career.”

Hawk, who began with IU Health as a nurse on the adult cardiac medical-surgical unit at IU Health Methodist Hospital in 2018, made the move to Riley the following year and loved it.

“I love working with kids and being part of their journey on inpatient rehab,” he said.

He advanced to shift coordinator, then became part of the nursing professional development team, working as an educator on the unit. He moved into travel nursing for a year before rejoining the rehab unit, where he currently works part-time. The rest of his time is spent teaching the newest crop of nurses at Indiana University Indianapolis School of Nursing.

“I just fell in love with teaching,” Hawk said. “I started precepting nurses on the rehab unit, and as dayshift coordinator I helped new nurses get oriented to the unit. Now, I’m doing what I love – teaching and working as a nurse. It’s the best of both worlds.”

He sees plenty of promise in the newest class of nurses and hopes they will receive the support they need when they enter the field.

“I see a lot of upcoming nurses who are very passionate about wanting to give their future patients the best care possible and who are working very hard in school,” he said. “The environment in nursing is getting better, but we’re still recovering from the pandemic when a lot of nurses got burned out.”

Mast, who initially considered a career in physical therapy, said working in the ED is a challenge every day, but one he relishes.

“One thing that keeps me going is there is always something new, so you never know what you’re walking into,” he said. “I also appreciate the teamwork in the ED, even on our worst days. We recognize we all went through the same thing and we’re there for each other, ready to help, no matter what.”

Speaking of something new, Mast and his wife, Haley, will join the ranks of new parents this spring. They are expecting a little girl.

“I’m excited for this next step,” he said. “I feel like it will be different working in peds now because I’ll have a kid of my own.”

For Hawk, earning first his master’s degree in nursing education, then his certification last year helped improve his skills and will improve patient care as a whole as he shares his experience with newer nurses.

“Certification obviously validates your nursing expertise, but it also deepens your knowledge,” he said. “And it’s never too late to get certified. There is always room for growth.”

Hawk and his wife, Lauren, love to travel and hike, most recently visiting Acadia National Park in Maine.

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

As he looks over at his son, tucked in close to him on a couch at the Riley Outpatient Center, John Charters shares a bit of advice.

“Make everything count. You’re not promised tomorrow.”

The father of two speaks from painful experience, even as 10-year-old Chance Charters gives him the side eye frequently as father and son talk following a Riley appointment.

Charters and his kids have made the most of all the tomorrows they’ve been given since an auto accident one year ago last month critically injured Chance and took the life of his mom, Amanda Charters, near the family’s home in Roachdale, Indiana.

Chance, who suffered a traumatic brain injury, was LifeLined to Riley Hospital for Children, where he would go on to endure multiple surgeries and extensive rehab.

It took a team of doctors, surgeons, advanced-practice providers, nurses and therapists to put Chance back together again last year, starting with an 11-hour surgery that first day at Riley.

As the general surgeon, Dr. Robert Burns was the captain in the operating room that February day, which stretched into night. He opened Chance’s abdomen to check for internal organ damage. That’s when he found the boy’s bladder was ruptured, so urology surgeon Dr. Benjamin Whittam was called in to repair that damage.

Meanwhile, vascular surgeon Dr. Ashley Gutwein focused on an artery in Chance’s left thigh, where blood flow was compromised. In addition, orthopedic surgeon Dr. Aki Puryear joined the effort to stabilize the boy’s broken pelvis with an external fixator and stabilized the bones in his extremities.

Later, Dr. Luke Lopas from IU Health Methodist Hospital’s orthopedic trauma service came to Riley to repair Chance’s pelvis.

By April of last year, Chance was learning to walk again, feed himself again and become semi-independent again during a lengthy stay in Riley’s inpatient rehab unit.

In the past year, the boy and his dad have made many, many trips to Riley for follow-up visits.

“I’ve been around this building a time or two,” John Charters said. “I know my way around.”

That includes an inpatient stay over Thanksgiving week last year after Chance developed an infection that required another surgery.

“At least we got some pumpkin pie and ice cream,” Chance said about that unexpected stay in the hospital. But he took advantage of those days to flirt with the nurses and find out where all the toys are kept.

“He owned that hall up there on the eighth floor,” his dad said. “He had those nurses wrapped around his finger.”

Most recently, the pair saw Dr. Whittam in the urology clinic to see how Chance’s bladder was healing.

“He put it all back together,” John Charters said of the surgeon. “We’re all good now. There are a few things they’ll keep watching, but he thinks we’re out of the woods.”

At that last comment, Chance nods his head, even as he concentrates intently on his Switch, breaking into little upper-body dance moves as he plays a game.

“A dancing fool,” his dad says, laughing as Chance glares at him. “He’ll come through the living room sometimes doing the ‘griddy.’”

Charters treasures those glimpses of Chance’s personality – his humor, his sarcasm, as it gives him hope that his son is on his way to becoming whole again, even as he and his sisters miss their mom desperately.

“It’s been rough, different, weird. I still can’t believe it. You expect to come home and be able to talk and there’s nobody there to talk to.”

He and his kids are “pretty tight,” he said, and they visit the kids’ grandparents in Illinois frequently, which helps.

Chance loves baseball and basketball, but this spring seemed too early to put him back into baseball, his dad said. Basketball is still on the table for the fall, depending on what orthopedics physician assistant Todd Osterbur says after their April appointment at IU Health West Hospital.

Chance’s right ankle is still not quite healed, but he doesn’t have a noticeable limp, his dad says.

For now, he enjoys fishing and playing catch, in addition to video games. The family goes camping whenever they can, and this year they are headed to Florida for spring break.

A fifth-grader, Chance says he doesn’t care much for school, with the exception of lunch, recess and science.

Homework is a challenge for father and son.

“It’s a learning curve for all of us without Mandy,” Charters said.

But they are making their way, day by day.

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

Six-month-old Piper Norris doesn’t yet know how special she is.

The second child of Matt and Shelby Norris of Plainfield was born with cystic fibrosis (CF), but her story starts well before birth.

Piper was the first child at Riley Children’s Health to be treated in utero with a drug (Trikafta) that Shelby Norris took to reduce CF complications for her baby at birth.

CF is a genetic disorder that causes thick, sticky mucus to build up in the lungs, pancreas and other organs, leading to breathing and digestive problems. It's inherited through a mutated gene, and while there's no cure, treatments can help manage symptoms and improve quality of life.

Trikafta, approved by the FDA in 2019, treats the genetic mutation causing CF, not only improving symptoms but slowing the progression of the disease.

Though officially approved for ages 2 and older, a Riley Fetal Center multidisciplinary team was able to advocate for the Norris family to receive in-utero therapy for CF, allowing Shelby, who does not have CF, to begin taking the drug while pregnant. Piper was then approved for her own prescription as the team guided them through the insurance authorization process.

It wasn’t easy by any means. But Shelby, a veterinarian, was relentless in her pursuit of information regarding Trikafta in pregnancy and found partners at Riley who were willing to listen.

Dr. Hiba Mustafa, director of fetal surgery, coordinated the team meeting to discuss offering this innovative fetal therapy. The team also included Dr. Don Sanders, a pulmonologist and director of Riley’s CF Center; Dr. Cynthia Brown, director of the adult cystic fibrosis program at IU Health; Dr. Mindy Markham, neonatology; Karrie Theoharis, genetic counselor; the pharmacy team and a host of others.

The team meeting included a thorough review of the available literature and other centers’ experiences, and a decision was made to start offering this therapy in the hope of reducing CF-related bowel complications in infants.

“I would be the first patient at Riley (that did not have CF themselves) to take Trikafta for their unborn baby with CF,” Shelby said, recalling her journey last year.

“There were many unknowns since this is still a very new protocol … however there was never any hesitation in my mind because I wanted to do anything I could to help my daughter as well as any other families that find themselves in this situation. We all can never grow and learn if we aren’t willing to take risks for those we love and beyond.”

Dr. Mustafa said the Norris family’s story “highlights the profound impact of genetic screening during pregnancy, allowing early detection of conditions like cystic fibrosis.”

“With groundbreaking in-utero therapies like Trikafta, we now have a window of hope — offering treatment even before birth,” she added. “While data on these interventions is still emerging, every case contributes to building the evidence we need. The more data we gather, the stronger our case for making these life-changing therapies accessible, cost-effective, and covered by insurance as a standard of care."

For Shelby and her husband, taking Trikafta was a low-risk, high-reward option.

“After starting Trikafta, I was seen by Dr. Mustafa and her colleagues at the Riley Fetal Center to continue monitoring our girl in utero for any complications,” said Shelby, who was also seen by Dr. Brown in the adult CF clinic to ensure she wasn’t suffering any adverse reactions from the drug.

Multiple ultrasounds of baby Piper over several weeks revealed that her bowel issues (common in CF babies) had resolved.

“Our perfect Piper (6 pounds, 18½ inches) was born with no signs of meconium ileus (bowel obstruction), no need for bowel surgery, no NICU stay and no side effects from the Trikafta,” Shelby said.

“She was unfortunately found to be pancreatic-insufficient, but this is something that is manageable and may change in the future.”

Dr. Sanders continues to monitor Piper’s health as she takes the drug.

He and his team worked with the Riley Fetal Center and all the other teams mentioned above to determine the best options for Shelby and Piper after consulting with CF teams across the nation.

“We want to be there to support them,” Dr. Sanders said, adding, “This is a new opportunity for us. We only have case reports, so we’re not sure how much benefit there will be … but most parents in this situation want to do something if they can, and part of my job is to work through that decision-making process with them.”

Life expectancy for a baby born today with CF is about 60 years, which is much improved from previous decades, but there is still a high risk for hospitalizations due to respiratory issues, Dr. Sanders said.

“About 20 percent of people with CF can suffer bowel obstructions, which can lead to further complications and surgery. With newborn screening now (and prenatal testing when requested), we have early diagnosis and can avoid some complications that can lead to worse outcomes.”

While Piper is not cured, the hope is that the medication she is taking will improve her overall health until even better treatments or a cure are found.

“Trikafta has been a fantastic medication for (CF patients),” Dr. Sanders said, pointing to improvements in lung function, reduced hospitalizations and better growth and nutrition.

As director of fetal surgery, Dr. Mustafa said her job is to think outside the box when it comes to caring for unborn babies and their moms, rather than waiting until a baby is born to address a health issue.

“That kind of thinking was important for this family. We started with a multidisciplinary meeting with the CF clinic, maternal-fetal medicine, neonatology, critical care, nursing, pediatrics, pharmacy ... We reviewed the literature and case reports from around the country, we talked with our colleagues elsewhere, and we thought this approach has enough promise that we can start it for select candidates,” she said.

Still, it’s hard to say how much this innovative therapy will change Piper’s life, Dr. Mustafa cautioned.

“We know it improves bowel function for these babies, but for long-term outcomes we need more babies to look at and decide if this is truly helpful. That’s why there is a registry being built … to look at imaging, outcomes and findings to see if this is truly as promising as we hope it is.”

Shelby is just grateful to the Riley team for listening to her and advocating for her family every step of the process.

During a recent visit to Riley, she and her husband, along with Piper and Piper’s big brother, Elliott, reunited with both Dr. Sanders and Dr. Mustafa.

“She’s so cute,” Dr. Mustafa said, as she cuddled Piper. “Her eyes are so beautiful.”

This journey has been stressful, Shelby acknowledged, with a lot of appointments and a lot of unknowns. But their goal in sharing their story is to help other families dealing with a CF diagnosis.

“If you dig, the information is there, but we want to make it more accessible so others can be helped by it,” she said.

“We are so incredibly thankful to our team at Riley for the safe and healthy arrival of our Piper Laine. We advocated for her fiercely, and all of the teams were and continue to be right there every step of the way with unwavering support.

“It’s easy to get down and lose faith, but things are changing,” Shelby added. “Our daughter is going to know a very different CF than those before her, and that’s so encouraging.”

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

Safety is always top-of-mind at Riley Children’s Health, but Monday morning was an opportunity to spotlight several team members who have walked the walk in the past year.

To kick off Safety Week at Riley, members of the Safety Advocate Council gathered to recognize individuals in different departments for their leadership in the safety space.

Dr. Mara Nitu, chief medical officer, thanked the group for its work, noting that interdisciplinary cooperation and passion for taking care of kids make Riley stand apart.

“You make a huge impact, not simply by preventing harm and designing all the structures that help us keep our patients safe, but most importantly through the influence you all have on the culture of safety,” she said. “I’m so proud and so thankful for all your work.”

Monday’s award winners included: Ronin St James, a nurse in the PICU, for error prevention; Michelle Kussin, pharmacist on the infectious disease team, medication safety; Vannessa Taylor, labor and delivery nurse, team member safety; and Lindsey Biggs, project manager-education, safety leader award.

Taylor, who said she was completely caught off-guard by the award, was nonetheless grateful.

"It felt good to be recognized and honored for orchestrating the psychological debriefing platform," she said. "I spent hours researching different patient cases and providing my team a safe space to debrief traumatic cases. I am very thankful for being nominated and awarded the Team Member Safety Award."

The Safety HeRO Award, presented by the High Reliability Organization Workgroup, recognizes teams and individuals who promote a culture where it is easy to do the right thing and impossible to do the wrong thing. This year’s award went to the 5W and 5EA virtual mentors assigned to support new nurses on the hematology-oncology and stem cell units. Mentors recognized were Erika Pierce, Allison Scott, Carol Hayden, Carly Cason, Nicole Wilson, Megan Thompson, Melanie Toledo and Jake Harmon.

All nominees also were honored at the event.

David Biggerstaff, Riley’s new president, dropped in to congratulate the nominees and winners and encourage them to keep moving forward.

“Hearing about the work that happens in this organization every day is just exceptional,” he said.

“I want to thank all of you for that commitment. I want to thank you for your commitment to our kids. I just could not be more impressed with the work of this organization, and I look forward to continuing to work with you as we build on that foundation.”

The Riley Safety Fair will be held from noon to 2 p.m. Wednesday in the Maternity Tower atrium.

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

Shakiyla Rogers couldn’t believe her ears. She was in a conference room surrounded by co-workers when her name was announced as the winner of the DAISY award for the month of December.

“I saw all of them come in to present the award, and it wasn’t even a thought that it was for me,” the PICU nurse said. “I’m like, ‘hush, are you serious?’”

They were serious alright.

And the nominator, a young mom whose baby was in Rogers’ care, was very serious.

“I cannot imagine the strength it takes to come to work each day and experience the life of a PICU nurse,” said Kayla Lillo, whose daughter, Leda, spent several months in the NICU and PICU at Riley Hospital for Children.

Leda, who was born at IU Health Bloomington Hospital in November 2023, was diagnosed with tetralogy of Fallot (a heart defect), bronchopulmonary disease and a host of other illnesses. She was transferred to Riley four days after she was born. She had her heart repaired last September and was able to go home with her parents for a short time.

“That was the best three weeks I’ve ever experienced,” Lillo said.

More complications, including a rare liver cancer diagnosis, followed, leaving Lillo and her husband, Derek, distraught.

That’s why Rogers’ care as a nurse and a former NICU/PICU mom herself was so important.

Rogers became a nurse at Riley after spending months at the hospital with her own son in the first year of his life. Caiden was born prematurely, weighing 1 pound, 15 ounces.

Now 8, he is “a ball of life,” Rogers said.

But when he was discharged from Riley as an infant, he went home with a feeding tube, as well as a trach tube and ventilator to help him breathe.

During that time, Rogers found strength in the care that surrounded her, and it inspired her to resurrect her dream of going to nursing school.

Now, she can be that strength for others when they need it.

“I think I was able to connect with Leda on a deeper level because of my experience with Caiden,” Rogers said, “so I tried my best to talk to her as a parent, which I think she appreciated.”

One of the best pieces of advice Rogers gave Lillo was to get out of the hospital, if only for a walk outside.

“She noticed that I was crying and told me that her son had spent multiple months here in the NICU when he was born as well,” Lillo said.

“She explained to me that these walls can be so depressing, especially being in a place where you experience and hear the trauma of other children daily. She was the first nurse who truly understood the pain I felt. She was like an angel I didn’t know I needed.”

Lillo, whose daughter passed away in January, remains grateful that she had Rogers to lean on during a dark time.

“She is truly our rainbow on a cloudy day. She deserves all the flowers.”

Rogers is touched by Lillo’s comments and the recognition she has received.

“I was very grateful for it because sometimes you can wonder if your hard work is noticed,” Rogers said. “I’m glad that I was able to help her during a hard time. That was my goal in becoming a nurse – to help those families because I was one of them.”

Nominate a nurse who exemplifies excellent clinical skills and compassionate care here.

Best possible outcomes for cystic fibrosis

Home to one of the largest cystic fibrosis programs in the nation, the pediatric pulmonology program at Riley Children’s is a leader in providing the best possible outcomes for children and young adults with cystic fibrosis (CF). As one of the few pediatric centers in the U.S. to offer theratyping, Riley Children’s has been integral in providing CF transmembrane conductance regulator (CFTR) modulators that will greatly benefit the CF population.

"CFTR modulators are transformative for patients and have made a huge difference in quality of life and outcomes,” Don. B. Sanders, MD, MS said, pediatric pulmonologist and director of the Cystic Fibrosis Care Center at Riley Children’s. “These medications are only approved for certain CFTR mutations. However, we have used theratyping to demonstrate that patients with rare CFTR mutations respond to these medications, which has allowed more patients to gain access to these highly effective medications.”

Additionally, under the leadership of Dr. Sanders, the Cystic Fibrosis Care Center is anchored by a leading pulmonary function laboratory. Directly impacting patient care, this specialized lab has helped train other labs across the nation to perform multiple breath washout (MBW) and ensure MBW data is acceptable for research.

Learn more about CF care at Riley Children's.

One of the nation’s best for heart transplant survival

With one of the few Pediatric Heart Failure/Transplant Programs in the Midwest–and the only program in Indiana–Riley Children’s is among the nation’s leaders in pediatric heart transplant outcomes. Consistently surpassing survival benchmarks, the Scientific Registry of Transplant Recipients (SRTR) proves we’ve achieved notable success rates:

• 100% 90-day pediatric patient survival (benchmark: 96.1%)

• 100% one-year pediatric patient survival (benchmark: 93.1%)

• 100% three-year pediatric patient survival (benchmark: 85.1%)

Additionally, the pediatric heart surgery program has the eighth-lowest hazard ratio for pediatric heart transplant (0.68) in the country, a key indicator of the heart center’s exceptional performance. These stellar outcomes are attributed to a variety of distinguishing factors, according to pediatric cardiologist John J. Parent, MD, MSCR, medical director of pediatric heart transplant at Riley Children’s.

“Our experienced cardiothoracic surgeons are highly skilled technically, particularly when transplanting to patients with congenital heart disease,” Dr. Parent said. “This is especially true for patients with Fontan completions. In effectively managing bleeding, our surgeons are able to reduce ischemic time—a factor that’s critical to success.”

Learn more about our heart transplant outcomes.

More about our outcomes

Year over year, Riley Children’s paves the way in better patient outcomes across many other pediatric specialties, including:

• Our hematology and oncology program provides the best possible outcome ratings for five-year cancer survival. As leaders in stem cell transplant, our expert care team has achieved a 100%, 100-day survival rate for allogeneic transplants.
• As the 12^th pediatric center in the nation to launch aquapheresis, our nephrology team uses continuous renal replacement therapy to treat small patients, including neonates. Also, in the field of neonatal acute kidney injury (AKI), pediatric nephrologists drive novel research to explore a high-functioning dialysis catheter that works to support critically ill infants with AKI in low- and middle-income countries.
• Through the gastroenterology, hepatology, and nutrition program, our specialists are involved in robust research to improve outcomes, including a groundbreaking study led by pediatric gastroenterologist, Jean Molleston, MD. Her work focuses on a new non-invasive test that can be used to predict better outcomes for children with biliary atresia.

Causes of constipation

Constipation means hard poop that may happen a few times a week or less. When constipated for a long time, it can lead to encopresis, a condition where stool builds up in the colon and rectum, causing it to stretch and lose control of bowel movements. Pooping may also be painful or straining.

“In kids, constipation may also be from holding their stools in due to prior experiences of fear or pain and is especially common during potty training or when just starting school,” Dr. Andrewski said.

What to expect at a pediatric visit

When you notice constipation in your child, consult your primary care provider, where they will ask you questions about your child’s poop, such as:

• How often they go?
• What does it look like?
• Is it painful?
• Is there blood?
• Do they have poop accidents?
• Are they unable to control when they poop?

Your doctor will also evaluate symptoms like belly pain, vomiting, weight loss and diet, and they will want to know when the difficulty of popping started and if it is getting worse or staying the same. This assessment will help determine the severity of the condition.

Symptoms of constipation

During your pediatric visit, your doctor will check for “red flag” symptoms, which may include:

• Significant weight loss
• Not pooping within the first 24-48 hours after birth
• Muscle weakness
• A change in the way your child walks
• Lead exposure

Your provider may also examine your child’s reflexes and skin changes on the lower back. If they notice anything abnormal, a treatment plan may be recommended.

Treatment options

Depending on the severity of your child’s constipation, your provider might recommend:

• Blood or imaging tests
• Medicine to help the colon contract or keep the stool soft

Additionally, the following are easy at-home treatment options to help with constipation:

• Establish a toilet routine–have your child sit on the toilet for 5-10 minutes after a meal twice a day
• Use a foot stool when pooping
• Minimize distractions like phone or tablet time when pooping
• Blowing bubbles into a pinwheel to help the bottom relax

When to seek emergency care

In some cases, constipation may require emergency treatment, such as when your child develops anal fissure, or a crock or split in the tissues that line your anal canal, causing acute pain and bleeding. Other emergency cases might be required when your child experiences severe abdominal pain or inability to drink enough fluids to stay hydrated.

When to see a specialist

If larger concerns arise, your pediatrician may refer your child to a pediatric gastroenterologist. Referrals are typically made when:

• Constipation is linked to weight loss
• There is concern about an anatomic or structural cause of constipation
• Constipation is so severe it requires admission to the hospital

Expert care at Riley Children’s

Remember, when your child is constipated, your pediatrician can help guide you in the right direction. And as more support is needed, the expert gastroenterology team at Riley Children’s is always here to provide the specialized care and attention your child needs.

Learn more about pediatric gastroenterology at Riley Children’s.

When Derrick Keener looks at his newborn son, Brooks, he can’t help but think back to his own childhood, or at least the stories his parents have told him about the time he was a Riley kid.

As baby Brooks lay in a NICU bed at Riley Hospital for Children recently, Keener shared how his son’s journey was a bit like his own start in life.

Thirty years ago, at just 5 days old, Derrick Keener was rushed to a Lafayette, Indiana, hospital when his big sister noticed he was having trouble breathing.

He was air-lifted to Riley, where he was diagnosed with chylothorax, a type of pleural effusion, a rare but serious condition in which fluid builds up between the layers of tissue that line the lungs and chest cavity. It could have been fatal, but the Riley team used a procedure called thoracentesis over several months to drain the fluid and give his lungs and heart time to heal.

Three decades later, Keener and his wife, Allison, of Lafayette were stunned to hear that the baby Allison was carrying was suffering from pleural effusion that resulted in hydrops, a serious condition where fluid builds up in many areas of the unborn child’s body.

Allison, a nurse at IU Health Arnett Hospital in Lafayette, knew something wasn’t right about this pregnancy. Already the mother of a 2-year-old, she had some basis for comparison.

But even she was surprised when at a 30-week appointment, she was measuring as if she were 35 weeks’ pregnant. An ultrasound revealed excessive fluid not just in the baby’s chest cavity around his lungs (pleural effusion), but also in his abdomen and skin tissue (hydrops).

That’s when the Keeners were sent down to Riley and connected with the maternal-fetal medicine team, including Dr. Erin Cleary, MFM specialist.

“Dr. Cleary was amazing,” Allison said. “They did an echocardiogram on him (the baby), and his heart was perfect.”

That was good news, but it was in conversations with Derrick that doctors began to see a possible connection between what dad suffered as an infant and what was happening with baby Brooks in the womb.

The MFM team immediately consulted Dr. Hiba Mustafa, director of fetal surgery for Riley. A thorough assessment was done, including ultrasound, echocardiogram and temporary drainage of fluid in the chest to determine the most likely reason for hydrops.

The team determined based on imaging and testing results that hydrops mostly resulted from primary pleural effusion. They decided to proceed with the placement of chest shunts (tiny flexible tubes) in the baby’s chest to drain the fluid out of the chest cavity and into the surrounding amniotic fluid while the baby was still in utero.

While the procedure has risks, including pre-term labor, not doing it was riskier and potentially fatal for the baby.

All of this happened so quickly that the Keeners were equal parts overwhelmed and impressed.

“When we got here, they were working so fast,” Derrick said, recalling how he was talking by phone with his mom about his own experience as an infant and sharing that information with the medical team.

“They were putting all those pieces together in real time,” Allison agreed. “We kept telling ourselves we’ve never seen a hospital move so quickly.”

The fetal surgery team drained an astounding 3 liters of excess amniotic fluid off of Allison before placing the chest shunts.

“She was a champ,” Dr. Mustafa said of Allison during the shunt surgery. “She watched the entire procedure. Not many people can do that.”

“For my nurse brain, it helped my anxiety,” Allison said. “I had an epidural, they set a screen up, and I’m watching, like, what are we doing now? For my mom brain, it was kind of hard, but it still helped me.”

The weekly follow-up ultrasounds showed resolution of both the pleural effusion and the hydrops, and a plan was made for Allison to deliver vaginally near term.

At the end of January, she delivered 8-pound, 3-ounce Brooks at Riley at just under 37 weeks. Both shunts were still intact after delivery. They were removed, and baby Brooks was taken to the NICU.

After a 17-day stay, Brooks is now home in Lafayette with his family, free of any respiratory support, and he only requires a low-fat, low-lipid, high-calorie formula to help his digestion.

“He is so content,” Allison said. “He doesn’t really let all of this bother him.”

The family underwent genetic testing to get answers, and a gene passed from father to son was discovered – the results coming three days before Brooks was born.

The genetic condition that affects Brooks, Milroy disease caused by a genetic mutation in the FLT4 gene, is so rare that there are only a handful of cases reported in medical literature worldwide, according to Dr. Kristen Suhrie, director of perinatal genetics at Riley.

"The Riley NICU cares for many newborns with rare genetic diseases, so while any one genetic disorder that affects patients is rare, we see many different rare diseases that affect many different patients," she said. "So much so, that we say rare genetic disease is common in the NICU."

“The genetics counselor said they’d never seen this passed from parent to child,” Derrick said, adding that the couple’s daughter did not suffer the same condition. “Apparently, it’s a 50-50 chance that we would pass it on.”

Victoria J. Thomas is an advanced practice provider with Riley’s Perinatal Genetics team. Before genomic testing, she said, infants with a buildup of lymph fluids in the body and similar disorders had prolonged hospitalizations due to delayed diagnosis.

In Brooks’ case, she said, prenatal testing and early identification of Brooks' gene mutation allowed the NICU team to “provide timely, individualized management and specialized care.”

“We are pleased that Brooks and his family received answers and were able to discharge home safely and timely,” she said.

While the shared condition between father and son is rare, Dr. Mustafa said, early identification and treatment made a big difference, and she credits Dr. Cleary and the MFM team for looping in the fetal surgery team from the beginning.

“She got the ball rolling. She had good knowledge that we could do something. Not every case of hydrops is hopeless. That’s how many people perceive it, but we try to educate that there are types of hydrops, particularly with pleural effusion, that can be helped by placing shunts, and that’s the case here. We expect Brooks to continue to do well,” the surgeon said.

"Brooks was able to undergo prenatal treatments for his disorder by our maternal fetal medicine doctors that were lifesaving," Dr. Suhrie added. "He was then able to be born right here at Riley so our neonatology team could continue targeted treatments for his disorder because we knew the exact genetic cause for his symptoms."

While many patients with symptoms of genetic disease may never receive a genetic answer or may undergo a “diagnostic odyssey” of years before the genetic cause is discovered, genomic testing, prenatally or shortly after birth, is allowing doctors to make a diagnosis early, Dr. Suhrie said.

"Here at Riley, we are grateful to have the opportunity to care for patients like Brooks that are affected by genetic disease," she said. "We can’t thank his parents enough for trusting us with his care."

As the Keeners settle in at home, they are grateful for their family of four and glad to have the flurry of activity surrounding Brooks’ diagnosis and treatment mostly behind them.

“We feel amazing about the care at Riley,” Allison said. “I think that if he wouldn’t have had the shunts, he wouldn’t be here, or he would have had a much longer NICU stay.”

Photos by Mike Dickbernd, mdickbernd@iuhealth.org, and Maureen Gilmer, mgilmer1@iuhealth.org

Lisa Bemis was barely 15 years old when she decided she was going to become a nurse on the cardiovascular critical care unit at Riley Hospital for Children.

As a teen, she underwent open-heart surgery by Dr. Mark Turrentine to repair an atrial septal defect (ASD), a congenital heart defect.

Doctors had told her parents that the hole in the wall separating the two upper chambers of her heart might close on its own, negating the need for surgery, so they chose to wait. But the hole did not close, and eventually the swimmer and softball player’s endurance began to falter.

“I started having symptoms at around 13, and it just got worse,” she said. “They did more echos and heart caths and decided it needed to be closed.”

Today, Bemis, a mother of two, has found her home at Riley, working with patients diagnosed with various heart conditions.

“You get all ages and all stages on the Heart Center and a wide variety of defects,” she said. “It’s amazing what we get to do here.”

On Friday, she was caring for newborn Wren Souders, born just six hours earlier. Wren, daughter of Dylan Souders and Rachel Sigmund, is in the CVICU for treatment of tetralogy of Fallot, a four-pronged heart defect that was diagnosed when Sigmund was 32 weeks’ pregnant.

As Bemis tended to her tiny patient, she said, “I’m the luckiest person in the world to get to work with these little ones, and the older ones, too.”

She also gets to work with the surgeon who saved her life, Dr. Turrentine, a legend at Riley.

“If one of my kids ever needed surgery, he would be the one to do it,” she said.

She is humble about her own past, explaining that her heart defect was nothing compared to what the patients go through in the CVICU.

It did, however, point her in the direction of a career she loves and one where she hopes she makes a difference with the kids – and adults – in her care.

“I remember there was a young girl who was worried about her scar from surgery, and I told her about my experience and showed her the tip of my scar. It’s something to be proud of,” she shared. “It shows an important time in your life when you had to be a fighter.”

Returning to Riley as a CVICU nurse is a full-circle moment for Bemis, who graduated from Indiana University.

“It feels surreal, 100 percent,” she said. “Everybody has hopes and dreams at that age, and things can change. But when people say they’re living the dream, I absolutely am living my dream.”

She’s a dream co-worker as well.

“Lisa is an absolutely amazing nurse and person,” said Melissa Keesling, manager of clinical operations for the CVICU. “She is a very hard worker, and she takes amazing care of our heart kids.”

Photos by Maureen Gilmer, mgilmer1@iuhealth.org

Bella Sutton has been waiting for a donor heart at Riley Hospital for Children for just shy of 11 months now, but in that time, she has stolen the hearts of many a nurse and caregiver on the Heart Center.

Bella, 7, is a cheerful, precocious first-grader who has made herself quite at home in her hospital room across from the Heart Center playroom.

In fact, her room is so full of toys it looks like a playroom itself.

The biggest toy is a shiny new bike – a Christmas gift – that she is not big enough to ride yet, but she loves just looking at it, she said.

As she gives a mini tour of her room on a recent Saturday, she points out her snack cabinet, her Barbie area, her tiaras, her little library in the window, a wild assortment of stuffed animals, and stacks of games and puzzles.

It’s not all fun and games for this little diva dressed in unicorn PJs with pigtails springing out of her head. She spends some of her time in between hospital procedures and tests “working” as a junior charge nurse with some of her favorite nurses.

The list of her top nurses changes by the day, but on this day, she is surrounded by the actual charge nurse, Gretchen Bracey, as well as nurses Lacey Cooksey and Olivia VanGordon.

The “OGs,” they call themselves, reminding Bella how they were with her in her first days on the unit when she was adjusting to living in the hospital, away from her mom, Amy Sutton, and her two younger siblings.

Sutton comes down to Riley on the weekends from the family’s home in Dunkirk, Indiana, for a slumber party of sorts with her daughter. The two order Bella’s favorite foods, watch movies, play games and do puzzles. Bella clears all the stuffed animals off the pullout sofa in the room so her mom has a comfy place to sleep at night.

Bella has her own badge for her “chargette” duties on the unit, but it’s lost amid the clutter of her room, so the nurses make a temporary sign for her before she “goes on duty.”

She is definitely Bella in charge. And she’s in training for the day she becomes a nurse or maybe a doctor, she said.

“I want to work here. I don’t know if I want to be on nights or days,” she pondered, before deciding that days would be best.

“You have a little time to think about it,” Bracey laughed. “We’ll be checking up on you when you’re 18 to see if you’re in nursing school.”

Bracey and the other nurses adore Bella, who doesn’t know a stranger. In fact, visitors to her room over the weekend found her holding court at a little table just outside her room where she was offering tattoos and collecting candy the day after Valentine’s Day.

“She’s very social. I can’t keep her in her room,” Sutton said, as she followed her daughter around, clearing the way for Bella and her constant companion, the Berlin Heart that she named Tinkerbell.

The Berlin Heart is a portable pump, a type of ventricular assist device, that helps children with damaged hearts pump blood until they can be transplanted.

Bella was diagnosed with cardiomyopathy when she was 16 months old and has spent time at Riley before, but nothing like this. Last March, she acquired an infection that landed her back in the hospital.

“It hit her hard, so she needed the Berlin Heart,” Sutton said. “Over the years, we’d pack a bag and be at Riley for a week, maybe two, then head home. Not this time.”

Cardiologist Dr. John Parent recommended she stay at Riley as her heart weakened. She’d had another scare about two years ago, a bout with pneumonia not long after her father, Zeb Sutton, passed away from a heart attack at the age of 44.

That’s a lot of heartache for this family, but Amy Sutton said she and Bella talk about him a lot and look at pictures to keep his memory alive.

Besides the nurses, Bella has made friends with other patients on the floor. She’s on the outs with her bestie, Emmitt, at the moment, she said, because he stuck his tongue out at her.

“They are like brother and sister,” her mom laughed. “They have their good days and bad. After a while here, you make new family members. I’ve made friends along the way with some of the moms, and the kids will see me and say, ‘hi Mom.’ It’s like I have more kids. After a while, you just go with it.”

She is grateful to the nurses who devote their time to Bella during the week when she is not able to be at Riley.

“They have gone above and beyond. They play with her, do her hair … and tell me when she acts up.”

Those nurses have a special fondness for all of their heart warriors, including Bella, and they try to make the days fun when they can with dance parties, games and trips to the Child Life Zone.

“She is so great,” Bracey said. “She is well-mannered and fun to be around. I had her and Emmitt on my lap at the desk last weekend watching a show.”

As she sees some of her new friends leave with their new hearts, Bella gets a little sad, her mom said, wondering when it will be her turn. But they make the best of it, especially on the weekends when mom and daughter are together again.

“I want to be a nurse here,” Bella decides, “and I want to be a mom.”

Learn more about organ donation here.

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

Brynn Rittman is just 13, but at 5-foot-8, she’s growing up fast. While she and her older brother might not reach their dad’s height of 6-3, it’s definitely a competition to see who gets closest.

An eighth-grader, Brynn plays softball, volleyball and basketball, with soccer and swimming mixed in for good measure.

Otherwise healthy, the Indianapolis girl started noticing that she stood a little crooked when she looked in the mirror. Her tops didn’t fit quite right either.

It was a trip to the pediatrician last fall that led her parents, Mike and Brittany, to take her to a specialist for a scoliosis screening. Sure enough, X-rays showed the teen had varying degrees of curves in her spine, leading to uneven shoulders and pain.

While scoliosis, which affects 2% to 3% of the population, can appear in infancy or result from other conditions including cerebral palsy, Brynn’s is considered idiopathic, meaning there is no known cause.

Fortunately for her, she is taking advantage of a specialized form of physical therapy at Riley Children’s Health designed to freeze – and even correct – her curve before it gets worse, avoiding the need for more invasive treatment, including surgery.

“We have many cases where we actually start to straighten and correct the spine, but to set realistic expectations I always tell my patients the number one goal is to freeze it, because scoliosis is a progressive condition,” explained Brittney Galos, a Riley physical therapist trained in the Schroth Method.

Schroth, named for a German woman who had scoliosis herself in the early 1900s, uses exercises customized for each patient to return the curved spine to a more natural position. The goal of Schroth exercises is to de-rotate, elongate and stabilize the spine.

That’s what Brynn is working on during weekly therapy sessions at Riley, where Galos coaches her through multiple stretching, rotating and breathing exercises, all designed to address her specific spine curves.

“This is pretty much my social hour,” Brynn said, despite the work she puts in. “Me and Brittney are besties.”

But the therapy doesn’t end at Riley. Brynn goes home with a binder packed with information and exercises that she is to work on between appointments.

That buy-in from kids and their parents is crucial, said Galos, who is determined to broaden awareness of the benefits of the Schroth Method for some patients in hopes that pediatricians and other medical professionals and parents know that it can help.

“Most of my kids’ curves show up just prior to and into puberty, and usually identification is slow,” she said. “Our goal is to get to these girls (females are disproportionately more likely to have scoliosis), apply these exercises and stretches and get that curve to pause in its tracks. We know if we can keep a curve under 30 degrees by the time a kiddo is done growing, it won’t advance the rest of their life.”

Brynn has three curves that range from about 20 to 36 degrees, and that makes her eligible for this kind of physical therapy. For perspective, anything below a 10-degree curve is considered normal, Galos said, while anything above 45-50 likely would require more aggressive treatment, up to and including surgery.

It’s been about three months since Brynn started therapy, in addition to wearing a brace, and she’s already grown an inch, said her dad as he watched his daughter go through the exercises under Galos’ careful eye.

“When you find out your kid has scoliosis, you’re combing the Internet … everyone’s got a different opinion,” he said.

He and his wife initially struggled with the decision to put Brynn in a brace in addition to seeking out therapy. Different doctors, different ideas.

“But Brittney (Galos) deals with scoliosis all day every day, and she said absolutely she should wear a brace,” he said, adding that it was a relief to be assured of the right path forward.

Education surrounding scoliosis is not what it should be – whether in medical school or physical therapy school, Galos said.

“Our training in PT for scoliosis is like two slides with the most horrific curves.”

So, when a provider identifies a milder curve, they might be inclined to take a wait-and-see approach, not knowing that therapy is an option, Galos said.

Unfortunately, that sometimes means by the time they get to her, their curves are already near surgical level, “and then we’re trying to play catch-up and it’s a lot harder.”

“The worst feeling is when a kid comes in, the parents did all the work to get here, and the curve is already 45 degrees and it’s often too late. It’s not impossible, but it’s not easy. There is no room for error.”

Of the 20 to 30 patients she sees each week, about half are kids who are receiving treatment using the Schrock method, and most come to her between the ages of 11 and 14.

For Brynn, the therapist said, her No. 1 goal is to keep her in the 30-degree range until she’s done growing, which for most kids is about two years after they hit puberty.

While it’s common for medical professionals to try to stay in their own lane, Galos said she tries to bridge that gap by educating her peers about the benefits of physical therapy in some cases.

“I think every kiddo has their own story and their own needs, and even the same curve might need two different things depending on the kid.”

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

Each year, Reason to Dance, Reason for Hope brings together local “celebrities” and their partnered professional dance instructors for a ballroom dance competition that not only entertains, but changes lives.

Based on the popular TV show “Dancing with the Stars,” this event benefits the Riley Children’s Foundation, supporting both the Child Life Program at Riley Children’s Health and the Herman B Wells Center for Pediatric Research at the Indiana University School of Medicine. Season 9 of Reason to Dance will take place on March 15 at the Indiana Roof Ballroom in Indianapolis.

One of this year’s celebrities, Dr. Emily Sims, a pediatric endocrinologist at Riley and a physician scientist at the IUSM Center for Diabetes and Metabolic Diseases and at the Wells Center, is ready to take the stage.

Her work focuses on type 1 diabetes research, aiming to improve the way the disease is diagnosed and treated. When approached to participate in Reason to Dance, she said she saw it as an opportunity to support a cause she deeply believes in. Having attended the event last year, she was inspired by the story of its founders, the Greeleys, who started this event after receiving impeccable care for their child at Riley.

“The Greeleys said the care they received at Riley changed their lives, so they wanted to give back by building an event around something they really loved – ballroom dancing,” Sims explained. “I felt like this was something I could really get behind because I think all of us who are associated with Riley feel like it’s an incredible place!”

Over the past eight years, the event has raised nearly $1 million, with hopes of surpassing that milestone this year.
While Sims is no stranger to challenging work and honing her scientific skills, ballroom dancing is something completely outside of her comfort zone. To prepare for the event, she and her dance partner/coach, Mike DeSante, have been training weekly at Arthur Murray Dance Studio in Carmel, Indiana.

“In my everyday job I have done a lot of training and feel pretty confident about the skills I’ve developed and use every day,” Sims shared. “It has been really humbling to have to start learning ballroom dancing from the very beginning!”

As a little teaser, she revealed that one of their two routines features a performance to Post Malone’s “Sunflower” from the Spider-Man: Into the Spider-Verse soundtrack.

The awards for the competition include:

• The Riley Children’s Choice Award for the dancer who earns the most votes from Riley kids.
• The Runner Up award for the dancer who has the second-highest combined judges’ score.
• The Judges’ Choice award for the celebrity with the highest combined judges’ scores.
• The Grand Champion award for the celebrity who raises the most money.

All proceeds benefit the Riley Children's Foundation, impacting and improving the care that Riley kids receive. The Child Life Program at Riley helps children navigate scary procedures and hospital stays, making a big difference in their experience. Meanwhile, pediatric research at the Wells Center plays a crucial role in advancing treatments that improve and save lives.

“I have had the opportunity to see firsthand how working in diabetes research is contributing to changing the way that we diagnose and treat patients with type 1 diabetes,” Sims said. “Donor funds such as these are especially critical as they tend to fund high-risk, high-reward projects, which often end up being the truly transformative projects that break down existing paradigms.”

To show your support for Sims and the Riley Children's Foundation, visit https://reasontodance.org

About pediatric headaches

Symptoms

If your child has headaches, it is important to consult your primary care provider. They will talk about the features of your child’s headache and ask important questions, such as where it is located, how often it occurs and how long it lasts. In addition, they will assess the associated symptoms, such as:

• Nausea
• Vomiting
• Light sensitivity
• Sound sensitivity

Dangerous signs

Aside from the more common symptoms, the dangerous signs of a headache might include:

• Weakness or numbness
• Headaches that are positional
• Headaches that are worse laying down or sitting up
• Headaches when pregnant
• Headaches when you have a sudden onset

“Most of the time, based off talking with you and doing a thorough physical examination–this is checking your brain, your cranial nerves, your strength, your sensation and your walk–your primary care doctor can tell if your headaches are dangerous or not,” Dr. Miller said.

Depending on your child’s symptoms and signs, your provider can determine when to send your child for further testing.

Testing and Treatment

Often, pediatric headaches do not require any testing, especially if there is a strong family history of headaches. The two common types of headaches–migraines and tension-type headaches–also do not require any testing. For children with more frequent headaches of more than 2-3 times per week, your provider may recommend everyday medicines to prevent headaches. They can also prescribe medicine to rid the headache in the moment.

Lifestyle Modifications

Simple lifestyle changes can significantly improve headache management. For example, your primary care provider may recommend hydrating well and implementing proper sleep hygiene.

Expert team of neurologists

If your child’s headaches continue or your primary care provider needs additional assistance, our pediatric neurologists at Riley Children’s are ready to support you.

“If your primary care doctor is unsure or needs extra help, they can always refer to us,” Dr. Miller said. “We’re the neurologists at Riley Children’s Health. We’re happy to see you, especially if your primary care doctor needs help.”

Learn more about pediatric neurology at Riley Children’s Health.

"I bought boxes upon boxes," she said, reflecting upon that impactful moment in her recent history.

February is Black History Month, a time intended to celebrate the stories and culture of Black people in America.

“Black history is not about just 28 days. Black history is real, it's a lifetime,” she said. “It happened … no matter what the books or laws or people say. History is history.”

Boone’s history began in Gary, Indiana, as the middle child of three siblings who adored her grandparents.

“A grandmother's love is what I was raised on, and it put me where I am today; my grandparents are my heartbeat for sure."

She went to college in Evansville, a world away from Gary, she said, then decided to split the difference and make her home in Indianapolis, where she lives with her tiny dog, Eva Ann. She worked 13 years for the Indiana Department of Child Services, before coming to Riley in 2020.

Boone said she didn’t see a lot of diversity, especially in leadership positions at Riley. When she started this job, it was May 2020, amid the COVID-19 pandemic and the murder of George Floyd by a Minneapolis police officer. She saw an opportunity to make an impact.

“Everything that was happening in the world led me to starting our first Riley employee resource group within our department,” she said. “I, along with other people, needed a safe place to process the things that were happening in the world. Because the world doesn't stop in between these Riley walls.”

Now primarily working with patients, families and team members in the pediatric intensive care and burn units, she believes she has found her home at Riley.

“My primary focus at DCS was protecting children … coming to Riley my primary focus is patients and families and more supportive crisis intervention.”

Two different roles but with the same goal of caring for and protecting kids and families, she said. Throw a pandemic in there, where you are dealing with a lot of death and grief, and it takes it to another level, but she has zero regrets.

“Through my experience, I’m blessed to say I think I’m exactly where I’m supposed to be. It is my purpose, and although sometimes it’s heavy, it doesn’t feel like work.”

One thing that makes it easier is the spirit of collaboration on the Riley team, she said.

“I thought there might be this hierarchy of doctors and nurses and they would tag in social work when they needed us, but I feel very much a part of the team,” Boone said. “They rely heavily on my recommendations and/or opinions. And when we as team members are struggling, we offer safe spaces for each other, and it means the world to me.

“I had heard about all the good things at Riley, and I came here and drank the Kool-Aid,” she added. “I absolutely love Riley. We are a true team.”

Boone, an IU Health Emerging Leader and Sher Lee Sommers Leadership Fellow, is a self-described change agent who always knew she wanted to help children.

“I run toward the risk, and I run toward the danger and the trauma. I am comfortable being uncomfortable. I thrive in crisis intervention,” she said.

“In all things, I think I lead with compassion. I have to remind myself I'm a little black girl from Gary, Indiana. I'm not far removed from being a patient or being a family member of a patient. I always have this concept of it could have been me and it still could be me.”

In her professional and personal life, she is guided by the belief that people are human first, “and we should listen and respond without judging. It takes nothing to lead with kindness and it goes a long way.”

Love is all around at Riley Hospital for Children, but what better place to showcase it than the Heart Center, and what better day than Valentine’s Day?

Samantha Franczak and Bret Brumfield, who are getting married in September, both work as registered nurses on the unit, as do Jake and Maddie Schrader, who met in middle school and have been married for a year and a half.

The four all work the night shift, sometimes in neighboring patient rooms and sometimes at opposite ends of the unit. They all have a heart for heart patients.

“We have patients from a day old to 40 years old sometimes,” Brumfield said. “That’s pretty unique.”

“A lot of these kids need multiple surgeries, so we get to see them at different stages of life,” added Franczak.

The patient population and the team captured her heart when she rotated through the Heart Center during clinicals in nursing school. Brumfield had a similar clinical experience, but the bonus was that Franczak was already working there.

The Schraders, who are expecting their first child in June, say working together is ideal because each understands what the other is going through, especially on hard days.

“It makes decompressing a lot easier,” said Maddie, who loves making connections with patients and families.

“A lot of our kids are waiting for heart transplants, so we get to know them because they’re here for a long time.”

As she talked, Ja’Karr Ashley came up to say hello. Ja’Karr has been on the unit for several months waiting for a transplant. He has wiggled his way into the hearts of the entire team with his winning smile and friendliness.

“He’s a lot of fun,” Maddie said, while Jake quizzed the 12-year-old about his skill at video games.

“I worked as a patient care tech on this floor, and I loved all the staff and the patients,” Jake said, explaining why he chose to join the Heart Center team as a nurse. “It’s like a family.”

Both couples happen to have Valentine’s Day off, but they don’t have big plans.

“We’ll probably go to one of our favorite restaurants and spend the rest of the night at home with our dog,” Brumfield said.

The Schraders say they’ll likely do a date night at home, then go out for dinner when it’s not as busy.

Owen Lower looks like a pint-sized punk rocker. Put a tiny guitar in his hands, or drumsticks or maracas, and he’ll even play the part.

The toddler’s spiky hair comes naturally, his mom says. She can try to tame it with a brush, but that’s not happening today. He is still recovering from a nasty bout with several respiratory illnesses that hospitalized him for a week.

Owen is at home in Noblesville now with his parents, Dustin Lower and Katy Preidt, his big sister, Lyla, his nurse and an assortment of people hoping to share his story with the wider world.

Cute as he is, 15-month-old Owen had a traumatic entrance into this world. He was diagnosed in utero with a giant tumor on his neck called a cervical teratoma, an extremely rare form of a germ cell tumor that is usually benign but can obstruct a baby’s airway, resulting in an accumulation of fluid that can affect growth and cause preterm labor.

“We tried to not go down the Google rabbit hole,” Preidt said, once they learned what they were facing. “But the pictures are very scary.”

The mass was actually larger than their baby’s head, so a multidisciplinary team of doctors and other specialists with Riley Children’s Health knew his delivery would be anything but normal.

In fact, there was no guarantee that Owen would survive delivery. The tumor was interfering with his airway, so it was crucial that the medical team address that during delivery while the baby was still attached to the placenta.

While his mother was under anesthesia, doctors at Riley partially delivered the baby via C-section and intubated him to ensure he could breathe before cutting the umbilical cord and bringing the rest of him into the world.

Preidt still remembers waking up to one of those doctors squeezing her hand and telling her that little Owen had survived.

It was a beautiful moment, one that neither Preidt nor her husband dared to expect, but they could hope.

“We tried to remain positive but also realistic,” Preidt said. “The outlook wasn’t great.”

They hadn’t set up a nursery yet, she said, deciding it would be better to set it up after the fact rather than have to take it down if the outcome was poor.

Owen was whisked away to the NICU that November day in 2023 and later underwent surgery to remove the tumor.

“We were so preoccupied with his birth that we didn’t take time to totally understand the NICU,” Preidt said. “That was harder than I expected. We knew if we were in the NICU that was the best-case scenario for us, but a lot of parents didn’t expect to be there.”

The NICU team was phenomenal in every way, she said.

“We can’t say enough great things about the NICU there at Riley. Such kindness and support. They showed us such wonderful compassion.”

And tumor removal day was a happy day for the couple.

“They were able to remove it in one big chunk,” Preidt said. “We had the best team of doctors, but also luck on our side. I was lucky to have amazing doctors who I could trust with everything.”

Dr. Melinda Markham, medical director of the Fetal Center at Riley and an attending neonatologist, was part of that multidisciplinary team.

Despite everything thrown at the couple during the last half of Preidt’s pregnancy and the months that followed, “they did a heroic job of being calm through all of it,” Dr. Markham said.

“They had great hope for Owen, but they were ready to accept whatever the outcome could be,” she added. “We had a great partnership with them and built up a sense of trust … where there is no question that they can’t ask.”

She and Dr. Hiba Mustafa, maternal-fetal medicine specialist and surgeon at Riley, were among those who gathered to celebrate with Owen and his family when they released a Riley red wagon bearing his name into the Downtown hospital fleet last month.

“He looks fantastic,” Dr. Markham said. “That’s what we hope for – not only to take a baby home but a baby who’s going to thrive. Owen is thriving.”

Dr. Mustafa, who monitored Owen’s growth closely in the womb, said it took extraordinary planning and collaboration among many committed Riley teams to care for Preidt and her baby before, during and after delivery.

Once he was safely delivered and his mom was recovering, there was a collective sigh of relief in the operating room, she said.

And now, 15 months later, Owen is a happy and healthy baby, with “a spirited and fiery personality,” his mom said. “He adores dinosaurs, cars and Elmo, and nothing makes him happier than kisses from our dog and hugs from his big sister.”

Owen continues to build his vocabulary and feeding skills, while his sister dotes on him. Lyla even has a miniature IV pole like Owen’s that she uses when caring for her assortment of baby dolls.

“Taking care of babies is her passion,” her mom said.

The family has their routine down now, but leaving the relative safety of the NICU was hard in the first few weeks.

“We’d had this team of people at our beck and call helping Owen stay safe and healthy,” Preidt said. “Then coming home and trusting ourselves to take care of him was very scary.”

But looking at her son now, she said, she feels “an overwhelming sense of joy and completeness.”

“I once tried to prepare my heart for the possibility of losing him, and I am endlessly grateful that he is here with us. He fills our days with laughter and love – he’s hilarious, opinionated and incredibly cuddly.”

Gratitude runs deep for this couple.

“We are thankful for all the people who worked so hard to bring him into this world,” Dustin Lower said. “Our lives wouldn’t be the same without him.”

And while they still worry, especially about how their son will adjust to daycare this summer – and all the germs that come with that – those concerns feel much smaller compared to the life-and-death fears they once faced.

“Today, we get to focus on watching him grow,” his mom said, “and for that, we are forever thankful.”

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

Ronda Adamo remembers the fear that took hold of her heart when she learned that her grandson had serious congenital heart defects.

Brandon Halsey was born 10 years ago in northern Indiana and had to be airlifted to Riley Hospital for Children shortly after birth when it became clear that there was something wrong with his heart.

Diagnosed with Epstein anomaly, he underwent open-heart surgery as a baby to correct multiple defects and has had a challenging few years but is doing well today, said Adamo.

This year during Congenital Heart Defect Awareness Week, she is sharing an essay she wrote a few years ago to put words to the feelings she and so many other families have experienced as they navigate the complicated world of pediatric heart conditions. Following are excerpts from her essay.

“Today I tried to imagine a world without congenital heart disease.

It shook me to my core to think of it.

Just imagine never hearing those awful words, ‘There is something wrong with his heart.’ Or life-altering words, ‘He may not live.’

Imagine never knowing how much an echocardiogram can tell you about your baby’s heart.

Imagine not understanding what an EKG looks like or what those squiggly lines mean.

Imagine never having to watch a team of doctors flood into your child’s room to shock their tiny little heart back to a normal rhythm.

Imagine never hearing the call for a code blue for your child’s room.

Imagine never watching machines keep your baby alive.

Imagine not having to watch your child play and wonder how long his heart will hold up.

Imagine just for a minute what it would be like…”

Adamo, who for years volunteered with Mended Little Hearts, can’t imagine what it would be like to be outside the world of CHD. She wishes she could, but the words she wrote a few years ago still ring true today, she said.

“Brandon had a really rough start. I was distraught at the time. There is no anger that he was born like he is, but it sure would be nice to be in that other world,” she said.

A world without CHD.

Even after his surgeries, she worried.

“Frequently, he would be running and playing, and I would be terrified,” she said. “I wondered, ‘Can his heart do that? Can he handle it?’ We found his limits. We know what he can and can’t do now, but when he was younger, I’d wonder, ‘Is today the day?’ I think about it a lot.”

Brandon, 10, remains under the care of Riley cardiologist Dr. Adam Kean. He is dealing with some fluid retention around his heart, so he comes in to see the cardiology team at Riley every six months for the time being.

“We’re not dealing with the big and bad right now, so it’s a little less traumatic,” Adamo said.

But she knows there are families coming to grips with scary diagnoses and treatment options right now, and she hopes sharing her experience might offer some hope.

“When Brandon was little and going through the worst of the worst, we were sitting there for days on end at Riley and feeling very alone,” she said.

She saw a glimmer of hope in the early days of spring.

“I remember very clearly walking through the CVICU and I saw a bigger kid, maybe 13 or 14. Usually, all I saw were babies there and sometimes they didn’t go home. It hit me then that they can live. That physically took me to my knees,” Adamo said.

“That was so profound for me to realize they can live. And at that point, I realized that sharing Brandon’s story can help other people because there is hope, and that is the best message of all.”

Riley Children’s Health is consistently ranked among the nation’s leading pediatric cardiology and cardiac surgery programs by U.S. News & World Report.

“A bunch of us were staying at apartments on 10th Street and our manager sent a four-wheel drive to get us. Six of us piled in the four-wheel drive that got stuck even before it got out of the apartments and we had to dig that out,” she chuckles. “We got into Riley to relieve the nurses that had been there all night. We slept on the floor in the new unit that was being created. I will never forget that time and just the camaraderie.”

Kilpatrick strolled through the storied stained-glass entrance of Riley Children’s Hospital in May 1977 to start her career as a nurse in the PICU. She’s seen so much during those 47 years serving parents, children and families of Indiana.

Kilpatrick says she always wanted to be a pediatric nurse. “I babysat a lot when I was in high school and I loved kids,” she says. She was bedside for the first two decades and then as an educator in the PICU for 19 more years. She’s been handling discharge phone calls for patients the past eight years. At the end of February, she'll retire to spend time with family and friends, read, take some nature walks and maybe even volunteer at Riley.

She says it’s the kids, first and foremost, that make Riley such a special place. “It’s the spirit of the kids, that’s the best part. Helping out the children, working with their families—that’s the best part of Riley.”

Decades of medical progress

She’s seen decades of medical progress, too, during her career.

"We witnessed incredible advancements in cardiovascular surgery and cardiology care, including starting our cardiac transplant program," she says. "Phenomenal innovation and improvements marched forward within each service Riley has to offer from oncology to neurosurgery, from metabolism to general surgery.”

She’s seen the positive impact of vaccines on patient care with kids who early on in her career would contract Haemophilus influenzae meningitis before a Hib vaccine was introduced or how research identified the correlation between Reye syndrome and children under 18 getting aspirin.

She says kids coming back to visit when they are better is a true highlight of all her memories at Riley. “But also, along the way, just the relationships I had, the friends I got to have, they’re lifelong friends from work. And we shared not only taking care of patients, but our lives and we grew up together.”

“I cherish the times I spent growing up at Riley in my career. I've had support all along the way with every manager, respiratory therapist, unit secretary, physician, patient care assistant, housekeeper, pharmacist, cafeteria staff, fellow nurse and so many others,” she adds.

Finally, she says, “If you like taking care of children, this is the place you want to be and you will get joy from your work. You'll meet beloved, darling children with spirits that soar and their parents. You'll meet wonderful colleagues along the way because they feel the same way. Everyone does their best and they put the children first.”

It was a week and a half before she would undergo spinal fusion surgery, and Shae AnaBella Scott – Bella to her friends – was fidgeting with a stress ball and showing off her impressive blue press-on nails.

She’s talking about her life with two diagnoses that have meant spending a lot of time at Riley Hospital for Children, but she smiles shyly from the wheelchair she’s sitting in – back straight and head secured by a halo traction device.

Thirteen-year-old Bella has been a Riley patient since about the age of 3. That’s when her mom, Aimee Scott, noticed strange spots on her daughter’s skin and took her to the pediatrician.

Bella was subsequently diagnosed with NF1 (neurofibromatosis type 1), a genetic disorder that causes the growth of noncancerous tumors on nerves throughout the body. On top of that diagnosis came another: scoliosis – an abnormal curve of the spine.

Over the past 10 years, Bella has been fitted with body casts, metal rods, a brace and now halo traction – all designed to slow or correct the 90-degree curve in her spine.

The traction device looks uncomfortable, but Bella says it’s really not. She even sleeps in it.

“It’s actually really comfy,” she said.

Keeping her company on 8 East during the three weeks she must be inpatient and wearing the device before surgery has been a rotating cast of loved ones, including her mom, dad (Shamus Scott), stepmom (Cassidy Scott), grandmother and a family friend.

Riley orthopedic surgeon Dr. Tyler Christman has been her doctor for several years, putting in her first set of growing rods when she was 6, after a series of body casts that were designed to keep her spine aligned.

“Bella has been managing her scoliosis here at Riley Hospital since she was 3 years old, and she has done remarkably well,” he said, describing her as “strong and brave.”

Fast forward to Thursday, Feb. 6, and he would be the one performing spinal fusion surgery as hopefully the last step in the treatment of her scoliosis. While a relatively low percentage of kids with scoliosis require spinal fusion surgery, Bella’s condition was aggravated by the NF1.

“It was challenging, but it went very well,” the surgeon said Friday, a day after the surgery.

Challenging due to the NF1, which turned a typical four-hour surgery into an eight-hour trip to the operating room.

“The type of scoliosis Bella has is often challenging to treat surgically because of the neurofibromas (small tumors) that are around the spine and affect the quality of the bone,” Dr. Christman said.

“They are up against the vertebrae, and that changes the shape of the bone itself. They cause aggressive deformity at the apex of the curve with a lot of rotation around the neurofibromas, so the trajectory of the screws is more challenging and the available safe zone to place the screws is much smaller than normal.”

On top of that, Bella is tiny. The sixth-grader stands about 4 feet, 7 inches, and weighs 65 pounds, so Dr. Christman said he and his team modified some of the instruments for the procedure and used a smaller set of implants for her.

But overall, he is pleased with her progress.

“Our goal was to fuse her spine to prevent any further (curve) progression,” he said. “We were able to do that. We were able to use implants that should give her stability. Her shoulders are nice and level to her hips. She’s not leaning to the side anymore. And we were able to de-rotate some of the scoliosis deformity to give her a more contoured profile.”

Now free from the halo traction device, which didn’t slow her down around the halls of the hospital, Bella is recovering from surgery at Riley for a few days but should be headed home soon.

“We’re excited to get this done and be good for the start of junior high,” Cassidy Scott said.

Bella, meanwhile, is excited to get back on the volleyball court and back in the swimming pool as she shakes off the memory of the body casts, lengthening rods and braces that got in her way before surgery.

To pass the time at Riley as she waited for surgery, Bella began keeping a journal – with different pens signaling different moods – and she watched a lot of “Gilmore Girls.”

“Things haven’t always gone the way we think they’re going to go, but she’s always positive,” Scott said. “She takes everything in stride. She’s tough.”

Dr. Christman agreed.

“That positive attitude has certainly helped her through the challenges of casting and bracing and multiple surgeries for her spine,” he said. “She’s definitely a very strong young girl."

There’s one thing Dr. Christman can’t help her with, however: French braids.

He tried fixing her hair in the operating room before he put the halo traction device on her head a few weeks ago, but she came out with three wild pony tails.

“My daughter just turned 10, and I’ve been trying my best to learn how to French braid her hair for a long time,” the surgeon said. “For whatever reason, I struggle with that. I’m still learning,” he chuckled.

For now, he will stick to surgery and leave hairstyling to someone else.

“We fused (her spine) with the maximum amount of correction that I think was safe and that the bone quality and the curve rigidity would allow for,” he said. “With it fused in place now, she ideally will have no more surgeries for her spine, assuming everything continues to go well.”

Bella also sees neurology and ophthalmology at Riley, so she won’t be a stranger, but she and her family are relieved to have this latest procedure in the rearview mirror.

“Riley has been wonderful, and Dr. Christman has been great,” her stepmom said. “I think we’re seeing the light at the end of the tunnel with the fusion. She’s ready for it to be done.”

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

A board-certified surgeon with over three decades of experience, Dr. Rodefeld knows firsthand what it means to lead impactful work for the field of pediatric heart surgery. That is why he was recently awarded the Earl Bakken Scientific Achievement Award, a distinguished honor representing those making significant contributions to cardiothoracic surgery.

"This award is a tremendous honor, and it is deeply humbling to be included among a group of exceptionally accomplished past awardees," Dr. Rodefeld said. "They are giants in the field, and many were my mentors who significantly impacted my clinical and scientific work. Recognition from colleagues and peers is profoundly rewarding and fuels my continued passion and enthusiasm."

The award recognizes Dr. Rodefeld’s innovative development of the Fontan pump, a medical device aimed to revolutionize care for patients with single-ventricle heart defects. This small, implantable device, which is supported by multiple grants from the National Institutes of Health, works by restoring a crucial power source to the circulatory system, meant to simulate the role of a missing right ventricle.

While single-heart defects require a multi-stage surgical procedure that involves reconfiguring the heart’s circulatory system, the need to prioritize it is always growing. By developing the Fontan pump, it uses a spinning disc mechanism to help move blood from the veins into the lungs for oxygenation, improving overall blood flow augmentation. In turn, this solution ensures greater circulatory function for patients with single-ventricle heart defects, without the need of a complex surgical operation.

“The operation right now is not curative—it doesn’t 100 percent resolve the problem,” Dr. Rodefeld said. “It gives the patient a situation they can live with relatively long-term, but eventually other problems will creep up and become a major problem.”

Under research since 2010, the novel blood pump has served as a significant stride forward for patients with complex heart conditions. For Dr. Rodefeld, this award is just one deserving tribute to his ongoing determination to propelling pediatric heart surgery.

Established in 1999 through a grant from Medtronic, Inc., the Earl Bakken Scientific Achievement Award recognizes individuals who have advanced the field of cardiothoracic surgery and patient quality of life. Named after Medtronic co-founder Earl Bakken, who developed the first wearable artificial pacemaker, the award was honored to Dr. Rodefeld in January at The Society of Thoracic Surgeons’ 61^st Annual Meeting.

About pediatric cardiothoracic surgery at Riley Children’s

Dr. Rodefeld and the pediatric cardiothoracic surgery team at Riley Children’s lead advanced heart surgery to treat children with rare and complex cardiovascular diseases. Among many accomplishments, key distinctions include:

• One of the nation’s most experienced centers for the Ross procedure
• Seven decades of experience with right ventricular outflow tract reconstruction
• Pediatric and adult congenital transplant program accredited by the Adult Congenital Heart Association

Learn more about cardiothoracic surgery at Riley Children's.

When your little boy is having trouble breathing, you act. That’s what Brianna and Sean Presnell did Monday morning when their son’s cold turned into something worse.

They rushed 2½-year-old Maverick to the emergency department at Riley Hospital for Children, where he was diagnosed with flu A and RSV, two serious respiratory illnesses, particularly for a medically complex child such as Maverick. He was admitted to the hospital and spent two nights inpatient before being discharged Wednesday.

Maverick, who spent the first 212 days of his life at Riley, went home in December 2022 with a trach, ventilator and oxygen, but he had been doing so well lately that he was off the vent and only required extra oxygen at night.

His medical challenges started with a congenital diaphragmatic hernia, which can push organs up into the chest, compromising heart and lung function. He had surgery for that, as well as for a heart defect, but his lungs never fully recovered.

Still, for the past two years, he’s been relatively healthy and quite happy as he’s grown into an active 2-year-old. In fact, this week’s hospital admission was the first since he went home as a baby more than two years ago.

“He was requiring more oxygen support than normal,” Maverick’s mom said. “That’s the main reason we brought him in.”

She’s calm now, but it was very scary to see her little boy struggling to breathe, especially the night before they brought him to Riley.

“He sleeps in our room since he’s still on monitoring machines, but the night we decided we were going to Riley in the morning, we all slept in the living room on the couch together,” she said.

Kids with respiratory illnesses, including flu, RSV, adenovirus and Covid, continue to flood the ED at Riley and other hospitals this time of year.

“We’ve been incredibly busy,” Dr. Cory Showalter, medical director of Riley’s ED, said Wednesday. “In fact, the past two days are the busiest we’ve had, with 250 ED visits each day.”

Yet, he added, “Everyone is doing an awesome job helping each other.”

Those visits of course include trauma and other illnesses, but a large number are respiratory illnesses, not unusual for winter, he said.

To avoid wait times in the ED, Dr. Showalter advises families in non-emergency situations to work with their primary care physician first to determine the best plan of care.

Options as noted in the accompanying graphic below also include virtual visits and urgent care locations for non-life-threatening conditions.

Emergency department visits should be reserved for life-threatening conditions, including heavy bleeding, difficulty breathing, loss of consciousness, poisoning, seizures, severe abdominal pain, serious burns, head trauma, stroke and visibly broken bones.

“We are here to help if you need us, but there may be delays as we work hard to take care of many patients,” the emergency medicine physician said. “If your child is ill, please work with your primary care physician to determine the best plan for care.”