Riley Children's Health https://www.rileychildrens.org/ Riley Children’s Health provides access to pediatric primary and specialty care across Indiana, including at Riley Hospital for Children in downtown Indianapolis. en-us Tue, 18 Jun 2024 21:45:08 -0400 Tue, 18 Jun 2024 21:45:08 -0400 Graduations continue – this time at Riley https://www.rileychildrens.org/connections/graduations-continue-this-time-at-riley Mon, 17 Jun 2024 17:53:00 -0400 https://www.rileychildrens.org/connections/graduations-continue-this-time-at-riley By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Erik Fields recently received his high school diploma from the Indiana Academy for Science, Mathematics and Humanities in Muncie, Indiana, but on Friday night, he will cross another stage, this time to receive a diploma from the hematology-oncology team at Riley Children’s Health.

Riley’s annual graduation ceremony for patients who have undergone lengthy cancer treatments is at 7 p.m. Friday in the auditorium at the Riley Outpatient Center.

It is especially meaningful for students who may have missed big chunks of their high school career while hospitalized.

hem-onc graduation

Erik, 18, was diagnosed shortly after his 16th birthday in March 2022 with Stage 4 DLBCL (diffuse large B cell lymphoma).

Considering that the teen and his family initially thought he had appendicitis, the cancer diagnosis when he arrived at Riley was difficult to grasp, but he began treatment immediately and finished his regimen in September 2022.

By then, the former Franklin Central High School student had already begun his studies online at Indiana Academy – mixing chemo with AP physics – but by the following spring, he moved to Muncie to attend school in person.

“Academics have always been extremely important to him,” said his mom, Raeann, though the move was hard on the whole family, which includes dad Jeremy and two older siblings.

Erik suffered multiple complications during and after treatment, bouncing from the hematology-oncology unit to the PICU at Riley, but he is in remission and plans to attend Indiana University Indianapolis this fall to study chemistry.

While the initial cancer diagnosis “crushed him,” his mom said, he eventually bonded with several nurses and took pains to show off his style when he needed to walk around the unit.

“Erik is really into sneakers, especially Jordans. Living in the hospital for so long, he would ask for a couple pairs of his Jordans to be there so he would have them for PT,” she said. “He would coordinate his hat and shoes, along with his hospital gown.”

The teen will join a half-dozen other Riley oncology grads in Friday’s ceremony, which will include a speech by former patient and current Butler University student Olivia Stoy.

]]>
Why fetal echocardiograms are essential in IVF pregnancies https://www.rileychildrens.org/connections/why-fetal-echocardiograms-are-essential-in-ivf-pregnancies Mon, 17 Jun 2024 16:09:00 -0400 https://www.rileychildrens.org/connections/why-fetal-echocardiograms-are-essential-in-ivf-pregnancies For many expectant parents, the ultrasound is the first image they see of their growing baby. When that ultrasound image shows a concerning issue with the baby’s heart–or if the parents have a history of heart problems–the doctor may order a fetal echocardiogram, or fetal echo, to get a better look at the baby’s heart.

When a baby is conceived by in-vitro fertilization (IVF) the baby has an increased risk for congenital heart disease, so parents can expect to undergo a fetal echo. Dr. Timothy Cordes, MD, pediatric cardiologist at Riley Children’s Health, discusses why a fetal echo is used during IVF pregnancy.

When you need a fetal echocardiogram

Whenever a pregnant mother has a higher-than-average risk of heart issues, an echo is used to screen for congenital heart defects or CHD.

Risk factors that may call for a screening echo include:

  • A prenatal ultrasound detecting a potential heart problem
  • A family history of CHD in the baby’s parent or siblings
  • Chromosomal abnormalities detected in prenatal genetic testing
  • Any other fetal abnormalities
  • IVF pregnancies
  • Twin, triplet or other pregnancies of multiples
  • Use of certain anti-seizure or anti-depressant medications during pregnancy
  • A mother with diabetes, lupus or other chronic diseases

IVF pregnancies carry a slightly higher risk for CHD than the average pregnancy, so an echo is likely to be ordered.

“The average population’s risk of delivering a baby with a CHD is slightly under 1%. IVF increases the risk to about 2%–and IVF twins increases to over 2%– which would also qualify for a CHD screening,” Dr. Cordes said.

Do IVF babies have more heart problems?

Research has examined IVF pregnancies from every angle: the use of donated eggs versus a mother’s own eggs; donated sperm versus parent sperm; implantation IVF versus artificial insemination. Dr. Cordes says research has not shown a link between the method used and risks for heart problems. While a lot of factors may influence the risk of CHD for IVF pregnancies, the true cause remains unclear.

“Heart defects are the most common birth defects in pregnancy, but the heart is also one of the most complicated organ to develop. So, while there could be something different about the ways the egg and sperm are formed during IVF, the link is still unknown,” Dr. Cordes said. “We still expect 98% of IVF babies to have a normal heart, but that 1.8% is significant enough for us to perform an echocardiogram.”

While the link between assisted reproductive technology like IVF and heart defects remains unclear, the American College of Obstetricians and Gynecologists recommends that the use of this screening be balanced with patient risk factors and available resources.

Fetal echocardiography can help with early intervention

There will always be babies born with heart conditions that aren’t identified in utero. However, the use of fetal echocardiograms for at-risk pregnancies can not only help address issues before delivery, but it can also help parents and care providers prepare for delivering a child with known heart issues.

“Knowing about these heart issues can help ensure the mother is delivering at a hospital with a program that can address fetal heart problems and manage them safely,” Dr. Cordes said. “Knowing these things can help inform the birth plan, the delivery time and location. That alone can ensure a better long-term outcome, even if the baby doesn’t require any immediate medical intervention.”

Dr. Cordes says learning about potential heart issues before the baby is born can also give parents more time to process the news and explore their options for support.

Planning an IVF pregnancy

While there’s no clear reason why IVF pregnancies carry a higher risk for CHD, prenatal screenings and fetal echocardiograms can help identify potential problems early and help parents and medical teams alike prepare for a safe arrival.

]]>
DAISY celebrates NICU nurse https://www.rileychildrens.org/connections/daisy-celebrates-nicu-nurse Thu, 13 Jun 2024 13:30:00 -0400 https://www.rileychildrens.org/connections/daisy-celebrates-nicu-nurse By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Kendal Williams didn’t know why her manager had asked her to come to her office. The young nurse wondered what was up, but the crowd of colleagues in a nearby conference room quickly made it clear that this was a party.

Kendal Williams nurse

Williams, a nurse in the Maternity Tower NICU at Riley Hospital for Children, was surprised last week with a DAISY Award for nursing excellence and compassionate care.

“I didn’t expect this at all,” she said, after receiving the flowers, certificate and healing hands sculpture that came with the recognition. “I’m just extremely grateful that I get to make an impact on people’s lives in the NICU.”

Kelsey Long nominated Williams for the award, struck by the skilled care and compassion the young nurse showed during the several months that Long’s daughter, Rory, was in the NICU this year.

Kendal Williams nurse

“Our daughter was born at 25 weeks’ gestational age and weighed just 2 pounds at birth,” Long wrote in her nomination, which she agreed to share for this story.

“It had been a dramatic series of events for both the baby and myself, and my husband and I were left with our heads spinning – a constant cycle of excitement, fear, confusion, gratefulness and devastation,” she said.

“This was not the story we had envisioned for our family, and we were acutely aware of the potentially heartbreaking ending that could come with a baby born so early.”

Kendal Williams nurse

One thing she and her husband, Cody, agreed on, however, was how grateful they were to be in the care of the Riley team, Long said.

“There wasn’t a single day when we felt like we weren’t receiving the best care possible.”

Williams, who was on the night shift when she helped admit Rory to the NICU in January the night she was born, stood out for the way she made it her mission to take care of her patient and the family, Long said.

“Even though we were rarely able to visit the NICU at night (the couple has two young sons at home), Kendal was always a friendly voice on the other end of the phone when I called before bed to check in. It truly made me rest easier when I knew that Rory was in Kendal’s care for the night.”

Kendal Williams nurse

When she moved to dayshift, the Longs got to meet Williams for the first time.

“The professionalism, knowledge and compassion we felt on those evening calls were even more evident face-to-face.”

Whether it was explaining tests, machines or doctors’ comments, Williams patiently answered all of the couple’s questions, making the experience less intimidating for the preemie’s parents.

She was direct and never sugarcoated her answers, yet still managed to be comforting when delivering news that was difficult to hear, Long said.

Kendal Williams nurse

Williams, a nurse at Riley for 18 months, graduated from IU Kokomo, where she played collegiate volleyball. Outside of the hospital, she enjoys camping and hiking with friends, walking her two dogs and curling up with a good book.

Working in the NICU is a dream job, she said, where she can learn and grow as a nurse while also supporting families in difficult situations.

Kendal Williams nurse

“For parents, the NICU is a really tough place to be,” she said, “so if I can be any kind of support while they’re here, it makes me feel grateful.”

Cody and Kelsey Long are also grateful, now that Rory is home with them and her two big brothers.

“She is doing so well since she has been home. She really is thriving,” Kelsey Long said.

“Without Kendal, I’m not sure where our daughter or our family would be today, but I am confident that we are thriving because we had the privilege of being in her care.”

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

]]>
Retro Riley: Riley chapel dedicated in 1958 https://www.rileychildrens.org/connections/retro-riley-riley-chapel-dedicated-in-1958 Thu, 13 Jun 2024 08:10:00 -0400 https://www.rileychildrens.org/connections/retro-riley-riley-chapel-dedicated-in-1958 Riley Hospital for Children’s first chapel was made possible in 1958 by funding from the Riley Hospital Cheer Guild. On Oct. 13, 1958, the new chapel was dedicated in memory of Mary Emma Thiebaud Porter, who founded the Riley Cheer Guild in April 1924, and was officially presented to Herman B Wells, president of Indiana University, by Ona Temple Eddingfield Layne, who chaired the chapel committee of the Riley Hospital Cheer Guild. Funds for the chapel were donated by 565 Riley Cheer Guild chapters, from individual members, and other organizations.

Riley Hospital for Children’s first chapel

The meditation chapel was located in a refurbished storage room just inside the front door to the hospital’s original lobby. Every detail of the small quiet room was planned by the guild’s chapel committee working with longtime hospital architects Daggett, Naegele and Daggett. Robert Frost Daggett was the architect for the original Riley Hospital for Children built in 1924. The chapel was paneled in oak to match the hospital lobby. The six oak pews were padded with soft green velvet, and gray sculptured carpeting covered the floor. Gray draperies, patterned with a “tree of life” embroidery, framed the stained-glass window that featured the following quote from “America’s Thanksgiving 1900,” one of James Whitcomb Riley’s poems:

“And, Father, give us first to comprehend,
No ill can come from Thee; lean Thou and lend
Us clearer sight to see
Our boundless debt to Thee,
Since all Thy deeds are blessings, in the end.”

The Rev. Dan Young, a former Riley Hospital chaplain, recalls that in the early 2000s, when Riley leaders were planning for the new tower, there was a decision to move the chapel door from the north side of the chapel to the west end. This move provided an opportunity to create a new door with stained glass. The Riley Children’s Foundation funded the new door. The chaplain team met with a stained-glass artist from a small art glass company to design the new door and glass. The new door window had a rainbow (a sign of hope that children would recognize) and a tree (sign of life).

The Cheer Guild continued to build the vision for the Medical Center’s chapel program and funded a second chapel at Indiana University Hospital in 1975 that was dedicated in memory of Anne L. Walker, longtime Cheer Guild volunteer, who passed away in 1974.

Since 1958, the nondenominational sacred space of Riley Hospital’s chapel has continued to find frequent use by families, friends of families and staff. Prayer books were provided in the chapel for people to write prayers for loved ones. Some of these prayers, included in the 2012 book “Voices from Riley” are shown below:

Dear Lord: Please stay with my little sister for the rest of her life and thank you for healing my little sister.

Dear God: Please help me. I know I am strong, but I am so scared. Please help me heal . . .

Dear Lord: Please give us one more good day with our baby.

Compiled by the Riley Hospital Historic Preservation Committee, photos courtesy of the Riley Cheer Guild, Indiana State Library, the Rev. Dan Young

]]>
4 Key Things to Know About Getting Your Child Assessed and Treated for ADHD https://www.rileychildrens.org/connections/4-key-things-to-know-about-getting-your-child-assessed-and-treated-for-adhd Wed, 12 Jun 2024 14:43:00 -0400 https://www.rileychildrens.org/connections/4-key-things-to-know-about-getting-your-child-assessed-and-treated-for-adhd
Psychological Testing Isn't Necessary for an ADHD Diagnosis

When it comes to diagnosing ADHD in children, extensive psychological testing is not required. ADHD is a clinical diagnosis that can be made through a brief assessment with a pediatrician, psychologist, or psychiatrist. These medical professionals have the expertise to identify the symptoms of ADHD and determine if a child meets the diagnostic criteria without the need for elaborate, expensive testing.

Stimulant Medications Are the First-Line Treatment

For children diagnosed with ADHD, stimulant medications are considered the primary and most effective treatment approach. Medications like methylphenidate (e.g. Ritalin) and amphetamines (e.g. Adderall) have been shown to be highly beneficial in managing the core symptoms of ADHD, such as inattention, hyperactivity, and impulsivity. However, it's important to note that these medications are generally not recommended for children under the age of four.

Therapy Alone Is Not the Best First Treatment

Contrary to popular belief, therapy is not considered the primary or first-line treatment for ADHD in children. While therapies targeting impulsivity and inattention can be helpful, they have not been found to be as effective as medication treatment on their own. The most effective approach typically involves a combination of medication management and targeted therapies to address specific challenges related to ADHD.

Organizational and Planning Therapies Can Be Beneficial

One type of therapy that can be a valuable addition to medication treatment for ADHD is therapy focused on improving organizational skills and planning abilities. Children with ADHD often struggle with tasks that require executive functioning, such as prioritizing, time management, and task completion. Therapies that specifically target these areas can help children develop strategies and skills to better manage their ADHD symptoms.

Seeking Help for ADHD Assessment and Treatment

If you have concerns about your child's attention, hyperactivity, or impulsivity, the best place to start is by discussing these issues with your child's pediatrician. They can provide an initial assessment and, if necessary, refer your child to a specialist, such as a child psychologist or child psychiatrist, for a more comprehensive evaluation and treatment plan.

]]>
From the NICU to college graduation https://www.rileychildrens.org/connections/from-the-nicu-to-college-graduation Tue, 11 Jun 2024 12:11:00 -0400 https://www.rileychildrens.org/connections/from-the-nicu-to-college-graduation By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Twenty-two years ago, a young mom didn’t dare contemplate the day that her twins might graduate from high school, much less college.

She prayed for one more month, one more day, one more hour with her babies, born prematurely at 27 weeks in 2002.

Gabe and Olivia Rowles

But those babies did graduate from high school, then college last month, and Amy McAbee wanted to share that good news with all those at Riley Children’s Health who had a hand in caring for Gabriel and Olivia Rowles, born four minutes apart and each weighing 2 pounds that July day more than two decades ago.

The twins were featured in a Riley Messenger story many years ago, and McAbee photographed them holding that article as they celebrated their college graduations – Olivia from Trine University and Gabe from IU East.

“I am forever grateful for every single day I have with these kids,” said McAbee, who works in radiology at IU Health Jay Hospital in Portland, Indiana. “I am so thankful for all of the medical staff who cared for them, for family and friends who stepped in to help with all the kids, and for every single prayer.”

McAbee, who also has two older children – Lexie, a nurse at IU Health Ball Memorial Cancer Center, and Luke, who works for UKG – said she has been blessed with “the four most incredible humans.”

The younger two had a rougher start in life. Olivia, who was hospitalized in the Riley NICU for about nine weeks, battled apnea and bradycardia as she continued to grow in the hospital. But Gabe was born with a serious heart defect and underwent multiple surgeries by Dr. John Brown – “our hero” – McAbee said.

Gabe, who remained at Riley for the first nine months of his life, continues to see Riley cardiologist Dr. Robert Darragh. In time, he may require a heart and/or liver transplant, his mom said.

Just the fact that he’s here though is a miracle, she added. It wasn’t just the heart condition. He also suffered necrotizing enterocolitis, a potentially fatal complication that required doctors to perform surgery at the bedside to remove a portion of his intestine.

“We had lots and lots of scary moments, times when they told us to call the rest of the family back to the hospital. Medically, it doesn’t make sense for him to be here, after all that happened, but he’s just meant to be here.”

That’s due in no small part to the team at Riley, many of whom she keeps in touch with, McAbee said.

“They are amazing. I cannot praise them enough. All those beautiful nurses who took care of them, Nancy, who did their echos (and took their high school senior pictures), Susan, who does Gabe’s EKGs and stress tests.”

And so many more, she said.

All in all, it was a terrifying start, “but what they have accomplished is nothing short of a miracle.”

McAbee recalls how her arms were marked with bruises from the incubators as she reached in through the holes to be close to her twins day and night.

And now they are all grown up.

Olivia, who lives near her mom and stepdad, Tyler McAbee, plans to continue her education with a master’s in criminal justice, while Gabe, who lives at home, intends to focus on creating art.

“They are an incredibly inspirational success story,” McAbee said, adding, “It is humbling to be their mom.”

]]>
Three-year-old requires critical care after bacterial meningitis diagnosis https://www.rileychildrens.org/connections/three-year-old-requires-critical-care-after-bacterial-meningitis-diagnosis Sat, 01 Jun 2024 21:25:00 -0400 https://www.rileychildrens.org/connections/three-year-old-requires-critical-care-after-bacterial-meningitis-diagnosis Oliver Koonce’s parents took him the Riley Children’s Health emergency department due to a suspected stomach bug.

They soon learned their three-year-old son had bacterial meningitis.

Oliver was admitted to Riley. His condition worsened after he suffered what appeared to be a seizure. His parents say the Riley team jumped into action to stabilize their son.

Oliver was moved to the intensive care unit and required a ventilator.

Anna and Phillip Koonce, Oliver’s parents, say they’re grateful for the doctors and nurses who walked them through this scary experience and treated Oliver.

The medical team found a way to place a drain to relieve the pressure on Oliver’s brain, which had swelled due to the meningitis.

While Oliver faced some initial challenges after being discharged, his surprised his parents with his quick recovery.

The Riley Critical Care team will have the opportunity to reunite with some of the families they've cared for at the annual Riley Critical Care Walk, happening June 22nd. You can find more information here: https://rileykids.org/get-invo...

]]>
NAMI in the Lobby puts mental health front and center https://www.rileychildrens.org/connections/nami-in-the-lobby-puts-mental-health-front-and-center Fri, 31 May 2024 10:37:00 -0400 https://www.rileychildrens.org/connections/nami-in-the-lobby-puts-mental-health-front-and-center By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

They all have their own stories. Stories of struggle and loss.

That’s what brings them to the busy hallway in Simon Family Tower, each ready to listen, to share, to offer support to someone touched by mental illness.

NAMI in the Lobby is a program designed by the National Alliance on Mental Illness that partners with hospitals to provide trained volunteers in a designated hospital space, offering information on NAMI and other mental health resources.

Riley Hospital for Children became the first children’s hospital to participate in the program when it launched locally last summer.

Twice a week (Monday and Thursday, 4 to 7 p.m.), NAMI- and Riley-trained volunteers man a booth chockful of materials to guide parents, patients and team members who might be struggling with or know someone dealing with a mental health condition.

“This is a program that is near and dear to my heart,” said Riley Volunteer Services program manager Susan Schwarz, who worked with Dr. Leslie Hulvershorn, Riley behavioral health specialist, and NAMI to bring the program to Riley, in large part due to the rise in mental health issues in kids, but for deeply personal reasons as well.

“I lost my sister, who succumbed to depression 15 years ago,” Schwarz said. “This is a real need in our community.”

While Riley is known for the advanced care it provides for all kinds of medical conditions, mental and behavioral health issues require an increased level of commitment.

According to the Centers for Disease Control, one in six youth ages 6 to 17 have a mental health diagnosis. Even when there is effective treatment, a child can experience a mental health crisis, and in that moment, access to help and support can seem out of reach.

NAMI in the Lobby is designed to make resources more visible and accessible for whomever needs them.

“This is an amazing partnership to be able to bring the NAMI program in here to provide education and resources to our family members and staff,” Schwarz said. “To me, it’s one of the most impactful volunteer services we have. I can’t tell you how much good they’re doing in this hallway and the feedback I get.”

Among those volunteering this week are Miranda Dehaai, program manager for NAMI, as well as David and Lisa Doerner and Krystyna Karr, all of whom are open about the difficulties they or their children have faced in getting help for mental illness.

At Riley in particular, parents are already going through a lot because their child might have a difficult diagnosis or a chronic illness that can lead to anxiety and depression for parents and kids, Karr said.

“It’s not just about behavioral health, it’s about understanding that mental health is wellness as a whole and to be able to start that conversation,” she said.

David Doerner said he and his wife, who volunteer at Riley’s NAMI in the Lobby booth twice a month, have found NAMI to be an excellent resource for them as they have navigated a difficult mental illness journey with their son over the past several years.

He needed help, but so did they as his parents.

“You have to be an advocate for yourself or someone else to have a successful recovery, and there are so many people who don’t have that,” said Doerner, who went through NAMI’s family to family class and, with his wife, built lasting relationships with other parents.

While many diagnoses come with a sense of hopelessness for those who aren’t connected with helpful resources, Lisa Doerner said there is a lot of opportunity for hope.

“But it takes that advocacy because it is very easy for the patient to succumb to the illness,” she said, “and if there’s not someone advocating – getting them to appointments, helping them with medication, they won’t climb out of it.”

In addition to multiple pamphlets and information sheets, the volunteer team distributes free medication lock boxes, gun locks and trigger locks upon request. They offer referrals for follow-up calls by NAMI staff and can speak with authority on the help that the organization provides.

“We meet people wherever they are,” Karr said. “Someone might walk up and may not want to engage in a conversation but just pick something up from the table, and that’s OK. If we have someone who wants that 20-minute conversation, that’s OK too.”

Even if they walk away with just a sticker, it’s a start, Karr said.

“When people realize that the volunteers have a stake in the game because of our own connection to mental health, it removes barriers and allows people to talk about their experience.”

Schwarz would like to see the NAMI in the Lobby booth be a permanent installation at Riley, staffed seven days a week. That will require a greater level of commitment, as well as more volunteers.

Training is provided by NAMI Indiana, which has a network of 16 affiliates around the state.

To learn more, contact Schwarz at sschwarz@iuhealth.org or NAMI at info@namiindiana.org.

If you or someone you know needs immediate assistance, call the national suicide and crisis lifeline at 988.

Earlier this year, Riley Children’s Foundation announced an $8 million commitment from Sarah and John Lechleiter to address the youth mental health crisis in Indiana by making mental and behavioral health services available through pediatric and primary care offices.

Riley Children’s Health is initially embedding mental health services in Riley and IU Health pediatric and primary care offices, reaching 70,000 to 80,000 children and adolescents in diverse urban, suburban and rural communities across Indiana.

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

]]>
Retro Riley: Check out the Riley library – then and now https://www.rileychildrens.org/connections/retro-riley-check-out-the-riley-library-then-and-now Thu, 30 May 2024 08:05:00 -0400 https://www.rileychildrens.org/connections/retro-riley-check-out-the-riley-library-then-and-now Here are three things you need to know to fully appreciate the history behind the Edward A. Block Family Library in the hospital’s Family Resource Center on the first floor of Simon Family Tower:

Riley library

James Whitcomb Riley donated the land that became the site for the Indianapolis Public Library, which then provided support for Riley Hospital’s library. One of the things the Hoosier poet did with the money he made from his poetry was to buy property. One piece of property he owned was at the corner of North Meridian Street and St. Clair Avenue. Riley donated that land to the city in 1911 with the hope that it would be used to build a public library. Chairing the Indianapolis Board of School Commissioners was Dr. Frank Morrison, an early physician leader at Riley Hospital, who lent his support for the land being used as a public library and eventually, that proposal was approved. In March 1916, only months before Riley passed away in July, the cornerstone for the Indianapolis Public Library was dedicated. Riley Hospital for Children opened in November 1924, and beginning in 1925, the Public Library began offering the services of a part-time assistant to take care of the new Library at Riley Hospital, which was on the hospital’s fourth floor (near the Riley Cheer Guild office today). By 1945, the Indiana University Medical Center, through its own library system, took over supervision and maintenance of the Riley library.

Riley library

The children’s library at Riley Hospital began with support from libraries, artists, book donations, librarians and the Riley Cheer Guild. At the 1922 fall conference of the Indiana Library Association, a joint committee of librarians and trustees was appointed to provide for the collection and organization of a special children’s library at Riley Hospital. By 1924, the Indiana Library Association reported total subscriptions and cash received at over $4,000, representing 225 librarians in 52 libraries around the state. The Indiana Library Association also supplied equipment for Riley Hospital’s library service in the Rotary Building, which opened for Riley Hospital convalescent patients in November 1931. The Riley Cheer Guild also provided support for magazine subscriptions, children’s books, reading aids, audio-visual equipment and library furniture such as book carts and display cases. The hospital library and the Family Resource Center moved into the current first-floor location for the Edward A. Block Family Library in 2004.

Riley library

Riley Hospital’s library is named for Edward A. Block, youngest son of William H. Block, who founded Block Department Store and was an early supporter of Riley Hospital for Children. In 1922, William H. Block made a large donation to the building fund for the hospital and said at that time, “I am very happy to be a subscriber to the Riley memorial fund. In fact, this memorial movement appeals to me more strongly than anything of the sort that has come to my attention for some time.” When he died of a heart attack on Dec. 11, 1928, at his Indianapolis home, his sons assumed responsibility for operation of the company, which was sold in 1962. Through the generosity of Edward A. Block, the Edward A. Block Family Library opened in 2004 as part of the Frank and Marian Snyder Family Resource Center at Riley Hospital for Children at IU Health. The library provides education and entertainment resources, consumer medical information, and amenities for children and families at the hospital.

--Compiled by the Riley Hospital Historic Preservation Committee; photos provided by IUPUI University Library Special Collections and Archives

]]>
Food is the best medicine for celiac disease https://www.rileychildrens.org/connections/food-is-the-best-medicine-for-celiac-disease Wed, 29 May 2024 08:21:00 -0400 https://www.rileychildrens.org/connections/food-is-the-best-medicine-for-celiac-disease By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Luke and Shelley Pierce couldn’t figure out why their son Oscar frequently complained of stomach pain and other digestive problems.

Sometimes these issues cropped up at school, and they couldn’t help but wonder if something was going on there that might explain it.

He was nearing the end of second grade when the stomach aches started. But in third grade, the Greenwood parents began noticing it more.

Oscar Pierce celiac disease

“We had considered maybe it was anxiety; he’s always been a bit introverted,” Shelley Pierce said.

Things got worse. He began suffering stomach cramps and vomiting after eating his beloved Oreos.

“At that point, we knew there was something going on,” his mom said.

Oscar’s pediatrician suggested they take him off dairy for a few days and see if that helped. It didn’t.

In January 2020, they took him in for more testing, including a celiac disease panel. His numbers were “astronomically high,” his mom recalled.

Oscar Pierce celiac disease

“We knew we had to see a GI (gastrointestinal) specialist, and we were referred to Dr. Brandon Sparks here at Riley.”

Dr. Sparks, who leads the celiac program at Riley Children’s Health, said about 1% of the U.S. population suffers from celiac disease, but that is likely a low estimate because it is under-diagnosed.

“Better testing and more awareness have helped families get the right diagnosis and start the right treatment,” he said.

Celiac disease is an illness caused by an immune reaction to gluten, a protein found in foods containing wheat, barley or rye. For those with celiac disease, eating gluten triggers an immune response in the small intestine.

Over time, the immune reaction creates inflammation that damages the lining of the intestine and prevents absorption of some nutrients, which can affect growth.

Currently, the only treatment is a strict gluten-free diet.

Oscar Pierce celiac disease

Oscar, now 13, was scheduled for a biopsy of his intestines in March 2020, but the emergence of COVID-19 delayed that procedure until July. That’s when they got the official diagnosis of celiac disease, something his parents had heard of but knew little about.

What they did know was that they had to make some big changes.

Overwhelmed is how Shelley remembers feeling.

“It was tough to hear as a parent. I just kept thinking about all the changes we were going to have to make, and I didn’t know how to step through that safely to make sure his home environment felt like his safe zone,” she said.

For the Pierce family, which includes two other children, it was not just about a new gluten-free diet for their son, though that was daunting enough. It was about making sure there was no cross-contamination from cookware, utensils and appliances at home because any trace amounts of gluten could still make Oscar sick.

So, they did a kitchen cleanout, purging their old Teflon-coated cookware, utensils, toaster, grill and air fryer and replacing them with new items for use only with gluten-free foods.

Plenty of people choose to eat gluten-free for the health benefits, Oscar’s dad said, but the prep may not be as important because they don’t have celiac disease.

“For him, cross-contamination is huge. Traces of gluten can cause big setbacks and make him sick. So, when we go out, we have to be very, very careful and very clear and have those conversations with restaurants on how the food’s prepared, do the fryers get shared with other items, how often do they change gloves,” Luke said.

Because of that, they don’t eat out often and they stick to a small circle of restaurants. In fact, their first meal out as a family was a year and a half after diagnosis during a trip to Florida.

When they explained their situation to a server at a small restaurant in Destin, the manager came out and took care of everything, Shelley recalled.

“Oscar was able to have a hamburger with a gluten-free bun and chips. He was able to eat with his cousins and not have to eat a bagged lunch. It was such a relief for me – I was in tears.”

Luke credits his wife for doing the heavy lifting when it comes to finding alternative foods and adapting recipes for their family.

“Shelley did a lot of the research and walked the grocery aisles. Gluten-free is really very natural, but when you have a kid who doesn’t love a lot of fruits and veggies, it’s a big adjustment to make sure he gets the right foods and food that tastes good,” he said.

While at first there was some reluctance on Oscar’s part to try new foods or new recipes, “once he realized this is something we have to do he started finding acceptable options.”

Ask Oscar, and he’ll tell you his mom’s gluten-free macaroni and cheese is awesome, as are her chocolate-chip cookies. Stax chips are a good substitute for Pringles, and he’s found gluten-free bread, pizza, pancakes and donuts he likes.

Most meals prepared at home are gluten-free, but a cabinet holds packaged snacks that Oscar’s siblings, who do not have a sensitivity to gluten, can eat.

With Oscar’s diagnosis, any immediate family member has a 10% chance of having it as well, Shelley said, but everyone was tested, and the results were negative.

“That doesn’t mean it can’t be triggered at some point because it is an auto immune disease, so they suggest we get them tested every few years,” she said.

Oscar returns to Riley for blood tests once or twice a year and is doing well, but the family remains vigilant because celiac disease is a lifelong illness.

“He will not grow out of it,” his mom said. “But he has learned to ask questions and to read labels. He has gained a lot of tools he can use.”

With help from friends, a dietitian and counselor, as well as Dr. Sparks, Oscar and his family have been able to navigate this new normal over the past few years, and they want to share what they’ve learned to help other families.

“It takes a minute to get used to it, but counseling helped me understand it’s not that bad,” Oscar said during a visit to Riley.

“There are a lot of people who walk into this and it seems overwhelming,” his dad added. “If we can help someone not have to tackle some of these things blindly, absolutely, we want to help ease that burden. It is overwhelming at first, but you can get there. You can do it and have a pretty normal life.”

For those just starting out with a gluten-free diet, the best advice is to be cautious and ask questions, Dr. Sparks advised.

“Each new patient is referred to our dietitian team for initial gluten-free diet education, and they are available for further guidance as needed.”

Just knowing they have resources available at Riley has been really helpful, Shelley agreed.

“It’s hard to do it alone,” she said. “Being able to talk about it really helps. I had heard of celiac, but I didn’t know all the hoops you had to jump through to provide a safe environment for your child.”

Oscar, who just completed seventh grade, stands 5-feet 6-inches tall and weighs 105 pounds. When he was diagnosed, he was 4-foot-4-inches. He hit puberty, which helped, his dad said, but he also gained 50 pounds and grew 14 inches in 3½ years.

That’s the kind of progress Dr. Sparks likes to see. With the right education, diet and support, celiac disease is manageable.

“I have always found it appealing that a chronic inflammatory disease that has such major effects on quality of life is treated by eliminating a single protein from the diet,” Dr. Sparks said. “Celiac disease is a great example of how food can be used as medicine.”

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

]]>
Riley Children’s Health expands in Carmel with additional pediatric emergency rooms at IU Health North Hospital https://www.rileychildrens.org/connections/riley-childrens-health-expands-in-carmel-with-additional-pediatric-emergency-rooms-at-iu-health-north-hospital-isr Fri, 24 May 2024 10:39:00 -0400 https://www.rileychildrens.org/connections/riley-childrens-health-expands-in-carmel-with-additional-pediatric-emergency-rooms-at-iu-health-north-hospital-isr Riley Children’s Health has expanded its pediatric emergency medicine presence in Carmel with new, dedicated space in the Indiana University Health North Hospital Emergency department. The new space adds eight pediatric patient rooms, along with support services space within the department to improve patient flow.

For several years, Riley Children’s emergency medicine doctors, nurses and child life specialists have provided care to pediatric patients in the IU Health North Hospital Emergency department. With an increase in the number of pediatric patients coming through the doors, an effort has been underway to expand the Emergency department to continue providing 24/7 pediatric emergency care for infants and children up to 18 years old.

"The expansion of our 24/7 Pediatric Emergency Medicine program into its own eight-bed department is paramount to the care of pediatric patients in Carmel and the surrounding communities,” said Dr. Dan Slubowski, medical director of IU Health North’s Emergency department. “This individualized pediatric care space allows our healthcare providers to see the growing number of pediatric patients seeking emergency care.”

A ribbon cutting was held on Thursday, May 23, to commemorate the opening of the new pediatric patient rooms. Riley emergency medicine doctors and nurses staff the IU Health North Hospital Emergency department 24 hours a day, seven days a week. In addition to emergency medicine, Riley Children’s Health at IU Health North offers outpatient, inpatient and pediatric surgery services.

]]>
Kuwait to Indiana: Patient with rare cancer finds treatment https://www.rileychildrens.org/connections/kuwait-to-indiana-patient-with-rare-cancer-finds-treatment Thu, 23 May 2024 16:15:00 -0400 https://www.rileychildrens.org/connections/kuwait-to-indiana-patient-with-rare-cancer-finds-treatment This 12-year-old patient is battling a rare type of cancer. He traveled from Kuwait to Indianapolis to receive care at Riley Children’s Health.

Abdulrahman Alazemi has pleural mesothelioma, which is far more common in adults than in kids.

He was receiving treatment in Kuwait, but his body wasn’t responding to those therapies.

The team at Riley brings together a team of specialists to provide the best care in complex cases like this one.

Abdulrahman has now been in Indianapolis for more than a year a year with his mom.

]]>
Patients “dance, dance, dance” in this therapy session https://www.rileychildrens.org/connections/patients-dance-dance-dance-in-this-therapy-session Thu, 23 May 2024 08:25:00 -0400 https://www.rileychildrens.org/connections/patients-dance-dance-dance-in-this-therapy-session By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

The girls are 6 and 13, both with cerebral palsy and both ready to rock it out in their wheelchairs at Riley Hospital for Children’s rehab gym on a Monday evening.

Riley outpatient occupational therapist Renee Callahan is leading a group therapy program on a trial basis that incorporates a passion of hers – dance.

Riley dance therapy session

Since December, she has been working with Micaiah Flory and Isabelle Jones weekly to put together a performance for parents and family on the last day of the program.

The goal is to combine music and dance in warmups, games and routines to improve visual motor skills, motor coordination, muscular endurance, strength and internal rhyming and timing, Callahan said.

Added benefits include improved self-expression, confidence and social-emotional skills.

“I have danced my whole life,” said Callahan, who developed a dance-fitness program for Special Olympics Indiana during her OT doctoral capstone. “It has been my goal to incorporate dance with my OT practice because dance has several physiological and psychological benefits.”

Doing it in a group setting is new within Riley rehab, she said, and it’s something she hopes to expand in the next session to more patients with an occupational and physical therapy plan of care. The program doesn’t replace traditional therapy; it complements it.

“It brings me joy to watch these children achieve their OT goals through the modality of dance,” Callahan said.

Isabelle and Micaiah didn’t know each other before the program started six months ago, but they’ve become fast friends during these Monday sessions.

“Nervous? Or excited,” an onlooker asks the girls before the show begins.

“Both,” says Isabelle, as she waits for her parents and grandmother to take their seats.

Meanwhile, Micaiah resists her dad’s attempt to fix her ponytail, ready to get her groove on as only she can.

The one-hour session begins with warmups set to a lively beat.

“We start with marches,” Callahan directs the girls. “Get those knees up. Now together, raise the roof, arms up!”

As one song ends, another begins, and the group moves into stretches.

“Look up, look down, to the side, switch. Shoulders up, down, alternate. Hands on hips, show me some sass, stretch to the side … “

Riley dance therapy session

As Callahan leads the class with a joyful energy that the girls match, the therapist takes time to help Micaiah follow along with her arm movements while the little girl bounces in her chair.

After warmups come games, also set to music, followed by the dance portion of the program.

To the beat of Taylor Swift’s “Shake It Off,” the girls incorporate several of the movements they practiced in warmups – rolling their shoulders, clapping, twisting, reaching high and low and freestyle.

Justin Timberlake’s “Can’t Stop the Feeling” sets the mood for more “dance, dance, dance” as the girls move to the beat, stretching and giggling throughout.

The cool-down taps into some of those same muscles, from their heads to their toes, this time to the tune of “Love Story,” by Swift.

Philip Flory said he learned the dance and exercise movements himself early on in the sessions just to get his daughter engaged in the program, but Micaiah has come a long way.

“I’ve seen an improvement in her strength and coordination but also just in her ability to participate and work with another child, to stretch out and have some fun,” he said. “Also, Isabelle has been there to encourage her and help her out.”

While this session has come to an end, Callahan said the goal is to get more kids and more therapists involved and to expand to a larger open space.

“I’ve seen a lot of improvement with these two, and it’s been a lot of fun,” she said. “I hope this provides an opportunity for kids with motor challenges to be involved in a dance movement-based class and also help with the socialization aspect and achieve their therapy goals, too.”

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

]]>
A Spoken History of the Past 100 Years https://www.rileychildrens.org/connections/spoken-history-past-100-years Wed, 22 May 2024 10:46:00 -0400 https://www.rileychildrens.org/connections/spoken-history-past-100-years ]]> Daisy winner has a big heart for kids https://www.rileychildrens.org/connections/daisy-winner-has-a-big-heart-for-kids Tue, 21 May 2024 15:16:00 -0400 https://www.rileychildrens.org/connections/daisy-winner-has-a-big-heart-for-kids By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Chris Boyd is a big kid at heart, his mom says. So, working with kids comes naturally.

Boyd, a registered nurse on 8E at Riley Hospital for Children, recently earned a Daisy Award for his compassionate care of children on the medical-surgical unit.

The nominator, a nurse herself at IU Health Frankfort Hospital, saw how Boyd cared for her 6-year-old son during a recent hospitalization and was moved to nominate the nurse for the award.

“Although all nursing staff were excellent during our stay, there was one that really stood out to us,” Melissa Douglass said.

“Chris took care of Grayson most of the nights during our stay. Immediately, Chris took note that Grayson loved dinosaurs, and they quickly bonded over a discussion of their favorite dinosaurs.”

Chris Boyd Daisy Award

Grayson was admitted to Riley for treatment of eye periorbital cellulitis, an acute infection of the tissues surrounding the eye. Part of the treatment involved twice-daily nasal sprays and irrigation. The irrigations frightened her son, Douglass said, but they had to be done.

“Chris was the most patient with Grayson and gave him the time necessary to accept it was going to be done.”

Boyd, who joined the Riley nursing team in July 2022 after earning his nursing degree and working as a tech with adult patients in Lafayette, remembers young Grayson.

“Nasal irrigations twice a day, that’s not fun,” he said. “I wouldn’t want to do it. But I gave him the time he needed to be ready emotionally, physically and mentally.”

Even if that meant sitting on his knees on a hard floor for long stretches while Grayson worked up his courage.

“I didn’t want to break his trust by making him do it before he was ready. If you break that trust with a patient, it’s over. It’s hard to get it back,” Boyd said. “My dad always taught me that trust is earned in drops but lost in buckets.”

Chris Boyd Daisy Award

Bryan and Christie Boyd couldn’t be prouder of their son. They were so pleased that he was being recognized that they joined his girlfriend, Breanna Casada, for photos before his night shift on Monday.

“It didn’t surprise me at all when he chose nursing,” Bryan Boyd said. “I figured he’d either be a special education teacher or a nurse. Growing up, he always looked out for the underdog; he cared about every kid.”

Chris Boyd Daisy Award

The Daisy recognition gives Boyd a boost of confidence, which is why his mom is grateful to Douglass for nominating him.

“That was very kind of her to do that for him.”

For his part, Boyd said he is still learning and growing as a nurse, sometimes wondering if he is doing a good job.

“Sometimes I feel like I ask too many questions, but my team is very supportive of each other,” he said. “They are always there to build me up, answer questions and provide support. I couldn’t have asked for a better unit to work on. I love my co-workers on 8 East.”

As far as Douglass is concerned, Boyd has what it takes to be an excellent nurse.

“The patience, empathy and compassion he exhibited was outstanding. Chris was able to help and support my son but was also there to calm and support my husband and I during this stressful time.”

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

]]>
She’s come a long way, baby https://www.rileychildrens.org/connections/shes-come-a-long-way-baby Mon, 20 May 2024 15:11:00 -0400 https://www.rileychildrens.org/connections/shes-come-a-long-way-baby By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Eight-year-old Caroline Durcholz loves nothing better than riding the Howler roller coaster at Holiday World & Splashin’ Safari, a family amusement park that sits practically in her backyard in southern Indiana.

“It is her favorite place in the whole world,” said mom Tracy Durcholz.

Caroline Durcholz

And it’s a world away from the CVICU at Riley Hospital for Children, where Caroline spent the better part of a year before her first birthday.

Born with congenital heart disease, including tetralogy of Fallot and ventricular septal defects, Caroline underwent multiple heart surgeries and procedures and had a stint on ECMO as a baby. In all, she has had at least 20 hospital admissions at Riley.

Caroline Durcholz

Dr. Mark Rodefeld was her surgeon, and Dr. Jyoti Patel is her cardiologist.

Today, the younger of Mark and Tracy Durcholz’ two daughters is wrapping up second grade and looking forward to a summer of fun with friends and family.

That means more trips to Holiday World, the library and the roller-skating rink, as well as devoting time to 4-H projects and practicing piano.

On June 22, she will join her sister, parents and grandparents for the ninth annual Riley Pediatric Critical Care Walk-a-Thon, a fundraiser for Riley Children’s Foundation to support critical care initiatives and research at the hospital.

Caroline Durcholz

The event is part celebration, part reunion and part memorial – a chance for patients and families to come together outside the hospital to see doctors, nurses, therapists and other team members who’ve had a hand in their care. It’s also an opportunity to remember and honor patients who passed away in the previous year.

“Caroline was so little then, so she doesn’t remember that time, but I talk to her about it. We as parents remember what happened. We know what she went through,” Tracy Durcholz said.

That’s why the family has made the trip to Indianapolis for the walk several times in the past seven years.

“Last year, we saw Dr. (Mouhammed) Yabrodi, and he remembered her. We saw a couple nurses who were really close to us.”

Caroline, who returns to Riley four times a year to follow up with cardiology and pulmonology, is doing exceptionally well today, despite her rough start, her mom said.

She recently “graduated” from the pulmonary hypertension team and no longer requires supplementary oxygen at night. She continues speech therapy and has made big gains in her daily feeds, taking 75% of her food by mouth.

Next month’s event includes a 5K walk, games, face-painting and treats. Emergency response vehicles will also be onsite for kids to explore.

Register for the event or set up a fundraising page here.

]]>
One of Midwest’s largest aerodigestive programs uses advanced therapies to treat complex patients https://www.rileychildrens.org/connections/one-of-midwests-largest-aerodigestive-programs-uses-advanced-therapies-to-treat-complex-patients Thu, 16 May 2024 15:44:00 -0400 https://www.rileychildrens.org/connections/one-of-midwests-largest-aerodigestive-programs-uses-advanced-therapies-to-treat-complex-patients A commitment to using clinical expertise and advanced therapies to treat challenging conditions extends to a growing Aerodigestive Program at Riley Children’s that is now one of the largest in the Midwest. The program is led by pediatric gastroenterologist Ryan Pitman, MD, MSC, and Heather Muston, MD, a pediatric pulmonologist, at Riley Children’s. The two assumed leadership of the program in 2019, shortly after completing their respective fellowships.

“Because there’s so much interplay among medical specialties in diagnosing and treating conditions of the aerodigestive tract, having patients see multiple specialists separately is a less efficient and less patient-centric approach to care,” said Dr. Muston. “The goal of our multidisciplinary model, which we’ve purposefully designed to be more of a medical home, is to bring a more cohesive and comprehensive clinical strategy to managing these complex patients.”

In addition to pulmonology and gastroenterology specialists, the Aerodigestive Program at Riley Children’s is supported by pediatric otolaryngology, speech language pathology and professionals in nutrition and social work. New patients meet with all specialists on the first visit to develop a personalized treatment plan, with follow-up based on each patient’s needs.

Advanced technologies, including EndoFLIP

The aerodigestive team at Riley Children’s is one of the few using EndoFLIP to measure the distensibility of the esophagus to determine the cause of dysphagia. In cases in which blood vessels are pushing on the esophagus, EndoFLIP is also used to assess the extent of the collapse. The program team is also using other advanced investigation techniques, including flexible bronchoscopy with BAL and TNE.

“We have an increasing population of kids with EOE in our aerodigestive program, so we anticipate starting to use TNE more routinely in our clinic to monitor prescribed therapies and evaluate the effectiveness of treatments,” Dr. Pitman said.

Clinical research underway

In addition to managing more than 380 clinic visits in 2022—up from just 88 in 2018—aerodigestive program specialists are conducting some breakthrough clinical research. Areas of study include safety and outcomes in interarytenoid injections, head imaging in children with swallowing problems, and the use of acid blocker medicines in pediatric patients with dysphagia. A research project with a pediatric resident at Riley Children’s is examining developmental markers as a way of predicting improvement in dysphagia.

“From an anatomic perspective, we haven’t come up with a good way to predict when swallowing may improve,” Dr. Pitman said. “So we're working with developmental medicine specialists at Riley to investigate developmental factors that may predict improvement in swallowing. Findings will inform our treatment plans and help us give parents a sense of what to expect moving forward.”

The Aerodigestive Program at Riley Children’s provides multispecialty care for children with airway, lung, feeding and upper digestive tract disorders.

]]>
Building a reputation for pediatric urology excellence https://www.rileychildrens.org/connections/building-a-reputation-for-pediatric-urology-excellence Thu, 16 May 2024 09:03:00 -0400 https://www.rileychildrens.org/connections/building-a-reputation-for-pediatric-urology-excellence About pediatric urology at Riley Children's

Skilled in open, endoscopic, and robotic urologic surgery – Riley Urology provides exceptional care across all nuances of pediatric urology. With a commitment to offering the best care possible and attracting the best and brightest talent, Riley Urology is among the nation’s foremost leaders in pediatric urology.

Learn more about our program.

]]>
Retro Riley: Baxter family’s contributions to Riley Hospital https://www.rileychildrens.org/connections/retro-riley-baxter-familys-contributions-to-riley-hospital Thu, 16 May 2024 08:15:00 -0400 https://www.rileychildrens.org/connections/retro-riley-baxter-familys-contributions-to-riley-hospital The Baxter family name is one to be remembered when recounting the history of Riley Hospital for Children. Arthur Reyburn Baxter (1876-1957) dominated Indianapolis industrial and civic life for more than 50 years. An early leader of the Riley Memorial Association (now the Riley Children’s Foundation), he served on the Joint Executive Committee, the Association Board, and was named the first Life Governor of the association. Among the many businesses that Baxter owned was the Keyless Lock Co. that he bought from his uncle, Arthur Jordan. Baxter gave of his time and leadership before and after he retired in 1942.

In early 1926, he was invited to serve on the Riley Memorial Association’s Joint Executive Committee to take the place of William Conrad Bobbs, an Incorporator for the association, after Bobbs passed away a few months earlier. Baxter’s love for children and Riley Hospital from its very early years would become a lifelong commitment that would carry on through his family. He headed the Rotary Club fund for erection of the Rotary Building as a convalescent wing of the hospital and served as chairman of the finance committee of the association.

Baxter Family Retro Riley

The Arthur Baxter YMCA on Shelby Street in Indianapolis is named in his honor; a gift from the Baxter Foundation helped pay off the loan for the building. But one timely gift from the Baxter Foundation to Riley Hospital for Children was transformative. Frances Doyle Baxter was still the matriarch of the Baxter family when only months before she died in 1964, the Baxter Foundation announced a $500,000 gift to the association to construct a “mother’s pavilion” to allow mothers to stay at the hospital to provide care for their children. The Baxter Foundation would go on to make grants during the 1960s totaling $1.5 million for the construction of a new five-story hospital addition, the Frances D. Baxter Memorial Wing, which opened in 1971.

Baxter Family Retro Riley

Before the Baxter Parent Care Pavilion opened, children who were admitted to Riley Hospital had special visitation hours for parents twice a day. The 12-room pavilion helped families adjust and hospital physicians to see the worth of having patients go there before going home. “Riley Hospital’s Parent Care Unit was one of the first such units in the country and probably one of the most widely known,” said Karen Jennings Radar, RN, the unit’s first director. “It served as a model to other hospitals in the United States and Canada.”

Baxter Family Retro Riley

“The Baxter Parent Care Pavilion represented the cornerstone to Riley Hospital’s commitment to the practice of family-centered care,” said Bob Baxter, grandson of Arthur and Frances Baxter, who carried on the Baxter family legacy of leadership by serving as a member of the Riley Association’s board (1971-1991) and as executive director and president of the association from 1991-1996. During his time in leadership, he was responsible for developing more than 20 endowed chairs, professorships and educational endowments for Riley Hospital. Like his grandfather, Bob Baxter was named a Life Governor of the Riley Children’s Foundation for his longtime service and contributions. Soon after he joined the association, he enlisted the services of builders able to help upgrade and expand the Camp Riley facilities. After retiring in 1996, he signed up to be a Riley Hospital volunteer and went to work building his Magic Castle Cart for Riley Hospital patients and families. The Magic Castle Cart, a mobile toy cart, has flourished for over 25 years.

--Compiled by the Riley Hospital Historic Preservation Society; photos provided by IUPUI University Library Special Collections and Archives, Riley social media and the Baxter family

]]>
Riley cardiology patient to throw out the first pitch at Indianapolis Indians game https://www.rileychildrens.org/connections/riley-cardiology-patient-to-throw-out-the-first-pitch-at-indianapolis-indians-game Wed, 15 May 2024 12:54:00 -0400 https://www.rileychildrens.org/connections/riley-cardiology-patient-to-throw-out-the-first-pitch-at-indianapolis-indians-game Addy Czarnecki feared she’d have to give up the sport she loves due to her health. Then, the Riley Children’s Health cardiology team stepped in to help.

Addy experienced prolonged episodes where she’d feel her heart speed up dramatically. She would struggle to breathe and couldn’t feel her extremities. These symptoms impacted her ability to swim – the sport she’s participated in since she was 8 years old.

Eventually, she was referred to the Riley cardiology team. Her doctor diagnosed her with SVT, a condition that causes a sudden irregular heartbeat.

Addy underwent two ablations to address the issues with her heart.

Now, she’s back to swimming. Addy says she’s improved significantly since feeling healthy. She’s even committed to swimming for Ball State University.

This weekend, she will represent Riley at the Indianapolis Indians game by throwing up the first pitch!

]]>
Surgery gets high school athlete back in the game https://www.rileychildrens.org/connections/surgery-gets-high-school-athlete-back-in-the-game Wed, 15 May 2024 10:34:00 -0400 https://www.rileychildrens.org/connections/surgery-gets-high-school-athlete-back-in-the-game By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

It was during a raucous game in the weeks before Christmas when suddenly a hush grew over the crowd and a gymnasium full of basketball fans stopped to pray.

They had just watched as a talented junior on Greenwood Christian Academy’s team went up to block a shot and came crashing down, landing awkwardly on his left ankle.

“It was pretty traumatic,” said Carrie McIntire of her son Evan’s injury. “He dislocated it and fractured his fibula in three places.”

Billed as a “Silent Night” game between two rival private schools in anticipation of the holidays and winter break, it got quiet pretty quickly, McIntire recalled.

“Everyone sat silently and prayed.”

Evan, meanwhile, was feeling pain like never before. But he felt something else, he said, as he lay on the court, surrounded by concerned coaches and teammates -- a sort of calm emanating from those prayers.

Evan McIntire

The teen had just scored 15 points in the second half of the Dec. 7 game against Covenant Christian High School. Only a minute was left on the clock when he went down. It was a season-ending injury, his parents thought.

“Evan is probably the toughest kid you’ll ever meet, but he was in excruciating pain,” his mom said.

EMTs arrived, started an IV on the basketball court and told Mark and Carrie McIntire that the ambulance could take their son to one of three hospitals. The anxious parents chose Riley Hospital for Children.

When Riley orthopedic surgeon Dr. Erika Daley saw Evan’s twisted ankle, she also saw the fear in his parents’ eyes.

“Evan had a very serious ankle injury, one of the worst I’ve seen in my career,” Dr. Daley said. “He broke his fibula bone in several places and also injured the syndesmosis, which is the stabilizing ligaments of the ankle joint. Without surgery, he would have had an unstable ankle and been at high risk to develop arthritis in the future.”

As Evan was being wheeled into surgery the next day, Dr. Daley helped calm the athlete’s parents, siblings and grandparents, all of whom had gathered at the hospital.

Evan McIntire

“She was amazing and reassuring,” Carrie McIntire said. “I didn’t want to ask the question if he would ever play basketball again. When you have that traumatic of an event, you don’t know. I think she could tell that it was weighing on our hearts, and she said he would be able to play again.”

But it would take time, she told them. And lots of hard work.

“From the moment I met Evan on the morning of his surgery, I could tell he was determined,” Dr. Daley said. “He has dreams of playing college basketball, and he made it clear that this injury would not deter that.”

In true Evan fashion, his mom said, he was back in the gym the day after surgery. Not playing, of course, but sitting at the end of the bench, supporting his teammates. There he would remain for the next three months while he rehabbed – six weeks non-weight-bearing and six weeks of intense PT.

His doctor expected him to be ready for his AAU travel basketball schedule in April, but Evan surprised everyone – except himself – by being fully cleared by his doctors and physical therapist to return to his school team to finish the season in February with wins in sectionals and regionals. After missing 17 games, he went on to score 17 points in his first game back.

Evan McIntire

“When he came back, he got a standing ovation from the crowd,” his mom said. “It was pretty cool.”

Evan, soft-spoken and humble, is a little embarrassed by the attention, even today, as he poses for photos on his school’s court. He credits his faith and the community around him for helping him persevere.

Evan McIntire

He is driven, his doctor and coach said.

“We discussed that the time frame to return from an injury like this would be around three to six months,” Dr. Daley said, with PT starting at the six-week mark. “He came to his six-week post-op appointment with a PT appointment booked for the following morning. As soon as I gave him the all-clear, he was ready to start the hard work of getting his strength and motion back. He pushed himself hard every week in PT.”

Greenwood Christian coach Jackson Williams was watching the same progress off the court.

Evan McIntire

When the injury occurred, Williams said, he was most concerned about whether Evan would be able to get back to normal activities again.

“I wasn’t even thinking about sports at the start,” he said.

But he saw how hard Evan was working, saw how he came to games to cheer on his teammates and knew they couldn’t count him out.

“We talk about having a team-first mentality, worrying about the whole more than just ourselves,” Williams said as he watched Evan on the court after school this week. “It was special to see him work and stay committed to getting healthy so he could get back on the court to play with his teammates.”

When he returned to see Dr. Daley six weeks after starting PT three times weekly, in addition to working with his school trainer, he showed her videos on his phone of his progress, including jumping and lunging.

“I had no choice but to clear him to get back to basketball, just in time for playoffs,” she said. “For the severity of his injury and his high level of play, I never would have expected that he could have gotten back to that level three months from the injury.”

The result, she said, “speaks to his commitment and determination, his dedication to his team, his supportive family and the team of medical professionals that took care of him, particularly his physical therapist.”

Evan McIntire

Evan shows no hint of his injury, except for the spectacular scar on his left ankle, fortified with plates and screws and a TightRope system that anchors the ends of the tibia and fibula together.

He is back to playing AAU basketball and will return to the football field this fall before moving into his last high school basketball season.

He is grateful to his family, his teammates and friends and to the Riley team who cared for him, he said.

“It was a long night, but the surgery went well, and Dr. Daley has been great the whole time. She was super supportive.”

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

]]>
After a year at Riley, Adriel gets a heart transplant https://www.rileychildrens.org/connections/after-a-year-at-riley-adriel-gets-a-heart-transplant Mon, 13 May 2024 16:31:00 -0400 https://www.rileychildrens.org/connections/after-a-year-at-riley-adriel-gets-a-heart-transplant By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

For a year, Adriel Hernandez lived at Riley Hospital for Children. But when it came time to go home last week, the 3-year-old wasn’t too sure he was ready.

The nurses and therapists on the Heart Center had become his family, even though one or both of his parents spent most every day with him.

Adriel Hernandez heart transplant

Adriel, born with a serious heart defect, had previously undergone surgery to repair one of his ventricles, but his heart function declined over time, and he was admitted to Riley in May 2023 to wait for a heart transplant.

During that time, he had an important sidekick that he named JJ. It went everywhere with him. JJ was his Berlin Heart, a pump that helps maintain blood flow in patients with heart failure.

Adriel and JJ settled into a routine at Riley. They walked the halls frequently, the precocious toddler often wearing his “Woody” hat and clutching his plastic Gekko.

Adriel Hernandez heart transplant

He flirted with the nurses, played with his toy cars and entertained everyone he met.

It was just after midnight April 15, 11 months into their stay, when Glenda Hernandez answered her cellphone at home. It was a transplant coordinator delivering the news she had prayed about for months. The team had accepted a donor heart for her son.

“I sat up and grabbed my husband’s leg,” she said. “Oh my God, this is it!”

Dr. Mark Turrentine transplanted that hero heart, that lifesaving gift, into Adriel later that same day, but it didn’t seem to take right away, his mom said.

“It was a lot of waiting for him to stabilize. It was scary.”

She couldn’t help but wonder if they had done the right thing by agreeing to transplant.

“He had made such a connection with his Berlin, and I had to tell him it was going bye-bye. It’s hard to tell a 3-year-old they are getting a new heart. I don’t think he understands the concept.”

It took about a week post-transplant, but Adriel and his new heart seemed to reach an understanding, and he turned the corner.

“That’s Adriel, he just shows us he’s a warrior,” Glenda Hernandez said.

Adriel Hernandez heart transplant

On May 5, just days shy of a year since he was admitted, Adriel said goodbye to his Riley team, leaving the hospital with his new heart and his grateful, if somewhat anxious, parents.

“It’s like taking a newborn home,” his mom said, wondering how her little boy would assimilate back into their Indianapolis household with two older siblings.

“He will adapt, but sharing and not always getting his way might be a challenge.”

Sure enough, just a week after coming home, Adriel is flourishing. He is soaking up the sun, enjoying the fresh air and getting used to life outside the hospital.

Adriel Hernandez heart transplant

As with many parents of pediatric heart transplant recipients, Glenda and her husband, Josue, struggle to find the words to convey what the gift means to them.

“I’ve prayed throughout this because I knew what it would mean for Adriel to receive a heart,” Glenda said. “I prayed that whoever would give Adriel this heart that they had a happy life. I know the decision the family made wasn’t easy, but I hope that one day they can just see a happy, smiling Adriel and know it was worth it.”

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

]]>
A renowned Riley Children's Health specialist earns pediatric urology’s most respected honor https://www.rileychildrens.org/connections/a-renowned-riley-childrens-health-specialist-earns-pediatric-urologys-most-respected-honor Mon, 13 May 2024 16:20:00 -0400 https://www.rileychildrens.org/connections/a-renowned-riley-childrens-health-specialist-earns-pediatric-urologys-most-respected-honor Richard Rink, MD, pediatric urologist at Riley Children’s Health, is distinguished for his long-time contributions to pediatric urology. Recently earning the American Academy of Pediatrics Medal in Urology, he is the 38th recipient in the nation to earn the specialty’s most prestigious honor.

“His energy, precision and quest for perfection are inspiring,” Rosalia Misseri, MD said, division chief of pediatric urology at Riley Children’s. “His passion goes beyond the surgery to thinking about the child and what we can we do to get this child to be as healthy and functionally normal as we can.”

Dr. Rink received his medical degree from the Indiana University School of Medicine and has been with pediatric urology at Riley Children’s since 1985, having served as the division chief from 1989-2012. To date, he has been one of the most respected pediatric urologic surgeons worldwide, with over 300 publications and 50 book chapters to fine-tune the principles of pediatric reconstructive urology surgery. Additionally, Dr. Rink has performed over 850 bladder augmentations in children, where he initiated long-term follow ups to better define those procedures.

“Dr. Rink has taught by example—he is constantly reassessing his technique, outcomes and approaches,” Benjamin Whittam, MD, MS said, pediatric urologist at Riley Children’s. “His approach to leadership has created a division where we step up and help our partners—who are world leaders in their own special niches—to provide Hoosier children exceptional care across all nuances of pediatric urologic care.”

Even more, Dr. Rink is an acclaimed educational leader who founded IU School of Medicine’s Pediatric Urology Fellowship Program, training 25 pediatric urology fellows–nine of whom have served as leaders at their respective institutions–during his tenure as division chief. Today, he actively presents at national and international conferences to further that urologic education to specialists globally.

“He’s technically very, very gifted in a way you don’t see often. He’s mentored many faculty, as well as residents and fellows,” Michael Koch, MD said, chair of the department of urology at IU School of Medicine. Often, aspiring urologists will choose the fellowship program at Riley Children’s simply because of Dr. Rink’s prowess and reputation, Dr. Koch added.

Most importantly, Dr. Rink is responsible for developing the pediatric urology program at Riley Children’s from the ground up, where he has helped it grow from a single urologist to the current eight surgeons and six advanced practice nurses on staff. Presently, experts in the program are trained in robotic surgery, pediatric stone disease, transitional care, gender health and more, and the team is recognized worldwide for its outstanding work in pediatric urology overall.

“I set out to get the best possible talent in the United States to Riley Children’s,” Dr. Rink said. “And we have that.”

“There’s not a pediatric urologist in the world who doesn’t know what Riley Children’s is,” Dr. Misseri added. “That is all because of Dr. Rink.”

About Pediatric Urology at Riley Children’s

Alongside Dr. Rink, the team of pediatric urologists at Riley Children’s are experts in treating patients with complex urologic conditions. Key program distinctions include:

  • One of seven Congenital Adrenal Hyperplasia (CAH) Comprehensive Care Centers in the U.S. (designated by the CARES Foundation)
  • One of 10 bladder exstrophy centers of excellence in the nation (designated by the Association for the Bladder Exstrophy Community)
  • One of the few Midwest facilities to offer pediatric robotic surgery
  • Founding member of the Pediatric Urology Midwest Alliance, a group of leading pediatric urology programs advancing surgical outcomes and care for bladder exstrophy patients

To learn more about pediatric urology, read the annual report.

]]>
CVICU team creates scholarship in honor of nurse who passed away https://www.rileychildrens.org/connections/cvicu-team-creates-scholarship-in-honor-of-nurse-who-passed-away Sun, 12 May 2024 15:39:00 -0400 https://www.rileychildrens.org/connections/cvicu-team-creates-scholarship-in-honor-of-nurse-who-passed-away During Nurses Week, the Riley cardiovascular intensive care unit team found a way to honor a colleague who died suddenly in December.

They established the Jessica Stoebick Scholarship and awarded it to the first recipient during the Nurses Week Ceremony.

CVICU co-manager Melissa Keesling shared some touching words and the room full of nurses gave the recipient a standing ovation.

Watch below to hear more about what Jessica meant to the CVICU and why helping those pursuing their nursing education was an important cause for her.

]]>
CVICU nurse wins Margaret Martin Award https://www.rileychildrens.org/connections/cvicu-nurse-wins-margaret-martin-award Thu, 09 May 2024 12:14:00 -0400 https://www.rileychildrens.org/connections/cvicu-nurse-wins-margaret-martin-award By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Connie Neuzerling had no clue that her husband, Gary, was seated in the back of the auditorium Tuesday during the annual Riley Children’s Health Nurses Week awards ceremony, but he was there for a good reason.

For the second time in just a few years, Neuzerling was honored with the prestigious Margaret Martin-Roth Award. Her husband had been tipped off ahead of time so he could be there to celebrate with her.

“I was not expecting this,” the longtime CVICU nurse said as she juggled a plaque and glass sculpture while being congratulated by colleagues.

“When you think about all the nurses here at Riley who are awesome, I’m humbled that I would be selected. There are so many other very deserving folks who immediately come to mind.”

Connie Neuzerling

Others nominated were: Alyssa Hall, PICU; Audrey Leisinger, Pediatric Oncology; Ashley Lineback, Emergency Department; Susan Little, Maternity Tower; Julie Parks, 5 West; Angela Seitz, Outpatient Burn Clinic; Amy Spenner, Fetal Center; and Melissa Young, Pediatric Urology.

This year’s experience was a little different from Neuzerling’s first win in 2021. That awards program was a virtual affair due to the pandemic, so she watched it on a computer screen on her unit. Being surrounded in person by team members from around the hospital this week was even more special.

The Margaret Martin-Roth Award is presented annually in honor of a trailblazer at Riley. Margaret Martin, who married late in life and died last year at the age of 102, arrived at Riley in 1965, joining Dr. Morris Green in his quest to transform pediatric care.

She served as director of nursing from 1974 to 1985 and was named Indiana Nurse of the Year in 1980.

“Margaret had a passion and deep understanding of the importance of empowered families participating in every aspect of their child’s care,” said Marilyn Cox, former chief nursing officer and senior vice president for nursing and patient care services. “She listened, she cared, she asked her nurses to take chances and to innovate in their patient care best practices.”

Her example is a lot to live up to, but the nomination for Neuzerling sings her praises. Following are excerpts:

“Connie is unique because she provides excellent patient care at the bedside and is a vital resource for her co-workers, with a wealth of knowledge to share. Furthermore, she has taken on the Heart Center’s VAD (Ventricular Assist Device) coordinator role. In this role, she spearheads VAD education/simulations for Heart Center nurses, organizes re-education and quarterly recertification events, and is a resource for nurses caring for VAD patients during each shift. Her presence and knowledge are comforting and reassuring to nurses in that role.

“Outside of rounds, she provides nursing and parent education about sterile dressing changes, VAD care and transportation off the unit with a VAD. … The tireless effort she puts into providing patient-centered care improves outcomes.”

Neuzerling, who said she joined the Riley team as a “baby nurse, a new grad” 37 years ago, started in the PICU before transitioning to CVICU.

“My preceptor was a cardiac nurse, so I developed a love for those babies as well,” she said. “That patient population has always been very special to me.”

Neuzerling, who became a first-time grandmother May 1, also leads the CVICU’s Professional Practice Committee and performs harm audits to improve quality initiatives on the unit.

Asked what she loves most about her job, she doesn’t hesitate.

“The people – the team, the kids, the families. It’s not really a job, it’s a calling.”

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

]]>
Spotlight shines on nurses during awards ceremony https://www.rileychildrens.org/connections/spotlight-shines-on-nurses-during-awards-ceremony Tue, 07 May 2024 16:53:00 -0400 https://www.rileychildrens.org/connections/spotlight-shines-on-nurses-during-awards-ceremony By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

It was a full house in the Ruth Lilly auditorium this morning as Riley Children’s Health nurses were recognized and celebrated during National Nurses Week.

The awards ceremony was all about shining a light on nurses and the work they do to care for patients, families and each other.

“I am humbled and excited to be here today to celebrate you and all the work you’ve been doing for the past year,” said Megan Isley, chief nursing officer, in her opening remarks. “We have had team successes, we’ve had individual successes, and we’ve had patient successes. We have so much to celebrate.”

Nominees and winners in several categories received recognition from their peers and leadership during the ceremony. Among them:

Daisy Nurse Leader Award: Sara Murff, 8 West.

nurses week

Other nominees: Amy Bales, SFT NICU; Nicole Blanford, Fort Wayne Clinic; Julie Christianson, IUHP Riley Nephrology; Jen Engelmann, Acute Care; Kathleen Head, 5 West; Ronin St. James, PICU; Jessy Henderson, CVICU; Tyler Hostetler, ED; Kelly Marvel, Maternity; Maggie Mohr, Maternity Tower NICU; Paul Plowman, Burn Unit; Lacy Vaughn, PICU and associate administrator; Ashlee White, North Peds/PICU.

According to the nomination from fellow nurses, Murff was selected for her “continued dedication, leadership, resilience and compassion. She is the glue that keeps our unit together.”

Daisy Team Award: Emergency Department.

nurses week

Other nominees: 7 West Nursing Team, Riley Associate Administrators, Burn Unit, Fetal Center, High-Risk OB Team, Riley NICU Nursing Professional Development Specialist, Riley North NICU Professional Practice Council, Riley Inpatient Pediatric Rehab Team, Riley Magnet Redesignation Support team, SFT NICU Team, SFT NICU Bereavement Council, Riley Vascular Access Team.

Brittany Gaskins Award: Grace Roembke, Emergency Department.

nurses week 2024

Other nominees: Katie Klemple, Labor and Delivery; Jeannette Hintz, ED; Hailey Fanucchi, SFT NICU; Kelsey Martin, North Peds/PICU; Cass McCoige, PICU; Madison Jones, Labor and Delivery; Hannah McCormick, Mother-Baby. (The award is given in memory of an interventional radiology nurse to a nurse with less than 18 months’ experience.)

Stephanie Pottenger Award: Ashley Parker, 3 West Cardiac Stepdown.

nurses week 2024

Other nominees: Courtney Worland, Cardiac Cath Lab; Sarah Kuntz, Cardiac Cath Lab; and Katherine Keesling, 3 West Cardiac Stepdown. (The Heart Center nursing award for professional development is presented annually in memory of a beloved nurse on the unit who passed away from cancer in 2020.

Coach Award: Carly Cason, 5 West.

nurses week 2024

Other nominees: Kayla Beckett, Burn Unit; Nikki Boggess, ED; Kasey Boyle, ED; Kaylee Consolo, 8 East; Elizabeth D’Alfonso-Hill, PICU; Jordanne Devney, SFT NICU; Zoe Edwards, Pre-Op/PACU; Rachel Gibbons, PICU; Payton Hicks, PICU; Molly Krueger, RMT NICU; Kristin Lewis, ED; Kira Logsdon, Burn Unit; Danielle Mullaney, OB ICU; Kimberly Nash, Burn Unit; Ellen Phegley, 8 West; Kristin Pothier, Burn Unit; Alex Power, SFT NICU; Rusti Ray, North Peds/PICU; Shakiyla Rogers, PICU; Maria Ross Frenzel, PICU; Ellie Russell Adams, SFT NICU; Carli Shepherd, 9 East; Christine Slamkowski, PICU; Gracie Spesard, PICU; Katelynn Stacy, Burn Unit; Patricia Stanifer, Nursing Professional Development; April Stucky, Mother-Baby; Kasey Wilken, ED.

Partner in Care Award: Jaime Redkey, Infection Prevention.

nurses week

Other nominees: Paula Armas, Pediatric Inpatient Rehab; Nancy Attebury, Burn Unit; Katie Carter, ED; Brenda Cento, 3 West; Macenzie Cochran, PICU; Laleska Cruz, North Peds/PICU; Hannah Green, OB ICU; Nichole Haeg, Pharmacy; Betsy Johns, ED; Emily Koehn, 5 West; Chris Lindley, Riley Fetal Center; Dr. Lee Murphy, CVICU-PICU physician; Maddie Rodriguez, Child Life; Keeley Salvas, ED; Jaclyn Smith, Respiratory Care Services; Hettie Smith, 9 West; Christine Spencer, Riley Maternity; Mary Sunday, SFT NICU; Donna Talley, Labor and Delivery; Troy Tinsley, Supply Chain; Jacqueline Whitney, 3 West.

Nurse Excellence Award: Carol Hayden, 5 West.

nurses week 2024

“Our nominee started on our unit as a student nurse, and I have watched her grow immensely in her time at Riley,” the nomination letter for Hayden read. “She is our unit NPR representative, coach and over the past year has become a charge nurse on our unit. In addition to these roles, she is also a nursing practice advocate for 5W/5EA.

“The biggest area that she shines in is how well she cares for her patients. You can see the trusting relationship that she creates with them … (she) is a true light for them in the darkest time of their lives.”

Other nominees: Kristin Austin, ED/PACU; Amy Fries, PICU; Rachael Harless, 5 West; Melissa Hollar, Fetal Center; Audrey Leisinger, Pediatric Oncology; Susan Little, Maternity; Paul Plowman, Burn Unit; Kailey Potts, ED; Jenny Price, 9 West.

Margaret Martin-Roth Award: Connie Neuzerling, CVICU.

nurses week 2024

Neuzerling, a two-time winner, is described in the letter nominating her as “incredibly dynamic and involved in patient care in so many ways.”

“She provides excellent patient care at the bedside and is a vital resource for her co-workers, with a wealth of knowledge to share. Connie has dedicated 38 years to Riley. She started in the PICU and later transitioned to the CVICU. Outside direct patient care, she leads the CVICU’s Professional Practice Committee.” (Read more about her in a story later this week.)

Other nominees: Alyssa Hall, PICU; Audrey Leisinger, Pediatric Oncology; Ashley Lineback, ED; Susan Little, Maternity; Julie Parks, 5 West; Angela Seitz, Outpatient Burn Clinic; Amy Spenner, Fetal Center; Melissa Young, Pediatric Urology.

nurses week 2024

Riley Children’s Foundation grants were awarded to Tiffany Brown, Madelyn Pittard, Kailey Potts, Kirsten Reid, Sarah Rhoads and Courtney Worland.

nurses week 2024

A special nursing scholarship award on behalf of the CVICU was presented to the son of former nurse Jessica Stoebick, who passed away in December. Keaton Crockett is a nursing student who is set to graduate this year.

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

]]>
Pediatric pulmonologist earns national acclaim https://www.rileychildrens.org/connections/pediatric-pulmonologist-earns-national-acclaim Tue, 07 May 2024 10:03:00 -0400 https://www.rileychildrens.org/connections/pediatric-pulmonologist-earns-national-acclaim Benjamin Gaston, MD, pediatric pulmonologist at Riley Children’s Health, is among one of few to be inducted into the Association of American Physicians (AAP) in 2024. The AAP, a prestigious society comprised of leading physician-scientists who make impactful contributions to improve health, recognizes Dr. Gaston for his trailblazing work in pediatric pulmonology.

Founded in 1885, the AAP seeks to inspire research, medical knowledge, advancement and discovery, as well as build a community of physician-scientists who are dedicated to improving patient care. With only 70 nominees per year, the AAP involves only the best medical innovators in their fields.

"Election as a member of the AAP is a milestone achievement in the career of a physician-scientist," executive associate dean for research affairs at the Indiana University School of Medicine, Tatiana Foroud, PhD said.

Among many achievements, Dr. Gaston is especially renowned for developing new therapies for severe asthma, with the goal to eliminate the symptoms of the life-threatening disease. Under a five-year, $12 million program project grant (P01) from the National Heart, Lung and Blood Institute (NHLBI), the research analyzes S-nitrosylation signaling, airway pH regulation and androgen signaling to target treatment options for severe asthma. With the research findings, Dr. Gaston’s next endeavor will involve taking the therapies to market.

“There is no one-size-fits-all approach for treating asthma,” Dr. Gaston said. “Each patient’s symptoms are different; therefore, we aim to develop personalized treatments in order to find the right drug for the right person.”

In addition to asthma, Dr. Gaston leads basic and translational research focused on improving the management of childhood respiratory diseases such as apnea, viral pneumonia, bronchiolitis, septic shock, primary ciliary dyskinesia and more. To date, Dr. Gaston has disclosed 13 inventions, published numerous patents, completed over 230 publications and created five startups.

Dr. Gaston was inducted into the AAP April 5 – 7, 2024 in Chicago, IL as part of a joint meeting with The American Society for Clinical Investigation (ASCI), another society representing physician-scientists who have made notable contributions to improve health and wellness. He was alongside other representatives from Riley Children’s, those being David Hains, MD, division chief of pediatric nephrology and Chandy C. John, MD, MS, pediatric infectious disease specialist.

"I'm thrilled that the innovation and outstanding research of our faculty is being recognized at such a high level,” Dr. Foroud added. “Dr. Gaston is incredibly deserving of this honor.”

About pediatric pulmonology

Riley Children’s boasts a leading pediatric pulmonology program, home to specialists providing care for children with respiratory and sleep disorders. Program highlights include:

  • Core member of the Severe Pediatric Asthma Consortium, aimed to develop best practice guidelines and cultivate asthma research initiatives
  • Home to the nation’s only multidisciplinary program for patients with Alström syndrome
  • One of the largest cystic fibrosis programs in the nation

Learn more about pediatric pulmonology at Riley Children's.

]]>
Physician-scientist among one of pediatric nephrology’s best https://www.rileychildrens.org/connections/physician-scientist-among-one-of-pediatric-nephrologys-best Tue, 07 May 2024 10:01:00 -0400 https://www.rileychildrens.org/connections/physician-scientist-among-one-of-pediatric-nephrologys-best David Hains, MD, division chief of pediatric nephrology at Riley Children’s Health, is among one of few to be inducted into the American Society for Clinical Investigation (ASCI) in 2024. The ASCI, a nonprofit medical society comprised of more than 3,000 physician-scientists, involves those who are dedicated to improving the health and wellness of others. For Dr. Hains, the national acclaim goes beyond his mere passion for helping children in need.

Founded in 1908, the ASCI is focused on the role of physician-scientists, seeking to support those elected in their scientific endeavors, educational needs and clinical aspirations. Each year, the ASCI council recommends only 100 candidates for election based on outstanding scholarly achievement. Members who are chosen are held to the highest standards of integrity, professionalism, mutual respect and collegiality, according to the ASCI website.

"Election as a member of the ASCI is a milestone achievement in the career of a physician-scientist," executive associate dean for research affairs at the Indiana University School of Medicine, Tatiana Foroud, PhD said.

Among many achievements, Dr. Hains is a leader in pediatric nephrology nationally, specifically in the field of innate immunity and urinary tract infections in children with vesicoureteral reflux. Additionally, he has participated in numerous study sections for the National Institutes of Health (NIH) including the review of R01 applications and U54 O’Brien Urology Cooperative Research Centers. Presently, Dr. Hains is a member of numerous professional societies and regularly evaluates many of his field’s top journals.

Dr. Hains was inducted into the society April 5 – 7, 2024 in Chicago, IL as part of a joint meeting with the Association of American Physicians (AAP), another society recognizing physician-scientists who are dedicated to improving patient care through research and innovation. He was alongside other representatives from Riley Children’s, those being Benjamin Gaston, MD, pediatric pulmonologist, and Chandy C. John, MD, pediatric infectious disease specialist.

"I'm thrilled that the innovation and outstanding research of our faculty is being recognized at such a high level,” Dr. Foroud added. “Dr. Hains is incredibly deserving of this honor.”

Beyond the ASCI award, Dr. Hains was also honored with the Mid-Career Award from the American Society of Pediatric Nephrology (ASPN) for his leading contributions to teaching, education, research, mentorship and advocacy. The recognition is another sentiment to his exceptional work in pediatric nephrology.

“I am extremely humbled and honored to be selected for the ASPN Mid-Career Award,” Dr. Hains said. “The ASPN has been critical in our success at IU to recruit as well as elevate the careers of Pediatric Nephrology faculty and learners. Such a great honor and can’t thank my team and nominators enough.”

About our pediatric nephrology program

Led by Dr. Hains, the pediatric nephrology program at Riley Children’s is comprised of an expert care team to treat children with simple to complex kidney diseases. Program highlights include:

  • 12th pediatric center in the nation to launch aquapheresis, allowing for continuous renal replacement therapy in smaller patients, including neonates
  • Home to a comprehensive multidisciplinary pediatric kidney transplant program incorporating pediatrics and internal medicine, nephrology, adolescent medicine and psychology
  • Offers ambulatory blood pressure monitoring for patients with asymptomatic elevated blood pressure
]]>
Her lucky charm: Nine-year-old patient forms special bond with child life specialist https://www.rileychildrens.org/connections/her-lucky-charm-nine-year-old-patient-forms-special-bond-with-child-life-specialist Fri, 03 May 2024 14:09:00 -0400 https://www.rileychildrens.org/connections/her-lucky-charm-nine-year-old-patient-forms-special-bond-with-child-life-specialist Her lucky charm: Nine-year-old Harlie Davidson calls her Riley child life specialist, Maddie, her lucky charm.

The two formed a special friendship during Harlie’s multiple hospitalizations due to a brain tumor.

Maddie used special interventions like creating a brain out of playdough to help Harlie understand what her brain surgery would entail.

Harlie has now recovered from her brain surgeries and is back at home. But, Maddie still holds a special place in her heart.

When Harlie’s teacher asked her to create a project about her lucky charms, Harlie included Maddie on her list.

“She definitely had a big impact on my life,” Harlie said.

]]>
For retiring social worker, people are his passion https://www.rileychildrens.org/connections/for-retiring-social-worker-people-are-his-passion Fri, 03 May 2024 08:06:00 -0400 https://www.rileychildrens.org/connections/for-retiring-social-worker-people-are-his-passion By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Andy Harner was once affectionately described as a heart with two legs.

He no doubt laughed about that then just as he does today, reflecting on a 35-year career in social work for Riley Children’s Health.

Harner, who joined Riley’s social work team in 1989 at the age of 25, has spent the past several days and weeks cleaning out files and saying his goodbyes as he prepares for life outside Riley. His last day is May 3.

As clinical manager of social work, he doesn’t apologize for leading with his heart.

“I do have a lot of emotion, but who can do this work at Riley without that,” he asks. “You can teach anything else but that. Compassion and empathy are what people need the most in this environment.”

Andy Harner retiring social worker

Cheryl Ramey-Hunt, Harner’s manager, said he has those qualities in spades.

“Andy brought his heart to Riley kids, their families and colleagues,” she said. “The work here is rich, complex and challenging. I recognize how much he loves Riley and the mission.”

Andy Harner retiring social worker

As a member of Indiana’s Behavioral Health and Human Services Licensing Board since 2001, Harner has been the team’s north star when it comes to any questions or concerns about social work licensure, she said.

“His empathetic presence will be missed.”

For social worker Leah Crane, having Harner as her manager has been “an incredible gift.”

“He has supported me and encouraged me both inside and outside of Riley. Andy is an unbelievably generous person. Always so giving to others and sacrificial of himself.”

As Riley celebrates its 100th year in 2024, Harner can’t help but marvel at how the focus of social work hasn’t changed much in the past century, but the environment that social workers must navigate continues to change.

In his presentations over the years, he has introduced people to the story of Riley’s first social worker – Edna Henry – and the trails she blazed for the hospital and the School of Social Work at Indiana University.

Edna Henry social worker

“The year after Riley opened, they hired Edna Henry, who came to us from the East Coast, where she had just finished a master’s in social work,” he said. “It was a relatively new line of study in the early 1900s, and she came here and really put together the social work program at Riley and University Hospital.”

He never worked with Henry, mind you; he’s not that old, he laughs. But she has had a tremendous impact on his work at Riley.

“It's amazing some of the things that she and the team were really doing back then,” he added, especially in understanding the impact of a diagnosis or a traumatic experience on a family.

“People are more than their diagnosis. For patients and families, this is just a portion of their lives, and figuring out how to put this new trajectory of their life in view is a really important role for social work,” he said.

“We talk a lot about social determinants of health now. Edna was really doing that work back then.”

When Harner began his career at Riley, he worked in the hemophilia program as part of a multidisciplinary team. At that time, an estimated 10,000 people around the country who had the bleeding disorder were also infected with HIV, the virus that causes AIDS, as a result of blood transfusions.

Ryan White was among those people.

Ryan White AIDS patient

“They had this chronic illness, then they had HIV as well,” Harner said. “And there was a lot of fear about HIV at that time. There was this perception that this was God’s retribution for people who were not living a lifestyle that they felt was appropriate.”

People were cruel, but White and his family helped change the conversation. The Indiana teen, who fought for the right to attend school after his diagnosis became public, was treated at Riley from the age of 13 until his death in April 1990 at age 18. A sculpted image of the young man was rededicated last year and hangs on a wall near the Maternity Tower atrium.

“Ryan White and his family made a huge impact,” Harner said. “And there were so many other kids in Indiana and across the country who really benefited from their ability to be vulnerable and to really put themselves out there.”

From hemophilia, Harner moved into oncology, high-risk asthma, the burn unit and sickle cell disease. With the latter, he saw the disparity that still exists today in the areas of research and treatment for a disease that primarily strikes people of color.

“You can’t help but look at race and think, what role does that play,” he said. “Is there racism in our country? Yes. Is there health disparity? Yes. And is it up to us to try to figure out how to do things differently? Yes.”

Social workers sometimes must say the things people don’t want to hear, he explained.

“Hopefully, we are people who are supportive, but we also are people who call things out that need to change. Not always just with a person working one on one with a family, but also in the work we do at a macro level in society.”

Harner, the guest of honor at a retirement celebration Thursday at Riley, is looking forward to having more time to travel with his partner, as well as indulge in his hobbies of cooking, gardening and enjoying classical music.

Throughout his career, he strived to maintain a good work-life balance, which he encourages younger professionals to practice as well.

“Some of the secret sauce has always been having a strong family, a good group of friends/colleagues and a partner who supports you. You have to be able to fill your cup outside work,” he said.

He acknowledges feeling a bit wistful as he closes the door on his professional life at Riley.

“I look at the new social workers coming on board, and I’m so excited to see them at the beginning of their careers. I’m going to miss being part of helping them grow within the profession.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org, submitted and from Indiana University Bloomington Archives

]]>
Family supports others after the loss of a child https://www.rileychildrens.org/connections/family-supports-others-after-the-loss-of-a-child Thu, 02 May 2024 08:11:00 -0400 https://www.rileychildrens.org/connections/family-supports-others-after-the-loss-of-a-child By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Flynn Helen Roush should have celebrated her first birthday this week. But the little girl who was “born sleeping” April 30, 2023, was still present in her own way during a celebration at IU Health North Hospital recently.

Flynn Helen Roush cooling cradle

Whether it was in the daisy cookies (representing April birthdays), the rainbow-accented bears or the tiny pink heart mementos, the idea was to honor Flynn.

Flynn’s parents, Shayla and Brandon Roush, and her three siblings came together with a crowd of nurses, therapists, physicians, friends and family recently to present a specially designed cradle for use in the hospital’s maternity unit for babies who are stillborn or too small to survive.

Flynn Helen Roush cooling cradle

The “caring cradle,” designed to keep babies who have passed at a certain temperature for hours or days, allows parents to have more time with their child to say goodbye.

Shayla Roush said she used a similar type of cradle at North after her daughter was stillborn one year ago.

“I got to paint her nails, I got to rock her and get pictures with family members,” Roush said. “We got to have moments that we wouldn’t have had if we hadn’t been able to use something similar to this.”

Flynn Helen Roush cooling cradle

It was on New Year’s Eve that Roush decided she wanted to raise money to purchase a more high-tech cooling cradle for North, but she’s not stopping there. She is channeling her grief in other ways, including supporting the Seasons Perinatal Bereavement program at the hospital, as well as Riley Grief Services, and putting together “angel boxes” for other bereaved moms.

“Thank you to everyone who made this possible as a way to honor Flynn,” Roush told the assembled crowd.

Sarah Wenzel, a labor and delivery nurse who has run the bereavement program at North since 2019, said the cradle will allow families “to keep their angel babies with them during their stay.”

“Shayla, you are so strong and so selfless for taking something so tragic and turning it into something so beautiful. Flynn is definitely going to have a lasting legacy through this gift.”

Once families leave the hospital, they are connected with Riley Grief and Bereavement Services, which offers support for as long as they need it, said Cassie Dobbs, program coordinator and former Riley art therapist.

“What we do complements what bereavement coordinators do at North and Downtown,” Dobbs said. “They support families while inpatient in the beginning stages of grief and loss. Our role is to support them in their lifelong journey of grief. It can be months or years. There is no time frame.”

Roush and her family have participated in art therapy, a grief retreat and other program services, which have provided a measure of healing.

“I’ve had a safe place to just grieve,” Roush said. “It’s nice to have a community.”

Click here to learn more and/or to support bereavement services at Riley.

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

]]>
Retro Riley: Riley Home in Lockerbie preserves hospital namesake’s legacy https://www.rileychildrens.org/connections/riley-home-in-lockerbie-preserves-hospital-namesakes-legacy Thu, 02 May 2024 07:56:00 -0400 https://www.rileychildrens.org/connections/riley-home-in-lockerbie-preserves-hospital-namesakes-legacy William Fortune (1883-1942) was a successful Indianapolis entrepreneur, businessman and civic leader, but one of his claims to fame was the home he owned. It wasn’t just any house. Fortune bought the house where James Whitcomb Riley once lived.

William Fortune

During the last 23 years of his life, Riley lived as a paying guest at the 528 Lockerbie St. home of Charles and Magdalena Holstein. The house, built in 1872, was previously owned by Magdalena Holstein’s father, John Nickum, and was designed by architect Robert Platt Daggett, father of Robert Frost Daggett, the original architect for Riley Hospital for Children. Magdalena Holstein died on Oct. 18, 1916, nearly three months after Riley died. Her will stipulated that her home be sold and that proceeds of the sale would be divided among heirs. Her will also provided for Katie Kindell, long-time housekeeper and nurse for Mrs. Holstein and Mr. Riley. She was to receive $10,000, the gift of household property, a Lockerbie house and lot across from the Riley home, and the privilege to live for the next three years in the home at 528 Lockerbie St.

Magdalena Holstein

Newspaper accounts report the sale of the house in late October 1919 by the Union Trust company, executors of Mrs. Holstein’s estate, to a purchaser who requested his name not be made public as it was understood that he made the purchase for a committee that was trying to have the property preserved as a memorial to Riley. What is known most assuredly is that William Fortune bought the house to “save the property,” and Fortune went on to hold the property in trust until the Riley Memorial Association (now the Riley Children’s Foundation) could be formally incorporated in April 1921.

In 1917, Fortune was among the prominent friends of Riley who announced plans to honor the Hoosier poet’s legacy by building a children’s hospital. World War I interrupted those plans, and Fortune did his part by leading a public movement that raised $4 million to support World War I relief and other public needs in Indiana. After the war, plans to build the hospital resumed. In October 1921, the association purchased the original furniture of the home from the estate of Katie Kindell. All that remained was securing the house itself. And in February 1922, Fortune sold the house that he had retained in trust to the association for exactly the amount he paid for it.

With their purchase of the house from Fortune, the association moved quickly, and a new committee was formed to make necessary improvements at the house to ready it for opening as a museum. The James Whitcomb Riley Home opened to the public with great fanfare and celebration two months after its purchase by the association.

James Whitcomb Riley home

The dedication and opening of the Riley home on April 13, 1922, was a springboard for increasing public awareness and launching a statewide campaign to raise additional funds to build the hospital. Association leaders convened a luncheon and conference at the downtown Claypool Hotel that day and talked of plans that contributed to the successful opening of the hospital on Nov. 19, 1924.

Katie Kindell was named by the association on March 15, 1922, to be caretaker and supervisor for the Riley home, a role in which she served until retiring in 1933. The James Whitcomb Riley Home was designated as a National Historic Landmark in 1962 and included in the National Register of Historic Places in 1966.

--Compiled by the Riley Hospital Historic Preservation Committee; photos provided by Digital Indy/James Whitcomb Riley Collection, Bass Photo Collection/Indiana Historical Society, Indiana State Library, Riley Children’s Foundation

]]>
Three brothers recover from brain surgery, throw out first pitch at Indians game https://www.rileychildrens.org/connections/three-brothers-recover-from-brain-surgery-throw-out-first-pitch-at-indians-game Wed, 01 May 2024 14:37:00 -0400 https://www.rileychildrens.org/connections/three-brothers-recover-from-brain-surgery-throw-out-first-pitch-at-indians-game Three brothers recovered from brain surgery and threw out the first pitch at an Indianapolis Indians game.

The young boys wore Indians jerseys and made their way onto the field for the big moment. Their parents were right by their side cheering them on.

In a one year span, the three Niece siblings underwent the same surgery due to being diagnosed with chiari malformation.

The boys had the same Riley Children's Health surgeon, Dr. Laurie Ackerman.

]]>
Superheroes descend on Riley https://www.rileychildrens.org/connections/superheroes-descend-on-riley Mon, 29 Apr 2024 17:41:00 -0400 https://www.rileychildrens.org/connections/superheroes-descend-on-riley Superheroes gathered at Riley Hospital for Children recently to help spread a little extra joy to patients and their families.

Spiderman, Flash, Black Panther and Iron Man descended from the roof of the hospital, doing some cleaning along the way. The window washing crew from American National Skyline created a lot of smiles on National Superhero Day.

“It’s pretty fun to get to surprise the kids when they’re stuck in the hospital,” said Flash.

The characters, plus Hulk and Spiderman II, also came inside to make some new friends.

During a visit to inpatient rehab, the superhero squad and Indiana first lady Janet Holcomb had the chance to meet a few patients who are using their own superpowers – with support from Riley therapists – to heal before they go home.

The costumed comic book characters (and their alter egos – Cory Williams, Davondre Jackson, Ryan Green, Jake Bare, Nyreon Daniel and Jerred Mencer) will tell you that it’s the kids who are the real superheroes.

See all of the photos from the event here.

]]>
"She was literally drowning in front of me" - IU Health emergency medicine doctor jumps into action to save postpartum patient https://www.rileychildrens.org/connections/she-was-literally-drowning-in-front-of-me-iu-health-emergency-medicine-doctor-jumps-into-action-to-save-postpartum-patient Sun, 28 Apr 2024 13:56:00 -0400 https://www.rileychildrens.org/connections/she-was-literally-drowning-in-front-of-me-iu-health-emergency-medicine-doctor-jumps-into-action-to-save-postpartum-patient Chelsea Shippy noticed her blood pressure was high and her legs were swollen a couple days after she had her baby. She required hospitalization and her condition suddenly deteriorated.

Chelsea suffered a flash pulmonary edema. Her lungs filled with fluid.

Dr. Megan Crittendon, who is an emergency medicine doctor at IU Health North Hospital, was part of the rapid response team. She saw Chelsea being moved out of an elevator and immediately jumped into action.

“You could see the terror in her eyes,” said Dr. Crittendon. “She was literally drowning in front of me.”

Dr. Crittendon was able to stabilize Chelsea.

The two of them recently reunited. Click the link below to watch the touching meeting.

]]>
Organ recipient’s love was big and beautiful https://www.rileychildrens.org/connections/organ-recipients-love-was-big-and-beautiful Thu, 25 Apr 2024 15:17:00 -0400 https://www.rileychildrens.org/connections/organ-recipients-love-was-big-and-beautiful By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Malachi Sherck might have needed a new liver and small bowel years ago, but there was nothing wrong with the young man’s heart.

He loved big from the time he was a baby to his final days at Riley Hospital for Children, where he passed away in December at the age of 19.

The fact that he reached young adulthood was a miracle in itself, his parents say, because he nearly died when he was an infant, but his Riley team and the gift of organ donation saved him.

Sherck family transplant

His family came together with Riley team members Wednesday in an event organized by 9 West child life specialist Maddie Rodriguez to celebrate Malachi and the gift of life in recognition of Pediatric Transplant Week.

Chris and Rachel Sherck of Muncie, along with their three younger children, Ruth, Gideon and Lydia, and Rachel’s parents, Dennis and Candy Miller, returned to Riley to add beads to the Donate Life wall display on 9 West, where Malachi spent a lot of time.

“He had a way of knowing when people needed something,” Chris Sherck said of his son, who was nonverbal and had autism but communicated the important things.

UNSPOKEN LESSONS

That’s what registered nurse Anna Lubbers remembers, too. She considers herself lucky to have been able to care for Malachi often in the last year of his life.

While he was unable to speak, she said, “he was able to teach me that words are not needed to communicate compassion, thanks or kindness.”

“He always knew when an extra smile or hug was needed, and he especially knew when we could use a laugh,” Lubbers said. “Malachi made me a better nurse, a better thinker and a better person.”

That’s just one of many stories people have shared with Malachi’s family – stories that remind them what a powerful imprint he left on his family, his friends and his community. It’s knowing about the lives he touched that fills his family with so much gratitude.

“He changed my life and so many others’,” said Malachi’s grandmother, Candy. “We got to see it in so many ways. I’m an old lady and the things he did to change my life…” She shakes away tears. “I’m also a nurse, and my nursing career changed because of what he has done in my life. Because of organ donation, not only did he get to live, we will be forever changed by that gift.”

He made the most of the gift he received, Chris agreed, not just living his life but impacting so many others.

“With Malachi, you felt seen and known,” he said.

Sherck family transplant

“He could tell when you were down,” added Malachi’s little brother, Gideon. “He’d walk up to you, grab your hands, stare right in your eyes and smile.”

Ruth, 16, said even though her brother couldn’t speak, “You knew he loved you. He would snuggle up on the couch, give you a hug and a kiss.”

She is grateful for the time she was given with him.

“When Malachi was an infant, he was given two days to live. If he hadn’t lived, I wouldn’t have been able to meet my big brother, so transplant gave me the opportunity to have a big brother for the 16 years that I did.”

TRANSPLANT AT AGE 1

Malachi suffered a twisted intestine when he was just a few weeks old and was LifeLined to Riley, where he stayed for four months, eventually requiring TPN (total parenteral nutrition) intravenously. That caused his liver to begin to fail.

In 2006, Just after his first birthday, he underwent multiple surgeries in Chicago to transplant a portion of his mother’s liver and intestines, but a central line infection disrupted blood flow to the bowel, so he required another bowel transplant – this time with his uncle as his donor.

Sherck family transplant

“He did great,” Rachel Sherck said, adding that Malachi’s care was transferred back to Riley shortly after transplant, but he was healthy for years. He thrived at home until last year when he acquired a blood infection that started a downward spiral.

Still, Chris said, they received the gift of time.

“Transplant is not a cure, but it is an opportunity for an individual and their family to have an extension of life that you cherish. It changed our lives. It wasn’t giving an extension of life just to Malachi. It was giving an extension of life to all of us, changing all of us in powerful ways.”

Even in 2023, when Malachi began suffering complications, “we made it to December because of all the hard work and love and care the doctors, nurses and surgeons provided,” he said.

They hold that entire team close to their hearts.

“On Dec. 12, when we were walking out of here without Malachi, we were grieving because we weren’t taking Malachi with us, but we were also grieving because this place is like home,” Chris told a large group of nurses, physicians and others gathered on 9 West.

“TEAM LOVED US AS A FAMILY”

“I don’t think we can express enough how wonderful the people who work here are,” Rachel added. “The doctors are amazing, obviously, but nurses don’t always get enough credit. We’ve kept in contact with nurses he had 19 nurses ago, and the new nurses we’ve gotten to meet are like family.”

Nurses like Tracy Swift, who cared for Malachi as a bedside nurse nearly two decades ago and was by his side again last year in her role as a certified wound, ostomy and continence nurse.

Dr. Jean Molleston, chair of Riley’s Pediatric Gastroenterology, Hepatology and Nutrition division, served as Malachi’s primary physician, while Dr. Deborah Billmire was his primary surgeon over the years.

As Malachi got older, he connected with Dr. Richard Mangus, surgical director of the IU Health intestine transplant program and pediatric liver transplant program, and Dr. Kyla Tolliver, GI and hepatology specialist.

Malachi’s siblings felt the love, too.

“Maddie knew when the kids were coming for a visit on a weekend, Rachel said. “She set out coloring books, Legos, toys, games. She made sure they had everything they needed.”

“The entire team,” she said, “loved us as a family.”

Gideon remembers one day in particular.

“I got to skip school and come here because it was Malachi’s birthday. It was amazing how all the nurses treated me as well as they treated Malachi. I felt really special that day, even though it was about my brother,” the middle schooler said.

“All the way to the end, they take care of the entire family,” Rachel said.

“We wouldn’t have had 19 years with Malachi if it wasn’t for this place, so for that we are forever grateful,” Chris told the team gathered Wednesday. “Thank you, and thank you for the chance to celebrate him.”

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

]]>
Transplant gives toddler new life https://www.rileychildrens.org/connections/transplant-gives-toddler-new-life Wed, 24 Apr 2024 11:31:00 -0400 https://www.rileychildrens.org/connections/transplant-gives-toddler-new-life By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

For Dr. Kyla Tolliver, seeing young patients like Ace Butler thriving after an organ transplant makes her job pretty great.

Ace, who will be 3 in June, recently came to the Riley Outpatient Center with his mom, Jessica Butler, to see Dr. Tolliver for a follow-up appointment six months after he received a new liver.

Getting his blood pressure checked before going into the exam room made Ace a little weepy, but the bag of cereal he brought with him seemed to make things better.


Dr. Tolliver, who describes the liver as the most interesting organ in the body, specializes in pediatric gastroenterology and transplant hepatology for Riley Children’s Health. She first saw Ace last year when his liver function began rapidly declining.

Ace, the youngest of three brothers, was born with a condition called Alagille syndrome, a genetic disorder in which the liver has fewer bile ducts than normal, causing a buildup of bile that causes injury to the body.

In addition to harming the liver, the syndrome can cause skin, heart, facial, kidney and eye abnormalities.

In Ace’s case, the liver took a beating. He developed cirrhosis, leaving his liver scarred and permanently damaged. His spleen became enlarged, his skin turned yellow, and he was unable to gain weight.

“He just sat, he didn’t do anything else,” Jessica Butler said about her youngest son as the disease took hold. “By last May, you could tell he was declining.”

That’s about when she and Ace met Dr. Tolliver, who began preparing the family for the possibility of transplant. They thought they could push that major surgery out until Ace turned 3, but by summer’s end, it was clear he needed a new liver.

Dr. Chandrashekhar Kubal, chief of liver and intestine transplant for IU Health, performed the transplant last September.

“The disease is a spectrum,” Dr. Tolliver explained. “Some have more severe liver disease, and some have more severe heart disease. Some need transplant, and some may not. Ace had more severe liver disease, so it progressed faster.”

As a transplant hepatologist, she follows pediatric patients when they have liver disease, before they might need transplant, as well as post-transplant.

“We are always monitoring them, supporting families, getting them prepared for what transplant looks like, working with our surgeons, coordinators, dietitians, social work, physicians and support staff,” she said.

For transplant patients, she said, “it’s kind of like trading one chronic disease for another.”

Patients must follow proper nutrition and take daily medications to keep the body from rejecting the new organ.

Ace won’t be able to play contact sports as he gets older, but activities like golf and tennis should be fine, she told his mom.

While he has struggled to gain weight, he added about 2 pounds to his small frame since Dr. Tolliver last saw him in February, so that’s progress.

“He eats everything I put in front of him,” Jessica Butler told the physician.

“We’re getting there,” Dr. Tolliver agreed, adding that kids with Alagille syndrome tend to be smaller than other kids their age, “but getting him transplanted sooner rather than later allows him to better reach his growth potential sooner.”

Seeing her son recover from the transplant has been a joy for Butler, who said Ace relearned to crawl after surgery and now he is walking. He participates in physical, occupational and speech therapy through Riley.

Dr. Tolliver will continue to monitor his progress closely over the next several months, and Ace will follow up with Riley until he is 19 when he will transition to adult care.

“In the spirit of Donate Life Month, Ace is just a great example of the gift that families who donate organs of loved ones provide,” Dr. Tolliver said. “We know organ donation is a hard time for those families, but it is also a celebration for other families. We appreciate all the gifts we receive that allow kids like Ace to go on and live a great life.”

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

]]>
Teacher of the Year is at the head of the class https://www.rileychildrens.org/connections/teacher-of-the-year-is-at-the-head-of-the-class Mon, 22 Apr 2024 17:19:00 -0400 https://www.rileychildrens.org/connections/teacher-of-the-year-is-at-the-head-of-the-class By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

She thought she was walking into a meeting, but Stacy Willett walked into a celebration Monday morning – a celebration planned for her.

Willett received the Riley Children’s Health Teacher of the Year Award in collaboration with the Indiana Department of Education, a first for the 21-year Riley teacher.

Stacy Willett teacher of the year

Madison Stewart, manager of the school program, described Willett as “a dedicated and compassionate team member … the type of team member I wish we could clone for all departments.”

Amid the school program restructuring over the past year, Willett, who focuses on inpatient and outpatient leukemia/lymphoma and inpatient cystic fibrosis, has “completely risen to the occasion,” Stewart said, describing her as “a very dedicated educator.”

“It’s only fitting and a long time coming for you to be our teacher of the year,” Stewart told the teacher, presenting her with a plaque and flowers.

Stacy Willett teacher of the year

For her part, Willett was taken aback by the surprise and the crowd of fellow educators and team members, as well as her husband, Tim, who gathered in a conference room to wish her well.

“I’m so honored to be the teacher of the year for Riley Hospital for Children, but I really think our team deserves that recognition,” she said. “They should all be up here with me.”

Willett said she feels “blessed and thankful” to come to work every day, “getting to support our patients and families and walk the journey with them.”

Stacy Willett teacher of the year

She and her colleagues focus on relieving some of the stress families feel when they first come to Riley, get news of a serious diagnosis, then wonder how they are supposed to help their child keep up with schoolwork. Not only do the educational liaisons work directly with patients in elementary and high school, they also coordinate services with the child’s home school district.

Willett began her career in education as a developmental therapist with First Steps, before joining Riley as an instructional assistant 21 years ago. At that time, there was one other teacher on staff at Riley. In the fall of that same year, she transitioned into an educational liaison (teacher) role. Currently, there are seven on the team.

When she was In school, she had considered special education and physical/occupational therapy as career options, she said, “so it’s cool to me that I’m doing education, and special ed within that, but also within a medical setting.”

“I was definitely born to be a teacher, and it’s just amazing to me that I have this opportunity to come in and do this job and support so many of our kiddos in the state of Indiana and surrounding states.”

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

]]>
After 558 days, toddler goes home for the first time https://www.rileychildrens.org/connections/after-558-days-toddler-goes-home-for-the-first-time Thu, 18 Apr 2024 14:42:00 -0400 https://www.rileychildrens.org/connections/after-558-days-toddler-goes-home-for-the-first-time By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

He’s grown up before their eyes.

The boy who first came to Riley Hospital for Children as a preemie in December 2022 went home as a chunky toddler Wednesday afternoon.

Surrounding him with cheers and even a few tears were the nurses, respiratory therapists and advanced practice providers who have helped him grow and flourish these past 16 months.

Archer Nichols

Archer Nichols, 18 months, has spent his entire life in the hospital. He was born at a southside hospital in October 2022 at 26 weeks and 2 days via emergency C-section after his mom, Stefanie Nichols, was diagnosed with pre-eclampsia, a serious condition in pregnancy that risks the life of both mother and baby.

Her husband, Brandon, a staff sergeant in the U.S. Army, was stationed in Georgia at the time, so he couldn’t be by her side in those first few hours.

“It was hard,” she acknowledged, “but it’s all part of the story. I’m OK now.”

She and her husband are better than OK after finally getting to take their baby home this week.

“It’s super exciting,” Stefanie said before they left the hospital, though admitting she was “slightly terrified.”

“I’ve been waiting for this day forever, and then when they finally say, ‘You get to go home on the 17th,’ I’m like, ‘Wait, what? I’m not ready.’ Even though I know I am.”

Archer didn’t understand what all the fuss was about Wednesday as nurses dressed him in a little dinosaur outfit and crowded into his room to say goodbye. But he soaked it all in.

“Archer loves attention,” said nurse Brittany Dyer. “And his family is amazing. Mom is so upbeat, always optimistic, even when we didn’t know how things were going to go.”

As a preemie, Archer was born with BPD (bronchopulmonary dysplasia), a result of his lungs not being fully developed. He received a tracheostomy to help him breathe early on, and the hope was that he would be able to go home soon afterward. But that was not to be.

“He just needed his own time to get his lungs to grow and be strong enough,” Stefanie said.

Archer Nichols

Archer is going home on a ventilator, so Riley’s home vent team will continue to support him.

“He’s the happiest little boy,” said respiratory therapist Amanda Pickett, who will see Archer on an outpatient basis. “He is a fan favorite, waving at anyone who walks by his room. He just loves people, and he will thrive at home.”

Thao Doan, who first cared for Archer as a bedside nurse, grew with him as well, transitioning into the role of nurse practitioner on the home ventilation team to become the little boy’s advanced practice provider.

She, along with pulmonary physicians Dr. A.I Cristea, medical director of the home ventilation program, and Dr. Sarah Bauer, will work with the family, alongside respiratory therapy, social work and a nurse coordinator, to ensure that Archer continues to thrive at home.

“He has gone through a lot in his little life, but he has been brave and strong, and he’s a fighter,” Doan said. “He brings joy to all of us.”

While Archer is the Greenwood couple’s first child, Stefanie says she’s never seen a happier baby.

“He is so loved by his nurses,” she said. “There are times I would come in, and everyone is taking their lunch break in his room, just hanging out with Archer. There are people I’ve never met who wave to him when they go by.”

Archer Nichols

Archer is going home to a Harry Potter-themed nursery, where his parents have added an inflatable mattress on the floor so they can crash during the adjustment period at home.

And soon, they will make room for another baby. Archer will have a little brother or sister sometime in June.

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

]]>
Nurses get under their patients’ skin – in a good way https://www.rileychildrens.org/connections/nurses-get-under-their-patients-skin-in-a-good-way Wed, 17 Apr 2024 12:15:00 -0400 https://www.rileychildrens.org/connections/nurses-get-under-their-patients-skin-in-a-good-way By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Tracy Swift thought she’d be at Riley Hospital for Children maybe a year before moving on. Thirty-eight years later, she’s still here and doesn’t regret it for a minute.

She had worked with adults as a nursing student and expected to continue with that population after graduation, but after a clinical rotation at Riley, she accepted an offer to work in its toddler unit.

“That was before we had the cancer center or the heart center, so we had age-based units,” she explained. “I took care of toddlers for nine years, then transitioned to the infant unit.”

That’s where the former bedside nurse first began learning more about wound care and skin care, thanks to educational sessions provided monthly over at IU Health Methodist Hospital.

It sparked a passion in Swift, which was reinforced when she moved to 9E in 2011, caring for surgery and trauma patients.

“I really like wound care. I’ve taken care of patients with ostomies and G-tubes for 30-plus years, so in 2016, when an opportunity came along to be a wound and ostomy nurse, I transitioned to this position.”

Ostomy surgery is a life-saving procedure that diverts bodily waste through a surgically created stoma on the abdomen into a pouch. An ostomy can be necessary due to birth defects, cancer, inflammatory bowel disease, incontinence and other medical conditions or trauma.

Caring for the skin around ostomies, wounds, pressure injuries and related conditions is a specialized skill. That’s why Riley has three certified nurses dedicated to this area on the inpatient side, as well as two who work on the outpatient side.

Technically, they are called Wound, Ostomy, Continence (WOC) nurses, and this week is set aside to recognize them and the contributions they make to keeping patients safe from harm.

Swift’s WOC colleagues are Lydia Council and Cara Flanigan (inpatient), along with Lisa Kirk and Tim Luttrell (ambulatory).

These nurses are clinical experts in the prevention and treatment of any skin issues, explained Kristin Miller, director of nursing practice for Riley Children’s Health.

As the largest organ in the body, when the skin is not healthy, it can lead to other issues such as dehydration, infections and sensation issues, Miller said.

On the inpatient side, WOC nurses round on high-risk patients in every unit, including the Maternity Tower, where they treat moms and babies. They also do a lot of educating to help bedside nurses understand best practices to prevent and/or treat skin injuries.

“Their role is incredibly important to keep our patients safe and ensure that we are providing quality nursing care,” Miller said, adding that in 2023, Riley Children’s Health decreased hospital-acquired pressure injuries (a type of skin injury) by 53.5%.

“There is no doubt in my mind that our Wound, Ostomy, Continence Nurse team played a large role in this improvement,” Miller said.

Swift, who is certified as a pediatric nurse as well as a WOC nurse, said she loves the challenge of the job.

“It keeps me on my toes,” she said. “There’s always something new to learn, and we have a great network of peers across the country.”

Swift serves on the board of directors for the Midwest Region of the national Wound, Ostomy and Continence Nurses Society. While she sees several patients each day, she also leads a skin champion group that seeks representation from every unit, meeting quarterly for training and information-sharing.

In addition, the small team does extensive teaching with families to ensure that they are prepared with the knowledge, skills and supplies they need when they go home.

Tracy Swift wound, ostomy, continence nurse

Swift and her husband, Rick, have three sons, two grandsons and a granddaughter on the way. She indulges her creative side outside of work by designing her own greeting cards.

While her career plan might not have included nearly four decades at Riley, she wouldn’t change a thing, she said.

“I would do it all over again. Clearly, pediatrics is where I belonged.”

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

]]>
Trauma survivor: “I just know my mom is with me right now” https://www.rileychildrens.org/connections/trauma-survivor-i-just-know-my-mom-is-with-me-right-now Tue, 16 Apr 2024 16:08:00 -0400 https://www.rileychildrens.org/connections/trauma-survivor-i-just-know-my-mom-is-with-me-right-now By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

The accident happened without warning. A screech of brakes, the crunch of metal. Lives changed forever.

It was a Monday morning in early February.

8:05 a.m., John Charters remembers. He was at work when he got the first call from a friend.

Chance Charters trauma surgery

His wife, Amanda, was driving their son, Chance, to school when a truck collided head-on with her minivan. Amanda was killed; Chance was badly injured, though his seatbelt undoubtedly saved his life.

The 9-year-old boy was LifeLined to Riley Hospital for Children at IU Health from the accident scene – a county road south of Roachdale, Indiana, where Chance lived with his mom, dad and two sisters.

He was in critical condition with life-threatening injuries that included a broken pelvis, severe fractures in both arms and legs, collapsed lung, ruptured bladder and a brain injury.

But he was alive.

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

Chance Charters trauma surgery

As the general surgeon, Dr. Robert Burns was the captain in the operating room on that day, which stretched into night. He opened up Chance’s abdomen to check for internal organ damage. That’s when he found the bladder rupture, 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.

In all, Chance spent 10 days in the pediatric intensive care unit and another 10 days on the ninth floor recovering from surgery. He was discharged from the hospital still in the grip of the fixator, so his dad had to carry him around the house.

A “LITTLE HERO”

Riley orthopedic physician assistant Todd Osterbur first met Chance, his father and his grandfather, Jim Charters, on Feb. 29 during Chance’s first orthopedic follow-up appointment.

The young man has had a profound impact on Osterbur, who calls him his “little hero.”

“He is such a bright little guy, a bundle of joy,” Osterbur said, all the more surprising because of the challenges he has had to face.

Chance Charters trauma surgery

The orthopedics specialist recalls a moment in the office when he and his team were removing a leg cast and some pins that had been holding Chance’s bones together.

“He said, ‘I just know my mom is with me right now,’” Osterbur remembered.

There was not a dry eye in the room.

“He gives us all hope,” Osterbur said. “I look up to him for his strength.”

That strength is what has carried John Charters through these tortuous months since the accident.

“I just keep focused on him,” Charters said as he watched his son play a game in the inpatient rehab unit at Riley, where he was admitted earlier this month after the fixator was removed. “He’s been in good spirits. I have no idea how.”

A DATE WITH THE ECLIPSE

Chance has come a long way since those early days in the PICU, where he was intubated for a week and could only communicate by squeezing a hand. Charters remembers a trio of nurses who took excellent care of his son.

“I don’t think I could have asked for a better set of nurses while we were there,” he said.

Chance Charters trauma surgery

By the time Chance graduated from the PICU to the ninth floor, child life specialist Sarah Donlan became one of his favorite people. The two recently reconnected during the April 8 eclipse, which Chance watched from the Child Life Zone outdoor play area.

Donlan remembers how weak Chance was when he first was transferred to 9E, but he made sure to tell her a joke about his dad. Even then, his sense of humor was intact.

“Each day I walked into his room, he had progressed and was excited to share what he could do today that he couldn’t do yesterday,” Donlan said. “His dad is such an amazing support and has always been dedicated to doing whatever is best for Chance.”

When Chance was discharged from 9E in late February, he had casts on both legs and one arm, Donlan recalled, and could not bear any weight on his legs. So, to hear him shout her name and see him maneuver across the room with the aid of a walker during the eclipse party at Riley last week was special indeed.

Chance Charters trauma surgery

The hug that followed was extra special, as was the eclipse itself.

“Getting to experience a once-in-a-lifetime event with a kid who has been through so much, physically and mentally, was so special,” she said. “Chance is the picture of resiliency and continues to find and spread joy wherever possible.”

“A JOY ON THE UNIT”

Over the past 10 days or so, Chance has been working on physical, occupational and speech therapy in Riley’s rehab unit, where he made fast friends with the staff and other patients before being discharged over the weekend.

“I think all the staff was really helpful and helped ease your mind,” said Jim Charters, who has been by his son and grandson’s side throughout the ordeal. Even in rehab, Chance’s dad would sleep in the recliner next to his son, while Jim took the small rollaway bed near the window.

“Chance was a joy to have on the unit,” said recreation therapist Lauren Faith. “He was funny and kind to everyone he encountered, making friends with other kids and drawing people in with ease.”

That is his son’s nature, John Charters said, always positive and energetic – and interested in his injuries.

If you ask him, the fourth-grader can tell you the precise number of stitches and staples he got in his left leg – 34 on the outside and 18 on the inside, he said. And another 17 in his belly. His left arm has some nerve damage, so he can’t hold it out straight.

TICKLING HIS FUNNY BONE

“I’m a dinosaur,” he says with a grin as he curls his fingers in. “I broke my humerus,” he adds, pointing to his upper arm, then bursts out laughing when someone jokes that breaking your humerus isn’t very funny.

Chance is exceptionally bright, so nothing gets past him.

He has moments when all that has happened catches up with him though, and the joyful boy goes quiet. He wants to go to the cemetery to visit his mom, his dad said. He was still in intensive care during her funeral.

Chance Charters trauma surgery

He wants to be home with his sisters again. He wants to go fishing with his grandpa and play baseball with his friends.

He probably won’t need his walker too much longer, his dad says.

“I didn’t know if he would walk with a limp or a hitch,” Charters said. “I just want to make sure he can play sports. He loves baseball and basketball. They think he should be good to play.”

He’s a “bounce-back kid” for sure, says Osterbur. “His is a story of courage and positivity. He’s such an inspiration; that’s what I took away from this.”

And it highlights the number of specialties that supported him, the orthopedics specialist said.

“It’s why we all come together to do what we do here,” Osterbur said. “He suffered these potentially lifechanging injuries – it’s really a miracle – but he should be a normal functioning adult without a lot of long-term problems.”

Before bouncing off the bed for another therapy session last week, Chance leaned in to give his dad a hug, quietly whispering, “I love you.”

John Charters responded in kind and watched his son leave the room, steadied by his walker.

“It’s a lot for one little man,” he said. “I don’t know how he’s doing it, but he’s keeping me going.”

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

]]>
Pediatric cancer researcher to revamp the care journey for pediatric patients https://www.rileychildrens.org/connections/pediatric-cancer-researcher-to-revamp-the-care-journey-for-pediatric-patients Mon, 15 Apr 2024 10:43:00 -0400 https://www.rileychildrens.org/connections/pediatric-cancer-researcher-to-revamp-the-care-journey-for-pediatric-patients With a steadfast commitment to revamping the care journey for children with cancer, Jennifer Belsky, DO, pediatric hematologist and director of Pediatric and AYA Lymphoma at Riley Children’s Health, leads a three-year research study to analyze the detrimental side effects of children and teens when receiving cancer therapy treatment.

Under a $30,000 grant from The Heroes Foundation, an Indianapolis-based cancer organization, Dr. Belsky’s research focuses on addressing the debilitating impacts of chemotherapy and radiation, two cancer treatments that most often take an emotional toll on young patients and their families. Despite the success in targeting cancer cells and managing cancerous conditions, each round of these treatment therapies bring its own set of complications, affecting quality of life and the overall care experience for children.

“Throughout my career so far, the most frustrating part of treating patients is watching children suffer from the life-saving medicines that I am forced to give them,” Dr. Belsky said. “That is why this research is incredibly important.”

One of the most challenging side effects Dr. Belsky aims to tackle in her research is neuropathy, a condition characterized by nerve pain, numbness, muscle weakness and other symptoms. It is often a result of medications like Vincristine, a treatment commonly used for pediatric cancer.

Furthermore, Dr. Belsky and her research team will conduct blood samples and cognitive interviews to gain deeper insights into the impact of neuropathy on young patients. By understanding the mechanisms behind this side effect, Dr. Belsky hopes to pave the way for interventions that alleviate pain to further improve the cancer journey for pediatric patients.

The generous grant comes from support from The Heroes Foundation’s Team JOEY program, whose ongoing mission is to further the battle against pediatric cancer. Since 2016, the program has allocated $70,000 to various research studies to bolster promising results in the field of pediatric hematology and oncology. Ultimately, the grant gifted by Team JOEY will enable Dr. Belsky and her team to significantly advance their research efforts, offering hope and relief to families grappling with childhood cancer diagnoses.

In addition to her research initiative, Dr. Belsky is a pioneer in the pediatric hematology and oncology department at Riley Children’s, whose clinical focus is treating children and adolescent young adults with acute leukemias and lymphoma. Presently, Dr. Belsky is active in multiple clinical trials.

About pediatric hematology and oncology

Experts within the pediatric hematology and oncology program at Riley Children’s combine leading-edge medicine with personalized care to treat children with cancer and blood disorders. Program distinctions include:

  • Early access to clinical trials, novel cancer therapies and research through the Children’s Oncology Group Phase I and Pilot Consortium and the Pacific Pediatric Neuro Oncology Consortium
  • One of the few children’s hospitals in the nation with comprehensive multidisciplinary treatment programs for neurofibromatosis and vascular formations
]]>
Riley Children's Health building pediatric emergency department at IU Health North Hospital https://www.rileychildrens.org/connections/riley-childrens-health-building-pediatric-emergency-department-at-iu-health-north-hospital Sat, 13 Apr 2024 21:28:00 -0400 https://www.rileychildrens.org/connections/riley-childrens-health-building-pediatric-emergency-department-at-iu-health-north-hospital Riley Children’s Health is building a dedicated pediatric emergency department at IU Health North Hospital.

For several years, Riley emergency medicine doctors, nurses and child life specialists have provided care to pediatric patients in the IU Health North ED. The team has seen an increase in the number of pediatric patients coming through the doors.

The new pediatric emergency department will create a special space for children and their families. The 8-bed unit is expected to open this summer.

]]>
Retro Riley: Hospital broke new ground with oxygen therapy https://www.rileychildrens.org/connections/retro-riley-hospital-broke-new-ground-with-oxygen-therapy Thu, 11 Apr 2024 09:28:00 -0400 https://www.rileychildrens.org/connections/retro-riley-hospital-broke-new-ground-with-oxygen-therapy On the wall outside the first-floor entrance of Riley Hospital’s Respiratory Therapy Department is a bronze plaque. Imagine a crowd of 300 people representing more than 50 Indiana chapters of Psi Iota Xi Sorority gathered on Feb. 2, 1932 – at Riley Hospital – to commemorate the opening of the state’s first-ever Oxygen Therapy Department with the formal unveiling of this plaque.

Respiratory Therapy Department oxygen therapy

Psi Iota Xi, one of the legacy organizations supporting the hospital since its opening in 1924, raised and donated the $7,500 that made the construction of Riley Hospital’s oxygen room possible in 1932. At that time, hospital authorities called this donation “one of the most important made by any organization in recent years to the improvement of hospital treatment facilities.”

In the crowd that day was Dr. Harold Trusler, Riley Hospital’s trail-blazing surgeon and director of Indiana University School of Medicine’s research department. It was Dr. Trusler who designed the plan for Riley Hospital’s oxygen rooms based on what he learned from visits to major hospitals in other states. Dr. Willis Gatch, then head of surgery and soon IUSM dean, was also there that day to acknowledge the donation. He supervised construction of the oxygen room, which consisted of four chambers, was airtight and fitted with apparatus for the manufacture of oxygen that could be regulated.

Oxygen therapy offered a new way to provide care, comfort and relief for pediatric patients in the 1930s. It was believed at the time that oxygen therapy could help children with a host of medical challenges, including pneumonia, high fevers, pulmonary edema, postoperative lung complications, embolism, laryngeal or tracheal obstruction, coronary occlusion and cardiac decomposition.

Within a year after the dedication, James Carr, executive secretary of the Riley Memorial Association, reported that the oxygen chambers were producing good results in critically ill children, and many delegations of physicians had come to inspect the department.

Respiratory Therapy Department oxygen therapy

Mary Brokaw, whose nursing career at Riley Hospital spanned 52 years (1956-2008), recalls that the oxygen room actually consisted of two rooms (fitted with double doors to maintain the oxygen concentration) and storge for oxygen tanks located outside what was then the Isolation Unit on the hospital’s second floor. At that time, the oxygen rooms were no longer in use. Theresa Miller Henshaw, former senior nurse leader whose 27-year nursing career at Riley began in 1958, said piped-in oxygen started about a year after she began, so the tanks were not used any more.

New and improved methods for monitoring patient oxygen levels and administering oxygen, along with the growth of respiratory therapy as a profession beginning in the late 1940s, replaced the need for patients to be in Riley Hospital’s oxygen room and brought oxygen therapy to the patient’s bedside. While in operation for a relatively short time, Riley Hospital’s oxygen room paved the way for progress in the use of oxygen therapy for pediatric patient care.

--Compiled by the Riley Hospital Historic Preservation Committee; photos provided by Sydney Gendron and IUPUI University Library Special Collections and Archives

]]>
Birthing hope: The fight for Black maternal health https://www.rileychildrens.org/connections/birthing-hope-the-fight-for-black-maternal-health Wed, 10 Apr 2024 08:49:00 -0400 https://www.rileychildrens.org/connections/birthing-hope-the-fight-for-black-maternal-health Black women disproportionately experience unfavorable pregnancy outcomes compared to women of other racial and ethnic groups. In fact, Black women are nearly three times more likely to die during pregnancy or delivery than any other race. That’s why Destinee Miles, a clinical nurse in labor and delivery at Riley Hospital for Children, dedicates her career to advocating for the health of Black mothers.

Experiencing a traumatic birth herself, Miles knows firsthand the complications that can occur beginning as early as prenatal care all the way through postpartum. In her role, Miles sees some of the most adverse patient outcomes. After learning about two Black maternal deaths in her unit, Miles found herself asking “why are we dying?”

Destinee Miles Labor and Delivery Nurse

Underlying chronic conditions, quality of healthcare and implicit bias are some factors that contribute to maternal deaths. Black Maternal Health Week (BMHW) is recognized every year in April in efforts to bring awareness to action in improving Black maternal health. Because 80% of maternal deaths are preventable, it’s important to recognize warning signs, provide timely treatment and deliver quality care.

“My fight has been and will always be for Black moms,” says Miles. “BMHW is important because it shows that the health of Black mother’s matter. The call for proper education is at the forefront.”

Destinee Miles Labor and Delivery Nurse

Miles and other Riley team members are ensuring that moms feel safe and have the necessary resources when they come in for appointments. When visiting the labor and delivery unit at Riley, you’ll find a board that outlines the importance of their health being a focus before, during and after their pregnancy. There are guides sent home with moms to help start conversations with their providers if they’re experiencing any maternal warning signs.

“We are working to shorten the knowledge gap many moms face,” says Miles. “It’s important to share stories, remind them that they know their body best and to share what they can expect on this journey.”

Everyone plays a role in making sure mothers and their babies make it home safely. When Miles encounters a mother that might need assistance, she serves as a liaison to IU Health social workers, those that work in chaplaincy and even therapists to connect with the mothers. Most importantly, Miles serves as a companion and assures mothers that they are not on this journey alone. “Your health matters, your mental health matters,” says Miles as she encounters each mother. “You need to have a healthy mother to have a healthy baby.”

Destinee Miles Labor and Delivery Nurse

While the fight for Black maternal health can be tough, Miles sees the reward in it every day. Growing up, Miles spent a lot of time at Riley as her mother was a pediatric intensive care unit nurse. Seeing her mother’s compassionate care trickled down and led Miles to work in labor and delivery, and ultimately spearheaded her passion for Black maternal health. As Miles continues throughout her career, she is committed to combat the maternal mortality rate in Indiana and hopes to see Indiana’s rank of third worst for maternal mortality change. “I do see a light at the end of the tunnel,” says Miles.

]]>
PICU nurse builds bond with patients and families https://www.rileychildrens.org/connections/picu-nurse-builds-bond-with-patients-and-families Mon, 01 Apr 2024 08:49:00 -0400 https://www.rileychildrens.org/connections/picu-nurse-builds-bond-with-patients-and-families By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Grace Ryan came all the way from Los Angeles to go to nursing school at Indiana University Bloomington, and she has never looked back.

“I really liked their nursing program, and I wanted to get out of L.A. for a while,” she said. “I ended up loving it here.”

Ryan, who worked as a tech in the transplant unit at IU Health University Hospital while in school, began her pediatric nursing career at Riley Hospital for Children last August.

A nurse in the pediatric intensive care unit for just eight months, she has already been nominated for and received a DAISY award, signifying exceptional care and compassion for her patients, who are critically ill.

Ryan was surprised with the award last week during the early morning presentation on the PICU.

PICU Grace Ryan wins DAISY

“I was holding back tears,” she said, as she reflected on the patient whose mother had nominated Ryan for the DAISY. “It was really special to me, especially coming from that family.”

The cancer patient passed away, but not before Ryan bonded with her and her mom and helped plan an early birthday party with a mermaid theme.

“In just three short weeks, she got to know me and my daughter so well, and I could feel how much she truly cared from the day we met her,” the patient’s mom said. “She held me while I cried and let me share all my stories … because she knew that made me feel better.”

PICU Grace Ryan wins DAISY

Ryan also was a strong advocate for her daughter, the woman said, taking care of her medical needs while also going above and beyond to care for her in other ways – painting her nails, putting on her favorite movies and rubbing her little head because she loved it.

“I met a lot of nurses in the year my daughter had cancer, and you don’t meet a nurse like Grace every day.”

For Ryan, that patient and so many others will always hold a place in her heart.

And while it’s humbling to be recognized with a DAISY after such a loss, she said, the team around her held her up.

“I have so much support on this unit from co-workers, chaplains, social work and everyone,” Ryan said. “That is a big component of why I feel so at peace. I could not have done it without all of them.”

PICU Grace Ryan wins DAISY

Ryan, who graduated from IU Bloomington last May, was drawn to pediatrics after doing her clinicals at Riley.

“I loved it so much and already knew I liked the ICU.”

As hard as it is, the PICU is the best of both worlds, she said.

Outside of the hospital, Ryan enjoys yoga, cooking and reading.

“I’ve been reading a lot of nursing books and others dealing with death and critical care experiences,” she said. “We deal with that so much, and I want to educate myself more.”

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

]]>
Family reunites with surgeon who saved their babies after TTTS diagnosis https://www.rileychildrens.org/connections/family-reunites-with-surgeon-who-saved-their-babies-after-ttts-diagnosis Sun, 31 Mar 2024 13:07:00 -0400 https://www.rileychildrens.org/connections/family-reunites-with-surgeon-who-saved-their-babies-after-ttts-diagnosis The Berggren family reunited with the team that jumped into action when their twins were diagnosed with a life-threatening condition while they were still in utero.

When Kelli was 18 weeks pregnant, she received the news that the twins were facing twin-to-twin transfusion syndrome. The condition impacts the blood flow between twins who share a placenta.

The parents were quickly referred to Riley Children’s Health, where the fetal intervention team was able to help.

Dr. David Streitman, and the rest of the team, carefully planned and performed a fetal surgery on the babies.

The twins are now five months old and doing well. Kelli, and her husband Justin, made the trip back to Riley to thank the team for all their hard work.

]]>
“It’s important to do what you can for children” https://www.rileychildrens.org/connections/its-important-to-do-what-you-can-for-children Thu, 28 Mar 2024 09:26:00 -0400 https://www.rileychildrens.org/connections/its-important-to-do-what-you-can-for-children By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Dr. Marilyn Bull could easily be swallowed up by the mass of papers, books, awards and photographs that blanket the desk, walls and shelves in her small office.

“I know where everything is,” she says with a chuckle as she surveys her desk. “The highest-priority things tend to be on top, but I really do know what’s on the bottom of the pile. I do.”

A developmental pediatrician for Riley Children’s Health for nearly 50 years, Dr. Bull still sees patients in clinic, still mentors the next generation of physicians and still pours time and effort into her longstanding role as a world-renowned child safety advocate.

Dr. Marilyn Bull

Indeed, among the papers on the top of the pile today are notes for presentations she is scheduled to make at safety conferences around the country.

“I love what I do,” she said, when asked why she keeps up the pace she does when others around her have long since retired. “It’s extremely meaningful, and it’s important to do what you can for children.”

Dr. Bull, the Morris Green professor emeritus of pediatrics at Indiana University School of Medicine, has done more than her share for children, both as a pediatrician for special-needs kids and a proponent of car-seat safety.

She is board-certified in pediatrics, clinical genetics and neurodevelopmental disabilities, but the latter is closest to her heart.

On a recent Friday, she’s just come upstairs to her office from clinic, where she regularly sees patients from many different cultures and with a variety of developmental delays and genetic disorders, including Down syndrome, autism, cerebral palsy and poor growth. She’s also medical director of Riley’s feeding program for children over the age of 1.

FARMING ROOTS

Raised on a farm in western Michigan, she helped put herself through college and later medical school by baking cherry pies, which she sold at her family’s farm market.

That first summer, in 1961, she baked 13 pies a day and sold them for 90 cents apiece. As she got better and worked harder, she was up to 95 pies a day.

That work ethic carried over into her career.

Shortly after arriving in Indianapolis with her husband, now retired physician Dr. Scott Bruins, and their then 10-week-old daughter in 1976, she started a newborn follow-up clinic at Riley, designed to boost survival rates of preemies.

Dr. Marilyn Bull

“In the first three years I was here, we had one death and two permanently brain-damaged NICU graduates, not because of the wonderful care they got in the NICU or issues related to their prematurity, but because we hadn’t put them in what would have been a $25 car seat,” Dr. Bull said. “I just couldn't tolerate that.”

She took those losses to heart and was instrumental in the passage of the first child passenger restraint law in Indiana in 1984, the first seat belt law in 1987 and the booster seat law in 2004, along with colleague Dr. Joseph O’Neil.

She established Riley’s Automotive Safety Program and the National Center for Safe Transportation of Children with Special Needs at Riley, providing curricula and training for instructors around the country. She and Dr. O’Neil are co-medical directors for the Automotive Safety Program.

STILL ON THE GO

“Those who know Marilyn know she never stops,” said longtime colleague and former pediatrics division chairman/physician-in-chief Dr. Richard Schreiner. “She developed the new neurodevelopmental pediatrics section into the largest and best in the country.”

Dr. Marilyn Bull

She has lectured at national and international conferences on traffic safety for kids, published numerous articles and been honored countless times for her efforts to not only save lives but enhance the lives of children, particularly those with Down syndrome.

Dr. Bull, whose interest in that genetic condition began during her fellowship in Boston in the early 1970s, is headed to Phoenix in July for the National Down Syndrome Congress Conference.

Last summer, she received the William I. Cohen Distinguished Service Award for her leadership within the Down Syndrome Medical Interest Group to create evidenced-based guidelines for the health and wellness of children with Down syndrome.

It’s one of dozens of awards and gifts decorating her office, with even more at home, a tribute to her decades of advocacy work on behalf of kids.

Dr. Marilyn Bull

But it’s the photos of her kids and her husband that stand out amid the trappings of a half-century of work. The couple raised two daughters and a nephew and are headed to Denver this week for an Easter visit and birthday celebration (Dr. Bull turns 82), followed by another presentation at the Lifesavers Conference on Roadway Safety.

SO MANY STORIES

Behind the door is a framed copy of an old Clarian Health (IU Health’s predecessor) promotional piece with Dr. Bull front and center. In the corner of a credenza are authentic mukluks and a miniature dog sled given to her after presentations in Alaska. On a bookshelf are tiny replicas of school buses, Riley wagons, bulls and other mementoes that speak to her passions and her sense of humor.

There’s a story behind each one of these items, and she tells as many as she can in a little over an hour, but she could fill days and weeks with the tales of a lifetime of service. And she’s not finished. She is currently working to get better restraint systems installed in ambulances.

It’s never been easy, she says of her work, but it is rewarding, and that’s what keeps her going, even after knee replacement surgery in January.

She still bakes the occasional pie, sings in her church choir and spends the summers up in Michigan, the closest to retiring that she will accept. But during those summer respites, she helps out on the farm and continues to make twice-monthly trips to South Bend to see patients.

That dedication is just one reason colleagues hold her in such high regard.

“TENACIOUS, BRILLIANT”

Dr. Celanie Christensen, division chief of developmental medicine at Riley (formerly known as developmental pediatrics), assumed that role from Dr. Bull several years ago, but she has known the senior physician since 1999, when Dr. Christensen was a graduate student.

“She’s been a longtime mentor. When she started at Riley, I hadn’t been born yet, but her energy, her drive, her passion are unmatched.”

While she’s well-known for her advocacy in the child development and safety space, it’s the little things that stand out the most to Dr. Christensen.

“It’s about being tenacious for each patient. It’s individual patients that I think keep her going. I’ve learned from her how to work harder and work smarter but to never ever forget the person and the family sitting in front of you and what you can do for them right now,” Dr. Christensen said, adding that Dr. Bull rarely takes no for an answer.

Dr. Tanya Abraham started working with Dr. Bull in developmental medicine about two years ago, but she first met the veteran physician in the classroom when Dr. Bull was her professor during medical school.

“I remember her as an excellent teacher 20 years ago, and she still loves it and is very good at it,” Dr. Abraham said. “She’s brilliant, and I’m glad she is still here inspiring the next generation of physicians. It’s important for trainees to see figures like her.”

“ONE IN A MILLION”

The field of neurodevelopmental medicine didn’t exist when Dr. Bull began practicing, so it was up to her to develop treatment plans and problem-solve with patients and families.

“She’s one in a million,” Dr. Abraham said. “What I’d like to take from her is that same dedication to the field of medicine. Even though it’s challenging, she comes in day in and day out and really is present for her patients and families.”

Retirement is not in the cards yet, but Dr. Bull acknowledges that keeping up with technology is a constant challenge.

Yes, she’s on Facebook, no, she doesn’t make TikTok videos, and yes, she used to be active on Twitter before it morphed into X.

Her younger colleagues in Indianapolis and around the world are going to live in the technology world, and that’s appropriate, she said.

“I need to be there if I’m going to be communicating with them.”

When she talks, though, people listen.

Her board memberships and awards are too numerous to mention, as are the stories that go with them, but she finds satisfaction in knowing she has made a difference.

“I hope I’ve helped people.”

Now it’s late on a Friday afternoon, and she has charting to do and presentations to prepare before calling it a day.

“She keeps going because she loves it, and honestly, that’s what I hope for my career too,” said Dr. Christensen, whose office is two doors down from Dr. Bull’s. “Most nights, we’re the last two here, and I check on her before I go.”

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

Related stories:

Riley Pediatrician is ‘Whirlwind, A Tornado, A Positive Force For Good’ - Dr. Marilyn Bull was a pioneer in children’s auto safety. Before car seats were mainstream, she was fighting to get them inside patients’ cars and modifying the seats so children with special needs wouldn’t be left out and in danger.

The Story Behind That Mysterious Quilt At Riley - More than 200 names of children are embroidered onto the 32-year-old quilt that hangs inside the hospital. But who were they?

]]>
Neurodevelopmental specialist makes exemplary contributions for patients with Down syndrome https://www.rileychildrens.org/connections/a-pioneer-in-down-syndrome-work-earns-prestigious-award Wed, 27 Mar 2024 16:04:00 -0400 https://www.rileychildrens.org/connections/a-pioneer-in-down-syndrome-work-earns-prestigious-award Renowned neurodevelopmental physician at Riley Children’s Health, Marilyn J. Bull, MD, exemplifies what it means to be a leader, educator, clinician and researcher in her field. For four decades and counting, she has honed her expertise in the realm of developmental pediatrics, particularly for reshaping and revamping the landscape for children with Down syndrome. Thanks to her work, Dr. Bull is the recent recipient of the William Cohen Distinguished Service Award, an honor established by the Down Syndrome Medical Interest Group (DSMIG) to recognize an individual who has made monumental, multifaceted contributions to the care of people with Down syndrome.

Dr. Bull’s remarkable journey at Riley Children’s, starting in 1976, is characterized by her pivotal role in enhancing the quality of care for children with Down syndrome. As a mentor within the DSMIG, a network of physicians focused on enhancing the care for patients with Down syndrome, Dr. Bull’s most significant achievement lies in her leadership in developing evidence-based guidelines for the condition. This work, in collaboration with the American Academy of Pediatrics, stands as the cornerstone of Down syndrome literature, which has improved the lives significantly for individuals and their families. Ensuring their relevance and efficacy, Dr. Bull has worked to perfect these guidelines, where she’s consistently updated them to further promote the health and wellness of patients with Down syndrome.

“Those who know Marilyn, know she never stops,” Richard Schreiner, MD said, former chairman of the Department of Pediatrics at Indiana University School of Medicine. “She always volunteers her time and expertise to improve the care of people with Down syndrome.”

As well, Dr. Bull’s long-time expertise in developmental medicine extends to much more. Notably, her authoritative review on Down syndrome in the New England Journal of Medicine–the only one ever published in the preeminent journal in medicine–underscores her stature as a leading figure in her field. And despite this profound impact on Down syndrome research, Dr. Bull always remains approachable, compassionate and deeply committed to patients’ overall wellbeing–a testament to her exemplary character and dedication to her craft, according to her colleagues.

“She’s mentored a whole lot of people over the years–medical students, residents, young faculty, the whole range,” Abby Klemsz, MD said, a neurodevelopmental pediatrician at Riley Children’s. “People who’ve grown up become–hopefully–like her.”

Lending expertise in automotive safety for children

Beyond her Down syndrome work, Dr. Bull is a pioneer in automotive safety for children, where she developed the Riley Automotive Safety Program to inform about the imperative automotive safety protocols for kids. Through strategic partnerships and external funding, she catalyzed the establishment of the National Center for Safe Transportation of Children with special needs. To date, Dr. Bull is the person most responsible for getting the first Infant Car Seat Law passed in Indiana, and she has lectured at national and international conferences on traffic safety for kids in all 50 states and 14 countries.

Her efforts combined, Dr. Bull’s notable achievements around developmental pediatrics reaffirm Riley Children’s commitment to excellence as a leader and trailblazer in pediatric medicine. Today, we celebrate her enduring legacy as a neurodevelopmental pediatrician, commemorating her indelible contributions throughout her decades-long career.

About developmental medicine at Riley Children’s

Highly trained developmental specialists at Riley Children’s care for patients with neurodevelopmental conditions, including those who may have emotional or behavioral concerns. Key distinctions include:

  • Home to the only psychologist in Indiana trained in the Early Start Denver Model behavioral therapy program for children with autism
  • Home to one of only eight neurodevelopmental disabilities residency training programs worldwide
  • Access to leading-edge technologies for genetic testing, including exome and genome sequencing

Learn more about Developmental Medicine at Riley Children's.

]]>
Kidney cancer diagnosis leaves family reeling https://www.rileychildrens.org/connections/kidney-cancer-diagnosis-leaves-family-reeling Mon, 25 Mar 2024 17:00:00 -0400 https://www.rileychildrens.org/connections/kidney-cancer-diagnosis-leaves-family-reeling By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Jeremy and Kelsey Frey couldn’t believe what the doctors were telling them.

Cancer? Their daughter has cancer?

Hadn’t they already been through enough?

The couple from northern Indiana had already absorbed three devastating blows – the deaths of three of their quintuplets born prematurely in October 2022 at Riley Hospital for Children.

Their surviving babies were discharged from Riley one year ago this month.

Now, the parents of five struggled to make sense of this latest shattering news.

But then, as parents do, they pushed through.

Gracie Frey Wilms tumor kidney cancer

Gracie Frey, who turned 8 last month, was diagnosed with Wilms tumor, a rare kidney cancer most often found in children, earlier this month.

It started with a visit to her doctor for a wellness checkup March 11. Jeremy and Kelsey didn’t have any reason for concern, but they did wonder if she might have a dairy intolerance because she had complained of stomach pain a few times.

She otherwise looked and seemed healthy, they said, though in hindsight, perhaps there was some mild abdominal swelling.

After feeling the little girl’s abdomen and noting she didn’t seem to have gained weight in two years, the doctor ordered bloodwork and an ultrasound.

Two days later, Gracie got that ultrasound. While her parents waited to hear the results, they moved ahead with another difficult appointment they had scheduled that day – selecting the headstone for the graves of their three babies who passed away.

Before they had even sat down for the appointment, the doctor called with the results. A mass in their daughter’s abdomen, which was pushing on her other organs, was consistent with Wilms tumor. The pathology report would later confirm the Stage 1 diagnosis.

Gracie Frey Wilms tumor kidney cancer

They were told to pack their bags and come to Riley the next morning.

“We had no game plan at that point,” Kelsey said. “We were just trying to process all this.”

They started by trying to explain the news to Gracie, who expects honesty, her mom said.

“She loves to know everything, and she’s so smart.”

What began then was a blur of follow-up scans, consultations and surgery. Ironically, the couple’s two surviving quints, Luke and Avie, had an appointment with their nephrologist at Riley the day after Gracie got her ultrasound. All three kids and their parents made the three-hour trip to Riley, while family members cared for the other children at home.

“Luke and Avie’s kidneys were great, thankfully,” Kelsey said.

But Riley oncologist Dr. Marissa Just met them at the toddlers’ appointment, instructing them to head to the emergency department for another CT scan and ultrasound for Gracie, after which she would be admitted to the hospital, while Jeremy took Luke and Avie home.

Gracie Frey Wilms tumor kidney cancer

Last Monday, just one week after that well-child checkup, Gracie went into a five-hour surgery. Dr. Barrett Cromeens removed her right kidney, along with the massive tumor that had attached itself to the kidney and was compressing her other organs.

When he emerged from the operating room, he told her anxious parents the tumor was bigger than a cantaloupe but smaller than a basketball.

They had caught it early, and surgery was successful, but Gracie, who was able to go home Friday, will need chemotherapy and close monitoring to ensure that any remaining tumor cells don’t mutate.

“It’s so hard to even say the words,” Kelsey said over the weekend. “How are we here again?”

“We are in survival mode again,” Jeremy said.

Meanwhile, they try to stay strong for all of their kids.

“You can’t stop and break down. You have to keep going because your kids need you,” Kelsey said. “But it’s hard. It feels like our family has been through the wringer.”

Gracie has been a trouper, her parents say.

“She’s doing really well. We are struggling to get her to slow down now that we’re home. It’s just so funny how resilient kids are.”

Gracie Frey Wilms tumor kidney cancer

When Gracie’s parents feel their energy flagging, they know they can count on their friends and family, as well as the thousands of prayer warriors who follow their Frey Family Adventures Facebook page, started when they were expecting their quintuplets. That support carried them through the hard times at Riley a year and a half ago, and it continues.

“Jeremy and I were so overwhelmed with emotion when we went on Facebook the night before her surgery and we saw everybody had changed their profile picture to Grace, saying prayers for Grace. They carried us through when we couldn’t carry ourselves through.”

The same can be said for their Riley family.

“The NICU staff that cared for our babies showed up for Grace too,” stopping by to visit and drop off gifts, Kelsey said.

“It was incredible to know that even though our family was three hours away taking care of our other kids, we still had family and support at Riley because of the journey we went through a year and a half ago.”

]]>