"We didn't know if she'd even live and now here she is," Connor Van Farowe said. "She's just a miracle."

Elianna Van Farowe's water broke at 26 weeks and four days pregnant.

"My water broke very obviously in the shower on a Friday evening so then we came [to Riley]," she explained. I was admitted onto the antepartum unit with the expectation that I would stay here for eight weeks to keep Selah inside as long as possible."

But after five days, Elianna Van Farowe found herself in labor for a second time. Just as the team did when she was first admitted, they tried to slow her labor down with medication, yet she continued progressing rapidly.

"Within about two and a half hours I progressed from not being dilated at all to being 10 centimeters dilated and complete," she said. "She also flipped somewhere along the lines to then she was breach. So, as [Selah's] progressing, I'm progressing, they realized okay we need to do an emergency c-section because she is ready to come out but she can't come out like this."

With a quick goodbye to her husband, Elianna Van Farowe was whisked away to the operating room. Selah was born that night on June 3.

"It just became very evident that from the moment that my water broke, like he said, we were not in control," Elianna Van Farowe said.

Connor Van Farowe said the whole situation, along with their current stay in the NICU in the Riley Maternity Tower, reaffirms his Christian faith. "We definitely had to just get on our knees and pray a lot and trust that the Lord's plan was good," he said.

Elianna Van Farowe described feeling peace as she arrived at Riley.

"We were able to just let it go and 1. Trust, this is a wonderful facility, so grateful that we could be here," she explained. "The doctors, the nurses, the therapists, the [respiratory therapists], everyone has been excellent. So we can trust the humans, but we can more importantly trust the Lord who's working through those humans."

Elianna Van Farowe already trusted the great care Riley provides. After all, she is a nurse in the stem cell transplant unit.

"It's nice to have that familiarity," she said. "Some of the people working here, like some of the resource nurses, I've worked with them before so to get to share Selah with them has been really sweet."

Connor Van Farowe is also a pediatric nurse at a nearby hospital. He just returned to work three weeks ago.

"This situation is such a gift to me also working in pediatrics; it's just made me a better nurse," he said. "I've just already noticed the ways it's changed the way I practice. I could sit outside the nurses' station on my phone when I see a family walk in, or I could go talk to them, update them on their kid like so many of the nurses here have done with us."

While watching your baby's life begin in the NICU is difficult, the Van Farowes said their experience helps them find joy even during the hardest days. For example, the couple refers to this chapter as Selah Jean's NICU Scuba Adventure.

"When we first saw her isolette and then her CPAP mask at the time, just like her respiratory mask, I was like it looks like she's scuba diving and this is her submarine," her mother explained. "It just lightens everything and just reminds us that we don't have to take it all so seriously, it doesn't all have to be so intense. I'm now considering making her nursery at home like under the sea themed. I think it's just her vibe now."

From the hardest times to now, the Van Farowes explained reading the Book of Psalms brings great comfort.
"The Psalms are like a rock to us," Elianna Van Farowe said. "They're just a wonderful way to cry out to the Lord in rejoicing but also in lamenting and confusion."

It is even the place in the Bible where they found inspiration for Selah's name.

"Selah, it comes from the Psalms," she explained. "It's something that means to pause or reflect. We're hopeful that her name can just remind us to sit and reflect on the Lord's faithfulness in the high risk OB, from my water breaking, to the emergency c-section, to everyday in the NICU from when she was really up and down in the beginning to many more stable days which she's still in the ICU and she's still a tiny girl, there's just so much to reflect on and to know that the Lord is really faithful."

The Van Farowes do not know what tomorrow holds, but as they lean evermore into their faith, they are ready for whatever life throws their way.

"We're grateful our daughter is safe," Elianna Van Farowe said. "We would not wish an emergency c-section or a NICU stay on anybody, but we wouldn't change it for ourselves because it's been a way that the Lord has just made us really rely on Him and that is a gift."

What Is the Ketogenic Diet?

The ketogenic diet is a specialized medical diet that is high in fat, moderate in protein, and very low in carbohydrates. Unlike popular “keto” diets for weight loss, the ketogenic diet for children with epilepsy is carefully calculated and closely monitored by a medical team.

Under normal conditions, the body uses carbohydrates as its primary energy source. The ketogenic diet limits carbohydrates so the body shifts to burning fat instead. This process produces substances called ketones, which become an alternate source of energy for the brain.

The Ketogenic Diet and Epilepsy

Research shows that for some children, ketones can help stabilize brain activity and reduce seizure frequency. This is especially true for children with drug-resistant epilepsy, defined as ongoing seizures despite trying at least two appropriate antiseizure medications.

Studies over decades have shown that many children on ketogenic diet therapy experience meaningful seizure reduction. More than half of children see a 50% reduction in their seizure rate, while others may achieve seizure freedom (National Library of Medicine). In addition to seizure control, families sometimes report improvements in alertness, attention, or overall quality of life.

Is the Ketogenic Diet Safe for Kids?

When used under medical supervision, the ketogenic diet for children with epilepsy is considered safe and effective. Because an epilepsy diet involves careful nutrient balance and monitoring, it should only be started under the guidance of an experienced medical team.

Potential benefits for children may include:

• Reduced seizure frequency
• Improved seizure control when medications alone are not effective
• A non-surgical treatment option for some families

Like any medical therapy, the ketogenic diet can have side effects. Possible risks may include constipation, reflux, low blood sugar, changes in cholesterol levels, kidney stones, or slowed growth if nutrition is not carefully managed. At Riley Children’s, children on ketogenic diet therapy are closely monitored with regular check-ins, lab work, and nutritional assessments to help prevent and manage side effects early.

Expert Opinions and Research

The ketogenic diet is supported by more than a century of clinical use and extensive modern research. Pediatric neurologists and epilepsy specialists continue to study how dietary therapies affect brain metabolism and seizure control.

Today, international epilepsy guidelines recognize ketogenic diet therapy as an evidence-based treatment for drug-resistant epilepsy. Ongoing studies show that modified versions of the diet—such as the modified Atkins diet—may offer similar benefits for some patients with fewer restrictions.

At Riley Children’s, nutrition-based treatment for epilepsy is managed by a dedicated team that includes pediatric neurologists and registered dietitians with specialized expertise in ketogenic diet nutrition therapy. This team approach ensures decisions are guided by the latest research and tailored to each child’s needs.

Practical Tips for Parents

If your child is being considered for ketogenic diet therapy, there are several important steps to ensure safe implementation.

1. A thorough evaluation helps determine whether the diet is appropriate. This includes reviewing seizure history, current medications, and nutritional needs. Families receive education and step-by-step guidance before the diet begins.
2. Once started, children are monitored closely for seizure response, growth, lab values, and overall tolerance. Adjustments can be made to the diet ratio, meal plan, or supplements as needed.
3. Most families begin the diet at home with outpatient support, allowing for a gradual and flexible transition. Parents are encouraged to communicate regularly with their care team and report changes in seizures, energy levels, or side effects.
4. Support and education are ongoing throughout the process. Families on ketogenic diet therapy at Riley Children’s have access to parent support groups, ongoing education, and specialty newsletters, helping families stay informed and connected beyond clinic visits.

The ketogenic diet has a long history as a treatment for epilepsy and for some children, it may be the best diet for epilepsy when medications alone aren’t enough. When guided by an experienced care team, ketogenic diet therapy can reduce seizures, improve quality of life, and provide hope for families seeking additional treatment options.

Riley Children’s offers a comprehensive epilepsy program with expertise in ketogenic diet therapy, advanced diagnostics, and personalized care planning. If you think the ketogenic diet may be right for your child, talk with your neurologist or request a referral to the Riley epilepsy team.

Brooks was diagnosed with cancer in his spinal cord in 2021. His mother, Courtney Brooks, said the then-3-year-old boy came into her room complaining of severe stomach pain. After multiple trips to the emergency room and no answers, Courtney Brooks spent months in and out of specialists' offices.

Finally, her son's primary care provider decided to "start from the beginning" with a physical.

"While she had him bent over, touching his toes, I noticed that his spine looked a little curved and so I pointed it out to her," Courtney Brooks said. "She's like, actually it does look like it's a little curved. Let's send him for an x-ray."

From there, an orthopedic surgeon took a look and referred Winston Brooks to Riley.

"[The doctor] said, 'That's not normal for a three-year-old to have scoliosis like this; we need to look further into this,'" Courtney Brooks recalled. "In July of 2021, we had the MRI on Winston's spine and that day it showed that he had cancer in his spinal cord."

The team at Riley decided to remove some of the tumor on Winston's spine to send off for testing.

"They were able to remove some of it but not a lot of it because it was meshed into his cord," Courtney Brooks explained. "That would have done a lot of damage to mess with the spinal cord too much, so they got what they could, they sent it off and it ended up being a low-grade, grade two, glioma astrocytoma, which is technically a brain cancer but it metastasized in his spinal cord."

The location of the tumor makes it impossible for doctors to completely remove it.

"They cannot remove 100 percent of his tumor because it is on the motor track of his spinal cord," Courtney Brooks, his mother, said. "So, if they did, he would be a quadriplegic."

Not long after surgery, Winston Brooks began IV cancer treatment, but sadly it was not working.

"It was just a hard time and at that time we decided to change things up and they said, 'We have a clinical trial for you if he can swallow a pill,'" Courtney Brooks explained.

Winston Brooks' grandmother actually taught him how to swallow a pill so he would be ready for oral treatment.

"His grandma actually helped a lot, teaching him how to swallow a tictac," Courtney Brooks explained.

That clinical trial involves patients taking the pill, trametinib.

"Thankfully because the science of understanding the majority of low-grade gliomas have a DNA mutation called a BRAF fusion, we were able to get him an oral medicine called trametinib that is taken once a day by mouth," Dr. Alex Lion, pediatric neuro-oncologist, explained.

Thankfully, the pills shrunk the tumor. With his doctors' blessing, Winston Brooks got to take a short break from treatment.

"About six months ago, we came off that break, and he got put on a new chemo," Courtney Brooks explained. "A new clinical trial."

That clinical trial is for the oral treatment, tovorafenib.

"The beautiful thing with these newer medicines, tovorafenib, it's a medicine taken once a week," Dr. Lion explained. "Again, at home; much less side effects than standard IV chemotherapy."

Dr. Lion is encouraged by and excited about the future for pediatric patients battling cancer.

"It's an exciting time to be an advocate, someone that gets to walk alongside these kids to be their neuro-oncologist," Dr. Lion said. "We're getting to witness within our lifetimes a big transition. When he started treatment, over 50% of kids, the majority, 75% of kids were getting IV chemotherapy as their main treatment. Now it's close to 75% are probably getting oral targeted therapy for their treatment."

For Winston Brooks, his mother never stopped seeking answers about the root of her child's stomach pain. She and Dr. Lion encourage parents in similar situations to do the same.

"A mother's intuition can be just as much of a powerful diagnostic tool as an MRI," Dr. Lion said.

It was a quarter-century ago, before Nikki Ayala was even born, that a roadmap for her future began to unfold.

Ayala’s older sister, Jessica, was born with cerebral palsy and later diagnosed with autism while the family was living in Colorado.

Because her parents were originally from Indianapolis, they knew Riley Hospital for Children’s reputation and chose to move back to the area to seek care for their baby girl.

When Ayala was born a few years later, a big part of her life was spent at the hospital where her sister received treatment. Jessica had years of physical, occupational and speech therapy, and Ayala went along for the ride – literally.

The People Mover (which shut down in 2019) was a favorite mode of transportation, as were the famous Riley wagons (still in use today).

In fact, the sisters recreated one of those Riley wagon rides recently when they returned to the hospital for a photo shoot.

“She is the most hard-working, loving and genuine person I know,” Ayala said of her sister. “Riley truly changed her life.”

The impact was lifechanging for Ayala as well. That’s because she is now weeks away from her dream job as a nurse in the pediatric intensive care unit at Riley.

“Now, close to entering my career as an RN in the PICU, my mom likes to say that everything has come full circle, and this is where I'm meant to be,” she said. “I could not agree more.”

Ayala, who first went to college in Michigan on an ice hockey scholarship, figured out in her first year that athletic training was not her passion.

“I knew I wouldn’t be able to make as big of an impact as I would in nursing,” she said.

So she moved back to Indianapolis and graduated from Marian University’s school of nursing in May. She begins her job as a nurse on the PICU July 28. But she’s been part of the PICU team for 2½ years as a patient care tech, as well as a patient care intern, working one-on-one with a registered nurse.

“I have learned more in the past 2½ years than I could have ever imagined, through interactions with patients, their families, and learning from every member of our team.”

This is what she is meant to do, she said. Working with pediatric patients in a critical care setting is the perfect fit.

“There’s just something so special about pediatric patients and the way they are able to bounce back and just be kids even when they’re dealing with illnesses as severe as those we see in the ICU,” Ayala said.

As she prepares to step into her new role, Ayala is thankful for the example her sister set for how to work hard in the face of difficulty and to lead with kindness.

“Nursing can be both emotionally and physically challenging, but I truly think there is no better place for me, or any new graduate interested in pediatrics, to be than Riley,” she said.

“Every opportunity that Riley will offer me will undoubtedly push me to become the best registered nurse I can be.”

Photos by Heather A. Schrock Photography

Signs of depression and anxiety

Symptoms of depression in children may include:

• Changes in sleep patterns, including needing more sleep or getting less of it
• Difficulty concentrating or feeling that easy tasks are difficult
• Loss of interest in favorite toys, games, activities or friends
• Changes in appetite, including loss of appetite or eating more
• Irritability, frequent anger or other mood changes

Depression and anxiety often go hand-in-hand. In fact, experts estimate that up to 85 percent of those with one condition will show symptoms of the other.

Your child may suffer from anxiety if he or she shows the following symptoms:

• Feeling constantly tense, worried or on edge
• Crying at school, having behavioral problems or changes in grades
• Feeling persistent, irrational fears, like missing the bus, forgetting homework or having a pop quiz
• Believing something bad will happen if things aren’t done a certain way
• Avoiding everyday situations or activities because they cause anxiety

Depression and anxiety can also cause these physical problems:

• Stomach upset or nausea
• Frequent urination or diarrhea
• Headaches
• Fatigue
• Trouble sleeping

What's negatively impacting your child's mental health

Be especially attuned to your child during times of change. Moving and changing schools, losing a friend or loved one, or breaking up with a boyfriend or girlfriend can trigger depression or anxiety.

On average, one in four children in the U.S population meet the criteria for a lifetime mental disorder. It is important to make sure that you are proactive in protecting your child’s mental health and aware of damaging everyday influences. While it is important to provide your child with the necessities, such as a loving home, positive reinforcement and a healthy diet, there are a handful of factors that usually go unnoticed and can have a negative impact on your child’s mental health.

Sugar

While the negative effects of a sugar-rich diet on your child’s physical health are widely known, the effects sugar has on a child’s mental health often go unnoticed. A diet too high in sugar can contribute to a variety of mental issues, including depression, addiction, anxiety and problems with learning and memory.

Non-descriptive praise

Praising your children is never a bad thing; however, your child’s mental health can benefit exponentially from you specifically telling them what you want them to do instead of saying what you want. Even the use of sticker or star charts can help reinforce specific, desirable behavior, lifting your child’s confidence and encouraging good mental health.

Health problems with family members

When a child is exposed to a family member or loved one with an enduring health condition or sickness at home, they are often unable to cope with the stress and reality of the situation. This type of stress is called toxic stress and can affect the way a child’s brain develops. This is often difficult to handle when dealing with a loved on who is dying but parents who can recognize this issue early should schedule play dates, take their kids out for activities and attempt to spend as much time away from the source of toxic stress at home.

Low exposure to "positive stress"

Positive stress is derived from small, everyday challenges in your child’s life such as small failures, nervousness or slight fear. These everyday interactions draw positive stress responses from your child and while they may cause him or her a small amount of stress, it also teaches crucial coping mechanisms that will provide the foundation of durable mental health.

Infections

Infections and viruses such as strep have been linked to sudden onsets of Obsessive Compulsive Disorder and other behavioral problems following treatment in children. This remarkable link between virus and mental issues has been named PANS or Pediatric Acute-onset Neuropsychiatric Syndrome. To combat PANS, you should be proactive in getting infections and viruses treated as quickly and as thoroughly as possible.

When to call the doctor

Talk to your child’s teacher and school guidance counselor to see if they have noticed any changes in behavior. Your pediatrician or family doctor is also a great resource. Behavioral health professionals can help determine whether there may be an underlying medical issue or developmental challenge that could be causing your child’s symptoms.

It's important for parents to watch for signs of serious health concerns or a mental health crisis. You can seek help through Riley Children's Health psychiatry at several Indiana locations. If you think your child is an immediate danger to themselves or to others, it's time to call 911 or go to the nearest emergency room.

If you are unsure whether your child's behavior requires emergency care, you can dial 988, the Suicide & Crisis Lifeline. This hotline helps assess your situation and plan the next steps.

"I've never regretted it," Haddix said. "It's the best job in the world. I could have retired five years ago and here I am still working. I just can't give it up."

Haddix graduated from Depauw University in 1976 with a degree in microbiology, and she started working in a research lab at IU Health on June 7, 1976.

"I loved the science of it; I loved being on the cutting edge of research," Haddix said.

But she felt a pull toward patient care and decided to return to school to pursue nursing, while also working part time in the research lab. She got her first nursing job at Riley in 1987 and never left.

When asked why she decided to go into nursing, she said her inspiration came from her father.

"My dad was an MD," Haddix explained. "He died when I was young. When I started at Riley, my office was in the older part and I could just imagine, he's been here, he's gone up these steps, just like I have. I felt like I was carrying forth my father's legacy. Plus, my younger brother was a Riley kid."

Haddix explained how early in her nursing career, children receiving care at Riley were grouped by their ages and not by their diagnoses.

"So, we got patients with heart problems, with urology; we had orthopedic patients," Haddix recalled. "We had cancer patients and I sort of gravitated to the cancer patients because we saw them over and over for admissions. We developed relationships with those patients so I really kind of gravitated to that."

Eventually, Riley changed its patient care model from age-based to service-based units. When an opportunity presented itself for Haddix to care for patients receiving cancer treatments, she took it. She then went on to achieve her nurse practitioner license.

"I think her assessment skills are innate," Deb Wagner, fellow long-time Riley nurse practitioner said. "She does not need the computer or a flow or a Venn diagram to tell her that something's not right. She has a very keen sense when things are not right with the family or with the patient. I think she's one of those people that will number 1, show their kid a magic trick. Number 2, explain every question you ever had about anything on that lab report or what it means or what's coming next."

For many patients, planning for life after cancer is what comes next. Haddix plays a pivotal role in the survivorship clinic at Riley.

"I see patients that are on treatment; I understand that aspect of it," Haddix explained. "How difficult it is and some of our treatments are pretty brutal. I also do the long-term follow ups so I see patients five, 10, 20 years after they're out of treatment and for the very most part they're thriving, they're living, they're graduating from college. So I get to see the end result of what we've done when they were children. It's such a good balance."

Haddix said being a part of patients' lives in such a significant way that they are trusting her to walk with them through their cancer journeys is an honor.

"You are really let into their inner orbit, get to know their family, their stuffies, their favorite blanket, and it's a real privilege to be a part of other people's lives," Haddix said. "It's wonderful."

As Haddix prepares for retirement next summer, she said the people she works alongside have made a monumental impact on her.

"I do think it takes a special person to work with kids with cancer, and I will say without exception, the people I work with are absolutely wonderful," Haddix shared. "I would put my child's life in any of my co-workers' hands."

"We had no idea that any of this was going to be in our lives," Sylvia said while holding her precious baby, Johnny, in Riley's Simon Family Tower NICU on Thursday. "We had normal ultrasounds; we had multiple ultrasounds. And nothing was caught, nothing was abnormal, so it was definitely a shock when he was born."

Johnny was diagnosed with congenital diaphragmatic hernia (CDH) after birth, which, as Johnny's father, Levi, explains is rare.

"Our understanding from talking to the doctors up here is this is almost always prenatally diagnosed," Levi explained.

Dr. Isabella Eiler explained what that diagnosis means.

"Congenital diaphragmatic hernia is a defect that is in the muscle that separates the abdominal cavity from the chest cavity," Eiler explained. "It allowed his organs to come up into his upper chest cavity, and so that takes up space where the heart and lungs normally develop and it can cause the lungs to not develop as appropriately and large as it should. But luckily your lungs continue to develop until you're even seven years old."

Johnny was born in Evansville. Levi said shortly after Johnny came into the world, he and Sylvia sensed something was wrong.

"So we advocated for him," Levi explained. "The nurses agreed; they knew something was off with him too but couldn't quite pinpoint it. They decided to monitor him for about an hour and during that time, Sylvia and I kind of dozed off in our room. We were in a deep sleep and the doctor comes in and tells us, 'your kid's organs are up in his upper chest cavity. We had to intubate him and he has to go to Riley.'"

The next several hours were extremely intense as Levi headed north to meet emergency crews at Riley and Sylvia remained at the hospital where she delivered merely hours earlier to recover.

"The doctor actually pulls me in from the waiting room and sits me down and tells us that there's about a 50 percent survival chance. And I was like, what," Levi explained.

During surgery, Riley doctors discovered Johnny had a Type C defect.

"They were surprised to see that he was a Type C defect which means that 50 percent or more of his diaphragm was missing entirely," Levi explained.

Levi explained that doctors patched the hole up with a special material because it was too large to stitch.

"It's a GORE-TEX patch which is a material they use for waterproof boots," Levi explained "They actually patch over that hole because it's too big to stitch up and it bridges over it."

The Lefferts thought they were out of the woods but the next day brought another round of intense fear for their little boy's health.

"About 9:30 at night, I actually stepped out into the hallway and I called my parents and I called her parents and I said, 'hey, I just want to prepare you in case something happens because I feel like something's going to happen because he's not doing good,'" Levi explained. "About a half hour later, his oxygen just drops! Rapidly. Thankfully the amazing team of nurses, doctors, respiratory therapists, all of them, nurse practitioners, there must have been 10, 12, maybe 15 people in here and they're all working together like a well-oiled machine and his color started coming back. His O2 started coming back up. What they did was amazing. We witnessed a miracle that night."

Now, two and a half weeks after birth, Johnny continues to grow and get stronger. He no longer needs a ventilator to support his breathing rather a nose cannula.

"He's been doing awesome and we'll just slowly chip away at that to get him breathing room air like you and I breathe and getting him to a good spot to get to go home," Dr. Eiler explained.

Sylvia said she is forever grateful for the care her son and her family have received from Riley.

"They've just been just the most amazing people here," Sylvia said.

Levi echoes those sentiments and gives gratitude for God's presence on this difficult road.

"Credit goes to not only the medical team but to the greater man God himself too," Levi said. "I think that this experience has really strengthened our faith."

Asher Organ doesn’t miss much going on around him. The 6-month-old son of Clay Organ and Caitlen Jones tracks voices and movement and is quick with a smile, a wiggle and a giggle.

His easygoing demeanor belies his difficult entrance into the world, starting with a 20-week anatomy scan in September that indicated he had spina bifida, a neural tube defect where the spinal canal and backbone do not close properly before birth, resulting in abnormal spinal cord development.

Left untreated, the condition can lead to lifelong complications, including hydrocephalus (fluid in the brain), leg weakness, bowel and bladder dysfunction and learning difficulties.

Jones, a nurse herself, did her research and transferred her OB care to the fetal medicine team at Riley Children’s Health, where the state’s first successful minimally invasive in utero repair of myelomeningocele – a severe form of spina bifida – was performed last year.

Since then, Dr. Hiba Mustafa, director of Riley’s fetal surgery program, and Riley neurosurgeon Dr. Jason Chu have performed the procedure 11 times. It is most often scheduled between 24 and 26 weeks’ gestation.

The team operated on Asher in October, when he was 25 weeks along in the womb.

“They were absolutely incredible,” Jones said of the surgery team. “Extremely supportive.”

Born on Christmas Eve 2025 at 34 weeks’ gestation, Asher is the Greenwood couple’s first child. His back was completely healed from the surgery when he was born, Jones said, and so far, he has not required a shunt to drain fluid from his brain.

“The surgery reduces the risk of the baby needing a shunt when they’re born, and it helps preserve whatever movement they have,” she said. “He has good movement, other than weak ankles.”

Riley is one of only a handful of hospitals in the country that began offering the less-invasive, pioneering MMC procedure last year.

“Our center at Riley Hospital for Children is the only one in Indiana offering fetal surgery for myelomeningocele (spina bifida) and the only program in the Midwest performing the most minimally invasive fetoscopic repair,” Dr. Mustafa said.

The innovative technique uses the smallest maternal skin incision, followed by placement of a fetoscope through tiny ports in the uterus, reducing maternal morbidity while providing state-of-the-art fetal care.

Asher, who spent 22 days in the Riley NICU, is doing well at home, though he continues to be closely monitored by the neurosurgery team at Riley. He also visits the spina bifida clinic at Riley and started physical therapy this week.

Last week, he and his parents saw Dr. Chu and Dr. Mustafa in the Riley Outpatient Center, where Dr. Chu examined Asher and discussed his progress, attempting to ease the couple’s concerns about the potential for their baby to develop hydrocephalus.

“We are watching him closely for symptoms of hydrocephalus,” Dr. Chu said. “We see the fluid spaces in the brain (ventricles) are larger than anticipated on his scans, and his soft spot (on his head) goes back and forth in terms of feeling a little full. But we’ve learned that having big fluid spaces is not the threshold for treatment in babies that underwent fetal surgery for myelomeningocele. Importantly, we also watch for symptoms that come along with big fluid spaces before we move forward with treatment.”

Those can include frequent vomiting, unusually large head, sleepiness and downward-facing eyes, also known as sunsetting.

This is the first time Dr. Mustafa has seen Asher since he was born, but Jones has kept her in the loop with photos and videos.

“You are so cute. I think he remembers me,” the surgeon said as she reached out to hold the baby, who weighs 18 pounds. His birth weight was 5 pounds, 6 ounces.

Jones comes to every appointment with questions perhaps only a nurse would know to ask.

“Being a nurse has helped a lot,” she said, “but it’s a blessing and a curse.”

Although she now works on a cardiac unit, she previously worked in an emergency department, “so my mind always jumps to the worst.”

A repeat MRI in a few weeks will offer a comparison to previous scans when Dr. Chu next examines Asher, but any treatment – whether that be a shunt or an ETV (endoscopic third ventriculostomy, a minimally invasive brain procedure used to treat hydrocephalus) – won’t be based solely on pictures, he said.

“The most important thing is what Asher is showing us, and right now he’s doing very well. But we will have to keep a close eye on how he is progressing as he grows and determine if we need to make changes as he gets older.”

To qualify for the MMC surgery:

Mothers must be at least 18 years old; the fetus has a myelomeningocele lesion located between T1 and S1; the fetus is between 19 and 26 weeks + six days of gestation; mothers have a body mass index of less than 40 kg/m2 and have no uncontrolled maternal health conditions; there are no other associated severe fetal anomalies.

Learn more here.

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

"It is a privilege to be able to do this work," Tsangaris said. "As I'm seeing these patients for the last time, it's sad. It's hard for me as well as the parent. And so, the moms are thankful, but several of them have expressed to me how scared they were when we first met, and now they feel confident. It has totally flipped. They're not scared anymore when their kid gets sick. They know exactly what to do. I'm real proud of that, I really am."

Jordyn Moses, a mother whose son is a longtime patient of Tsangaris, echoed those sentiments. She brought her son, Sage, to Dr. Tsangaris when he was a toddler and now he's a lively young boy.

"There's nothing like a good doctor," Moses said. "Good doctor is an understatement. He is a godsend. He's a blessing."

Dr. Tsangaris said the responsibility is not lost on him.

"You have parents come to you and they sort of hand you their most prized possession: their kid," Tsangaris said. "They don't know you from Adam and now they hand you their kids and trust you to fix it. That's an awesome responsibility."

Tsangaris said two things top his list of what he will miss most: his team and listening to stories.

"What we do is we listen to stories all day long," Tsangaris explained. "Every kid that comes in here has got a story; every parent that comes in here has got a story. The visual I describe to parents is that every kid that comes in here is a 100-piece jigsaw puzzle. The parent, and it's usually the mom, is the only person on the planet that has the pieces of the puzzle. She doesn't have the picture; she's got the pieces and all of the pieces are up in her head. My job is to get the pictures."

Moses said she will certainly miss seeing Dr. Tsangaris, but she said the impact he has made on her family will live on.

"Life is just a little bit sweeter because we crossed paths with him," Moses said. "We love you, Dr. Tsangaris! We just wish him the best."

Leave it to the pros. The safest way to enjoy fireworks is to attend a show run by licensed professionals.

If you do plan to use fireworks, follow local laws and restrictions. Especially the firework type, amount, and times allowed; and only when outside in a clear area away from buildings, dry grass, and flammable items.

• Be mindful that fireworks and loud noises can traumatize some people and pets.
• Know where your items are. Do not leave your lighter or ignition sources and fireworks where children have access to them.
• Have fire extinguishers, buckets of water or a hose nearby and soak used fireworks before discarding.

Only responsible adults should use and light fireworks.

• Alcohol and fireworks do not mix.
• Never point or throw fireworks at people, pets, buildings, or vehicles.
• Keep fireworks on a hard, non-flammable and level surface.
• Light one at a time and step away.
• Never light a firework while it is being held or try to relight or pick up a “dud” that didn’t go off.
• Keep safety gear in mind. Wear eye or safety glasses, clothing that is not loose or hanging, tie back long hair or beards, closed toe shoes, and consider heat resistant gloves.

Keep children at a safe distance and out of possible range if the firework misdirects.

Use glow sticks, LED wands, or other non-heated celebration items if possible.

• Sparklers burn at temperatures of 1,800 to 2,000⁰ F and account for more than half of firework associated injuries in children under 5 years of age, according to the Consumer Product Safety Commission 2023 Fireworks Annual Report.
• Even after they go out, sparklers can retain heat and can cause burn or injury from their sharp metal wires.
• Keep a bucket of water nearby and soak used fireworks before discarding them.

What should you do if an injury occurs?

For life-threatening emergencies, call 911. If your child needs emergency care, visit the nearest emergency department. You can find 24/7 pediatric emergency medicine services at one of our three Riley Children’s Health emergency locations. Our emergency department in downtown Indianapolis is also home to Indiana’s longest-standing Level I Pediatric Trauma Center and our American Burn-Association (ABA)-verified Burn Program.

For more firework safety tips, visit the following websites:

• American Burn Association
• US Consumer Product Safety Commission
• Fireworks Safety Tips - National Safety Council
• National Fire Protection Association Fireworks Safety Tips (PDF)

The information in this blog was medically reviewed by the Burn Program at Riley Children’s Health. Indiana’s only American Burn Association (ABA)-verified burn center dedicated to serving children.

Dr. Jim Lemons still remembers one of the sickest premature babies he ever cared for in the NICU at Riley Hospital for Children.

It was 20 years ago, and her name was Molly. She was a 23-weeker who weighed a pound and a half, and he was certain she would not survive.

“She had every complication you could imagine,” he said.

If she did survive, she most certainly would never walk or talk, he thought.

He was never so glad to be proven wrong.

In May, he celebrated Molly’s high school graduation with her parents, Myra and Joe Hess. The couple credit Dr. Lemons for never giving up on their little girl, who went on to walk and talk and sing and create and is now preparing to study photography and visual arts in college.

As he tells the story, he wipes tears from his eyes. Anyone who knows him understands that this is who he is.

“I do this all the time,” he chuckles, grabbing a tissue.

It’s his heart on display.

“Dr. Lemons thinks of others in all that he does,” Myra Hess said, recalling how his care for their daughter in the NICU expanded to include them as well.

For him, it is a privilege caring for people in their darkest times, he said. “Who else in the world gets to walk beside people in their deepest, most sacred journey?”

A minister perhaps. A profession he considered, but medicine won out.

WALKING EACH OTHER HOME

If you’re lucky, you meet people in life who make you feel hopeful for the world. Dr. Lemons is one of those people.

Unfailingly kind and generous with his time, the longtime physician, teacher, adviser, mentor and humanitarian sees the value in everyone he encounters and strives to make connections, whether in a patient’s room, a classroom, a coffee shop or an airport.

“We’re all just walking each other home,” he likes to say, quoting author and spiritual teacher Ram Dass.

Dr. Lemons, who is retiring this month after a 48-year career as a neonatologist at Riley Hospital for Children, is beloved by colleagues and families for his clinical skills, his tender care for the sickest babies and his compassion for their parents.

“A tireless servant leader and an unceasing advocate for newborns and their families. A giant among giants.”

That’s how one colleague, Dr. Kristen Suhrie, describes him.

“He has worked to level the playing field for the care of critically ill newborns here in Indiana and across the globe, ensuring that no matter where a baby receives care, it's the best care they could receive,” she said.

“He has built capacity through mentorship, and I have benefited greatly from the foundation he has laid here at Indiana University and Riley. I have never met someone who has shared only kind and thoughtful words with everyone he encounters, even when he himself is carrying a heavy burden.”

A CALMING PRESENCE

The 81-year-old, who has divided his time between Riley and Eskenazi Hospital for the past several years, has learned over time that his joy is found in relationships, in building connections.

“I feel so lucky having been here for 48 years because I’ve taken care of grandparents, their children and their grandchildren in the NICU.”

He was called over to University Hospital many years ago to calm a mother as her daughter was giving birth to a 32-week gestational baby. That soon-to-be grandmother was distraught because she gave birth to her daughter at 32 weeks decades earlier and her daughter was born with severe cerebral palsy. With advances in medicine, however, there was little risk of the same outcome for her granddaughter, Dr. Lemons assured her.

“The trauma of going through that with her daughter was overwhelming her, but she did fine,” he said.

That calm reassurance is something he brings with him into every patient room. Longtime NICU nurse Jo Curtiss saw it firsthand.

“He’s always had a gentleness about him and a calming effect on families.”

The Chicago-area native, who grew up with two working parents and four brothers, learned about kindness, fairness and hard work from his parents and took those principles into adult life. He attended Princeton University on scholarship, where he played tennis, then went to Northwestern University for medical school, University of Michigan for a pediatrics residency, followed by his neonatology fellowship in Colorado.

That’s where he met Dr. Richard Schreiner, and the two reunited at Riley in 1978 when Dr. Lemons joined the neonatology team.

“We thought we’d be here five or 10 years, then move on to a different medical center,” Dr. Lemons said.

BUILDING A PROGRAM

Lucky for Riley babies, as well as NICUs around Indianapolis and the state that now are supported by Riley physicians, he never left.

He went on to lead the division and leave his mark in many ways, including establishing the first NICU family support program in the state, helping launch universal newborn hearing screenings, and contributing to a major drop in infant mortality by introducing surfactant as the standard of care for preemies around the world.

“Jim is the best of the best,” Dr. Schreiner said of his friend and longtime colleague. “He is a master clinician, teacher, researcher, role model, mentor, patient and family advocate, program leader and human being. I think what sets Jim apart from the other top 1% of physician leaders is his passionate concern, advocacy and action for those less privileged.”

He wears his heart on his sleeve, literally, as captured in a photo with Dr. Schreiner, the two sporting matching Riley wagon tattoos on their arms years ago.

Much like Dr. Schreiner, Dr. Lemons is a talker – in a soft-spoken way. And he has stories that can go on for hours. He starts one, only to be swept up into another and another, making it difficult to remember the original question.

The many facets of his life are captured in photos that cover the walls of his small office: family photos and sketches featuring his wife, retired neonatal nurse practitioner Pam Lemons; their three adult children and two grandchildren; adopted Kenyan daughter Joy; along with artwork marking his travels; even his claim to fame in the golfing world – the last hole in one on the original fifth hole at Pebble Beach in California. Of course there’s a story there. And if you ever bump into him, you can ask him about it.

What you won’t see on the walls are many awards, despite Dr. Lemons being a most accomplished physician, visiting professor at more than 70 universities and author of some 300 articles and book chapters. Those are packed away. Recognition in that sense was never the point.

MAKING CONNECTIONS

What he treasures are letters from parents and former patients, and he has hundreds, perhaps thousands, dating back decades. It’s stories like those, personal stories of patients, that can teach us how to be better humans, he said.

“I love being able to connect with people, to listen and to really see them,” he said.

It’s advice he gives to his medical students. Listen to that mom or dad for a few minutes while they tell their story, he urges. And before leaving the room, say something kind and smile.

“I don’t know if you can teach empathy, but you can model it. It’s as simple as caring for one another. During our relatively short lifespan here on Earth,” he said, “we should be seeing and listening and caring for one another, be more accessible and less judgmental.”

Dr. Laura Haneline, division chief for neonatal-perinatal medicine and interim chair of the Department of Pediatrics, met Dr. Lemons when she was a med student in 1990. He played a major role in her decision to stay at Riley for her pediatric residency and fellowship, she said.

“His genuine kindness and care for the whole patient and family is a model for family-centered care. He is a master at developing relationships with families because he connects with them on a level that few achieve, developing trust and open communication by sincerely caring about the whole person.”

A portrait of Dr. Lemons examining an infant that was painted by a colleague hangs outside the Riley NICU, where he spent so much of his time. Nearby is a picture of the Riley Mother Baby Hospital in Kenya, which Dr. Lemons and his wife worked to fund and open nearly two decades ago.

While he was responsible for substantial growth in pediatric research programs and recruitment at Riley as division chief, his interest in global health evolved naturally from his travels and his work on scholarly journals and studies that seek to give every child the opportunity to survive and thrive.

“He is passionate about improving neonatal care in low-resource settings,” Dr. Haneline said.

“THE ART OF COMPASSION”

Retired neonatologist Dr. William Engle credits Dr. Lemons with teaching him “the art of compassion, caring and respect for our tiny patients and their families.”

But there was always more wisdom to impart.

“He modeled and encouraged critical thinking based on factual information and inquisitive investigation to unravel questions and controversies in neonatology,” Dr. Engle said.

And he showed that medicine is “a team sport that requires excellent clinicians and support staff mixed in a most efficient organization to provide the most excellent care with compassion, respect and love.”

Other colleagues lined up to weigh in on the man:

Dr. Ed Liechty: “Jim was a mentor before mentor became a buzz word. He taught us all the physiology of perinatal development and the technical aspects of neonatal medicine. But more importantly he exemplified the importance of caring for the whole family in a truly humanistic manner. He was a true role model for all in this aspect of medicine.”

Dr. Jo Ann Matory: “As the section chief for the Division of Neonatal Perinatal Medicine, Dr. Lemons provided leadership that embodied his commitment to compassionate care in conjunction with the highest standard of clinical care for patients and their families. He was a progressive leader who sought to recruit, build and maintain a cohesive group of physicians who worked to ensure that these standards were met. His role as an academic at IU School of Medicine established the groundwork for countless future generations of neonatologists.”

Dr. Mervin Yoder: “I want to thank Jim for his vision, compassion, example and encouragement that fueled his development of the Neonatology Division at Riley over the past nearly 50 years. He allowed his faculty the freedom to pursue their own paths and comprise one of the most diverse and accomplished groups in the country. What a pleasure it has been to be a part of what he built and has so carefully given to others to continue to develop and expand.”

Humble by nature, Dr. Lemons might be embarrassed by the tributes, but he takes pride in the relationships he’s built through the years, including with a tiny patient named Molly, who grew up despite all odds.

“Dr. Lemons has helped us to celebrate all of Molly’s accomplishments, Myra Hess said. “She wouldn’t be here today if he hadn’t led the NICU with grace and persistence.”

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

If you had told Scott and Lauren Whitaker last September that they would be taking their infant son to Disneyworld this week, they would never have believed it.

That’s because Charlie Whitaker had quite a rough start in life. Born with hypoplastic left heart syndrome, he had already undergone one open-heart surgery at barely a week old, before subsequently suffering cardiac arrest in his father’s arms and being put on lifesaving ECMO treatment at the bedside.

But today, 10-month-old Charlie is getting that Disney experience, that photo in front of the castle, those mouse ears, all before he’s old enough to remember any of it.

And that’s OK. The fact that Charlie is here now, happy and giggling, playing peek-a-boo and saying mama and dada, is a testament to the expertise of the Riley Children’s Health team, the commitment of his parents and the love and support of family and friends.

That family will be out in force Saturday for the annual Pediatric Critical Care Walk-a-Thon across from Riley’s Downtown Indianapolis campus. They are walking in support of the Riley Children’s Foundation, already raising thousands of dollars in donations and leading to little Charlie being named a champion for this year’s walk.

Joining the hundreds of people expected at Saturday’s event will be members of the PICU and CVICU teams, all of whom have had a hand in saving the lives of Riley’s sickest children.

Dr. Lee Murphy, who was staffing the CVICU on that September night in 2025 when Charlie suffered cardiac arrest, remembers the code blue call, the race around the corner to Charlie’s room and the look on the faces of the boy’s parents as he sprang into action, initiating chest compressions while directing others to prepare for advanced life support measures.

“Overall, it was great collaboration, starting with the parents,” Dr. Murphy said. “The physicians, surgeons, nurses, the operating room team, ECMO, advanced practice providers, pharmacy all helped pull Charlie through. The team effort was on full display.”

Scott and Lauren, who hadn’t even heard of hypoplastic left heart syndrome or ECMO a little more than a year ago, have become experts now after learning of Charlie’s condition during his 20-week anatomy scan in April 2025.

The Carmel couple sought out the experts at Riley after Charlie was diagnosed at another hospital. They met with cardiologists Dr. Andrew Rodenbarger and Dr. Anne Farrell, then heard stories about renowned cardiothoracic surgeon Dr. Mark Turrentine.

“We knew we were in the right place,” Scott said.

Charlie’s delivery last August at the Riley Maternity Tower went smoothly, and he was transferred to the cardiovascular intensive care unit in Riley’s Simon Family Tower in preparation for the first of three open-heart surgeries required to repair the severely underdeveloped left side of his heart.

All went well with the first surgery Aug. 25 when Charlie was a week old, until that fateful evening in early September when Scott was holding his son for the first time since the surgery (Norwood procedure).

“It all happened so fast,” Lauren recalled. “Charlie went sheet white, I blinked and then there were probably 25 nurses and doctors in the room.”

“All hell broke loose,” Scott said.

Within minutes, they were ushered out of the room into a nearby consult room, where a nurse spoke with them, and a chaplain soon appeared.

“He was like an angel,” Lauren said. “He had such words of wisdom during that time of uncertainty.”

Charlie remained on ECMO for six days, allowing machines to do the work of his heart and lungs and give his fragile body a chance to rest. He was discharged a few weeks later but was watched closely by Riley’s cardiovascular home monitoring team, led by Dana Hartman, until returning in March for his second open-heart surgery with Dr. Turrentine.

The couple leaned on each other, their faith and their family through the hardest days, but they count their blessings that Charlie was receiving the best medical care in those crucial minutes, as well as the hours and days that followed.

“ECMO saved Charlie's life,” Scott said. “He will always carry a large scar on his neck as a reminder of those six painful days, but without ECMO, he would not be here today.”

When they think back on those frantic moments, as doctors performed compressions on their son’s tiny chest to keep his heart beating, Charlie’s parents recall the confusion and the fear that they might lose their little boy. They also remember the love and compassion they felt that night.

“All the credit to the Riley team for having the plans in place to not only save him but make sure we were OK afterwards, too,” Scott said. “We did not feel like we were on this emotional island. Everybody absorbed it with us, which is pretty special.”

When they return to Riley now for outpatient appointments, they said they feel a sense of comfort rather than anxiety.

“You might think it would be traumatic, but it just feels welcoming and almost like we’re back at home,” Scott said. “That’s a testament to the team there. I don’t know that you would get that everywhere. We really felt the love on the hardest night of our lives.”

Dr. Murphy, who will attend Saturday’s walk, said Charlie’s parents were instrumental in his recovery.

“They were amazing. Always at the bedside, asking good questions, advocating on Charlie’s behalf,” he said.

“It’s because of kids like Charlie that those of us in the ICU get up and come to work at Riley – to take care of the sickest of the sick.”

Register for the Critical Care Walk from 8:30 to 9:30 a.m. Saturday (June 27) in the Simon Family Tower atrium. This year’s theme is “Our Champions Are Rock Stars,” and participants are encouraged to dress like a rock star or their favorite musical act. There will be a celebratory walk, games and a tribute for patients who have passed. Funds raised support critical care research at Riley.

Learn more about the Pediatric Critical Care Walk-a-Thon.

Mani Naraini seemed most at home in the kitchen – baking breads and muffins, making pasta from scratch, and tossing dough for pizza.

That’s how his mom will remember him.

“He loved to cook,” Michelle Naraini said, especially when he got to use the fancy cookware gifted to him by Make-A-Wish.

For three years, cooking was an outlet for his pain, a chance to do something normal when his life as a teenager was decidedly not normal.

He was just a freshman at Greenwood High School in the winter of 2023 when he learned that the left-sided weakness and seizures he was suffering were the result of a tumor pressing on his brain.

Glioblastoma is an aggressive form of cancer that requires equally aggressive treatment. In Mani’s case, that meant multiple surgeries with Riley Children’s Health neurosurgeon Dr. Jignesh Tailor, chemotherapy and radiation.

It also meant the Riley team – oncologists (including Dr. Scott Coven and Dr. Alex Lion), surgeons, nurses, child life specialists, therapists, teachers and social workers – became part of the teen’s extended family. That was the impact they had, said Mani’s mom, grateful for their care even as she copes with the loss of her son one month ago, just weeks after his 18^th birthday and his high school graduation.

“I don’t think we would have gotten through this without them,” she said. “They have all been so kind and caring toward us.”

Whether it was the Little Italy pizza-making party in the Child Life Zone with Chef Mani in his element, a cooking contest on the rehab unit (Mani won, of course), foot rubs in the hematology-oncology clinic, or countless games of pool in the CLZ, he found joy at Riley.

“He was a good trash talker,” recalled child life specialist Maddie Rodriguez, who developed a close relationship with Mani and his mom. “And he won every game.”

She remembers much more about the young man, who also loved playing tennis, going to escape rooms and hanging out with his friends. He was 14 when she met him the day he came into the emergency department at Riley on Feb. 27, 2023.

It was her job to help him make sense of the news the doctors were delivering to his mom. She used a 3-D Play-Doh brain mold to show him where the tumor was and how the surgeon would remove it.

“Child life brings a lot of the happy and magical moments for patients, but we’re also part of the really hard conversations,” Rodriguez said. “I remember sitting with him and the surgeons to help him understand what was going on with his body. It’s not a parent’s job to know how to do that. We’re lucky that our team works together to do it in a way that doesn’t need to be scary but in a therapeutic way where we meet children where they are.”

His mom remembers how her son smashed that brain, a rare display of anger that made complete sense in the moment.

But she also remembers how Rodriguez and the Riley team were always there to walk with them through the good times and the hard times.

From the beginning, they knew the prognosis was poor. Maybe two years, if he was lucky, doctors said. Instead, they got a little over three years, and they made the best of that time.

As she got to know him, Rodriguez said, Mani played it cool at first, but once someone broke through that wall, “he was funny, stubborn and sassy.”

He had a great sense of humor, others agreed.

“He always came into clinic smiling and cracking a joke,” said Whitney Cherry, neuro-oncology nurse navigator. “Mani was one of those patients who always took every bump in the road with such grace. I know his journey was hard, but he never complained, and he asked great questions. He was really involved in his care.”

The two would talk about tennis and cooking, two of his favorite subjects, but Cherry learned so much more from him.

“Life is hard no matter what you’re going through, but Mani really showed me that it’s important to stay positive and to advocate for yourself and to lean on the people around you and take every day with gratefulness,” she said. “He was a really special kid, an insightful young man. I’m honored I got the chance to know him.”

Everyone who knew him could see the incredible bond he shared with his mom. It was mentioned in every interview.

“She was his fiercest and biggest advocate. And he was always looking to her to make sure she was OK,” Rodriguez said.

“He and his mom had the closest bond between a parent and child I’ve ever seen,” said nurse practitioner Kelsey Knight, who supported Mani and his mom from the earliest days of his diagnosis.

“It was evident how much he loved his mom and felt safe with her,” agreed Cherry.

No surprise really because it had been just the two of them making their way in the world together since Mani was about 3, Naraini said.

The stress of his illness could have fractured that bond, but it did the opposite.

“One thing about his cancer diagnosis that always stood out to me was that through it all he was so brave and so caring,” Naraini said. “My friend told me while I was trying to be strong for him, he was doing the same for me. When I said I wish I could trade places with him and take it all away, he said he wouldn’t want that for me.”

He wanted to spare other people the disease that would take his life, so he agreed to donate a portion of the tumor removed from his brain for research purposes, his mom said.

Dr. Scott Coven, who was Mani’s oncologist through the end of last year, was struck by the teen’s maturity at such a young age.

“Michelle raised a really phenomenal young man. Seeing him grow up, seeing his kindness and compassion and empathy – they’re not natural traits that every young person has and certainly not every young male,” Dr. Coven said.

The physician, who is confronting his own serious medical condition, said his diagnosis brought a new dimension to his relationship with Mani.

“It has made me a better person. It has helped me understand their journey better. There are people and families who come along at certain times in life that have a deep and profound impact,” he added, “and I think we don’t always recognize what that’s going to look like.”

When he stepped away from his day-to-day clinical role, Dr. Coven wrote a letter to Mani and his mom, explaining his decision and sharing his gratitude with them.

“Words were kind of the last thing I could give them,” he said. “Our families trust us to provide the best care but also to treat them well and advocate for them. Michelle and Mani were no different. They trusted us to do those things. Even toward the end, they were so thankful for the care we provided.”

Losses like Mani’s take a toll on the care teams, who develop strong relationships with patients and families, he said. But they absorb powerful lessons as well.

“What continues to stand out and overpower the hard moments these last three years is that Mani's heart, strength, humor, smile and love for his mom was always there,” Rodriguez said. “It was there on the best of the best days. It was there on the worst of the worst days. In the end, it’s the good that always shines through.”

Just like the sun shining on Mani and his mom when Rodriguez and the nursing team helped bring him outside three days before he died. It was the last time he was alert, Naraini said.

As a gift to his mom for Mother’s Day this year, one week before he died, Mani gathered all of his strength while inpatient for the last time to write the words “I love you mom,” which Rodriguez framed.

There were so many other small, meaningful mementos that Naraini received from the Riley team, including mother and son handprints on canvas, fingerprints on a necklace and a stuffed dog with a recording of his heartbeat.

“Riley really was there for us and I am forever grateful,” she said.

She also received a gift of a sourdough starter from Knight, which she hopes to use eventually to bake bread just like her son did.

“Mani loved to make bread and bagels and muffins. This will be my first time doing it by myself.”

As she remembers the love and joy her son brought to the world, it’s comforting to know that his Riley team will carry his memory with them as well.

“I will never forget his love, his selflessness and his fight,” Rodriguez said. “Mani was so special, the kind of special that stays with people forever.”

In 1976, the United States celebrated its bicentennial, Jimmy Carter was elected president, Apple Computer Co. was founded, and “Rocky” debuted on film screens.

It’s also the year Jo Curtiss started her career as a NICU nurse at Riley Hospital for Children.

Curtiss still remembers that first day in the NICU 50 years ago: “I was scared to death.”

She marvels at the long and fulfilling career she’s had at Riley as she prepares to retire June 28, her 50-year anniversary.

“It’s bittersweet,” she said. “I’m ready to retire, but it’s not like I’ll be leaving Riley forever. “I’ll still be doing pet therapy.”

That’s right. In addition to caring for babies in the Simon Family Tower NICU, Curtiss has been a pet therapy volunteer at the hospital for more than a decade.

Her first therapy dog was Murphy, who lived until 2021, then she adopted and helped train Wrigley, who accompanies her to visit patients and team members at Riley, IU Health Methodist and University hospitals, as well as hospice patients in nursing homes and kids with special needs at camps.

Curtiss, who says she knew she wanted to be a nurse from the time she was a little girl, has raised two daughters, one a former NICU nurse herself who now works as a hospice nurse. She has one grandchild.

A half-century ago, extremely premature infants did not survive like they do today, she said, so the patient population was not as acute.

“Back then, we had a lot of what they called the preemie growers,” she said. “Babies would come to us from other hospitals who were premature but mostly had to grow. The really sick ones didn’t survive.”

Advances in medicine and technology have improved survival rates, thus demanding more skilled care, and the nursing profession has risen to the challenge.

Laura Smith, manager of clinical operations for the SFT NICU, said she can’t imagine the unit without Curtiss.

“She has been far more than a nurse – she’s been a teacher, an expert, a source of comfort and a fixture on this unit for generations of patients, families and staff,” Smith said. “Her dedication, compassion and unwavering commitment have shaped the culture of our NICU in ways that will continue long after her retirement.”

As much as Riley has meant to Curtiss over the years, Smith said the nurse has meant even more to the NICU.

“The lives she has touched and the legacy she has built are immeasurable. We look forward to the occasional Wrigley sighting in the halls and the chance to catch up with one of the people who helped make this NICU what it is today.”

A reception for Curtiss will be held on her last day in the NICU, June 28.

Submitted photos and file photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Fourteen-year-old Noah Britt doesn’t much like the spotlight, but the Bloomington youth can’t escape it – and for good reason.

Noah is the face of a revolutionary development in stem cell transplant science. He is the first pediatric patient in the world to successfully be treated with a bone marrow transplant using the stem cells of a deceased donor.

It was chronic nose bleeds that first led the teen and his parents to make repeated trips to the emergency room before they got the devastating diagnosis shortly after his birthday last August – acute myeloid leukemia.

The soft-spoken teen, the youngest of four brothers, went through months of chemotherapy before he was referred to Riley Hospital for Children when it was determined a stem cell transplant was the best option to kick the cancer.

The first attempt this past January, using living donor cells through the National Marrow Donor Program, failed, but Dr. Jodi Skiles refused to give up.

“We were facing a race against time,” said Dr. Skiles, medical director of Riley’s pediatric stem cell transplant program.

Without a new donor quickly, Noah would not survive.

Enter the HOPE program, which offers expanded access as part of a clinical trial to deceased donor cryopreserved bone marrow for patients ages 12 to 80 with urgent transplant needs who do not have a suitable living donor match.

Noah’s second transplant, using deceased donor cells, occurred in late February, and within a few weeks it was evident that the cells had engrafted.

“We didn’t want to get too excited because the first transplant failed,” said Noah’s mom, Ashley McKinney. “In the back of our minds, we knew that something could still happen, but now I’m really excited. He has done amazing.”

“It’s pretty cool to be the first pediatric patient,” Noah said recently during a clinic visit.

“His story is a huge advancement for science,” Dr. Skiles said, a breakthrough that could dramatically expand access to life-saving treatment for children with aggressive blood cancers.

She can breathe easier now, but acknowledges that it’s been a stressful few months. She holds these patients close to her heart, something McKinney realized very quickly.

“She is amazing. She is very supportive and doesn’t do this just as a job. She cares and worries with us,” McKinney said.

Being able to pivot quickly with donor cells recovered from previously consented deceased organ donors was key, allowing Riley’s team to act in days instead of months.

“This treatment has the potential to dramatically expand access to transplant for children who previously had few or no remaining treatment options, giving us a way to close critical gaps in care and offer hope to families facing impossible circumstances,” Dr. Skiles said.

To date, 28 patients worldwide have received transplants using the technology. Of those, Noah is the only pediatric patient.

“The fact that he survived and is thriving and got to be outpatient relatively quickly is shocking,” Dr. Skiles said, and it could bode well for other patients.

Noah is three months out from transplant, so he is still early in his journey, but he said he feels pretty good now. He will continue to be followed by Dr. Skiles and the team in the hematology-oncology clinic for one year post-transplant.

He misses the things he can’t do for now, like swimming and playing football, but doesn’t miss in-person school and says he plans to continue online classes as a high school freshman in the fall.

That’s OK with his mom, who is just happy to have her son back.

“Through this whole transplant, he’s done amazing.”

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

"He spent four weeks here before he was able to come home," Jennifer Chaney, Greyson's mom, explained. "He had his second heart surgery when he was six months old and then his third surgery when he was three years old. Over the last two years, he has had four cardiac arrests. So, last year in June is when they decided he needed to have a heart transplant."

Chaney navigates frequent visits to Riley while also managing three other children. She's immensely grateful for the nurturing care Greyson receives at Riley.

"He has done so amazing this past year," Chaney explained. "I couldn't do it without all the amazing staff here and all my family and all my in-laws as well, they've just been so helpful and supportive."

Chaney said Zoe Mendenhall, a unit tech on Riley's 3 West, is Greyson's favorite.

"My relationship with Greyson is super special," Mendenhall expressed. "He was admitted here about a week after I started so he's really been my whole Riley experience. I sit with him day in and day out. We've really been able to form a special bond and he means the world to me."

Chaney said Zoe goes above and beyond to care for Greyson. She even tailored t-shirts in a special way that allows him to wear "normal clothes" instead of just hospital gowns.

"She has made shirts for him, just regular t-shirts and she's cut out on the arms and put buttons on them so instead of having a hospital gown, he gets these cute little shirts that are easier to get on and off of him," Chaney explained.

Another favorite on the unit is Maddie Baxter, one of Greyson's nurses. Baxter has cared for Greyson for years.

"I was here as a tech when Greyson was a baby," Baxter explained. "I've come into the role as a nurse now and watching him throughout his last hospital admissions, you've really seen him go from being this scared little kid to growing into this huge personality. He's just the best."

Of course, Chaney cannot wait for the day Greyson is united with the hero heart that will change his life. But until then, she is grateful. She also maintains a sobering outlook.

"It has been like a hard year waiting, but just knowing what has to happen to get the transplant, as long as he's been pretty stable, just knowing that he has been happy and stable, the wait isn't as hard knowing that another parent gets more time with their kiddo," Chaney explained.

When Greg Larrabee and Allie Brown went in for a 21-week ultrasound of their baby last November, Larrabee was adamant about one thing: “If there’s anything wrong, we’re going to Riley.”

Spoken like a first-time father-to-be who has his own Riley Children’s Health story.

There was something wrong. In fact, it was the same condition Larrabee was born with and treated for 33 years ago at Riley.

Their son, Roman Larrabee-Brown, was born in the Riley Maternity Tower on April 5 with a small thoracic circumference with bronchial and tracheomalacia, which occurs when the cartilage in the windpipe (trachea) and the breathing tubes in the lungs (bronchi) become weak and floppy. Instead of staying rigid, these airways collapse during breathing or coughing, which severely restricts airflow.

“His airway is a little floppy, and he needs extra support and pressure to get oxygen to his lungs,” Brown said. “That’s what the trach is for. Everything else is great. His lungs are great.”

Larrabee’s niece and nephew also had trachs to help them breathe, just as Larrabee did as a baby and toddler. Dr. A. Ioana Cristea is Roman’s pulmonologist.

“I was on a trach and a ventilator until I was 2, when I had a tracheal reconstruction,” Larrabee said. “Roman is doing significantly better than I did in the ’90s. Vents then were not what they are today.”

Larrabee’s father, who visited recently, told his son, “He looks way better than you did.”

As he leans in to give his son kisses, Larrabee acknowledges that it is sometimes hard to wrap his head around the situation, if only because as a parent, you want better for your children than your experiences.

“Just to sort of clone yourself is not exactly what I wanted, but he’s been great, and the upside is we’re 33 years in the future and the vents are much more superior,” he said.

“We really did clone him,” Brown joked, as she settled in to hold Roman while he finished his feed Monday afternoon. “He’s an exact little clone all the way down to his tiny web toe. Greg has it on the same spot.”

Currently, Roman is in the PICU, following a two-month stay in the NICU at Riley, but he is making progress toward the couple’s goal to get him home soon. And every day, they check more things off a list that enables them to play an active role in his daily care.

“We are working through things to find the sweet spot on his vent, then we can transition to the home vent,” Brown said. “We are not scared of the trach or the G-tube. We’ve been hands-on since the beginning.”

Roman, who had G-tube and trach surgery May 29, has already started occupational and physical therapy, with his parents by his side.

Over the weekend, extended family visited, as did his primary nurse from the NICU, Kelsie Walter, who now carries an honorary “auntie” title.

Walter and Brown created plenty of crafts during Roman’s stay in the NICU. It’s one way to document his journey, Brown said.

“It was such an absolute privilege and joy to work with Roman,” Walter said. “I took care of him for the first time the day after he was born, and then every one of my shifts after that until he went to the PICU.”

While she misses taking care of him, she is delighted to see him growing and getting stronger.

“His parents do an amazing job advocating for and loving him. I cannot wait for the day I get to wave goodbye as they go home. I don’t get to take care of him in the same way anymore, but I still love cheering them on every step of the way.”

PICU nurse Grace McGloin, who was caring for Roman on Monday, said his parents are comfortable taking a leading role in his care.

“It’s really nice to see parents so involved,” she said.

Brown and Larrabee are grateful they are able to be at the bedside – one or both of them throughout the day. They live nearby and their employers have worked with them to make it possible.

They also are grateful for the highly skilled care he has received every step of the way.

“Ever since he was born, we’ve had the best care in the world – in the NICU and transitioning to the PICU after surgery,” Brown said. “All the doctors have been amazing and supportive. We are very detail-oriented, analytical people, and we might come on a little strong, but we just have to be his biggest advocate,” she added.

“We know him best, and I know what’s coming,” Larrabee said, adding that they want to be fully prepared for any scenario once they get home.

The new parents have been in learning and advocacy mode since the beginning.

“We knew he was going to be medically complex, but there’s not really time to freak out,” Brown said. “We have to learn all of this. We have to be on top of it.”

And they don’t shy away from the challenge.

“We are ready for all of the next steps,” she added. “We are so excited to go home and start our next adventure with Roman.”

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

It might be triple the work, but it’s also triple the love.

That’s how it feels for Brad and Heather Kercheval as they adjust to life with triplet NICU babies.

Verity, Asah and Temperance Kercheval were delivered at 32 weeks April 21 at Riley Hospital for Children’s Maternity Tower.

Verity was the biggest at 4½ pounds, followed by Temperance at 3½ pounds and Asah at just over 2 pounds. They’ve spent the past several weeks growing in the Maternity Tower NICU in Downtown Indianapolis, before recently making the move to Riley at IU Health North Hospital to be closer to the family’s Westfield home.

The girls’ names are a nod to relatives and family history, including Puritan and Quaker roots in centuries past, Brad explained.

With two older daughters at home, ages 4 and 6, Brad is already well-qualified as a girl dad, but now with three more baby girls he is entering uncharted territory.

Last year, he and his wife decided they wanted to have one more baby. Instead, they got three, despite no use of fertility drugs. There is some history of multiples in their extended family, but the couple’s first two children were typical births, so they expected a similar scenario to play out this time.

"We never expected this," Heather said.

It was during an eight-week ultrasound that they got the news.

“Right away we could see that there was more happening than just one,” Brad said, “so we kind of laughed, but it looked like a litter of puppies in there.”

Though shocked, the couple continued to laugh as they recalled how friends had joked about this very thing happening a day earlier.

“Wouldn’t that be funny,” they responded at the time.

They laugh even now, despite facing the practical challenges of making room for three more babies in their home, while also confronting the medical ups and downs of preemies in the NICU.

“It’s been a crazy journey,” Brad said as he and his wife divided their time among their little ones in adjoining rooms in the Riley NICU.

Rather than feeling overwhelmed, they both went into logistics mode.

“We need a new car, how do you breastfeed three babies, how do we rearrange the house, what do we need,” Heather said as she ticked off items on their list. “But we didn’t really freak out.”

They got that new car, Heather is pumping for three babies (“it’s like a full-time job,” she said), and they’ve reconfigured their home to make space for a nursery for the girls, while their older two will now share a bedroom.

“Our motto through this whole thing has been that tomorrow will worry for itself,” Heather said. “Anxiety comes when you try to think way too far ahead instead of being in the moment. Right now, I feel really blessed to be in the NICU while recovering from a C-section, with our nurses helping establish a routine.”

The couple have been sustained by their faith, family and friends for the past several months and count on that to continue.

“Matthew 6 has been a key chapter for us this whole time,” Brad said of the Bible entry, which speaks about the power of simple, humble prayer and trusting in God’s providence.

“I struggle with anxiety, so when we are faced with this scenario, there’s only one way to handle it,” he said. “I can’t worry about what might happen.”

There’s a lot of growth in the whole experience, Heather agreed. Learning to accept help, being part of a community and relying on others is humbling, she said.

For now, the babies are doing reasonably well, and their parents are hopeful that at least one of them will be able to come home soon.

“We are thankful for the level of care we’ve received,” said Heather, who spent a month before the births under observation in the Riley Maternity Tower.

“All through the pregnancy, we wondered if they would survive. We are thankful that they did and they are cared for,” she added. “Learning to trust God and pray faithfully has been big for us.”

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

Fall off a horse, get back on. Right?

Well, not so fast if you’re a young girl from Bedford who suffered multiple complex fractures to her left arm when her horse tossed her into a tree.

From there, Aydin Elkins landed in the hospital.

It was one year ago today that a then 10-year-old Aydin found herself first in an emergency department at IU Health Bedford Hospital, then in the ED at Riley Hospital for Children in Indianapolis.

She would undergo multiple surgeries during her 11-day stay, many by orthopedic surgeon Dr. Tyler Christman and others by plastic surgeon Dr. Gregory Borschel. There would be more surgeries, most recently with Dr. Borschel to improve the function of her index finger.

It’s been a long and painful journey for Aydin and her family, including mom Jessica Elkins, dad Brandon Elkins and granddad Jim Waeltz, all of whom came to Riley recently to see her through another operation.

Jessica was riding ahead of her daughter that day when Aydin’s horse, Cooper, got spooked, slid to a stop and deposited Aydin not so gently into the V of a tree.

“Cooper felt the saddle slipping, and he came to a stop,” said Aydin, who’s been riding since she was 2.

The impact with the tree snapped bones in her wrist, forearm and elbow, but she didn’t scream or cry, her mom recalled.

“When I picked her up after the accident, I saw her bone go back into her arm,” Jessica said. “I was freaking out.”

Looking back, Aydin said, “I think I was a little bit in shock. My arm was just dangling there.”

But true to her nickname, “Smiley,” she was grinning when she returned to Riley last month for an outpatient surgery and had plenty of questions for Dr. Borschel when he met the family in the lobby of Simon Family Tower.

She wanted to know exactly what his plan was to give her more control of her fingers, how long before she could be active again, whether she still needed to do her hand exercises and what kind of cast she would have when she left the hospital.”

She had a specific color combination in mind. Orange and black, she said, tiger stripes.

“I’ll say I fought a tiger, and I took his arm for my own,” she quipped.

Aydin, who just celebrated her 11^th birthday, is a pretty tough cookie, her mom noted, as the incoming sixth-grader burned off some nervous energy before her surgery.

“I get anxious for her,” Jessica said, “but the amount of pain she handles is pretty remarkable.”

As is her attitude, according to physician assistant Rachel Giordano: “She’s had an incredible attitude throughout it all and has truly been a joy to take care of,” Giordano said.

“This was a very complex injury,” Dr. Borschel said, “and her results now are actually quite remarkable, given what she’s been through – all the surgeries and all the trauma – it’s a lot.”

Dr. Christman doesn’t argue that point.

“Her injury was complex because it was actually five fractures, all in the same forearm,” the orthopedic surgeon said. “That was compounded by the fact that it was an open injury, meaning there was a laceration at the fracture site.”

That required stabilization in the operating room, he said, with titanium elastic pins. Unfortunately, in the hours after that surgery, Aydin developed compartment syndrome in her arm, a dangerous swelling that restricts blood flow and requires emergency surgery to lessen the pressure by making small incisions (fasciotomy) in her arm, which Dr. Christman also performed.

Had that not been detected early, she was at risk for larger complications, including muscle necrosis or even loss of her arm.

Eventually, she returned to the operating room for Dr. Christman to close those incisions. Once her initial surgeries were complete and she was on her way to healing, she returned to school, only to re-break her arm a month later when a classmate accidentally bumped into her.

It wouldn’t be the first time the idea of bubble wrapping their daughter occurred to Jessica and Brandon. They made adjustments, including getting her school passing period moved up a few minutes so she could walk the halls without a crowd. But they know Aydin is a force of nature – in the best way – so they try to still let her be a kid.

That includes getting back up on her horse, first with her mom holding the reins, then a solo ride several months after her injury.

“I loved it,” Aydin said.

She’ll have to take it easy again since her latest surgery, meaning it’s not just horseback riding but other activities she loves like basketball, cheer and gymnastics that will have to wait. Instead, she’ll be back to her daily exercises to strengthen her hand and arm movement. Most of her restrictions should be lifted within about two months.

“The surgery gets you about halfway, and the rest is up to you and your family,” Dr. Borschel told her about her recovery. “The level of function you have now is a real testament to the will of your family, the ability to do all the rehab and to you.”

Aydin and her family in turn thanked the doctors, the nurses and all the people involved in her recovery over the past year.

“I owe a lot to my nurses on 9 West. They kept my spirits up,” she said.

“With complex injuries like this, it takes a big team,” Dr. Borschel said, recognizing not just the surgical staff, but all the specialties that come together to help patients, including all of the therapists. “It’s because of this integrated team that we can do things like this.”

“It’s a privilege to take care of these kids,” Dr. Christman agreed.

Three weeks out from her last surgery, Aydin is healing well, her mom said, and is eager for the day when she can get back on her horse and take control of the reins without fear.

“I’ve felt safe on a horse ever since I was little,” Aydin said. “It feels like they are so close to me.”

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

Kay Baker loved to tell stories, loved to laugh, loved her family and loved her cat, Shadow.

She had love in abundance, and now those in her circle are left to grieve her loss and theirs.

Baker, 57, who worked for a quarter-century at Riley Hospital for Children, passed away May 16, just weeks after being diagnosed with cancer.

In her role as a patient care tech and unit secretary on 8WE, she was a fierce advocate for patients, a wizard at fixing equipment and a stickler for safety.

To those who knew her best, she was a loyal and funny friend.

“She was like our own personal Wonder Woman,” said Ria Reschly, a nurse on the unit, speaking on behalf of many team members. “We often teased that if Kay didn’t know how to fix it, no one would. Kay’s impact on our unit and our lives will never be forgotten. We feel her loss tremendously.”

Baker notoriously shied away from photos, but her smile was the first thing families and team members saw when she arrived for work on the night shift, Speedway coffee in one hand and a bag of treats for co-workers in the other.

“I worked a lot of Friday nights with Kay,” said nurse Elaine Roope, “and it was a comfort for me to know she was there. I knew when I walked in and Kay was there that she was going to take care of things. In our setting, that was really reassuring.”

Dependable. Dedicated. Generous. Kind.

The words don’t seem big enough to capture the spirit of Baker, but to know her was to love her, said longtime friend and co-worker Carla Lowrey.

“She knew that job like the back of her hand. And she loved those kids, those patients. She would fight for the rights of those kids and make sure you were doing everything you were supposed to be doing.”

Lowrey visited Baker the day before she died.

“We didn’t say much. We just looked at each other,” Lowrey said. “I hung back up the picture of her cat (on the wall) and made sure she could see all her pictures.”

Lately, she’s been listening to the 2000 song “I Hope You Dance,” by Lee Ann Womack.

“I hope you still feel small when you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance … I hope you dance”

“We loved that song,” Lowrey said. “She was more than a co-worker. She was my friend.”

Baker, who is survived by three sons, seven grandchildren, two brothers, her mother and her cat, Shadow, loved to garden, paint, play games, attend her granddaughter’s school events and cheer on the Indianapolis Colts.

She showered some of that love onto a plant, a gift from a patient’s family, that she nursed back to health on the unit, said Roope.

“She took charge of that plant. That was her character. She fixed things, and she took charge so meticulously. She was someone you wanted on your team. Just a pillar for our unit.”

Sara Murff, 8WE clinical manager, was also grateful to have Baker on her team for the past nine years, saying she was passionate about patient safety and represented the heart of Riley.

“Kay was an amazing resource for everybody as a tech and secretary. It didn’t matter what the problem was, she knew how to fix it or knew someone to call,” Murff said.

“She cared deeply about Riley and what we do here.”

The love her Riley family expressed for her in this story went both ways, according to her obituary: “She deeply loved her work family and found great purpose in helping others through some of life’s most difficult moments.”

Although she is not here to help those who loved her through this difficult moment, her memory serves as an inspiration, said her colleagues.

“As a unit, we hope to honor Kay’s memory by serving Riley as passionately as she did during her 25-year career.”

A child can get sunburn from spending too much time in the sun. Sunburn is not from the heat of the sun, but from prolonged exposure to the sun’s ultraviolet (UV) rays. These rays can damage the skin, causing it to turn red, warm, inflamed, blistered, peeled or itchy. Even on a cloudy day, UV rays can pass through the clouds and cause sunburn. Sunlight can also reflect off surfaces like water or snow, which may cause sunburn from the reflection of the sun’s rays.

While anyone can get a sunburn, younger children and older adults are at greater risk because of thinner skin. UV rays penetrate thin skin more easily.

It’s also important to remember that UV radiation exposure increases the risk of skin cancer. So, be mindful of tanning beds and other artificial sources that may increase your family’s exposure.

How can I protect my family from sunburn?

• Take breaks from the sun, especially when you start to “feel the heat.” The sun is strongest between 10 am and 4 pm. Find a shady spot for your family outdoors or go inside and cool off to avoid sunburn or even heat stroke.

• Use sunscreen throughout the day. Sunscreen with a Sun Protection Factor (SPF) of 30 or higher offers the best protection. It should also be reapplied throughout the day.

• Wear sunglasses. Even on a cloudy day, sunglasses can protect eyes from harsh sunlight.

• Wear hats and clothes to block the sun. Hats and sun protective clothing with an Ultraviolet Protection Factor (UPF) of 50 or higher can help block the sun’s UV rays from reaching the skin.

Treating sunburns

• Step away from the sun. The direct cause of sunburn is UV rays. Avoid overexposure to the sun by wearing protective clothing, finding shade outdoors, or going inside when the sunlight is too intense.

• Focus on cooling the skin. Apply a lukewarm or cool towel to the burned area for about 10 to 15 minutes to soothe the skin.

• Moisturize the skin. Apply aloe vera or moisturizer to reduce any skin discomfort.

• Hydrate. Burns take away moisture from the skin. Drink plenty of water to rehydrate after sunburn.

• Comfort. Over the counter pain medication may also be helpful in treating discomfort. Always remember to consult your child’s pediatrician or family medicine doctor for guidance on pain medications.

When does sunburn become serious and what to do?

If you or your child has a large “sunburn bubble” (fluid filled blister) or widespread blisters; a draining blister with worsening pain; or fever, confusion, nausea or vomiting; seek medical care.

There are many options for your family. Talk to your child’s pediatrician or family medicine doctor, visit an urgent care or pop in to one of Riley Children’s pediatric emergency care locations for medical care.

The information in this blog was medically reviewed by the Burn Program at Riley Children’s Health. Indiana’s only American Burn Association (ABA)-verified burn center dedicated to serving children.

This was not the wedding they planned.

This was not the birth experience they wanted.

But Zachary and Jennifer Kinch found immense comfort in exchanging their vows while their son – their first child together – still had life in him within Jennifer’s womb.

The hastily pulled together ceremony took place in a pre-op area in Riley Hospital for Children’s Maternity Tower on May 14, just before Jennifer was to undergo a C-section to deliver Sullivan Michael Kinch at just shy of 32 weeks’ gestation.

The Warsaw, Indiana, couple had learned a month earlier that Jennifer’s pregnancy was not viable due to a fatal neuromuscular disorder that would prevent the baby from surviving for long outside the womb.

It was a devastating blow, of course, but they had a plan. They wanted to keep their child with them as long as possible.

“We knew he wasn’t going to make it, but we wanted to have more time with him in my belly,” Jennifer said.

They were scheduled to come to Riley on June 10 for delivery, but Jennifer went into labor early at home. An ambulance took them to their local hospital, then LifeLine flew her to Riley, where she wanted to deliver.

“We had a birth plan; we had everything ready here (at Riley),” she said, even if it was weeks early.

They also had a marriage license and wedding rings, which Zach had the presence of mind to bring with him as he drove down to Indianapolis after Jennifer was airlifted.

That document and the compassion of a nurse who also happened to be an ordained wedding officiant were crucial in fulfilling the couple’s wish to marry before their son was born.

Lide Segovia-Tomcho, an OB resource nurse, stepped up to perform the brief ceremony shortly before she finished her overnight shift.

She had officiated for just two other weddings, both for friends, and told the couple she could not marry them without a marriage license.

“We have it,” Zach told her. “And we have the rings.”

The couple had previously planned to marry May 30, 11 days before Jennifer was scheduled to deliver.

When they told Segovia-Tomcho how important it was to them for their unborn baby to be part of the ceremony, she couldn’t say no.

“No worries,” she said. “Let’s do this.”

There was little time to get things ready, but someone on the unit found a LEGO flowerpot for Jennifer to use for a bouquet, and some of the nurses got the couple a cake and flowers later.

“It was the highlight of my day,” Segovia-Tomcho said. “Something I never thought I would do, but their reaction made it all worth it, 100 percent,” she said.

The brief ceremony caught the attention of nurses nearby, who couldn’t help but applaud when the OB nurse/officiant pronounced the couple husband and wife.

“It made my heart swell,” Segovia-Tomcho said.

After their baby’s delivery, Zach was able to cut the cord and hold his son, who lived for one hour.

“He was 6 pounds, 6 ounces and 18 inches long,” Zach said. “He would have grown to be a very big boy.”

The couple worked with labor and delivery nurse and bereavement coordinator Abi Kidwell to create mementos, including fingerprint charms, for Jennifer’s older children while Jennifer recovered in the hospital.

“The way they support one another is really beautiful,” Kidwell said of the couple, who were able to have their son with them for an extended period as his little body was kept cool in a Caring Cradle.

“This is the only time they get with their baby,” Kidwell said, “so we are so fortunate to have the donation of these Caring Cradles.”

Zach and Jennifer are now home, adjusting to life and planning a more proper wedding party in their backyard, even as they continue to grieve the loss of their son.

“We are hanging in there, being strong for each other,” Zach said.

“The Riley team was just amazing,” Jennifer said. “It’s awesome that they did that for us.”

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

"We did not know throughout my pregnancy," Caroline Coughlin, Atlas' mom, said. "We had ultrasound, his 20-week ultrasound, anatomy scan, his knees were drawn up and he was breach, and then on repeat ultrasounds it was just too small to see. They could see the bladder just not that it was as detailed or abnormal as it was."

Dr. Martin Kaefer, Atlas' urologist, explained why bladder exstrophy is not always captured on an ultrasound.

"Because the fully-formed bladder contains urine, it can be readily identified on most prenatal ultrasounds," Dr. Kaefer said. "When a fluid-filled structure is not seen, then it can suggest that the bladder has not formed completely. However, the bladder may also not be readily apparent if the fetus has recently emptied the bladder. The position of the baby in the uterus during the ultrasound may also make it challenging to fully evaluate the bladder during the evaluation."

Atlas ultimately came to Riley for care on April 22, one day before his first surgery to tackle his bladder exstrophy.

"Bladder Exstrophy is quite simply a condition in which the bladder did not completely form into a sphere and get placed under the abdominal wall muscle," Dr. Martin Kaefer, Atlas' urologist, explained. "As a result, the bladder is an open circular structure at the level of the skin that is readily visible at the time the child is born."

Fortunately, the Coughlins said caring for Atlas' condition between birth until surgery was not complicated.

"Even with his bladder outside, we were told to put saran wrap on it, put the diaper on, he'll be fine," Mike Coughlin, Atlas' dad, explained. "They were right."

Dr. Kaefer performed Atlas' first surgery alongside Dr. Tyler Christman, Atlas' orthopedic surgeon.

"For an orthopedic surgeon, in the role of bladder exstrophy, we typically are working with our urology colleagues, primarily to ensure a successful closure of the abdominal wall in the bladder," Dr. Christman explained. "We know that a primary closure is best, so by performing what's called pelvic osteotomies, we can offload tension on the abdominal wall during the closure when urology does their portion of the procedure. To do that, we close a pelvic ring. We sometimes talk about the ring of the pelvis and kids with bladder exstrophy are born with an open anterior pelvis. Attached to the pelvis are the muscles of the abdominal wall. So by making cuts on the pelvis, we can close that ring, bring the abdominal wall muscles back together, and ensure a successful closure of the belly. Osteotomies are recommended primarily to offload the tensions of the abdominal wall muscles. If you do not do the pelvic osteotomies, then when you bring the abdominal wall muscles together, you're essentially forcing end-to-end together under some tension. And when the muscle rebounds, you can have a complication called abdominal wall dehiscence. That can lead to complications down the line from the urology standpoint. So by closing the abdominal wall under less tension, you're less likely to develop a dehiscence through the surgical wounds and that ensures a more successful outcome for these kids."

Dr. Kaefer explained Atlas will have additional surgeries to repair his body.

"As a result of the bladder (and the urethra) not fully closing, various aspects of urinary control may not have fully developed," Dr. Kaefer explained. "As a result, some bladders are small, and the muscles for urinary control may not be completely developed. Additional surgeries to improve bladder volume and urinary control are commonly needed once the child gets older and more mature."

The Coughlin's applaud the care they received at Riley, from the doctors and nurses to the teams scheduling their appointments. In return, Dr. Kaefer, along with Dr. Christman and Atlas' care team, praised Atlas' parents.

"Atlas and his family are truly remarkable. What would you expect for a child was such a strong name," Dr. Kaefer said. "Successful management of bladder exstrophy, from a family perspective, requires patience as the family goes through this process. There are frequent visits to the specialists and at times stays in the hospital that may appear quite long. This family was extremely patient and shouldered this experience with grace. The family frequently asked questions when additional clarification was desired. In my opinion, this last aspect is of key importance so that the family recognizes that they are actually an important and integral part of the team as we progress through the child's care."

The unmistakable roar of a helicopter landing on the roof of Riley Hospital for Children makes conversation difficult for a moment in Simon Family Tower, but it is the perfect soundtrack for an interview spotlighting EMS (Emergency Medical Services) Week.

Nicole Hall is the EMS liaison for Riley and emergency crews who treat and deliver sick and injured pediatric patients to the Emergency Department every day.

A paramedic with Indianapolis EMS herself for 12 years, Hall has been the Riley EMS liaison for five years, working to build relationships with EMS crews in Marion County and surrounding counties and to provide ongoing education about pediatric care and Riley’s capabilities specifically.

Paramedics and EMTs working on ambulances are not simply transporting patients; they are trained to provide lifesaving care in the field before arriving at a hospital.

“They work to stabilize patients before they get to the hospital so doctors can do their work,” Hall said.

The IU Health LifeLine crews in the helicopters do the same, using their medical knowledge in consultation with hospital physicians to treat patients during transport.

As a paramedic with many years of experience, Hall knows how difficult some runs can be, especially those involving children.

“I know how hard it can be and the follow-up that I want, so I try to provide that,” she said.

In-person case debriefings for crews who’ve had difficult peds runs help provide closure and insight into what a rescue team might have done differently.

Hall also schedules lunch and learns at stations in the Indianapolis area, sharing information and education from Riley’s specialized providers. In addition, virtual presentations reach teams throughout the state.

The mother of three has had her own experiences with saving lives, of course, as a paramedic and as a mom. She once helped deliver a breech baby in a bathtub at a patient’s home after a 911 call. A couple of years later, she got to meet that little guy, a reunion story that she treasures.

She also saved her daughter’s life several years ago when the girl choked on a piece of candy and Hall performed the Heimlich maneuver to expel the object that was blocking her airway.

With three kids and her work as EMS liaison and a paramedic, Hall is already busy, but she’s not one to take it easy. She has returned to school to earn a nursing degree, hoping to eventually find a spot working in labor and delivery at Riley’s Maternity Tower.

Just as she is focused on beginning a new career in nursing, her daughter, who is graduating from high school this spring, is following the same dream and will enter nursing school in the fall.

“I’m really proud of her,” Hall said. “She is my twin.”

As a recognized week of appreciation for all that EMS crews do for Riley patients and families comes to an end, Hall will continue to support crews every week in their lifesaving role.

“EMS is always taking care of other people, and I feel like my job is to make sure EMS is taken care of.”

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

After five months at Riley Hospital for Children, Colter Presnall has traded city life for life on the farm.

The preemie, who has Down syndrome, wore a perfect little onesie for his discharge from Riley last week, sporting the words: “Going home to take care of the farm.”

Colter, the son of Curt and Brooke Presnall of Fairmount, Indiana, has been the top dog on the eighth-floor Progressive Neonatal Intensive Care Unit since it opened in January.

Born Dec. 16 at the Riley Maternity Tower, he was just a few weeks old when he graduated from the NICU into the progressive NICU, where he worked on eating, breathing and growing.

In that time, he endeared himself to the team there, some of whom came in on their day off to say goodbye to the little boy who captured their hearts.

Vincenza Cascella (otherwise known as his “Aunty” Vinny), Cassie Barajas and Shelly Barrett, as well as nurse practitioner Molly Atha, were among those who came by to get one more hug from Colter and his parents before the young couple rolled him out in a Riley wagon to join his big sister Lainey at home.

“We are so happy for him to go home, but we’re so sad because we just love him so much,” Cascella said.

Born at 31 weeks, Colter was diagnosed with fetal hydrops (a life-threatening condition where a fetus or newborn develops severe swelling and excessive fluid buildup that puts a strain on vital organs) at 28 weeks and underwent surgery in utero to place a shunt designed to drain the fluid.

When the procedure failed to correct the problem, Colter’s parents said they knew his chances of survival were not good.

“We cried a lot and prayed,” Brooke said as she cuddled Colter in her arms.

“We had a lot of faith and a lot of great people around us,” said her husband. “There were so many wonderful people here who gave us a lot of peace of mind.”

As doctors monitored Colter in the womb for signs of distress, they made the call at 31 weeks to deliver him via C-section, after which he had chest tubes inserted to drain the fluid from his little body.

“It was an honest miracle,” Curt said. “The fluid came off so fast, so there were no long-term issues.”

“He was very active in the last few weeks leading up to delivery, so I thought he was going to be strong enough to make it,” Brooke said.

Their faith saw them through, and the couple got the chance to hold their little guy for the first time on Christmas Day.

“It was a wonderful Christmas present,” Curt said.

“Early on, we had prepared ourselves for the chance that we were not going home with a baby,” Brooke said through tears.

“Now he’s thriving,” Curt added. “He’s already made a big impact on a lot of people. We know we are very lucky to be here. It was stressful, but we knew he was in the right place with the right people, so we took a lot of comfort in that.”

And last week, they got to take their son home for the first time.

“I see a lot of tractor rides in his future,” his proud dad said.

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

“Jonah, Jonah, Jonah!”

That was the chant filling the room at The Children’s Museum of Indianapolis as Fishers High School students celebrated their prom last weekend.

The chants turned to cheers when Jonah Canada was announced as the 2026 prom king and accepted his crown and sash. Chaos ensued as the 18-year-old was swarmed by students eager to congratulate him.

Jonah, the son of David and Sarah Canada, is beloved in the Fishers community. He is beloved within Riley Children’s Health as well, where he has been a patient since shortly after he and his twin sister, Chloe, were born.

Diagnosed with a rare genetic disease called Williams syndrome, which is linked to cardiovascular issues, developmental delays and a unique, highly social personality, Jonah has been a patient of Riley cardiologist Dr. Anne Farrell his entire life.

He’s had multiple heart surgeries, the first when he was four weeks old with Dr. John Brown, in addition to dozens of other procedures with Riley specialists and time spent on lifesaving ECMO treatment. (He is ECMO baby #629 and has the shirt to prove it.)

“Riley has been huge for him,” said Jonah’s dad, David. “It’s been amazing.”

But it’s the “highly social personality” part of his condition that makes Jonah so special.

“He is even more social than the typical Williams syndrome kid,” said his dad, recalling how Jonah would excuse himself in kindergarten to go to the restroom but then stop to poke his head into every classroom along the way just to say hi.

While he had plenty of teachers and students who loved him throughout elementary school, it was high school where he truly found a home, his father said.

“He has lived his best life through high school,” Canada said. “The students have really embraced him. It’s been phenomenal, and it’s hard to think that it’s coming to an end.”

A big part of the teen’s socialization needs have been met through Fisher’s Unified Sports program, which partners students with and without intellectual disabilities on varsity teams to promote inclusion and competition. Jonah has played in every sport he can.

In fact, on the same day as prom, he competed in the conference meet for Track and Field and earned a personal record in both shot put and the 100-meter dash, propelling his team to a win over Noblesville.

“He loves sports and anything to do with people,” Canada said. “He’s just been surrounded by a lot of people who have been really great.”

When Jonah’s parents received the news that one of their twins had a rare condition that would define his life medically and intellectually, they found themselves letting go of some dreams. It wasn’t until later that they realized those dreams weren’t actually big enough to capture the spirit of their son.

“It was terrifying at first,” Canada acknowledged. “There is a tendency to think that everything you envisioned for your child is not going to happen.”

The dreams might be different now, but no less special.

“Dr. Farrell told us from the get-go that Williams syndrome patients are some of the most endearing, loving people you will ever meet,” Canada said.

Jonah is the poster child for that assessment.

“He’s just an awesome, awesome kid.”

And now he is Fishers royalty, a feat he takes in stride.

“For him, it’s just another day,” Canada said. “He’s just out there having fun.”

Families and even nurses compete for prizes while encouraging more opportunities for these close snuggles.

"Skin-to-skin care is when the parents take off their shirts, we unwrap the babies, and they lay skin-to-skin against their parents' chests," Mary Jo Macpherson, Quality Improvement Coordinator for Riley's NICUs, said. It's good for bonding between the parents and the baby. It's great for the baby because it helps reduce infection. Studies say it actually helps them go home from the NICU sooner, helps them to bond with their parents."

MacPherson said "kangaroo care" also positively impacts the parents and makes a difference in a mother's breastfeeding journey.

"For parents it's great because it helps bonding with the baby," MacPherson said. "It is especially good for mothers because it helps them to produce breast milk, which is really important in the NICU."

Mylee Stewart just gave birth to a baby boy on May 4. She credits skin-to-skin for increasing her milk supply.

"At first it was not coming in at all and then when we did skin-to-skin it came in right away," Stewart said.

Kangaroo-a-thon continues through May 31. Both parents and nurses have the chance to win prizes by earning tickets each time they either participate in skin-to-skin care or support families and babies.

"This is a special project because it really speaks to how much in the NICU we understand this is difficult for parents to be here, and that they're missing out on the normal interaction that they would have had with their babies at home," MacPherson explained. "We're trying to supplement that with the Kangaroo-a-thon."

The effort to improve care and outcomes was developed by congenital heart surgeons, pediatric cardiologists, cardiac intensive care doctors, nursing and many other healthcare professionals from across the nation. The endeavor was led by the Congenital Heart Surgeons’ Society in collaboration with 15 leading professional societies, including the American Heart Association and the American Academy of Pediatrics, as well as specialists from children’s hospitals across the country.

The result was the first multidisciplinary consensus recommendations for centers performing pediatric heart surgery in the U.S.

The cohort put forth two tiers of recommendations, encompassing structure (staffing, technology and other characteristics), processes (the way care is delivered), and outcomes across various measures.

• Essential Care Centers: Recommendations for essential services and fundamental components to promote high-quality care for any pediatric heart surgery program.

• Comprehensive Care Centers: Recommendations to optimize comprehensive and high-complexity pediatric heart surgery.

What does this mean for families?

At Riley Children’s Health, our pediatric heart surgery program meets the criteria for a Comprehensive Care Center—the top tier outlined in the recommendations. This means we provide advanced care through highly skilled specialists in a comprehensive heart center, with a focus on safety and the best outcomes.

The recommendations suggest that children at the highest risk and with the most complex heart conditions are cared for at a Comprehensive Care Center like Riley Children’s.

What makes us a Comprehensive Care Center?

• We perform more than 500 heart surgeries annually, including neonatal open-heart surgery

• Indiana’s only pediatric and congenital heart transplantation program with access to all available ventricular assist devices (VADs) for children and adults with advanced heart failure

• Three American Board of Thoracic Surgery (ABTS)-certified pediatric heart surgeons with deep experience in congenital heart surgery

• Specially designed cardiac operating suites and a dedicated operating room (OR) team available 24/7—and the OR is capable of cardiopulmonary bypass (CPB) and remains readily available for any pediatric and adult congenital cardiac emergency

• Pediatric cardiologists use specialized ultrasound in the OR, called transesophageal echocardiography (TEE), during pediatric and adult congenital heart surgery

• Committed to quality and safety, Riley Children’s holds multiple accreditations from the Intersocietal Accreditation Commission (IAC) in fetal and pediatric cardiovascular imaging, electrophysiology (EP), and cardiac catheterization

• Riley Children’s is a Platinum Level Center of Excellence for ECMO (Extracorporeal Membrane Oxygenation), one of the most advanced forms of life support, and ECMO is available 24/7 along with a team of ECMO specialists

• The Riley Heart Center participates in public reporting of surgical outcomes through The Society of Thoracic Surgeons (STS), and maintains an overall observed to expected mortality ratio as expected based on our center’s specific case mix

As her fingers fly over the keys of the baby grand piano in the lobby of Riley Hospital for Children, Saylor Lancaster can be forgiven if her mind travels back in time with the soothing melody.

It was 10 years ago when she first played piano at Riley, but she was just a little girl visiting her very sick brother, then a patient at Riley. The piano on the oncology unit was a source of comfort for her and those around her.

Lancaster, the daughter and granddaughter of piano teachers, started playing at the age of 4 and is classically trained. Now 21, she jokes that she might have peaked at the tender age of 9 when she played on perhaps the biggest stage in the nation – Carnegie Hall in New York City.

And that was her second appearance.

There is a lot to know about Lancaster, who began volunteering weekly as a pianist during the lunch hour at Riley a year ago. Raised on her family’s farm in Columbus, where she was active in 4-H for many years, she graduated from Purdue University in three years with a degree in agribusiness and just completed a master’s degree in marketing.

She never really considered making music her career but still loves to play. For her, it’s less about performance and more about being an instrument of peace and connection.

It’s her way to give back for the care her brother received more than a decade ago. He has been in remission for nearly 10 years. Lancaster and her two brothers are triplets. All grew up playing piano and competing over the years.

Her two appearances in recitals at Carnegie Hall were the result of her third-place finishes in world competitions at ages 7 and 9.

Back then, she said, she was too young to be nervous, not really appreciating the significance of her achievement. Playing for patients, families and team members at Riley now, even if it is background music, is meaningful in an entirely different way, she said.

‘Just like when I played here with my brothers, it’s touching to see how impactful it can be for people,” Lancaster said. “I see people having a connection in the moment to the music, even if it’s just a few notes they hear in passing, and that means a lot to me.”

That connection plays out time and time again as Lancaster digs deep in her trove of sheet music for a lovely classical piece or a little ragtime when she wants to switch up the mood. People can’t help but turn their heads to take in the sounds of music wafting through the lobby.

“I try not to play anything too sad,” she said, appreciating that the hospital is filled with people anxious about a sick child.

“When my brother was here, all three of us would go into the game room and play piano, and families would come in and listen while we practiced. People loved it. That was my first experience with something like music therapy and what that can do for people.”

She has other Riley connections as well. She participated in the Purdue Dance Marathon fundraiser for Riley while in college, and she met Riley nurse Cydney Bridges, who was named Miss Indiana in 2023 and competed in the Miss America pageant in 2024. Lancaster is competing in her third Miss Indiana pageant next month.

While she doesn’t have a job in her field lined up yet, she said someday she would like to work with a nonprofit dedicated to pediatric cancer research.

Meanwhile, she brings the music to Riley every Friday.

“We are so fortunate to have such a talented performer on our team,” said Susan Schwarz, program manager for volunteer resources.

“With every note played in the lobby, Saylor’s music provides a soothing backdrop for patients, families and staff — offering a sense of calm and connection. We are so grateful for the time, talent and heart she shares with us each week.”

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

"January 2024 was my first fall or my first seizure and then March, two weeks after I turned 25, was my second seizure where we found everything," Barr explained.

Barr recalled getting out of the shower before her shift and then waking up on the floor surrounded by blood and her dog, Hank, sitting next to her.

"I woke up and I called my mom and she's like, 'Call 911,' so I called 911,"Barr said.

As EMS brought her to IU Health North hospital, her big sister met her there.

"They stapled my head," Barr said. "Got a CT. The CT results came back, and it said something about a mass."

The next step was an MRI.

“Sure enough, the results came back, and I’m sitting there with my sister, and it says, ‘suspect primary glial neoplasm,’” Barr explained. “I literally just looked at my sister and was like, ‘Wait, do I have a brain tumor?’”

At IU Health North, the care team gave Barr the option to either transfer to IU Health Methodist or go home and take a moment to decide her next steps. Together with her family, she decided Dr. Angela Richardson would perform her surgery at IU Health Methodist. Barr recalled the day Dr. Richardson called her with an interesting question.

"She's like, 'What if we do your surgery awake,'" Barr remembered. "And I was like, 'I mean, okay!'"

In April 2024, Dr. Richardson performed Barr's awake craniotomy to resect the tumor. She spent merely one night in the ICU and went home the next day.

Barr continued to recover for the next several months but returned for two shifts at Riley.

"During that, I couldn't drive so one of the shifts, one of my co-workers, he lives like 30 minutes away from here, he picked me up, took me to work, [and] brought me home the next morning which adds like an hour to his drive because my drive's even longer," Barr explained. "One nurse even took me to an MRI after a shift. One thing that I've probably learned from Riley is [that] you can't do it alone."

To continue treating the cancer, Barr underwent proton radiation at the University of Florida for two months before taking oral chemo. She was able to stay with her former babysitter who is more like an aunt to her.

"So, I decided to stay in southern Georgia, and it was just a 45-minute drive five days a week down there," Barr said.

Barr returned to work at Riley in September. She said her cancer journey changed how she cares for her patients, especially those with a similar diagnosis.

"You've been on the other end of that so many times working on 9West," Barr said. "I feel like so many tumors are found overnight. The kids get up to the floor, and you're the first person that they meet. They may have met a few of the doctors downstairs, and they may have gotten the news; they may not. You may know they have a tumor when they get up to the floor, and they don't even know yet. Being on the other end was like eye-opening."

Barr said it is rewarding to share some of the tips she learned along the way with patients and families.
"There's one kid that's had a few resections, and he has a tumor in a very similar location," Barr explained. "So, one night he was coming up from the ICU, and his incision was right here, and I was like, 'Listen, I know how to keep the headwrap or the icepack [on] if you do this and this. So, I'm like showing mom."

Today, Barr is in remission. She shared immense gratitude for her family, friends, Hank, and her Riley co-workers, who walked alongside her through this unexpected journey.

"I mean they're just great," Barr said. "Everyone, from 9West to all of Riley."

On a day set aside to honor excellence in nursing, Melissa Alstott, associate chief nursing officer for operations and interim CNO for Riley Children’s Health, asked an auditorium filled with nurses to reflect on the day they committed to their career of caring for people.

“You all should be incredibly proud,” she said. “This morning, we celebrate excellence, we celebrate commitment, and most importantly, we celebrate you for showing up, for pushing through the hard days and for choosing this profession again and again.”

Each of the nearly 140 award nominations represents a moment when someone saw excellence, compassion, advocacy or teamwork, she said.

“And they felt compelled to say in writing that this matters. We celebrate all the extraordinary nurses of Riley.”

Margaret Martin-Roth Award: Among those reflecting on their start at Riley many years ago was Laura Blazier, this year’s Margaret Martin-Roth Award winner. The award, named in honor of a legend at Riley, is the most coveted nursing award at the hospital. It is presented annually to someone who embraces the spirit and skills of the former director of nursing at Riley, who worked with Dr. Morris Green to help transform pediatric care. Martin-Roth, who had attended previous Riley Nurses’ Awards programs, died in 2023 at age 102.

Blazier, described as a “superstar” nurse, is a clinical nurse specialist for Riley’s NICUs. In the nomination written by Mary Jo MacPherson, NICU quality improvement consultant, Blazier is recognized for her neonatal clinical expertise as well as her work in evidence-based nursing research and quality and safety initiatives.

“Reading Margaret Martin-Roth’s biography, I am repeatedly struck by how every description of this venerable nursing icon mirrors what I am coming to learn about (Blazier),” MacPherson wrote.

“Not only is she a brilliant and consummate nursing professional who routinely goes above and beyond, but it is obvious that she also truly embodies the Riley values of compassion and caring for her patients and team, as well as the purpose and total dedication to excellence that has helped make Riley a top provider of NICU care in the U.S.”

For her part, Blazier said being selected for the award by her Riley colleagues is an incredible honor, and she offers a word of advice to new nurses:

“Find what you’re passionate about and really focus on that. There are lots of ways that we can make an impact in nursing, so finding the thing that you really connect to, that’s what will take you far.”

Other nominees: Jerica Rapp (SFT NICU), Erin Roach (ED), Maggie Hay (Burn Unit), Sandra Linhart (ED), Ashley Cantlebarry (nurse navigator inpatient rehab).

Nurse Excellence Award: Denise Ortega (SFT NICU and ECMO).

Ortega is described as someone who “consistently fosters strong, collaborative relationships across the unit,” by nominator Laura Smith.

“Known as a steady presence, (she) maintains composure in high‑acuity situations and communicates with clarity and respect, which reassures both peers and families. Colleagues frequently seek out this nurse for support when facing complex patients or unfamiliar clinical scenarios, trusting in her ability to guide them with patience and practical insight.”

Others nominated: Kaitlyn Buelow, Emily Rausch, Paula Thatcher, J'Aimee Naughton, Jess Bender, Valerie Love, Matthew Mast, Brandon Hawk, Anna Foster, Erin Newbill, Connie Neuzerling, Ellen Phegley, Monica Lough, Grace Roembke, Shelby Mundy, Christy Doss, Paul Plowman, Kaylynn Gray, Patricia Stanifer, Ashley Lineback.

Daisy Nurse Leader Award: Keegan Caughey, 9W

“Through his authenticity, patience and unwavering presence, he earned the trust and respect of 9W in a way that felt both natural and profound,” said nominator Hettie Smith. “He makes it a priority to ensure every team member feels heard, valued and appreciated. What truly sets him apart is that before he is a leader, he is a team member. He stands beside us, not above us. He puts himself in our shoes, shares in our frustrations and victories, and allows himself to feel the same emotions we do. He leads with humility, never letting pride or ego prevent him from acknowledging when something isn’t right.”

Others nominated: Andrea Purdy, Laura Smith, Jessalynn Parsley, Katrina Copeland, Kasey Wilken, Lisa Shostrand, Sara Murff, Kristin Elbert/Cassie Lanahan, Rachel Sperka, Sarah Timberlake, Jennifer Brown, Erin Kramer, Emily Dever.

Daisy Team Award: Pediatric Sickle Cell Disease Nurse Navigator Team – Brenda White, Sharla Jones, Erica Starks.

“Children living with sickle cell disease face not only a lifelong, complex medical condition, but also systemic barriers, stigma and fragmented access to care. In this landscape, continuity and trust are not luxuries, they are essential to survival,” said nominator Dr. Seethal Jacob, director of the Comprehensive Pediatric Sickle Cell Program at Riley.

“The nominated team at Riley Children’s Health has become the foundation of that trust. As the first nurse navigator team of its kind at IU Health, what began as a single navigator quickly expanded to three in response to the measurable and transformative impact of their work.”

Others nominated: PICU Leadership Team, Inpatient Rehab, PGC Labor and Delivery Committee Chairs, Interventional Radiology, 8 WEast, 5 West, Riley Cardiac Cath Lab, Riley Interventional Radiology Nurses, Riley CVICU, Behavioral Health, PICU Team, 3W Heart Center, NPCU, Vascular Access Team, Riley ED, Riley Burn Center.

Coach Award: Kruti Patel, Mother-Baby.

The winner “consistently demonstrates exceptional dedication to supporting new hires, embodying the IU Health values of Team, Excellence, Compassion and Purpose,” said nominator Makaylah Lucas. “They create a high‑quality learning environment where new team members feel supported, welcomed and empowered to grow into confident contributors within the Riley nursing culture.”

Other nominees: Callie Sharkey, Annjeanette Laws, Jenna Heckathorn, Bailey Lenig, Sandra Linhart, Roxanne Klampe, Ali Davidson, Jessica Shupe, Maggie Hay, Kelsey Yoder, Megan Thompson, Samantha Spencer, Jana White, Logan Shake, Lynlie Closson, Kayla Beckett, Sharon Albright, Katie Klemple.

Brittany Gaskins Award: Callie Sharkey, inpatient rehab.

Others nominated: Savannah Burke, Van Thluai, Nick Payton, Ashanti Promise, Lauretta Allen, Kate Remijan, Emily Kreuzman.

Stephanie Pottenger Award: Katherine Lawson

Riley Children’s Foundation Educational Grants: Natalie Blakemore, Maternity Tower; Rachel Sperka, CVICU; Kelly Butler, inpatient rehab; Nikki Ayala, PICU.

Partner in Care Award: Andrew Christie, critical care supply/equipment tech.

Others nominated: Cynthia Youngman, Haley Meister, Lauren Broniarczyk, Tellesa Hadley, Katherine Carter, Nancy Attebury, Damita Perkins, Aniyah Parnell, Nancy Attebury, Abbie Jacks, Jourdan Edmondson, Nicholas Pease, Zakyra Huff, Allie Kenneally, Cora Miller, Olivia Rodriguez, Freddy (Alfredo) Saucedo, Anesthesia CAA/CRNA Group, Lexis Morley, Jessica Torres-Torres, Araceli Frazer, Jamie Redkey, Kylee Hunter, Julie Smith, Haley Meister, Alex Spicer, Riley Maternity Certified Anesthesiologist Assistants (CAAs) & Certified Registered Nurse Anesthetists (CRNAs), Isabella Joanou, Taylor Quinonez, Emily Barto, Emily Mueller, MD.

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

The Milk Bank often connects with women after their losses and the nonprofit's team has learned that one part of the trauma for mothers is the unexpected onset of lactation.

"A lot of the families weren't aware that [a mother's] milk might come in," Kolb explained. "So, the program has really evolved beyond a milk donation program to provide that anticipatory guidance, the support right when it's needed, and all sorts of wraparound services. We provide free bereavement kits to all of our partners, including Riley. It's a message from another bereaved mom. It really is letting them know that they don't have to stand alone."

Kolb said The Milk Bank shares information about the options a mother has which includes the choice to express, suppress or donate.

"All of those are really valuable options," Kolb said.

Kolb compassionately shared how, for some women, choosing to pump after a loss can offer a small sense of comfort during an unimaginable journey.

"The research says, for those that choose with informed consent, pumping milk and donating milk can facilitate a grief journey; it can provide some mental health relief and creating that legacy for their infant giving purpose to the loss," Kolb said. "Some mothers find it a connection point to the infant; they know that they would have been able to nourish their baby, and lots of other strong mental health supports."

Riley Children's Health has its own milk depot where mothers can donate breast milk, which is then taken to The Milk Bank to ultimately nourish babies at Riley and beyond.

"Riley is really one of our flagship partners," Kolb said. "We've been in partnership with them for more than 20 years. The wonderful thing about Riley is, as a level 4 NICU, the NICU serves as almost a magnet for the sickest babies. They're going to pull in infants from all around the state who need the most acute, critical levels of care. So, they're actually going to consume a much higher percentage of milk than maybe a smaller, more rural hospital."

Kolb referred to breast milk as "a lifesaving intervention."

"Especially for the 1 in 10 infants who are premature, and particularly at an increased risk for necrotizing enterocolitis," Kolb said. "That's where you see donor milk used the most on a NICU setting. That can really increase survival rates between 50 and 70%, the research says."

Lactation is often an overlooked element of losing an infant. To bereaved mothers, compassionate support is available to you.

"We are really here to celebrate the legacy of your infant and the life that they had, no matter how short, no matter if you got to hold them in your arms or in your heart, they mean a lot to us," Kolb said.

For any mothers or families in need of bereavement support, below are some helpful resources:

Riley Grief Services

The Milk Bank Bereavement Services

The Milk Bank Wellness for Bereaved Parents skills group

The Compassionate Friends

When Aurora Kalberer started suffering unexplained falls two years ago, her mom, Arianna Sullivan, naturally began to worry.

Aurora was 3 (she will turn 6 in May) when a fall in her northern Indiana home left her with a bump on her head, so her mom watched her for signs of concussion.

When the little girl became unresponsive and her breathing became irregular, Sullivan called an ambulance, which transported her to a hospital close to home. Soon, however, she was taken to Riley Hospital for Children in Indianapolis for further evaluation and was diagnosed with Sturge-Weber syndrome with related epileptic seizures.

Although Aurora already had a birthmark on her face called a port-wine stain that can be indicative of Sturge-Weber (a congenital disorder characterized by abnormal blood vessel growth on the brain’s surface), she was “a normal healthy child” up to that point, her mom said. Aurora’s father is Ryan Kalberer.

The disorder, which typically causes seizures, stroke-like episodes and developmental delays, can sometimes be managed with medication, but in the year after her diagnosis, despite treatment, Aurora suffered more myoclonic seizures (brief startle-like events) and "drop seizures" (brief, sudden episodes characterized by a temporary loss of muscle tone and consciousness and often leading to other injuries).

Surgery was recommended in consultation with the entire Riley epilepsy team, including epileptologists, neurosurgeons, neuroradiology and neuropsychology during the group’s weekly comprehensive epilepsy case conference.

Dr. Makram Obeid, Aurora’s epileptologist, and Dr. Jason Chu, her neurosurgeon, were confident that a type of surgery called a laser corpus callosotomy in which the two hemispheres of the brain are disconnected would help their patient, though the results were even better than expected.

“She did amazing,” Dr. Chu said.

In cases of Sturge-Weber, blood supply to the brain is disrupted and patients over time suffer episodes that are like mini strokes. Typically, the episodes are confined to one side of the brain, so when it becomes drug-resistant (cannot be controlled with two or more medications), a hemispherectomy (removing one side of the brain) may be done.

“Her condition was even more unique in that she started having abnormal electrical activity from the other side too, not only the side where we thought the condition was confined to,” Dr. Obeid said.

On April 11, 2025, a then 4-year-old Aurora underwent a laser corpus callosotomy, during which Dr. Chu used MRI-guided laser heat to ablate or “burn” the corpus collosum, the tissue connecting the left and right sides of the brain, so the two sides could not “talk” to each other anymore.

The idea is to prevent any seizures on one side from spreading to the other, thus reducing their impact, explained Dr. Obeid.

While a traditional corpus callosotomy requires a large incision in the skull and removal of bone, the laser procedure achieves the same positive results with very tiny incisions and shorter recovery time. It is still relatively new but is becoming more popular, Dr. Chu said.

In deciding to proceed with the surgery in consultation with Aurora’s family, the team had two goals: improve Aurora’s quality of life by ending atonic and myoclonic seizures and prevent other types of seizures from spreading and affecting the whole brain.

While the surgery is not a cure per se, it has worked wonders for Aurora, according to her mom.

“She is thriving,” Sullivan said about her little girl, who is finishing kindergarten this spring.

A year out from surgery, she has had no seizures in that time (compared to six to eight a day previously) and has recovered some of the skills she lost amid the seizures.

She is able to write her name again, knows the alphabet and can count. Her language is improving, and she is learning bigger words, Sullivan said.

Improvements in her neurodevelopment are consistent with expectations post-surgery, Dr. Obeid said, though he would not rule out more treatment down the road.

“Stopping the seizures not only improves quality of life with fewer drop attacks and falls, but also by stopping the seizures she gets the best potential for neurodevelopment."

Dr. Chu agrees, saying many patients with epilepsy are at a critical stage of brain development and the abnormal electrical activity often prevents the brain from growing as it should.

“Once we get the seizures and Aurora’s drop attacks stopped, the brain development can increase exponentially. It’s remarkable to see how kids like Aurora bounce back so well after surgery … and make up for lost time.”

Though she might need further treatment down the road if her seizure activity returns, for now Aurora is a definite success story, Dr. Chu said.

“The goal of the Comprehensive Epilepsy Team here at Riley is to give kids with debilitating epilepsy options for getting their seizures under control and allow them to live their best life possible,” the neurosurgeon said. “Surgery can always sound scary, but we do it in the safest way possible for our patients.”

Riley has many tools and treatments available for children with epilepsy, he said, encouraging parents to ask questions.

“If medications aren’t working well, I think it’s reasonable to ask if there is a surgical option to help get the seizures under control. Riley is one of the centers in the country now pushing the envelope for treatment for epilepsy,” Dr. Chu said. “Our approach here is inclusive – the patient, families and doctors all are involved in the decisions. We’re in this as a team,” he added.

“Every patient seen in our combined clinic is evaluated by multiple specialists and reviewed as a group. Not only are we at the forefront of treatment for epilepsy and provide high-level care for our patients with epilepsy in Indiana, but we’re also innovating and making advances in the best way to treat epilepsy, whether it’s surgery or medicine,” he said. “We are participating in research and multi-center studies to help the community understand the best ways to treat children with epilepsy.”

Thanks to that care, Aurora is pretty much living her best life right now, her mom said, describing how her daughter loves playing outside with bubbles and chalk, how she adores her three cats and how she gets lost in the world of Gabby’s Dollhouse.

“She is resilient and a go-getter. She does not let anything keep her down,” Sullivan said. “We got her an epilepsy helmet because she’s always on the go, but she’s tough. She’s also very vocal – it’s her way or the highway.”

Aurora still sees several specialists at Riley, including neurology, dermatology and ophthalmology, so it’s a good thing she enjoys the visits, it seems.

“She loves going to Riley,” Sullivan said. “She loves that hospital more than any kid I’ve ever seen. It’s like her second home. We are extremely grateful for everyone there.”

"When there's an obstetric emergency, you have seconds, minutes to respond before you're seeing devastating outcomes in both the pregnant patient and the fetus," Dr. Cassell said.

For this reason, IU Health team members like Dr. Cassell and simulation educator Lisa Mayer are passionate about sharing knowledge with doctors, nurses, emergency medical staff, and respiratory therapists across the state.

"We have a perinatal simulation team that was started in 2010," Mayer explained. "So, for 16 years we've been traveling all over the state to maternity units, NICUs, and providing simulation-based medical education to doctors, nurses, respiratory therapists who take care of moms and babies. I think the experience that we bring is we see a lot of high-risk emergencies at Riley, and so the providers that we're seeing out in the community are always well-intentioned, they're passionate about the care that they give to their moms and babies, but we provide that experience and that expertise and give them opportunities that they don't get to see a lot of the time."

Dr. Cassell said that, fortunately, many hospitals that handle more low-risk situations do not see the same number of extremely vulnerable patients as our team at Riley.

"But when it happens, it's important to know how to jump in and work together as a team," Dr. Cassell said.

During the Trauma, Burn & Emergency Care Symposium 2026 presented by Riley Children's Health, the perinatal simulation team walked two groups of medical staff and first responders through a simulation experience involving a mother who was about to give birth at home.

"Unfortunately, in our state, we do have some high numbers of mortality, and every day we hear of another hospital that's closing their maternity services," Mayer said. "It's really unfortunate because there's a lot of moms who are pregnant that are showing up at hospitals and they don't have the proper training to take care of them anymore with the closing of maternity units. So we're just trying to make ourselves a strong presence at conferences like this with emergency providers and hospital and pre-hospital providers so that we can just give them some education so the next time they encounter a pregnant patient or a newborn baby, they have the skills they need to care for them."

Along with this type of scenario, the perinatal simulation team assists with lessons regarding hypertensive emergencies, postpartum hemorrhages, shoulder dystocias, and delivery of a preterm infant.

"You can't predict when an obstetric emergency is going to occur," Dr. Cassell said. "I think it's really critical that we're preparing everyone for the worst-case scenario."

"The procedure took a little longer, and then they found other issues, and then issues after that, so we've just been here to now we get to leave," Peggy Edmonson, Londyn's grandmother, said.

The family said they only anticipated staying at Riley for three days but added they knew they were in the right spot for Londyn to heal. Peggy said they were especially impressed with the kindness of the hospital staff.

"The good thing is [that there are] great people at this hospital," Peggy said. "The nurses, the doctors, all the way down to the staff, the cleaning people, [and] the kitchen staff. We've had no problem; everybody is great! Great personalities, great with children, I'll tell ya, they have more patients than I do. They have great patience; it's just a great hospital."

Matt Roehrig spent years working as a unit secretary in the resource center for IU Health University and Riley Hospital for Children before he decided to become a nurse.

It was his mom, a nurse herself, who steered him into healthcare initially, but the idea of joining the nursing profession began to come into focus the more time he spent in the resource center.

Roehrig, who was recently honored with a DAISY award for his clinical skills and compassionate care, earned his nursing degree from Ivy Tech and joined the PICU as a nurse in 2015.

Two years later, he trained to become an ECMO clinician, in addition to his bedside nurse duties, supporting critically ill patients suffering heart or lung failure with extracorporeal membrane oxygenation.

It was in that role where he met a family who would come to rely on his advocacy and his honesty in the care of their child, who faced a potential limb amputation.

Roehrig leaned on his communication skills to guide the family through the ordeal, and things turned out for the best, but that’s not always a given.

“Often, we have to deliver difficult news and have tough conversations. I think parents appreciate the honesty,” he said.

“You can absolutely have some difficult days, but you’re able to care for people in some of their worst moments and try to make a positive impact. When you can see everything through and be part of a positive outcome for families, that’s really what motivates me.”

It made a difference for one patient’s family, who said in nominating Roehrig that he had been a huge part of their child’s recovery as well as a support for both parents.

“I will never forget what he did that day, his professionalism, and the compassion he showed,” they wrote. “We are forever grateful for Matt and consider him one of (our child’s) heroes.”

Roehrig has two sons, ages 5 and 2, with his wife, Tabitha. Together, the family loves to spend time outside at the lake or pool.

“We all enjoy being around water when the weather is nice.”

Nominate a nurse who exemplifies excellent clinical skills and compassionate care here. https://www.rileychildrens.org/form/riley-daisy-award

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

Over the past several months, Benny Miller wiggled his way into the hearts of nurses and other caregivers in multiple units at Riley Hospital for Children.

First, in the Simon Family Tower NICU, then the Maternity Tower NICU and finally in the Progressive NICU – a new unit on the eighth floor supporting babies who are closer to discharge.

And now, little Benny is home for the first time since his premature birth Dec. 1.

From the nurses who riffed on Elton John’s song “Bennie and the Jets” with their own version of “Benny on the Jet” when he was on high-frequency jet ventilation in the NICU, to the cuddlers who came in to rock him when his parents couldn’t be there, Benny is one popular guy.

But no one loves him more than his parents, Joey and Madison Miller of Indianapolis, who have had a rocky start to parenthood with their first child.

Benny was measuring small in the womb, so Madison, a NICU nurse herself at an Eastside hospital, underwent genetic testing before he was born. The tests revealed nothing unusual, but the Millers were still uneasy and planned to deliver at Riley’s Maternity Tower so the team there could be ready for any complications.

But Benny had other plans and was delivered via C-section at 30 weeks and 4 days gestation (weighing 1 pound 14 ounces) at the hospital where Madison works, then transferred to Riley three days later.

The couple agreed to genome sequencing testing, which is much more extensive, and learned the results a few weeks after Benny arrived at Riley.

“Four doctors came in telling us that it’s this rare syndrome that they don’t know much about,” Madison recalled.

MIRAGE syndrome is an ultra-rare (1 in 1 million babies), severe genetic disorder caused by mutations in the SAMD9 gene. It is characterized by myelodysplasia, infections, restriction of growth, adrenal hypoplasia, genital abnormalities, and enteropathy (affecting the small intestine).

Neither parent is a carrier for the disease, so future pregnancies should be low-risk, but taking the best care of Benny is the only thing on the Millers’ minds right now.

Lucky for them, Benny has a dream team of specialists on hand at Riley, including Dr. Rosalia Misseri (urology), Dr. Nurcicek Padem (immunology) and many more, who will see him regularly in the months and years to come.

The Millers have found support in a Facebook group for parents of children diagnosed with MIRAGE syndrome, so that’s been a help to them, and they are hoping since Benny was diagnosed so young that he will benefit from early intervention.

“In the beginning, it was terrible,” Madison acknowledged, “but since we got the diagnosis and specialists on board right away, that helped a lot.”

Benny has already received one IVIG (intravenous immunoglobulin) infusion, a therapy using antibody mixtures from healthy donors to treat immune deficiencies, autoimmune diseases and infections, and hasn’t needed anymore, his mom said. And other than a bout with pneumonia in January, he has not been sick.

As a NICU nurse herself, Madison said having her own baby in intensive care affected her in different ways.

“I kind of anticipated everything that they’ve needed to do, so that’s been nice to prepare myself, but then also you know too much so you can think the worst,” she said.

She and her husband, an IFD firefighter, found comfort in the nursing team that cared for Benny, including Vincenza Cascella in progressive care, who said Benny had the nurses wrapped around his little finger from the beginning.

“He’s so sweet, and his parents are awesome,” she said.

Madison gives the compliment right back.

“It’s amazing just how much nurses can change your whole day.”

Joey Miller said their goal in sharing Benny’s story is to encourage other parents.

“When we got the diagnosis, there was very limited information online and a lot of doom and gloom. Maybe as more is learned about MIRAGE syndrome, other parents going through what we went through can see something positive and not automatically presume the worst,” he said.

The couple say they feel good putting their trust in the Riley team, even with such a rare diagnosis.

“Having all the specialists in one place is huge, and they’ve been really good at listening,” Madison said. “I think that’s been the best part – being listened to.”

When Benny and his parents got home last week, they were greeted by a giant yard sign welcoming their baby to the neighborhood, and Benny got to meet his new bestie, Hank the dog.

Life at home will be busy, with plenty of medical appointments on the calendar, but Benny, who went home with just a feeding tube and a little supplemental oxygen, is adjusting well, his mom said.

“It’s so much better being home.”

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

Navy May, 2½, does not look like a child who’s just had a liver transplant. She is busy playing with toys and blowing bubbles on a play mat in her room on the ninth floor of Riley Hospital for Children, eight days after receiving a new liver.

She is happy – and bubbly – as she tries to capture the delicate bubbles floating around her while her mom, Lida May, keeps her entertained.

Navy, who was named by her older sisters when her parents couldn’t agree on a name, has amazed her care team with her quick recovery.

Dr. Richard Mangus, surgical director of the IU Health intestine transplant program and pediatric liver transplant program, performed Navy’s surgery at Riley on April 12.

Dr. Jean Molleston, veteran hepatologist and former chief of Riley’s GI, Hepatology and Nutrition division, has been seeing the little girl since Navy was just a couple of months old, not long after she was diagnosed with biliary atresia at the Evansville hospital where she was born.

Biliary atresia is a rare, life-threatening pediatric liver disease where bile ducts are blocked or absent at birth, trapping bile and causing rapid liver damage (cirrhosis). It is the leading cause of pediatric liver transplants.

“It is wonderful to see her looking so bright and full of energy,” Dr. Molleston said about Navy’s progress Monday. “Her mom worked so hard to get her here – tube feeds, long drives to Riley, lots of visits.”

Navy was listed for transplant when she was just a few months old, but when her liver numbers improved, she was taken off the list, only to be re-listed the next year when she began suffering repeated episodes of vomiting and was not growing.

When Lida and her husband, Zack, got the call that a liver was waiting for their daughter, they hopped into their car and made the three-hour trip from Poseyville, Indiana, to Riley last weekend.

They’d already had a dress rehearsal of sorts months earlier when they made the same drive in hopes that another liver donation would be the answer to their prayers. That time it did not work out, something the transplant team prepares families for as best they can.

“They tell you not to get your hopes up, so the first time was kind of scary,” Lida said.

This time, however, all systems were go.

“As far as the surgery part, my husband and I felt confident we were doing the right thing and that everybody was going to do their job. It was nice to have that assurance.”

They also were comforted by the prayers lifted up for them by their church congregation.

“We have an amazing support system at home,” said Lida, who has been staying with her youngest daughter in the hospital for the past 10 days. Zack has been able to spend part of that time at Riley as well. Over the weekend, the whole family was together for a visit, which delighted Navy.

“When they walked in the room, it was just a world of difference,” the toddler’s mom said.

Navy is doing so well she likely will be discharged this week, though mother and daughter won’t be going home just yet. They are hoping to have a room at the Ronald McDonald House for the next few weeks as Navy will require frequent clinic visits for the first month, followed by isolation at home until her immune system recovers.

All the sacrifices are worth it to see their little girl happy and thriving, her mom said.

“We’re grateful that she’s had an easier experience (with transplant), even though the hospital stays are never fun. But I can say that being here, the staff make it so much easier. She loves everybody – until she knows they’re going to poke her.”

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

"Sometimes people ask me, "You make sick kids do school," Stacy Willett, educational liaison, explained. "I like to rephrase that and let them know that usually secondary to getting a diagnosis of anything here in this setting, school is the next stressor for our patients and families because a child's job is to be in school."

On 5 West, the classroom is open to school-age patients five days a week for an hour each day. The kids come for academic support from the hospital's teachers.

"Our mission is to contact schools and make sure they are working on their schoolwork from their home school," Willett explained. We are not providing lessons and doing grading; they are still connected to their home school, which is our hope that they return when they are medically cleared to go back to school in person."

Within the classroom, the brightly decorated walls are full of learning tools like calendars and shapes. Besides general schoolwork, patients are also able to play games and socialize with other kids from the floor. For this one-hour period, it's just them and the teachers.

"It's routine for not only our patients, but it's also routine for our caregivers, Willett said. "Within our classroom, we do not allow caregivers to come to school because they don't go to school when you're at home. It provides an hour of time for the caregivers to take care of themselves and do things they need to do."

If a child is in isolation, the educators find a different way to support them.

"If a student is not able to come to school because of isolation, we still provide bedside instruction," Willett explained.

Willett has been a teacher at Riley for 23 years and adores her job.

"I can't even explain why I just love what I do, I just love Riley hospital and what I do," Willett exclaimed. "I just feel like this job was made for me and I was lucky enough to find out about it."

She is far from the only longtime teacher at Riley; Heather Homan also works on 5 West and has devoted nearly 17 years to patients at the hospital.

"Coming here doesn't feel like a job," Homan explained. "It's part of who I am, and my coworkers, the kids, the families, it's a privilege to serve them every day."

• Young children are at higher risk. Kids ages 1–4 are more likely to drown, and drowning is one of the top causes of accidental death for kids.
• Water can be dangerous almost anywhere—on vacation, in the bathtub, in the backyard, or at a friend’s house.
• The best way to prevent accidents is to follow water safety tips.

How to supervise children around water

Active, undistracted supervision is important because adult supervision saves lives. Choose an adult to watch children in or near water—at the pool, lake, beach, splash pad or even around inflatable pools. Adults responsible for watching children should consider learning CPR in case of emergencies and always enforce simple safety rules.

The “Water Watcher” method

Supervision still matters even if kids can swim, are wearing floatation devices or lifeguards are present. A “water watcher” is someone who stays close and keeps constant eyes on the water.

What active "water watcher" supervision looks like:

• Within arm’s reach: Stay close enough to reach kids quickly.
• No distractions: Put phones away and avoid other distractions while supervising children.
• Take turns: When there are many adults present, take turns supervising.

Prepare for emergencies—learn CPR

In a water emergency, CPR can save lives in the time before help arrives. CPR training for adults who have children or supervise them is recommended. Consider taking a refresher before swimming, or before a vacation and lake weekend.

Teach and repeat simple water rules

Kids do better with clear expectations. Review important rules with kids, such as:

• Always swim with a buddy and keep track of them
• Know where the deep end is
• Know who the supervising adult is if someone needs help

Barriers save lives, especially at home

Many drowning accidents happen when a child finds water unexpectedly, such as at home. Homes can include water hazards like pools, bathtubs, buckets and even toilets.

Pool barrier essentials

• Pool fences: Install fencing that is at least 4 feet high and surrounds the pool (separate it from the house and play area).
• Keep gates locked: When the pool isn’t in use, keep gates locked.
• Self-latching gates: Use self-closing, self-latching gates, with latches out of children’s reach.
• Remove toys: Remove toys that may attract kids when the pool isn't in use
• Add alarms: Consider adding alarms for extra safety measures.

Don't forget "sneaky hazards"

Children are also at risk of drowning in water on top of pool covers. So even pools with safety covers should have fencing or other ways to remove accumulated rainwater.

For everyday home safety, it is important to dump small pools after use, use childproof locks where necessary, and never leave children unattended in bathtubs.

Choose life jackets over floaties

U.S. Coast Guard–approved life jackets are the safest choice for children on boats or docks, and even for weaker swimmers.

For babies, choose a life vest designed with head and neck support and a strap between the legs to help keep their head above water.

Alongside a life jacket, a bright, colored swimsuit can also help parents see their child in the water.

Avoid false confidence from flotation toys. Do not rely solely on flotation toys like arm floaties or puddle jumpers to keep a child safe from drowning. Even with a life jacket, a child still needs constant, close supervision.

Swim lessons for drowning prevention

Swim lessons can be helpful, even for very young children, when taught safely and with close supervision. The American Academy of Pediatrics recommends swim lessons for many children around age 1, depending on developmental readiness.

Choose instructors and programs with:

• CPR-certified trainers
• A strong student-to-instructor ratio
• A format that matches your child’s needs (for example, private lessons if your child has anxiety around water or groups)

Pool, lake or ocean? Consider the setting

Pool safety

At pools, watch for slips, avoid diving headfirst and be careful around drains.

Wet pool decks are slippery and can lead to falls.

Diving headfirst into water can also lead to head trauma. Seek medical attention for head injuries that may include symptoms such as vomiting, loss of consciousness, significant bleeding, or confusion.

Watch out for drains or suction outlets in spas and shallow pools. They can be dangerous if the cover is loose, broken or missing.

Ocean and lake safety

Lakes and oceans differ from pools because open water is unpredictable. You'll encounter different types of waves and changing water conditions. Because of these hazards, life vests are important for kids in open water, and children and adults should never swim alone.

In open bodies of water, don’t overlook cold water and fatigue. Body temperatures can drop quickly in kids. If you see shivering, get them out of the water and warm them up.

Even strong swimmers are at risk when they become tired, experience a head injury or encounter strong currents (which is another reason why constant supervision matters).

A quick “Water Safety Checklist”

Use this as a pre-swim routine:

• Assign a “Water Watcher”
• Keep young kids within arm’s reach
• Use U.S. Coast Guard-approved life jackets
• Enroll in swim lessons when developmentally ready
• Review simple water rules with kids
• Learn CPR and keep a phone nearby for emergencies

For life-threatening emergencies, call 911. If your child needs emergency care, you can find 24/7 emergency medicine services at one of our three Riley emergency locations. Our emergency department in downtown Indianapolis is also home to Indiana’s longest-standing Level I Pediatric Trauma Center.

"I love my family," Delellis said. "I love how they're like supporting me with it."

Delellis continues to attend school five days a week in addition to weekly chemotherapy treatments at Riley Hospital for Children, where she is under the care of Dr. Alex Lion.

"That was one of the first things I liked about Dr. Lion was from the very first moment he was just like, "Yes this is cancer, no this isn't life threatening. This is something that can be treated, and this is how we're going to do it. You did nothing wrong, like you didn't cause this. It's a sporadic tumor."

Delellis' dad, Ian, first noticed something out of the ordinary for Harper.

"He had taken her to an eye appointment and then I kind of remember getting the message like, 'Hey, we need to go for an MRI now,'" Pettit recalled. "When they said you're meeting with an oncologist, we're like, 'Oh. Okay, that's the direction.'"

While Harper and her mom said she was initially scared of her diagnosis, her battle with cancer has not stopped her from enjoying her childhood, which includes reading and robotics.

"Right now, I'm actually 3D printing," Harper said. "I'm really into Percy Jackson right now, and I'm reading the books. I'm on book four and I'm 3D printing Percy's sword."

Harper and her family are looking forward to both the end of Harper's treatment and their trip to Florida through the Make-A-Wish Foundation.

This year’s recognitions span research, clinical leadership, prevention, and community-based care. Together, they reflect how Riley Children’s brings together leading physicians, researchers, and partners to move pediatric care forward, from breakthrough treatments and critical care to mental health support and family education.

Expanding Treatment Options for Rare Conditions: D. Wade Clapp, MD

D. Wade Clapp, MD, chair of pediatrics at Indiana University School of Medicine and physician-in-chief at Riley Children’s, was recognized for his groundbreaking work to improve care for children with neurofibromatosis type 1 (NF1).

NF1 is a genetic condition that causes tumors to grow along nerves throughout the body which can lead to hearing loss, swollen eyes, and changes in the size of arms and legs. For many years, treatment options were limited.

Through years of research bridging basic science and clinical care, Dr. Clapp contributed to the development and clinical validation of targeted treatments designed to shrink or control NF1-related tumors. This work has led to new medication options and improved quality of life for children with NF1 nationally and globally.

Read more at IBJ.

Saving Lives Through Preparedness: Project ADAM Indiana

Project ADAM Indiana, launched by Riley Children’s Health, was recognized for its work preparing schools across the state to respond to sudden cardiac arrest. Led by pediatric electrophysiologist Dr. Adam Kean, injury prevention coordinator Nick Hogan, and community partner and educator Tonya Aerts, the program equips schools with training, emergency response plans and hands‑on drills so staff and students are ready to act before emergency responders arrive.

Sudden cardiac arrest can happen anywhere, and when it does, every second is critical. Project ADAM Indiana is helping schools across the state prepare for these critical moments.

The program focuses on confidence as much as preparation, empowering people to step in and help when sudden cardiac arrest emergencies occur. With dozens of schools already designated as Heart Safe, and more in progress, the program reflects Riley’s commitment to prevention and community safety, helping create safer environments for children and peace of mind for families throughout Indiana.

Read more at IBJ.

Compassion and Innovation in Critical Care: Riad Lutfi, MD

Riad Lutfi, MD, medical director of the Cardiovascular Intensive Care Unit at Riley Children’s, was recognized for his leadership in caring for some of the hospital’s most medically complex patients. His leadership reflects the strength of Riley’s cardiovascular and high-acuity critical care programs, where advanced medicine and coordinated team-based care are essential.

Dr. Lutfi is known for combining advanced technology with deeply compassionate care. He emphasizes teamwork, open communication and partnership with families to ensure that every medical decision is guided by both clinical expertise and the long-term needs of each child.

Colleagues credit his leadership with advancing outcomes while fostering a culture where every voice matters. For families, that translates to expert care delivered with empathy, clarity and confidence during some of the most critical moments of their child’s care.

Read more at IBJ.

Supporting Student Athletes Beyond the Field: Elaine Gilbert, PsyD

Elaine Gilbert, PsyD, pediatric psychologist at Riley Children’s Health, was recognized for her work integrating mental health education directly into the student athletic environment, helping student athletes build mental resilience that supports success in sports, school and life.

Through a collaborative program at Arsenal Technical High School, Dr. Gilbert works alongside coaches and staff to guide student athletes through an 8-week curriculum covering stress management, emotional regulation and confidence‑building.

By normalizing conversations about mental health and making support part of everyday routines, this program helps students navigate pressure, on and off the field, and lays the foundation for long‑term mental wellness.

Read more at IBJ.

Educating Families and Protecting Infants: The Safe Sleep Program

Terri Reed was recognized for her volunteer contributions to the Riley Hospital for Children Safe Sleep Program, which provides families with clear, evidence-based guidance to reduce the risk of sleep-related infant injury and death.

New parents often receive a flood of advice, and it can be hard to know what truly matters. Through the Safe Sleep Program, Riley helps families navigate those early days with consistent education that prioritizes infant safety and systemwide family education.

Through bedside conversations and practical demonstrations from dedicated volunteers like Terri Reed, families learn how to create a safe sleep environment for their newborns before leaving the hospital.

The program has reached thousands of families and is credited with reaching 1,300 patients in the last 22 months, offering reassurance to parents and protection for babies during a critical and vulnerable stage of infancy.

Read more at IBJ.

Three Decades of Healing and Listening: Madeline Zieger, PA‑C

Madeline Zieger, PA‑C, was recognized for more than three decades of caring for children and families recovering from burn injuries.

As a physician assistant in the ABA-verified burn center at Riley Hospital for Children, Zieger has dedicated her career to helping patients heal both physically and emotionally through complex treatment journeys. Burn care often requires multiple surgeries, long‑term follow‑up and ongoing rehabilitation, and families may spend months, or even years, returning for care. Through it all, Zieger serves as a steady and trusted presence.

Her approach goes beyond clinical treatment. Zieger is known for taking time to explain procedures clearly, answer questions, and ensure families feel heard and supported. She recognizes that every patient arrives with fears and uncertainties, and she prioritizes listening, making a true difference in a family’s experience.

Read more at IBJ.

One Mission, Many Ways to Make an Impact

While each of these recognitions highlights a different person or program, they all reflect the same promise: to care for children, support families and strengthen communities.

From preparing schools for emergencies to advancing critical care, supporting mental health and educating parents, Riley Children’s team members are working together every day to improve lives across Indiana.

To learn more about those recognized in this year’s awards, read more at the Indianapolis Business Journal.

Questions that help identify a sprain, strain or fracture

A sprain is an injury in which a ligament (the tough tissue connecting one bone to another) is stretched or torn, usually from twisting a joint too far. A strain is the overstretching or tearing of a muscle or tendon, often caused by overworking a muscle. And a fracture is a break, crack, or chip in a bone, ranging from a small hairline crack to a complete break that may even pierce the skin.

The questions below can help your child clearly describe the symptoms they are experiencing.

Where is your pain located – around a joint, in a muscle, or directly over a bone?

Pain directly over a bone is more likely to be a fracture or stress injury to the bone. Muscular pain or pain in the soft tissues around the joint tends to be more of a sprain or a tear.

What were you doing when the injury occurred?

How the injury happened can give the doctor helpful clues about what kind of injury it may be. The way a leg or arm is positioned when an injury happens can result in different outcomes, such as a dislocation or a fracture.

Did you hear a “pop” at the time of injury?

The feeling of a pop or hearing a pop can clue the physician into if something was potentially torn or dislocated. For example, a pop in the knee with a twist and immediate swelling has a high likelihood of an ACL injury. Fractures can also cause a pop that you can hear.

Is there swelling or bruising? Where is it most noticeable?

Swelling can occur after many types of injuries. Big swelling immediately around a joint can indicate ligament injuries or fractures within the joint. Bruising can be caused by many different things.

What movements make the pain worse?

Pain with stairs, lunges, or squatting can indicate problems in the front of the knee for example, around the kneecap. Pain with repetitive movement versus one single movement can give the physician information about various types of injuries and how long they have been going on.

Does the joint feel unstable?

Feelings of unsteadiness can result from several things including weakness, ligament injuries and even pain. Differentiating these types of feelings can really help in identifying how the joint is acting.

Is there numbness, tingling, or unusual sensations?

Numbness and tingling can indicate nerve injuries in some cases. There can also be a feeling of numbness or tingling after having a traumatic injury to the extremity without true nerve injury.

Do you have muscle spasms or cramping?

Cramping and spasms can indicate dehydration as well as electrolyte abnormalities. Sometimes patients experience muscle cramping after surgical procedures as well.

What movements are limited?

Certain limitations such as full motion of the joint or maybe even specific athletic positions can give the physician a better idea of how the limb is injured. Motion may be limited by injuries or significant swelling.

Can you continue normal activity or put weight on the area?

Typically, if the patient or athlete can put weight on the area and perform some basic athletic movements without noticeable difficulty, then they are ok to go back into the activity. If limping or significant pain is still ongoing, the patient is at risk of reinjury or new injuries during that activity.

Your child’s answers to the above questions help the physician understand what parts of the body may be hurt and what type of care will support their recovery.

Specialized care for orthopedic injuries at Riley Children’s Health

If your child does suffer an injury, they can receive same-day access to highly skilled pediatric experts. Riley Children’s offers walk-in care for orthopedic injuries at the IU Health North Medical Office Building in Carmel, Monday - Friday from 9 am - 6 pm. No appointment needed. If your child needs emergency care, you can find Riley Children’s 24/7 emergency medicine services at one of our three Riley Children’s Health emergency medicine locations.

Whether he is doing emergency “surgery” on a stuffed monkey, orchestrating a dance party for his team to let off steam or walking into an exam room to find his patient sporting a fake mustache to match his own, Dr. Mark Hoyer has always made room for humor on the job.

It doesn’t diminish his effectiveness as director of cardiac catheterization and interventional cardiology at Riley Hospital for Children over the years. It only endears him more to his patients and colleagues.

After 25 years at Riley, the Air Force veteran who did his medical residency at Wright-Patterson Air Force Base in Ohio is winding down an illustrious career tending to the hearts of big and small kids.

“I have seen some patients for so long that they have kids of their own now,” he said. “That’s really cool. You’ve gotten them where you wanted them to get to – through their childhood – to be able to enjoy marriage and children. That’s pretty amazing.”

He’s pretty amazing, his colleagues say as they try to imagine a cath lab without Dr. Hoyer.

“He is the cath lab,” said Rosie Bland, who started working in the lab in 2015 as a nurse before transitioning to nurse practitioner in 2020. “He has shaped the practitioner I am.”

She has watched as he not only pioneered many of the interventions the team does in the lab but also built relationships with families, always taking the time to go over testing results and answer every question they have.

He is passionate about his job and his responsibility to patients, as well as to the well-being of his team.

“He would never hesitate to go to bat for his nurses,” Bland said.

Dr. Hoyer would be happy to hear her say that because he has worked hard to create an environment in which nurses feel empowered and respected, he said.

“They’re hugely valuable to our team. We’ve built a team of nurses who are envied within the operating room space.”

And he will fight for them without apology.

“He has spent many years building the lab to what it is,” Bland said, “and it’s a place people want to come to work in.”

Sometimes they come ready to dance.

“He’s well-known for the dance parties we used to have,” she said.

Those dance parties were open to anyone who happened to be around and wanted to work off a little stress, especially during the days of COVID.

“We take our work very seriously, but it’s a chance to unwind at the end of the day,” Bland said.

For Dr. Hoyer, it was a way to nurture that feeling of team – of family even. Which is why “We Are Family,” by Sister Sledge, was usually on the playlist.

Dr. Hoyer, who grew up in Columbus, Ohio, and earned his undergraduate degree from the University of Notre Dame, went to medical school at Ohio State University on scholarship. He did stints in San Antonio and Florida, where he trained on the interventional side of cardiology, which is what led him to Riley and IU Health in 2000.

He basically built the interventional cardiology program at Riley from the ground up, participating in many clinical trials that allowed access to state-of-the-art medical devices to treat heart defects.

Along the way, he mentored many learners and residents, teaching them not only the mechanics of the job but the heart of it as well.

One of them is Dr. Kaitlin Swanson, who completed her pediatric residency and cardiology fellowship at Riley before leaving for one year to get her interventional training in Chicago. She joined Riley and the IU School of Medicine faculty last year.

“Throughout my fellowship, I knew I was going to pursue a career in interventional cardiology, so I spent a lot of time in the lab with Dr. Hoyer and his two partners,” she said.

“What was really important to me was having the blessing from him before applying to interventional fellowship positions. I wanted to make sure he thought I could do it.”

Since she returned in August, the two have worked side by side and independently while she has soaked up all of the knowledge that she can, benefiting from his expertise, his ingenuity, his leadership and his compassion, Dr. Swanson said.

“Having his support for the last four years has been so important. The other thing that is so clear to me is how many patients are attached to him and are so sad when they hear that he won’t be doing their procedures in the future.”

Dr. Swanson joins Dr. Michael Ross and Dr. Ryan Alexy in sharing the workload in the cath lab as Dr. Hoyer winds down his practice, aiming for retirement next month.

Considered the “dad of the cath lab” by the nursing team, especially longtime nurse Lauren Humphrey, Dr. Hoyer is well remembered for the time a few years back when he patched up Mississippi the monkey for a young patient while she recovered after an outpatient procedure.

The smile stitched onto Lexi McGrath’s stuffed monkey had come loose, so nurse Lisa Bauermeister asked Dr. Hoyer if he might have time to see another “patient” that morning. The cardiologist was all in, grabbing a pair of surgical scissors and a sewing kit he keeps in his office.

“There wasn’t much room to work on the face, but we got it done and it was fun,” he said.

It’s not the first time he’s tried to put a smile on a patient’s face, but this might have been the first surgical repair job on a stuffed animal, said the father of three and grandfather of nine.

“Obviously, it’s a privilege to take care of these kids and hopefully do right by them,” he said at the time. “That’s what they deserve.”

Julie McGrath said the care Dr. Hoyer took with her daughter’s well-being meant the world.

“Who would have gone that extra step? We didn’t expect it, but to see that he had taken the time to do that just showed the extraordinary ways that he takes care of his patients. He’s an extremely kind man,” she said.

“I just enjoy taking care of kids,” he said. “Whenever I can make a connection with a family, even if it’s in a self-deprecating way, they realize I’m just a human being.”

Plenty of his patients and nurses play along, whether it be wearing fake mustaches to match his own or decorating their surgery cap with “the many faces of Dr. Hoyer” just to see if he would notice. (It took him a minute.)

“My kids will tell you I’m a pretty simple person,” said the physician. What he means is, “I’m a straight shooter.”

His patients and families appreciate that.

“I’m aware of sensitive issues and don’t want to be too harsh, but I also don’t want to beat around the bush,” he said. “Many people have told me they prefer that approach to sugar-coating the gravity of a situation.”

If it’s not already obvious, Dr. Hoyer finds joy and satisfaction in taking care of kids, even when they grow up and need adult care over at IU Health Methodist Hospital.

Like the 23-year-old he saw recently who was probably 7 or 8 when they first became a patient.

He chuckles when he remembers a girl of about 2 he was examining when he asked her what she ate for breakfast.

“Steak and cigarettes,” she said with a straight face.

Her parents jumped out of their seat, he recalled, saying, “We don’t even smoke. We have no idea where that came from.”

Out of the mouths of babes.

Dr. Hoyer, a lefty and a huge sports fan who played a lot of tennis as a kid and as a student at Notre Dame, competed in the 55-and older group for a national tennis competition a decade ago. Being left-handed in doubles matches was an advantage, he learned.

Being left-handed in the cath lab takes some adjustment.

“The cath lab is a right-handed world.”

But in medicine as in life, lefties are good at adapting, he said.

As he approaches retirement, the physician, who will celebrate his 44th wedding anniversary with his wife, Maureen, in August, looks forward to playing more pickleball than tennis these days, continuing his hobby of bird photography, and spending time with his family.

But before he goes, there might just be one more dance party to send him on his way.

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

Five years ago, Jess Gerhardt was in a hospital bed at IU Health University Hospital, 11 days away from a liver transplant.

Months before that, she was desperately ill with COVID-19, intubated in the ICU, while her body and her care team fought off the pneumonia and sepsis that was threatening to shut down her organs.

Today, the 40-year-old is in her second year as a nurse on the CVICU at Riley Hospital for Children.

It’s been a wild five-plus years for Gerhardt, who previously worked in communications and public relations. Going back to school to earn a second degree in nursing is directly related to the care she received during her health crises, she said.

“The nurses at University are why I am a nurse now,” she said. “They are so incredible, so smart and so talented that I was inspired to change careers.”

Gerhardt, who grew up in Carmel and wrote for the award-winning Carmel High School newspaper, once dreamed of becoming a romance novelist but pivoted to a career in communications and event planning.

Nursing was not on her radar.

In November 2020, she contracted COVID and was hospitalized for several weeks. In January, she was back in the hospital after multiple setbacks, including pneumonia, sepsis and liver and kidney failure, the latter requiring dialysis.

When it became clear that she would need a liver transplant, she was transferred to University from IU Health North Hospital, where she recovered enough to become eligible for transplant.

“I was so sick at the time they were concerned I might not even make it through the surgery,” she said.

After weeks of treatment until her condition stabilized, Gerhardt was listed for transplant and was matched with a liver just two days later. University/Riley transplant surgeon Dr. Chandrashekhar Kubal performed the surgery.

Gerhardt, whose two siblings passed away several years ago, was determined to make the most of this second chance.

“I remember telling Dr. Kubal, ‘If you give me the organ, I will do the rest.’”

Oddly enough, Gerhardt said, the transplant was the easy part, even though it was her first-ever surgery. Quite a first.

“Go big or go home,” she joked.

Recovery was challenging due to multiple infections not related to the organ, but difficult nonetheless. She lost 100 pounds over the course of her illness and recovery and had to relearn how to sit up, stand and walk during a monthlong stay at a rehab hospital.

Upon discharge from rehab, she stayed with her parents while she continued her recovery, and it was during that time that the idea of changing careers began to percolate.

She felt pulled to move into a field where she could have more impact. It was an excellent motivator to continue the work it would take to heal.

In early 2022, she went back to school to take some pre-requisite courses before enrolling in IU’s accelerated nursing program, completing her degree in 2024.

“It’s difficult to go back to school in your 30s, but I’m so grateful I had the opportunity to do so because I was saved by my healthcare team.”

While in school, she did one of her clinical rotations on the same unit at University where she was treated, working alongside some of her transplant nurses.

“It feels like my entire life has been leading up to this moment,” she said. “It feels beyond full circle.”

She also spent two days during clinicals with the wound care team at Riley, visiting several units.

“It was my first experience with pediatrics and Riley, and I fell in love with it during those two days.”

When a tech position opened on 3W, she applied during nursing school, and that’s when she knew Riley was it for her, particularly the CVICU.

“I wanted to go into an area that had transplant, and I get that in the Heart Center,” she said. “It’s really important for me to be an encouragement for families to show that you can have a full, healthy life after transplant.”

Haley Engwer, whose 6-month-old son Noah, is waiting for a heart transplant in the CVICU, sees that up close.

"We love Jess," she said. "She goes above and beyond for Noah and us. She advocates constantly for what she believes is best for Noah. She is literally the best human ever."

Tricia Harris, Gerhardt’s post liver transplant coordinator, counts Gerhardt among her favorite patients.

“She uses her humor to deal with anything and everything that comes her way.”

Although she had multiple procedures after transplant due to unrelated complications, she has done extremely well, Harris said.

“I think one of the reasons she did so well after the transplant and even still today is because of her outlook on life and positive attitude. She always finds a way to turn something that could be depressing or frustrating into a laughable/shake-it-off moment. I appreciate that about her very much.”

That attitude, along with her experience as a transplant patient and the compassion she brings to her job, all go a long way toward making her a better nurse, Harris said.

Her communication skills come in handy, too, Gerhardt said, whether it’s talking to doctors, other nurses, parents or patients.

“I get to be the best patient advocate. That’s what I wanted – to emulate the strong patient advocacy I received from my nurses,” she said.

“I’ve taken a lifechanging and terrifying experience and turned it into something I can use to help patients.”

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

A 12-year-old Greenwood girl has made history at Riley Hospital for Children.

Elin Lewis has been a patient at Riley for years, undergoing regular blood transfusions for treatment of thalassemia, an inherited genetic condition where the body’s red blood cells don’t contain the necessary proteins to carry oxygen to all parts of the body.

She is now the first patient in Indiana to receive a new form of gene therapy that gives her the chance to live a normal life. A new program at Riley offers the possibility of a cure by collecting the body’s stem cells, re-engineering those cells, then transplanting them back into the body.

The gene therapy program gives hope to families whose children are affected by non-malignant blood diseases such as thalassemia and sickle cell disease that often require regular blood transfusions, as well as other red blood cell disorders like acquired aplastic anemia.

The therapy avoids the risks inherent in traditional stem cell transplant, including the difficulty of finding a good donor match, as well as graft vs. host disease and graft rejection.

Elin’s stem cells were collected back in November at Riley and modified offsite before she returned to Riley in February to prepare for the modified cells to be transplanted back into her body.

“This is such a big step for Riley Hospital to be offering these next-generation therapies,” said Riley stem cell transplant physician Dr. Jonathan Bardahl, who did his fellowship training in stem cell transplant at Children’s Hospital of Philadelphia before arriving at Riley in 2024.

Elin, who was discharged from Riley last week (one month after her infusion), “did an amazing job” and is currently engrafting her gene-modified (GM) stem cells as expected, Dr. Bardahl said this week.

She will follow up in clinic weekly, then transition to monthly appointments for the first year.

“From here, her new GM stem cells will start making more stable hemoglobin, and hopefully she will require no more red blood cell transfusions for the rest of her life,” the physician said.

Dr. Seethal Jacob, who hosts a regular multidisciplinary clinic with Dr. Bardahl and other specialists for patients with thalassemia and sickle cell, is thrilled to see the program get off the ground.

“To see it get through the studies, get FDA approval and now get to the point where we can administer it through our own institution is just wonderful and a testament to all the work our Riley teams and collaborators have done to lift up sickle cell and thalassemia care,” she said in a previous interview.

According to available data, up to 95% of transfusion-dependent thalassemia patients who complete the therapy no longer require transfusions, Dr. Bardahl said.

Elin’s parents, Nathan and Monica Lewis, are grateful to have the revolutionary treatment available so close to home.

“We are very hopeful,” Monica said this week. “It was a really good experience. The nurses were absolutely amazing, they were my heroes, and the whole stem cell team is so wise, so informative.”

The nursing team got Elin through some tough times during her hospitalization, she added, “as they do all the kiddos on that floor.”

The Center Grove middle schooler will finish out the school year remotely, but she is already back on the trampoline practicing her gymnastic stunts, her mom said.

“She didn’t skip a beat.”

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

When Sarah Donlan enrolled at Indiana University Bloomington as a freshman, she knew two things about her future career: She wanted to work with kids, and she really liked healthcare.

A part-time job in a research lab focused on the social development of toddlers helped crystallize her vision in the area of Child Life, which is how she landed at Riley Hospital at IU Health North, supporting kids and parents before, during and after surgery.

A child life specialist (CLS) is a certified healthcare professional who helps children and families cope with the fear, anxiety and trauma of medical situations, illnesses or hospitalizations.

Donlan, who started her career at IU Health Arnett Hospital, joined the team at Riley’s flagship campus in Downtown Indianapolis about three years ago. There, she worked on 9E, primarily supporting surgery patients and others undergoing endoscopies.

“I found from working on 9E that I loved surgery … getting to prep kids and support parents,” she said.

When a position came open in surgery at Riley’s IU North location in Carmel about a year and a half ago, she made the switch.

“I get to work with some of the surgeons and the GI team I worked with on 9E, and it feels good to be there for families,” she said. “No matter how small a surgery is, it feels big to them.”

That’s why she took the time last week to connect with 8-month-old Stetson Savage and his dad, Caleb, as the two checked out a toy fish tank before the baby went back for surgery.

“I try to connect with kids through their interests and establish common ground, whether that be with a toy, clothing or something on a backpack,” she said.

“It’s about noticing and taking an interest in them. I think that gets me pretty far with kids when you look at them as more than a patient but as a child who has hopes and dreams.”

Little Stetson might be too young to have hopes and dreams, but when he started to cry before surgery, Donlan offered comfort and reassurance.

“In supporting parents, I remind them that it’s OK for their kiddos to cry,” she said. “It’s heartbreaking for parents, but it’s developmentally appropriate. We know they’re safe and supported, but it’s OK to normalize crying as a form of coping in kids. It lets people know you’re upset, something is hard, and you need something. And that’s not wrong.”

She might have only 15 minutes with a family before surgery, but it’s her goal to build trust and confidence within that time limit.

“I love the challenge of quickly establishing rapport with a patient and family. I also love getting to work directly alongside the Riley doctors. Getting to collaborate to create the best patient experience possible and having that immediate feedback from a patient interaction makes me feel incredibly valued.”

Donlan, who married Brandon Barthel in September, is still in her 20s but jokes that she has “grandma hobbies” like crocheting baby blankets, reading and walking the couple’s dog, Julian.

She is grateful her career brought her to Riley, a place she describes as “super special.”

“Riley values Child Life more than anywhere I’ve ever heard of,” she said. “Our physicians respect us, and our nurses rely on us. We have the resources and ability to be the best at what we do … and I’m just so thankful for that.”

"I didn't think about being a doctor until I saw it up close and personal," Dr. Ledet said. "I thought, 'Man, this is a really cool job,' but I asked so many doctors, like can I shadow you? And so many of them were like, 'Man, you're a security guard. Like you're not about to become a doctor.' I poke fun and say they were right. I didn't just become a doctor, I became a triple board doctor. Or, I'm almost there."

Dr. Ledet grew up in Lake Charles, Louisiana. He explained he did not meet many doctors then, especially ones that look like him.

"I grew up poor; I grew up broke," Dr. Ledet said. "I knew the importance of dreaming even early on. I think my grandmother really helped me to understand it. My momma, definitely. And my faith. For kids now, I have to understand I can't fix their home situation all the time. Obviously I'm in Riley all the time and I see kids who are in unfortunate home circumstances. I tell them dream, dream, dream, dream, don't let anybody kill your dreams. You're resilient enough to make it through what you're going through right now. But then you can start to work on your dreams when you get old enough to have a little power."

Dr. Ledet served for five years of active duty in the United States Navy before his wife convinced him to go to college. He then attended and graduated from Southern University.

"I didn't get into med school the first time," Dr. Ledet said. "So I ended up getting a PhD from the NYU School of Medicine in molecular oncology and then tried to go to medical school, and that time I got in on a full ride at Tulane University. As I was finishing up my medical school training, I decided that I really wanted to be a pediatrician and a child psychiatrist. I'm specializing in pediatrics, adult psychiatry and child and adolescence psychiatry. Right now I'm a child and adolescent psychiatry fellow which means I'm seeing a lot of kiddos and taking care of their mental health needs, and it feels good!"

On this Doctors' Day, Dr. Ledet is grateful for the recognition of physicians but is quick to express his gratitude for everyone who makes up the care teams.

"Being a doctor is a really cool job, but doctors are not successful individually," Dr. Ledet said. "They require a team of people from admin people to janitorial services to the cooking staff, we all work together. While I'm glad on National Doctors' Day we're celebrating doctors, just realize that every doctor has a team with them that's helping them be a successful clinician for that patient."

After moving to Indianapolis from St. Louis, the pair found confidence and care at Riley's Maternal-Fetal Medicine and specifically with Dr. Hiba Mustafa and her team. An 18-week ultrasound confirmed the TAPS diagnosis which quickly led to a procedure for Ashley and her babies.

"Found out on a Friday afternoon, surgery on Monday morning," Slauter said. "Obviously there's a level of urgency with that, but at the same time we're just really learning what's going on and what this really was. And yeah, kind of before we really knew it, we were getting it resolved."

Dr. Mustafa explained the importance of correcting this complication.

"Twin Anemia Polycythemia Sequence, known as TAPS, is basically a complication that can happen in twins who share a placenta or what is known as monochorionic twins," Dr. Mustafa said. "Almost all these twins, on the surface of the placenta, the vessels, some of the vessels, connect. What we end up having is one baby that's anemic or one baby that's polycythemic, or having extra blood. If that condition worsens or stays there, that might result in complications. The most serious complication that can happen is actually losing one or both of them."

Dr. Mustafa said Slauter's case ultimately led to a decision to undergo laser surgery.

"The way we do it is, we use something called a fetoscope," Dr. Mustafa explained. "It's kind of like a small camera that goes into the uterus and then we try to find through that camera, those vessel connections that I mentioned between both twins on the surface of the placenta. Then we pass a laser fiber, and we try to burn all these connections to artificially separate the placenta into two placentas. That will hopefully resolve that imbalance share."

The procedure was successful for the Slauter family. The condition was resolved and seventeen weeks later, their baby boys were born.

"Not all kiddos diagnosed with TAPS have the story that we do, and I think a lot of the reason why our story is so happy is because of early intervention and the great team at Riley," Slauter said.

Dianne Seibold can still hear the surgeon’s voice on the other end of the phone.

“Dianne, you wanna save a life with me tonight?”

Her response was always the same. “Absolutely.”

Didn’t matter if it was 10 o’clock in the evening or 2 in the morning. She was ready to go.

“To be a part of that, knowing you made a difference like that, there’s no career I would ever want other than what I’ve done.”

As an operating room nurse at Riley Hospital for Children for four decades, most of that time with the neurosurgery team, Seibold has been a part of saving many lives. She has touched countless more with her positive attitude, her dedication and her love for Riley.

She is retiring April 2 after a 43-year career, the last few years spent in a clinical education coordinator role training OR nurses.

Leaving now feels right, she said, even though she gets emotional talking about it as she walks through the halls of Riley, still impressed with the growth she has witnessed over the years.

Seibold, a certified scuba diver who also has a black belt in karate, has grandbabies to spoil, mission trips in Africa to continue and a new chapter of life to live.

But Riley will always have her heart, she said.

Although she knew from the age of 5 that she wanted to be a nurse, pediatric nursing was not her goal. Too painful, she said. She figured adults were more her speed.

But after a year of working on a surgical floor at what is now IU Health University Hospital, a position as an operating room nurse at Riley came open. The OR was where she longed to be, so she took a leap of faith.

“I came here and thought, ‘This is home.’ I knew from the day I started here.”

No doubt she would have had an impact wherever she worked, but her colleagues at Riley are grateful she landed where she did.

“Always knew what to do, persistently positive, one of my best friends, irreplaceable.”

That’s how Dr. Laurie Ackerman describes Seibold, who steered the neurosurgery nursing ship in the OR for decades. Dr. Ackerman was a neurosurgery fellow when the two met, and their careers were inextricably linked.

The two remain close today. In fact, Dr. Ackerman hosted a party for Seibold recently, attended by past and present Riley neurosurgeons and other friends and team members.

“She’s always had a wonderful way of nudging people along without them realizing she was guiding them down the right path when something wasn’t going well,” said the neurosurgeon.

“She’s a person you’d like to clone and have a team of every day.”

Seibold has done everything she can to prepare the OR nursing team for her departure, taking the reins of onboarding and training cohorts of new nurses over the past few years.

Katy Morris will slide into Seibold’s role going forward.

“She’s going to be great,” Seibold said.

Kirsten Reid, nursing professional development practitioner, was in the first cohort of nurses whom Seibold onboarded in her new role. She has since joined her mentor and friend in an educator role, ensuring Riley has a full team of OR nurses, with more in the pipeline.

Coming out of COVID, things were not easy, Reid recalled.

“Dianne got our boat through the storm.”

She did that by continuously moving forward.

“She has this ability to take a deep breath and keep going. We had so many traveling nurses, so many people coming and going, it was easy to just get fatigued,” Reid said, describing the challenges in healthcare during that time.

“But she just kept going, and now we are fully staffed. We went from having 30 travelers to having none, and that is absolutely because of her.”

Seibold is not one for the spotlight, but she is proud of what she and her team have accomplished. She feels like a “mom” to many of the younger nurses, and yes, she is known to be kind and encouraging, with an uncanny ability to care for people professionally and personally, Reid said.

But she also challenges her colleagues to be their best. She never relaxed her standards in the OR.

“She will do whatever she needs to do to make sure the patient gets the best care,” Reid said.

That’s what Dr. Mark Cain, chief of pediatric urology at Riley, remembers about his years of working with Seibold.

“She represents the Riley institutional wisdom and care that make us the place we are,” he said.

While she spent the bulk of her career assisting in neurosurgeries, in the early days, nurses rotated through different service lines.

“I remember once when she was scrubbing in with me, and she looked me right in the eye and said, ‘You know, I don’t know if I remember how to do this, but we’re going to do this together.’ It was that can-do attitude, the feeling of working together. And her eyes just twinkled behind her mask,” he said.

“She has a way of letting people know she’s there for you. She was always interested in the operations I did and wanted to know what I needed before I needed it. Just an unbelievable attention to detail.”

That’s a requirement for a surgical nurse, Seibold said, in addition to being a good team player, being a strong advocate for the patient, being a bit of an adrenaline junkie and being good with change and technology.

“I’ve had the privilege of watching the advancement of medicine,” Seibold said. “That’s what’s so amazing about being part of an academic health center because you’re constantly doing new things, bringing in new programs, doing research, all for the good of the child.”

Unlike her husband, Steve, who is also retiring (the couple have three children and seven grandchildren), she has some mixed feelings about leaving her career after so long in the same place.

“It will be hard,” she said. “I’m not leaving because I’m tired, but it’s time.”

She is leaving Riley better for her time here, her friends and colleagues say.

“One of the best we’ve ever had at Riley,” said pediatric surgeon Dr. Fred Rescorla, describing her as the “go-to person” for most of her career.

“She was beloved by the neurosurgeons,” he said. “It seemed they were only happy if she was around. They had complete confidence in her.”

Her presence in the operating rooms at Riley will be felt for decades to come, as new nurses trained by her follow in her footsteps.

Dr. Cain is a firm believer that a person’s leadership success is defined by how well the organization performs without that person.

If it does well, he said, “that means you’ve led correctly and you replaced yourself before you left. You can’t replace 40 years of wisdom, but you can replace a style and thoroughness of training, and she’ll surely do that.”

In addition, he said, “She waves the Riley flag in a proud way, which is really heartwarming.”

That won’t change, even as she leaves the hospital, Seibold said.

“I’m very blessed to have had the career I’ve had. When you tell someone you work at Riley, they’re like, that’s so cool, and it is. Nobody will ever be able to take that from me. This is my home. It’s where my heart is.”

Her heart might be a bit heavy next week, but she is grateful for the journey and the people she’s met along the way.

“When you find your dream, go for it,” she said. “Before you blink your eyes, it will be done. What a blessing I’ve had.”

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