Keyla Patton might not be able to walk on land, but in the water she is unstoppable.

Her grandparents call her their “little mermaid.”

The 16-year-old Indianapolis resident has cerebral palsy due to exposure to a virus in the womb. As a result, she is nonverbal and uses a wheelchair.

None of that matters in the pool. Keyla, working with Riley Children’s Health physical therapist Trevor Taylor, squeals with delight as she is lowered into the pool at Healthplex on the city’s west side. The water temperature is a soothing 88 degrees, and she is ready to show off.

Nearby is her friend Jacob Johnson, also 16 and a Riley patient working with therapist Madeline Craw. The two like to compete in pool basketball and other games.

Taylor has worked with Keyla in the water for about three months. It’s sometimes hard to tell who is more excited about the therapy – Taylor or Keyla – because he radiates positivity, a trait that endears him to his patients.

Riley outpatient PT manager Sarah Johnson describes him as “magic in the water.”

For Taylor, the trick is in the water itself. He and Craw love helping patients boost their endurance, strength and confidence during intense 45-minute therapy sessions that look very much like fun.

“Right now, outside the water, Keyla is restricted in her chair, and we want to open up the world to let her do more and more,” he said. “The water is a great place for her to get those legs stronger, to get her confidence back up.”

Aquatics therapy for Riley patients has returned in the past year, thanks to an agreement with Healthplex to rent time in the pool each week. Years ago, hospital therapists worked with patients in pools around the city before the program was discontinued. Its roots, however, go back some 90 years.

On Sept. 5, 1936, President Franklin D. Roosevelt visited Riley to see its new hydrotherapy pool, designed to support patients with polio. It was built in part to replicate the center FDR founded in Warm Springs, Ga., which helped him in his own battle with the disease that left him paralyzed. The polio vaccine, introduced in 1955, transformed a terrifying epidemic into a preventable disease.

Water therapy has a number of benefits, Johnson explained. The pressure and warmth help patients experiencing pain to move and strengthen weak muscles. The buoyancy helps kids with neuromuscular conditions stand and walk without the risk of muscle breakdown or the fear of falling.

Taylor remembers the first time he and rehab tech Abbie Hawkins slowly transferred Keyla from her motorized wheelchair into a hydraulic lift, buckled her in and eased her into the water before letting her stand on her own.

“As soon as her feet hit the water, she was giggling,” he said. “She knew she was in for fun. There was no coaxing … she was ready to go around the whole pool.”

Grandparents George and Melissa Patton say Keyla has always been a water baby. Despite struggles, she began walking at the age of 7, but multiple surgeries on her hips and knees, then COVID lockdowns, interrupted her progress.

Over the years, Keyla has also had occupational therapy, physical therapy, feeding therapy and robotic therapy, Melissa Patton said, “but her favorite is aquatics, no question.”

“I see her walking again, and I really attribute that to aquatics because she’s walking in the water like she was on land,” Patton said. “The memory, the desire is still there.”

Taylor would love to see it, but for now, he said, the goals are to get her legs stronger and make transfers in and out of her wheelchair easier.

“Let’s see what we can do next,” he said. “Now, I can be two or three steps away from her and trusting that she can keep her own balance. It’s slowly giving her more independence.”

Water is the great equalizer, he believes. “We’re all floating together; we’re on the same level for a bit. She feels like she’s part of the community, and that’s what I want to see.”

Witnessing how much Keyla has achieved in the past three months is its own reward, Taylor said.

“It’s been super exciting to see how much she’s really grown and expanded her own environment. It’s a joy to see.”

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

Scarlett Luanne Hoover was born on December 28, 2023, with an extremely rare genetic condition called KID syndrome. KID stands for keratitis-ichthyosis-deafness syndrome.

"Her variant of this condition is A88V," Matt Hoover, Scarlett's dad, explained. "From what we understand, this is what's considered the most severe variant."

Geneticist Dr. Erin Conboy explained that this genetic condition is caused by pathogenic or disease-causing variance in a gene that's in charge of making cells stick together well, and when that particular gene has a disease-causing variance in it, it doesn't allow that protein to be made well.

"That means that the skin itself does not fit together as well as it should, which is what causes kind of the worst part of the symptomatology, which is having thickened but breaking apart skin unfortunately," Dr. Conboy said.

While the smiley little girl suffers from wounds and bleeding across her whole body, her mom, Mariah Williamson, said Scarlett does not indicate she is in a great deal of pain.

"I think she's just mainly uncomfortable," Williamson said. "Just because of her skin, with her scratching, she itches all the time. Unfortunately, she can make herself bleed. Her nails they're not normal. They can be really thick. Sometimes they can be claw-like. So, they're hard to stay trimmed. It's really the skin on the palms of her hands that make her bleed because it's so thick."

Williamson works diligently to keep up on her daughter's skin care to avoid further discomfort.

"I lather her in Aquaphor," Williamson explained. "Her bandages that are covered up, we have a gentamicin ointment which is a broad-spectrum antibiotic. And then she has special wound dressings; It has silver in it to help with her wounds."

Dr. Conboy explained that KID syndrome is an autosomal recessive condition.

"That means that we all have two copies of this particular gene: GJB2," Dr. Conboy said. "People who have one copy that has a misspelling in it are fine and they're carriers of this condition. But if a mom and a dad have a child and they happen to pass on both of their misspelled copies of this gene, then the child has the condition. This is recessive, meaning the child needed to inherit both copies."

Dr. Conboy said KID syndrome would rarely, if ever, show up on an ultrasound. But certain genetic testing could detect it, though genetic testing following Scarlett's birth found neither one of her parents is a carrier of the misspelled copy of the gene - making Scarlett's case extra rare.

"There's pre-conception genetic testing." Dr. Conboy said. "There's also genetic testing that can be done in utero. From that perspective, we would recommend carrier screening for parents. Then that carrier screening can determine whether there's a risk for the child. So, if parents happen to be carriers for the same condition, then we talk about the risk to future pregnancies."

There are only 100 published cases of KID syndrome ever, so this condition is extremely rare. Scarlett's parents said that early on, doctors gave her a prognosis of one year or less.

"It's very surprising that she is still here," Williamson said. "They don't live past a year old with her variant with her syndrome, and she'll be three in December."

Dr. Conboy explained why she is always hesitant to provide families with a life expectancy number, especially when little is known about a certain condition.

"We rely on the literature and our personal experience about how kids will do over time," Dr. Conboy said. "And what I've learned, and my colleagues have learned, is that just because the literature says that life expectancy is a certain time frame, that doesn't mean that the child in front of you is going to have that same course. So, what I like to tell families is that life expectancy and how kids will do over time is really unpredictable, because they're just too many variables. They're genetic variables, environmental variables, and things that even we don't have an idea about right now. And so, I would never, in my experience, say never put a timeframe on morbidity, mortality, life expectancy; things are just too unpredictable for that future."

For now, Scarlett's parents try to live every day to the fullest. Scarlett provides them plenty of joy between her contagious laugh, funny facial expressions and her love of the Mickey Mouse Clubhouse.

"She's a very funny, outgoing little girl," Williamson said. She is still very much so just Mommy and Daddy's girl, though."

Talk about heart. A young patient at Riley Hospital for Children needs a new one, and a college coach just showed how big his own heart is.

It started as a comment from one Purdue University basketball fan to another. It grew to include Boilermaker coach Matt Painter and a sick 12-year-old waiting for a heart transplant.

Riley cardiologist Dr. John J. Parent, himself a Purdue grad, has known Bryce Lakin since his patient was just a few days old. Bryce was born with complicated heart conditions, including single ventricle anatomy, and has already had three open heart surgeries – the first one at 6 days old – all performed by cardiothoracic surgeon Dr. Mark Turrentine.

Recently, Bryce’s heart began failing, and he was listed for transplant last month. He was admitted to Riley on July 31 and will remain there until a donor heart is found, a wait that can take months or longer.

“We knew transplant was going to be in his future,” Dr. Parent said, adding that Bryce himself recently told the cardiologist he thought it was time.

What Dr. Parent also knew was that Bryce and his dad – his entire family really – were huge Purdue fans. Jeff Lakin earned a degree in crop and soil management from Purdue and has held season tickets to Purdue basketball games for the past 20 years. Bryce and his sister have gone to games with their dad for years.

The family lives in Rensselaer, Indiana, about 40 minutes from West Lafayette.

Dr. Parent knew Bryce was disappointed at having to spend so much time in the hospital. He was missing out on seeing his friends at school and showing his pigs at the fair. And he had to celebrate his 12^th birthday at Riley.

The physician had an idea and got the ball rolling. After clearing it with Bryce’s parents, he reached out to a Purdue basketball representative and asked if there was anything the team could do to lift the boy’s spirits.

How about a lengthy FaceTime call with Coach Painter himself?

That’s what happened two weeks ago, and Bryce is still riding that high.

“We talked for 25 minutes straight basketball,” Bryce said from his hospital bed, surrounded by Purdue blankets, pillows and wall decorations. “He was nice.”

Jeff Lakin was with Bryce during that call. He and his wife, Laura, split time with Bryce through the week so they can continue working and caring for Bryce’s two sisters.

Lakin will never get over the joy Painter brought to his son.

“It was awesome just listening to them talk,” Lakin said. “Just seeing Bryce’s face, that was probably the happiest he’d been for a while.”

The two discussed what Painter looks for in players and in individuals, game strategy, new recruits, what Purdue means to him and who Bryce’s favorite player is/was. (That would be Braden Smith, for the record, who graduated this year and was drafted by the Indiana Pacers.)

“It was a cool experience,” Lakin said. “He really talked basketball with Bryce. It was like listening to him in a press conference.”

Kelly Orr, clinical transplant coordinator, said the coach was “amazing” with Bryce. “It was such blessing to see the joy that those few minutes brought to Bryce and his father.”

Painter said he was glad to do it.

“Purdue people look out for each other,” the coach said this week. “As a program, our respect level for the team at Riley Hospital could not be any higher. We have partnered with them the last few years to auction off shoes for Coaches vs. Cancer, reaching out to patients and helping raise awareness,” he said.

“When Dr. Parent reached out about Bryce and explained how much he loves our team, it was important for me to let him know how many people he has rooting for him,” Painter said.

Talk about heart.

“It’s truly awesome that Coach Painter did that,” Lakin said. “It shows how much he cares.”

Bryce, who has multiple types of therapy every day to maintain his strength, hopes to learn the drums in music therapy while he’s inpatient, though he would like nothing more than to be back on the farm at home, riding in the tractor with his dad.

While he waits, he has his own cheer squad at Riley in the form of his nurses.

“We love Bryce,” said Maddie Baxter and Alex Miller, describing him as fun and funny, with the heart of a champion.

“He has a very old soul,” Miller said. “He’s witty and tries to be as independent as he can be. He’s a strong farm boy.”

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

Sarah Scheidt would like to hire a few more unicorns for the new pediatric medical-behavioral health unit opening at Riley Hospital for Children on Sept. 15.

Specifically, she wants nurses and techs who possess a rare combination of traits – clinical skills and a passion for behavioral health care.

Scheidt is the clinical operations manager for the 11-bed unit, an expansion of Riley’s footprint in the pediatric psychiatric space and one more advancement in addressing the “crisis of our era,” according to Riley leaders.

The specialized unit, which will allow children to receive in-patient treatment for mental health crises and acute medical needs at the same time, is the first of its kind in Indiana and among just a few nationwide.

“It is going to be a great opportunity for nurses, especially new grad nurses,” Scheidt said. “You have to have that passion for behavioral health in this unit regardless of where you are in your nursing career.”

Riley already has a pediatric inpatient psychiatric unit, the Simon Skjodt Child and Adolescent Behavioral Health Unit, which opened a decade ago. But the additional unit is unique in that it will be staffed by physicians who are board-certified in pediatrics and psychiatry, so they can treat children with medical as well as behavioral health needs.

“This is such a monumental moment for Riley,” said President David Biggerstaff during a tour of the new space in Riley’s Downtown Indianapolis hospital. “Currently, kids with mental health and medical needs are spread across the hospital and across the state. This gives us a dedicated unit for caring for these kids.”

The unit, funded through donations to Riley Children’s Foundation, features individual patient rooms with safe showers, lighting and fixtures designed to eliminate risks of self-harm. In addition, there is a main gathering space for conversation and recreation, as well as therapy rooms and a classroom.

Having an area where kids can relax and play games is important for their healing, said Rachael Fisher, administrative director for Behavioral Health and Integrated Care Management.

The project arrives at a crucial moment for pediatric health in Indiana. According to the National Alliance on Mental Illness (NAMI), approximately 74,000 Indiana adolescents experience serious thoughts of suicide each year, while 114,000 suffer major depressive episodes. Historically, youth experiencing both medical and mental health crises have faced significant gaps in care — often staying in emergency departments or requiring out-of-state placement.

Courtney Roberts, president of RCF, said the new unit shows the impact a committed community can have.

“Our donors recognized the urgent and growing need for expanded pediatric behavioral health services,” she said. “Their support helped create a welcoming, innovative space where children and families can receive the specialized care they deserve during some of their most challenging moments.”

From a recruiting standpoint, the new unit “offers a unique training opportunity for people who are interested in this bridge between psychiatric and medical care,” said Riley’s new physician-in-chief, Dr. Douglas Graham.

“This unit is the perfect place where they can put those skills to work and care for the whole child across the psychiatric and medical spectrum,” said Dr. Leslie Hulvershorn, chair of the Department of Psychiatry in the IU School of Medicine and a child and adolescent psychiatrist with Riley Children’s Health.

The new unit is one more piece in Riley’s multi-pronged approach to addressing the mental and behavioral health of children.

“This is part of Riley’s plan to expand care in the medical/behavioral health space,” she said, adding that Riley already provides integrated care in the pediatric primary care setting for thousands of kids across the state, as well as a newly renovated behavioral health access center in the emergency department, the Simon Skjodt psychiatric unit and the Charis Center for Eating Disorders.

“This new unit will allow us to care for kids who have different complexities of illness,” Dr. Hulvershorn said. “It’s a special group of folks who want to care for these patients. The nurses have medical expertise but also behavioral-health knowledge and interest.”

As Scheidt fills out her nursing and tech staff, particularly on the night shift, she said she is looking for several qualities in team members: clinical skills, a good attitude, excellent communication skills, reliability and an interest in behavioral health.

“It is a bonus if they’ve had some training in behavioral health,” she said. But what is most important is that “they have that passion and are willing to be adaptive in the environment.”

Nationally, mental health conditions remain among the most common health challenges facing children and adolescents, yet barriers to timely treatment and access to specialized services persist.

A growing number of youth admitted to pediatric hospitals who require simultaneous treatment for medical and behavioral health conditions cannot be effectively or safely treated in a traditional medical unit or a psychiatric facility alone.

Riley’s new medical-behavioral health unit, which addresses this gap in care, will provide a safe, therapeutic environment in which to deliver integrated care from a specialized team of pediatricians, psychiatrists, nurses, therapists, social workers and behavioral health specialists, leaders say.

“It’s about how we continue to improve the care we provide all kids,” Biggerstaff said. “Every child deserves access to the specialized, compassionate care they need to heal and thrive. This innovative space expands access to comprehensive behavioral health services for youth across Indiana, ensuring more young people with complex medical and mental health needs can receive coordinated, expert care close to home.”

The unit is expected to serve an estimated 325 patients annually who could receive treatment for eating disorders, catatonia, anxiety, depression and other psychiatric conditions that occur alongside significant medical issues.

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

Dr. Graham brings extensive experience from leading one of the nation's largest pediatric hematology/oncology programs at Children's Healthcare of Atlanta and Emory University School of Medicine, where he oversaw clinical expansion, faculty recruitment, and research advancement. His national leadership experience includes serving as president of the American Society of Pediatric Hematology/Oncology, holding leadership positions within the Children's Oncology Group, and being elected to both the American Society for Clinical Investigation and the Association of American Physicians.

Dr. Graham joins Riley Children's during a period of significant clinical and research momentum. The Department of Pediatrics ranked sixth nationally for NIH funding in federal fiscal year 2025, securing more than $41.6 million to support pediatric research. Its research enterprise spans discovery science, translational investigations, and clinical studies and is supported by the Child Health Research Institute infrastructure. Riley Children’s is also nationally ranked in all specialties, with seven programs in the top 25.

"Riley Children’s Health has tremendous strengths that deserve greater national visibility," Dr. Graham said. "The quality of clinical care, the ability to care for highly complex pediatric cases, and the organization’s reach across Indiana create meaningful opportunities to improve outcomes for children throughout the region. Combined with the depth of the research enterprise and the people who make it all possible, Riley Children’s has extraordinary potential."

As a physician-scientist, Dr. Graham has built his career around translating laboratory discoveries into therapies for children. He leads an NIH-funded laboratory focused on developing novel treatments for pediatric cancers, with discoveries advancing into early-phase clinical trials. That experience closely aligns with his vision for Riley's future. A key priority under his leadership will be expanding investigator-initiated clinical research to accelerate the path from discovery to treatment.

"This is a place with exceptional people, a strong culture of collaboration and a clear commitment to innovation," Dr. Graham said. "By strengthening the integration of research and clinical medicine across specialties, Riley is uniquely positioned to further distinguish itself as a sought-after national destination for pediatric care.”

Together, Riley Children's Health and Indiana University School of Medicine will continue advancing nationally recognized clinical programs, groundbreaking research and innovative care that improves outcomes for children everywhere. Learn more about Riley Children’s Health programs, research, and clinical breakthroughs in the annual report.

From the smallest to the tallest: Meet two patients who couldn’t be more different, yet they had the same surgery for the same condition on the same day with the aid of the same surgical robot and the same human surgeon.

Five-month-old Jagger Horne nearly kicked 16-year-old Mark Shostak in his incision site last week when the two met for the first time, the day after their twin surgeries to repair a blockage near their ureters that was interfering with kidney function.

Jagger can’t stand up yet, but if he could, he would rise to just over 2 feet tall – 25.4 inches to be exact. Mark, on the other hand, towers over nearly everyone. He is 7 feet tall – with shoes on – he says with a smile.

As Avery Horne holds Jagger out to Mark, inviting him to hold the child, the teen grasps him under the arms awkwardly but with good humor, before handing him back to the boy’s mom.

Dr. Ben Whittam, urology surgeon, explained that both Mark and Jagger had surgery Aug. 19 with the aid of the da Vinci surgical robot, a gift from the Riley Children’s Foundation.

The advanced robotic system allows doctors to perform complex minimally invasive surgeries through tiny incisions, allowing for smaller scars, less blood loss and a faster recovery time.

Avery and Addison Horne acknowledge being nervous about the surgery because Jagger is so young, but they were reassured by their son’s care team.

“They walked us through the operation and eased our nerves,” Addison said.

He and his wife found out before Jagger was born that the boy’s left kidney was measuring larger than the right, indicating hydronephrosis, a swelling of the kidney due to a buildup of urine.

At Jagger’s two-month checkup, the swelling was worse, so the southern Indiana couple were put in touch with the Riley urology team, including nurse practitioner Taylor Wang. Once a diagnosis was confirmed, the surgery was scheduled.

In Mark’s case, he began suffering pain on his right side, and scans revealed his right kidney was enlarged due to the same condition as little Jagger. Their surgeries were scheduled back-to-back with Dr. Whittam and the operating room team.

“What’s so cool is we have two patients having the same operation, and despite the size discrepancy, we use the same size scopes, the same size instruments,” Dr. Whittam said. “Everything was the same, except maybe a slightly smaller suture for the baby. Everything else was identical, even the incision.”

The surgery is “incredibly effective,” the surgeon said. “Ninety-nine percent of the time, we fix the problem with a single operation.”

Mark, a junior at Carmel High School, is optimistic he will be back on the basketball court soon. He is ranked No. 14 in the state (Class of 2028) by the Indiana High School Athletic Association, according to his dad, Igor Shostak.

Dr. Whittam said with a little rest, Mark should be ready to get back on the court soon, indicating he could go “full speed” within a few weeks.

Because both patients recovered quickly, they were discharged from Riley within a day or two of surgery.

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

When Margaret Prokopy was a kid, she loved stripes. She would often pair vertical stripes on pants with a horizontally striped shirt.

In high school, she went through a pink phase – wearing all pink outfits just because she loved the bright color.

She says she was a shy kid, an introvert, but she enjoyed expressing herself through fashion.

Prokopy, who graduated from Purdue University in May with a degree in biomedical engineering, was accustomed to people looking at her differently. Born with a bilateral cleft lip and palate, she was adopted at 18 months, undergoing multiple surgeries through her childhood.

“From a young age, I knew when I met new people, they always noticed scars on my face,” she said. “At a certain point, you realize it doesn’t really matter what people think about how you look, and I think that impacted my fashion choices. I always go with what I want to wear and how I want to present myself rather than what’s fashionable.”

A longtime patient in the Cleft & Craniofacial Anomalies Program at Riley Children’s Health, Prokopy had her last major surgery as a senior in high school.

The Cleft & Craniofacial Anomalies Program at Riley features the state’s largest cleft and craniofacial care team in Indiana. Established in 1933, the program was among the first of its kind in the U.S.

But it was outside the hospital where she experienced her greatest healing.

Prokopy participated for many years in Camp About Face, Riley’s annual summer camp at Bradford Woods for kids with cleft and craniofacial differences, eventually taking on a leadership role.

“I enjoyed it for all the regular camp activities, and it was nice to meet other kids with the same craniofacial conditions,” she said. “In that setting, you get to know people and ask about their experiences.”

At the end of her final year in the Camp About Face Leadership Academy in 2022, she received the Hugh C. Kirtland-Broad Ripple Sertoma Scholarship, providing a $1,000 annual scholarship during her college years, said Caitlin Church, Cleft & Craniofacial Program coordinator at Riley. Church has known Prokopy for 11 years.

“We don’t often get to hear from our older patients after they’ve completed their treatment, but I’ve had the unique opportunity to touch base with Margaret once a year for the past four years to facilitate her scholarship renewal,” Church said.

“It’s been a joy to get updates throughout her college years and hear about her life beyond treatment. She’s an amazing example to others in our facial difference community, showing what it means to embrace your differences as part of your journey and not set limits on your goals and achievements. I’m looking forward to seeing what she does next!”

Next up for Prokopy is a gap year, during which she plans to travel. Currently, she is in the United Kingdom, where she has family. She’ll also have more time for her interests, which include tennis, chess, drawing, volunteering and playing violin.

When the year is up, she has her sights set on graduate school. Eventually, she would like to work in a career that allows her to help people in a lasting way by designing medical devices that support better treatments and quality of life.

Build a strong foundation before the season starts

Dr. Gunnar Tysklind, pediatric orthopedic surgeon, explains why conditioning, recovery and addressing pain early can help reduce injury risk before the season begins.

“Listening to your body is crucial for a healthy season. Playing through pain can often lead to longer periods of time out of the sport. Ensuring that the coaches and strength and conditioning specialists are fully aware of proper training intensity and frequency can help the overall team stay healthy.”

A strong season starts with a healthy heart

Dr. Felipe Murguia, pediatric cardiologist, explains that while most young athletes can participate in sports safely, it’s important to be mindful of heart health as they head into a new season.

“Staying well hydrated is one of the simplest things athletes can do to help their bodies perform at their best, and symptoms like chest pain, dizziness or fainting, or a racing or irregular heartbeat during exercise should never be ignored. A pre-participation physical is also an important opportunity to tell your pediatrician about any personal or family history of heart problems, particularly unexplained or cardiac-related deaths at a young age. Recognizing these warning signs and sharing that history allows us to identify the small number of athletes who may need additional evaluation before returning to play.”

Protect the brain, neck and spine during sports

Dr. Laurie Ackerman, pediatric neurosurgeon, discusses how athletes, parents and coaches can help prevent brain and spine injuries.

"Preventing brain and spine injuries starts with proper safety equipment, including well-fitting helmets and sports-specific safety measures like breakaway bases to prevent sliding injuries. Athletes should learn techniques that help protect the head and neck during play, including safe tackling and blocking. Parents and coaches should be alert for signs of a concussion or more serious head or spinal cord injury. Any athlete who experiences unequal pupil sizes, persistent headaches, dizziness, repeated vomiting, confusion, unusual behavior changes, weakness, numbness or tingling, severe neck or back pain, slurred speech, seizures, or loss of consciousness should be removed from play immediately and evaluated by a qualified healthcare provider.”

Train the mind for competition

Dr. Elaine Gilbert, pediatric sports psychologist, shares why the ability to adapt, recover and bounce back from challenges is just as important to an athlete's success as physical training.

“Focus on what you can control, and let go of what you cannot. Remember, stress is not always bad—it can actually give you energy and motivation to get moving toward your goals! But when it gets to be too much, pause. Take a slow, deep breath, ground with your senses, and use simple, kind words to encourage yourself. This is hard and you can do hard things. Resting and taking a break is part of staying strong, too. Reset your mind, keep going, and don't forget to celebrate your wins!”

Setting the stage for a strong sports season requires more than training. It means building a strong physical and mental foundation, helping young athletes recognize concerns early and ensuring they have access to the pediatric experts they need when it matters most. Riley Children's Health offers comprehensive care for young athletes and families, with pediatric experts across more than 40 pediatric specialties dedicated to helping children stay healthy, active and performing their best.

If your child or teen experiences a sports-related injury, Riley Children's Health offers same-day access to pediatric orthopedic specialists through orthopedic walk-in care locations in Carmel and Fishers. For emergency care, families can access Riley Children’s 24/7 emergency medicine services at locations in Carmel, Fishers and downtown Indianapolis.

Families can also access specialized pediatric care in areas including cardiology, neurosurgery and behavioral health. Explore our complete list of departments and programs.

A new Pediatric Medical-Behavioral Health Unit is just weeks away from opening at Riley Hospital for Children. The specialized unit is the first of its kind in Indiana and among the first in the nation.

"This is such a monumental moment for Riley," David Biggerstaff, President & CEO of Riley Children's Health, said. "The mental health crisis with our kids today, with adolescents today, has been called the crisis of our era. It's an important part of what we do here at Riley is caring for kids on an outpatient basis, an inpatient basis, and importantly for kids who have these medical needs, and the mental health needs. This is an essential unit for those kids."

The 11-bed Pediatric Medical-Behavioral Health Unit is expected to serve around 325 patients annually who meet certain medical and psychiatric needs. It is designed for children whose complex conditions need additional management beyond a traditional medical or psychiatric inpatient unit. The unit will provide integrated care through a specialized interdisciplinary team that includes specialized dually boarded pediatrician/child and adolescent psychiatrists, psychologists, nurses, therapists, social workers, and other behavioral health specialists. The unit’s design and staffing model have been developed to enhance patient and staff safety while supporting earlier stabilization, better discharge planning, and reduced repeat hospitalizations.

“Our goal is to provide comprehensive care for the whole child,” said Dr. Mara Nitu, chief medical officer of Riley Children’s Health. “Children with co-occurring medical and behavioral health conditions often face delays in treatment because there are few places equipped to manage both needs simultaneously. This unit helps address that challenge by creating a therapeutic environment where medical and behavioral health teams work side by side to deliver coordinated, evidence-based care.”

Patients receiving care on the unit may need treatment for eating disorders, catatonia, encephalitis, anxiety, depression, and other psychiatric conditions that occur alongside significant medical needs.

"You have to have both emergencies occurring together," Dr. Leslie Hulvershorn, head of child psychiatry and behavioral sciences at Riley Children’s Health, explained. "The need for acute hospitalization in both medical and psychiatric. It's very hard to care for patients medically who have a psychiatric emergency, but you're in a medical space because of the way those spaces are built. So, this gives the staff a lot more freedom to be able to say, 'You can take a shower and we don't have to be right there with you because we're confident that the space will allow you to be safe.' Whereas otherwise you'd have to have a staff member sort of watching constantly."

The unit is designed with patient staff and safety at the forefront.

"For example, here we have a shower that's called an anti-ligature shower meaning you can't hang anything on this," Dr. Hulvershorn said as she pointed to the showerhead. "There's really no way to hurt yourself on this shower, and every square inch from the light bulbs to the doorknobs in this new medical-behavioral space is designed so that psychiatric emergencies can occur in this space, yet people can stay safe."

Dr. Hulvershorn emphasized the dual purpose of the space, making it safe for patients with both complex medical and psychiatric needs.

"You might need oxygen tanks and suction and things like that to care for patients with medical emergencies or acute medical needs and those exist in this space but they're kept secure behind [a glass door], so they can be both psychiatric safe and useable," Dr. Hulvershorn said.

The staff believes this will decrease the need for 1:1 staffing because of the safety measures put in place. This means pediatric patients will be able to utilize common areas, which is not typical when they are admitted to a traditional medical floor.

"This is where the kids will spend their free time, the tables; it's where they'll eat their breakfast, lunch and dinner, if they're able to," Rachael Fisher, Administrative Director-Behavioral Health and Integrated Care Management, said. "We have the chairs; they'll play games out here. We have the TV again that's safe. We have a couple of phones built into our unit, so the kids are able to get in touch with parents, guardians, other support such as DCS. It allows our unit to be safe. Having this area where the kids can relax, do group programming, and play games, is just important for their healing."

The new unit builds on Riley’s pediatric behavioral health network, which includes outpatient psychiatric clinics, integrated behavioral health services in primary and specialty care practices, the Be Happy Child Psychiatry Access Program, the Behavioral Health Access Center in the Riley Emergency Department, the Charis Center for Eating Disorders, the Simon Skjodt Child and Adolescent Behavioral Health Unit, and other specialized services throughout the state.

"Importantly, this is an expansion," Biggerstaff said. "So we are not eliminating beds anywhere else, we're just fortunate to be able to add these beds."

The unit was made possible by generous donor support to Riley Children’s Foundation as part of the Every Child Deserves Riley campaign, which identified pediatric behavioral health as a key priority for Indiana’s children.

“This unit is a powerful example of what is possible when a community comes together to invest in children’s health,” said Courtney Roberts, president of Riley Children’s Foundation. “Our donors recognized the urgent and growing need for expanded pediatric behavioral health services. Their support helped create a welcoming, innovative space where children and families can receive the specialized care they deserve during some of their most challenging moments.”

Studies show nearly 300,000 Indiana youth experience a mental health condition each year, while suicide remains the second-leading cause of death among Indiana adolescents and young adults. Riley’s leaders hope the unit will reduce emergency department use, support families, and create better long-term outcomes for children facing complex medical and behavioral health challenges.

The team dressed babies in handmade barista, or “babyista,” aprons and paired them with miniature coffee cup props, all created by NICU nurses.

“Having a baby is one of life’s greatest moments, and no one ever expects their journey to include a NICU stay,” said Ashley Brunic, manager of clinical operations for the NICU at IU Health North. “When families are here, we want them to feel connected, supported and able to find joy in the unexpected. Our team cares for some very sick babies, and these special moments are meaningful for them, too. They provide an opportunity to bring a little extra happiness to families while also lifting the spirits of our team.”

To help parents and loved ones join in the seasonal fun, the NICU team also set up a coffee bar where families could enjoy fall-themed refreshments while spending time with their little ones.

What does the story of a wild horse chase have to do with Riley Children’s Health?

If you love horses or if you love Riley, this story might speak to you. If you love both, you’re in for a double treat.

The central character in this tale is a mustang named Annie who bumped a gate and bolted from the pen of a Hendricks County horse owner last month, leading to a frantic six-day search over many miles and involving many good people.

The Riley connection revealed itself over those six days, beginning with mustang owner Dawn Butrum, an associate administrator of nursing at Riley who has a soft spot for wild horses and reached out to share this story, which she believes embodies the IU Health/Riley values of purpose, compassion, excellence and team.

It might not be medically related, she said, “but the things we do outside of Riley matter and are relatable to our pillars.”

Maybe that’s why she was not surprised but delighted to learn that the young woman who eventually helped rescue the horse Butrum had just purchased at an auction through the Bureau of Land Management is also a Riley team member.

Hayley Grubbs has worked for IU Health for five years, the past three at Riley in radiology. On the weekends, though, you’re likely to find her on the rodeo circuit with her dad, Shawn Spaulding.

She grew up with horses, so when word raced around via Facebook, animal rescue, police and the community at large that a skittish and scared wild horse was on the loose, Grubbs and her dad used their training to track Annie, rope her and load her into a trailer to be reunited with Butrum.

That was Day 6 of Annie’s great adventure through farm fields and pastures over several miles in Hendricks County. She was exhausted, as was Butrum, her husband and everyone who had pitched in to bring Annie home.

“We had people on horseback, in cars, people with drones, people we didn’t know looking for her,” Butrum said.

Come to find out, the searchers also included two former Riley NICU nurses.

“It seriously took a village to accomplish what some said would not be the end result,” Butrum said. “We believe in the power of prayer and never gave up, knowing God is in control and brings a village together to do what seems to be impossible. Hayley and her dad demonstrated compassion, teamwork, purpose and excellence … and brought a scared horse home to start her journey with her new family.”

Grubbs, who reconnected with Butrum this week at Riley to see more pictures of Annie, said reuniting the mustang with her owner was second nature.

“I was raised that way,” she said. “We help people out.”

Or, to put it another way, wild horses couldn’t keep her away.

Now, as the two former strangers swap horse stories, they look forward to maintaining a connection going forward. Turns out they live within a couple miles of each other, and Butrum has invited her to visit Annie anytime and said she’d like to learn some tricks from the younger woman to help the newest addition to her equine family adjust to the other horses.

“I’m excited that she has all this knowledge and I can pick her brain.”

As Butrum showed Grubbs a photo of Annie on her phone, she said, “I take selfies with her all the time. It’s the least she can do after all she put me through.”

Among her five brothers and sisters, Cecilia Crockett was the second youngest in her family. Her mom, Allison, said she was everyone's sweetheart.

"She was daddy's little girl on the farm," Allison said. "Loved to be outside. Probably her best friends in the world, just right here in our home, are her siblings."

Like every family facing medical issues, Allison and Benjamin Crockett never imagined the trajectory their lives would take after Cecilia, then four years old, began vomiting and complaining of headaches on their way home from a 2022 spring break trip.

"It was probably only a matter of a couple of weeks and then one of her eyes quit tracking," Allison said.

At that point, Allison made a call to their family doctor who ordered testing.

"I think the comment was after just a couple of simple tests, the comment was, "'I want a CT scan yesterday,'" Allison and Ben said in unison.

Allison said the doctor called soon after the scan and told her to drop everything and head to Riley's emergency room with Cecilia. She will never forget the doctor's news.

"She's got a golf ball-sized mass in the geographic center of her brain," Allison recalled of the message.

Benjamin explained that doctors realized quickly that the mass was blocking the flow of cerebral spinal fluid and causing hydrocephalus.

"So, they went in and did an emergency surgery to relieve the pressure, put in a shunt," Benjamin explained. "And it was during that time that we were with one of our early doctors, Doctor Balsara, that he sat with Allison in a consulting room and said words to us that that are so true; He just said something to the effect of, 'your lives are never going to be the same. This will change everything.'"

After Cecilia's diagnosis, Allison scoured the internet for every bit of information she could find on the type of tumor in her daughter's brain.

"The probability of success was very, very low, and the amount of research that existed there was just very little," Benjamin explained. "We made a decision to start down the path of chemotherapy first."

Merely two weeks passed before their young daughter took a turn for the worse. Even her oncologist, Dr. Alex Lion, commented on how dire Cecilia's situation was at that point.

"So, the tumor hemorrhaged and she had hydrocephalus again, but really, really, really bad," Benjamin explained. "They pretty much said you've probably got about 24 hours."

Allison said together they made the decision to bring Cecilia home on hospice care; then a miracle happened.

"She recovered," Allison said.

Benjamin explained they decided to make a phone call to the team at Riley.

"We're like, 'this is miraculous,'" Benjamin explained. "Do you think that we should try chemo again?"

The Crocketts brought Cecilia back to Riley for an MRI and discovered the tumor actually shrank, though she still had lesions down her spine. Cecilia started her second round of chemo in August and then a third round of chemo on December 1, 2022.

"That round was awful," Allison recalled.

The Crocketts made the decision to do a resection on January 11, 2023. The surgery took hours, and Benjamin and Allison remembered the powerful moment of prayer over Cecilia that morning.

"Dr. Lion came and Dr. [Jignesh] Tailor came, and some of the leaders of the hospital system that we knew came, and then the nurses started just all gathering," The Crocketts remembered. We gathered and said a prayer and just prayed that things would go well. We didn't know if she would survive the surgery."

Following the resection, the Crocketts were forced to make the most difficult decision to date: whether Cecilia would continue her fight with radiation or return home to her beloved farm with her siblings. Allison explained that doctors told her that, aside from not curing Cecilia of her cancer, it would require the family to split up as Allison would head to Cincinnati with Cecilia for treatment while Benjamin and other family members would care for the other Crockett children. Also, Allsion said doctors explained that radiation would likely alter her personality, and her IQ would drop.

"We, for our family, decided that we would not go to radiation, that we wanted to preserve Cecilia and her brain for who she was right then and not put her through that, especially because they told us, as we were getting ready to make the decision, that it would not be curative," Allison said.

As Cecilia's health continued to decline, Allison continued to search for information on end-of-life care for patients with brain tumors. She stumbled upon several from Great Britain that offered her and Benjamin a choice that could keep Cecilia's fight going.

"At least one of them said at the end, if you know that you're going to lose this battle and you feel like maybe there's some time, then maybe consider donating your child's brain for research," Allison said.

Benjamin said it took him some time to come to terms with making a decision about his little girl's brain tissue, after all, at that point, Cecilia's health had once again improved and she was having a wonderful time on the farm.

"No longer has a pain pump," Benjamin said. "She's just having a wonderful summer back home. To have this thought of, I'm going to make a commitment to potentially donate tissue, brain tissue, for research was painful at first, but over just a couple of days, we had a lot of dialogue together. If we did lose the battle, this is something we could do."

Cecilia passed away July 19, 2023, at merely five and a half years old. Benjamin tearfully remembers feeling Cecilia's heart beat for the last time following a nap with her mom. Shortly after, the family officially donated their daughter's brain for research.

Dr. Tailor is a pediatric neurosurgeon and an assistant professor of neurological surgery at the Indiana University School of Medicine. It is him and his team of researchers who are helping to advance pediatric tumor research using Cecilia's brain tissue.

"It's a big deal," Dr. Tailor said of Cecilia's donation. "A lot of times we lose the battle of fighting brain cancer because we don't have the right treatments to offer. The biggest problem is that we often don't know why. We don't know why that tumor progressed because we are not able to study that end game. We're not able to study what happened to the cells. Having the opportunity to do a deep dive into that tumor and ask the question, 'why did we fail,' is not always possible unless you have access to that tissue, and that's what the Crockett family provided. They provided the opportunity for us to at least ask the question."

The Pediatric Neuro-Oncology Research Fund at Riley Children's Hospital

Along with donating Cecilia's brain, Benjamin and Allison decided to devote even more of their lives to pediatric cancer research. Through a contract with the Riley Children's Foundation, they pulled together funds from Cecilia's life insurance and their savings to create The Pediatric Neuro-Oncology Research Fund at Riley Children's Hospital.

Through sowing the first $25,000 in 2024, the Crocketts were able to name the fund and direct the fund. Now, that fund holds around $850,000.

"We wanted it to have a generic name," Allison explained. "We want to support the research that's going on in this lab and at Riley Children's Hospital, and we don't want it specifically to feel like, oh, other people wouldn't want to donate if their child died of a brain tumor because that's her thing. It has a just the generic the Pediatric Neuro-Oncology Research Fund at Riley Children's Hospital because it belongs to everyone."

"I have important stuff to do."

One memory permanently marked in Benjamin's mind is an early morning at Riley in 2022, shortly after Cecilia underwent a shunt surgery. She unexpectedly popped up in bed and asked her dad if they could wake up. Benjamin said he asked his daughter, "How are you so brave?"

How Cecilia responded would become the family's motto.

"With perfect clarity [Cecilia] said, "I have important stuff to do," and that has been kind of a theme that we've had," Benjamin said.

As donations continue pouring in for the Pediatric Neuro-Oncology Research Fund at Riley Children's Health, the Crocketts feel its success is divine.

"It's really organically has its own momentum that cannot be explained, except that there's important stuff that needs to be done, and the children should not be dying from something that we can cure, if there's enough research to do it," Allison said. "So, let's get in the lab and let's solve this like we've solved other problems, because I think the knowledge and the science and the technology is all there."

Dr. Lion thoughtfully expressed how brain donation and growing this fund can give families some peace who are left to grieve their children.

"Some of the things I think about are our families asking the question, "'why,'" Dr. Lion said. "It seems meaningless that a child would be diagnosed with disseminated brain cancer without a standard of care. This family, as well as the second family who participated in the brain donation program, they both talked about how they believed the body was not the full existence, that this donation should help others, because we believe there is a future time when there will be a restoration of all things. For us to be able to do this, it's an inbreaking of meaning now. For her to have this amazing gift given actually means the fight is still going on even though she has died."

Though their hearts are broken, the Crocketts find new purpose in helping future children and families who will stare down this brutal diagnosis.

"I truly believe that that's why we're here," Benjamin said. "God's giving us an experience to grow and learn, and that comes with pain and suffering and death. But out of it can come lots of good and growth and help helping others."

Benjamin and Allison also acknowledged that this battle forces the whole family to fight, and that can be immensely difficult when there are other growing children.

"What I really want them to know is that we are still their parents and we are still a family, even though she's not here, and even though now we have ones that are kind of leaving the nest, like the core home group, like we're still here for you," Allison said. "We love you just as much as any of the rest of them. They are wonderful children, each of them and all of them together."

Dawn Rodriguez likes numbers and is good at math, so it made sense to her as a young person to get a degree in accounting, then move into the field as a professional.

And that’s exactly what she did for 15 years. On the side, she indulged her creative interests by operating an in-home bakery. When circumstances changed and she was faced with a career crossroads, her husband suggested maybe she should embrace her first love – nursing.

“So, here I was in my 30s going to nursing school,” she said.

The mother of three worked and went to school for several years before landing her dream job – PICU nurse at Riley Hospital for Children. In that time, she has continued baking for weddings, birthdays and other celebrations, for the sheer joy of it.

For 10 years, she has worked the night shift in the PICU, only recently transitioning to a Monday-Friday dayshift job as a nurse navigator in neurosurgery. She continues to work PRN on weekends in the PICU because she couldn’t give it up entirely.

Over the years, she has received multiple nominations for the DAISY award for her compassionate care and clinical skills, but she was surprised with her first DAISY win during her last week in the PICU.

“For the award to come on the last week in the PICU is almost like God was reaching out and saying, ‘You have been in the right place for so long and I need to let you know it’s OK to leave it now.’ It was so great; I was ecstatic,” she said.

The move to the neurosurgery team as a nurse navigator aligns nicely with her interests and offers a better work-life balance, she said.

“Neuro patients are some of my favorites, and in this role I can still make a difference for these families and follow patients through treatment when they leave the PICU. I still get to be a part of their care.”

The family who recommended her for the DAISY said she provided “extraordinary care” during a frightening stay in the PICU.

“Dawn demonstrated exceptional skill, compassion and unwavering professionalism. Over the course of an incredibly overwhelming situation, her calm demeanor and reassuring presence helped carry me through some of the hardest moments I have ever faced as a parent.”

It should come as no surprise then to hear Rodriguez say that this family has been on her mind and heart since the day she took care of them.

“In the ICU, we are there on some of the worst days of a parent’s life, and seeing this family rally around this patient was amazing,” Rodriguez said. “I was so honored to take care of her and loved knowing I was making a difference for them.”

Rodriguez, now a grandmother in addition to wife and mom of three, laughs when she acknowledges how she came to nursing later in life.

“People think I’m a lifer (as a nurse), then I tell them I had another whole career before this, but this is my dream career.”

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

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

The new space provides walk-in care from 9 a.m. to 6 p.m., Monday through Friday, for patients up to age 18. No appointment or call ahead is required. Services available during walk-in hours include:

• Same-day evaluation of orthopedic injuries that have occurred within the previous seven to 10 days, including:
  • Fractures and suspected fractures
  • Sprains
  • Strains
  • Sports-related injuries
  • Other acute injuries
• Onsite treatment options, including braces, splints and casts

In addition to walk-in hours, the new suite also expands access to specialty orthopedic services. Six providers will now see patients at the location, which offers pediatric nonsurgical and surgical orthopedic consultations as well as specialized nonsurgical care for skeletal malformations and congenital conditions, spine conditions as well as sports medicine and injury care. Lab, radiology and pharmacy services are also available onsite.

“We recognize that orthopedic injuries often happen unexpectedly, especially among children and teens,” said Dr. Christine Caltoum, division chief of Orthopedics and Sports Medicine at Riley Children’s Health and a provider at the new location. “When a child is injured, timely access to expert care can make all the difference. With walk-in availability, expanded services and additional providers in this new space, families in Fishers and the surrounding communities can receive specialized Riley Children’s orthopedic care close to home without unnecessary delays.”

With the opening of the new space in Fishers and existing orthopedic walk-in care at IU Health North, Riley Children's now offers two locations in Hamilton County for same-day pediatric orthopedic care. Riley Children’s Health Orthopedics & Sports Medicine – Fishers is located in Suite 1300 of the IU Health Fishers Medical Office Building and is now welcoming patients. 

Riley Children’s has continued to grow access to pediatric care in Hamilton County through expanded Emergency Medicine, Orthopedic and Sports Medicine, Primary Care and other specialty care services. In addition to the launch of Riley Children’s Emergency Medicine at IU Health Fishers last fall, families can access 24/7 pediatric emergency care, as well as a variety of pediatric specialty care and inpatient services, at IU Health North Hospital. Riley Children’s also offers primary care services in Fishers. This new location builds on that commitment, providing families with another convenient option to access expert pediatric care close to home.

Initially, July 11 was like many other days in Axton Pugh's life; he was watching his dad burn some brush after his dad returned home from working at his tree service business. But July 11 would end differently than any other day prior.

It had just been the Fourth of July," Blakely Pugh, Axton's mom, explained. "So, when [his dad] was cleaning the brush, we don't know if maybe mortar from somebody's yard or something got mixed in with the brush, and while the brush was burning, something in the fire blew up."

Seven-year-old Axton described the traumatic moments that followed.

"All's I remember is a big bang and then Dad grabbing me out of the fire, and then all my skin was just falling off," Axton said.

His mom called 9-1-1 as her husband stood at the front door, holding her severely burned son.

"So, we got to the car and we were driving as I'm calling the ambulance, I'm like, you guys need to meet me, I'm driving towards you, we need to meet halfway, because he was in so much pain, I just wanted them to get to him as fast as they could to get him his pain under control," Blakely said. "When we got to the hospital, they ended up intubating."

Blakely said EMTs originally transported Axton to the local hospital before he was life flighted to Riley Hospital.

"The first prognosis when we got here and talked to the burn surgeon was 40 to 45% burns," Blakely said. "Three days later, he's still ventilated but they came and they did a surgery to do the debridement of the burns, and he just started healing on his own."

Blakely explained that initially surgeons told her Axton would need multiple surgeries and multiple skin grafts. But, as Axton began healing on his own, doctors estimated he was about 25 percent burned across his body. So, instead of numerous skin grafts, they decided to use a special technology that turns a small square skin graft into a cell spray, using Axton's own cells.

"We take a small piece of skin graft," Dr. Fatih Zor, Axton's doctor, explained. "Instead of using that skin graft as a sheet, we take the skin cells from that graft and make it a cell spray from those cells and spray the wounds with those cells is and cover those with the patient's own cells."

Dr. Zor said this special tool certainly lessens a patient's pain.

"If we take a 10 square centimeter of skin graft, now we have a total area of over 20 square centimeters and the body will heal both wounds, the actual one and the donor site," Dr. Zor explained. "By this way, we do not increase the total wounded area, and it also reduces the total amount of blood loss during the surgery. The pain will be much less compared to conventional skin grafting; The less donor we use, the less pain we cause."

The cell spray technology also avoids what Dr. Zor describes the "meshed appearance of the skin graft."

"So, after the surgery, the wounds heal without significant scarring," Dr. Zor said.

For Blakely, she credits her faith and the devotion of Axton's care team for helping her son survive this horrible accident. She said she is forever grateful to the staff at Riley Hospital.

"It's been amazing," Blakely said. "Everybody has been extremely, extremely kind and caring and compassionate and taking care of him, they've done amazing."

Anyone would be surprised to learn all Navy Northam - whose middle name is aptly Joy - has endured in her short two years of life. The smiley little girl was born on August 22, 2024, with a rare heart condition called Shone's complex. Maliyah Northam, Navy's mother, learned about her condition when she was about 30 weeks pregnant.

"I was actually seeing a provider outside of Riley to begin with but on one magical Monday, Dr. [Timothy] Cordes came and he was the one to finally figure out her diagnosis, which is Shones complex," Maliyah Northam recalled.

Dr. Cordes explained that Shone's complex is the name of the congenital heart disease that causes multiple obstructive lesions impacting the left side of the patient's heart.

"So, there's often a mitral valve component, either below or at or above the aortic valve, and around the arch where there's a coarctation of the aorta," Dr. Cordes explained. "So, you have to have those three components that can all have different degrees of involvement. Navy's, when we first saw her, was primarily in the aortic arch. The coarctation, but her aortic valve subsequently, needed surgery about a year later. Her mitral valve has been the mildest and probably will not need intervention."

Navy underwent her first surgery when she was just five days old. After that, she had routine echoes every two to three months. At her December appointment, Navy's medical team gave her the go-ahead to begin scheduling echoes every four months. But by April 2025, her mother knew something was wrong.

"We had started to notice she wasn't gaining any weight at all," Maliyah Northam explained. "By this time, she was eight [or] nine months old and she was not crying, she was not sitting up well."

After that April appointment, Maliyah Northam remembers quickly preparing for surgery which ultimately took place in July 2025.

"She had her open-heart surgery in July to repair her aortic valve," Maliyah explained. "As I said, she was not crawling, she wasn't even sitting up straight but when she had the surgery, I remember in her crib at the hospital, she was standing! I think it was within the first week, she started crawling. She was so happy."

Maliyah said she feels Riley Children's Health prepared her and her husband, Daniel, for Navy's birth and diagnosis. She spoke about the care conference before Navy was born which allowed her to meet with all of the providers who would care for her newborn daughter and visit each of the floors in the hospital where her baby would stay.

"Nothing was left unanswered," Maliyah said. "We love our cardiologist. I chose him. That day that he found her diagnosis, I was asked when she was born, who do you want your cardiologist to be, and I picked him. I was adamant on picking him. I love his voice of reason, and he was the one to make me feel like my instincts mattered and that has continued on."

Maliyah also shared appreciation for Navy's surgeon, Dr. Mark Rodefeld.

"He always came and checked up on our room," Maliyah said. "Two times a day, at least, with both surgeries. I would be in there, and he would see me holding her, and he would ask how I was doing."

For Dr. Cordes, this feedback and these relationships make the job worthwhile.

"It is always my opinion that it's a privilege to be entering somebody's life with this very, very difficult problem and a long journey," Dr. Cordes said. "Navy's going to need a cardiologist for the rest of her life. It's always rewarding to have this interaction with families and their kids and see someone do as well as they're doing."

As Navy continues growing, her parents look back fondly on their time at Riley. They both cited the Ronald McDonald House Charities of Central Indiana as a blessing during their stay.

"My family and I we're really close," Maliyah said. "My husband works from home, we're all in our house every single day together. I feel like Riley's really, really family-oriented in a sense that we were all able to stick together. I feel like that kept me from worrying about everybody else. I could focus on Navy."

To Sonia Amador, little Rose Byers is “Rosita,” one of her many young friends in the CVICU at Riley Hospital for Children.

Every time she gets to see the baby, Amador coos “que linda” – how cute.

“We love her,” Madison and Spencer Byers say in unison about Amador, an environmental services team member who cleans Rose’s hospital room daily. “She talks to Rose and tells her how cute she is.”

Amador is Spanish-speaking, but she communicates her love for all patients and families at Riley, no matter their native language, with her eyes, her smile and her heart. Bilingual co-workers and a translator app on her phone help, too.

She goes by another name on the unit as well – Grandma or “abuelo/abuelita.”

“Sonia falls in love with our patients,” unit secretary Alma Estrada said, as Amador and a team of EVS workers did a thorough clean of a room in preparation for an incoming surgery patient. “She connects with all cultures in the unit. People just know her and enjoy that connection.”

Known for her hard work and attention to detail, Amador has been assigned to the CVICU throughout her four years at Riley.

“She is an incredibly hard worker with a wonderful spirit,” said Laura Alter, director of clinical operations. “She brings joy to the whole unit, and we’re so lucky to have her.”

Tom Harlow, CV service line administrative director, said the work she does makes a difference, not just in the cleanliness of the unit but in the hearts of the team and the families.

“We’re grateful for the care she provides to our patients and families and for her dedication to the Heart Center,” he said. “The work she does here is so impactful.”

Amador is embarrassed by all the attention, saying she just loves the babies and enjoys talking to them. She has a grandchild herself, but the little girl lives in Nicaragua, so she has never met her in person. Just ask, though, and she will proudly show a photo of the 3-year-old on her phone.

“I would love to hold her,” she said of her grandchild, as Estrada translated for her, “and these little ones that are not mine I wish I could hold them.”

She has formed close bonds with many families on the unit and grieves deeply when a patient passes away, remembering a little boy who used to wave to her from his hospital bed.

“It is very hard on all of us,” Estrada said.

Noah Meth was one of those young patients whom Amador grew to love over his many months in the Heart Center. He passed away last month, but his mom, Haley, still appreciates the care Amador showed her son.

"Anytime Sonia would come in, she would first go to Noah and say 'Hola' to him and do anything to get him to smile. At first, he was skeptical, but the more Sonia was around, the more comfortable he became. He loved her. He would smile and giggle. Before she left, she would always say 'Adios' to Noah, and I'd have him wave goodbye."

Amador was back in Rose’s room Wednesday morning, so Madison Byers took the opportunity to get a photo of her with her daughter.

“We’ve learned a few things in Spanish from her,” Byers said. “The language barrier is definitely there, but her genuine joy and excitement make up for it. Every time Rose has an outfit on or her hair done, she will point to it and get so excited.”

The family has known Amador since Rose was 3 months old. The little girl, who turned 1 in June, was inpatient for 165 days last year, before being discharged home in November. She returned for follow-up care at the Riley Outpatient Center before being readmitted in late January.

She will undergo an additional complex heart surgery to repair her aortic valve in a few weeks, her mom said.

Until then, she is comforted knowing that Amador will continue bringing her light and gentle spirit into her daughter’s room.

“We love Sonia. She has truly been a highlight of Rose’s hospital stay.”

As Collin Tiek looked out over the breathtaking scene from the top of the Grand Teton in Wyoming, his mind was properly blown.

“God blessed me with the strength and opportunity to be up there, and to look out on all he created for us was just amazing.”

Thirty-nine years ago, he was a critically ill newborn whose future seemed anything but bright. But last month, he climbed the tallest peak in the mountain range (13,775 feet) with a guide and his uncle by his side and his heart full of gratitude for Riley Hospital for Children.

Born in 1987 with serious heart defects, including transposition of the great vessels, a large ventricular septal defect and pulmonary stenosis, he might not have survived except for the care of an “A team” of surgeons, physicians, nurses and therapists at Riley.

But God had a hand in their son’s healing as well, say Dale and Jane Tiek, who remember the dark days of Collin’s journey with congenital heart defects.

“I was an OB nurse at our local hospital and had an uneventful pregnancy, so we were shocked when he had problems after he was born,” said Jane Tiek.

Today’s modern scans can pick up heart defects early in pregnancy, giving parents and doctors time to create a care plan around the baby’s birth and subsequent treatment.

In 1987, the technology for diagnosing, much less treating, serious heart defects in babies was in its infancy. But Riley was at the forefront of that care.

The day after he was born, the Oaktown, Indiana, couple’s son was taken to a hospital in Vincennes, then to another in Evansville, before being transported to Riley the following day.

There they met cardiologist Dr. Randall Caldwell, who would go on to become their lifeline.

“We were immediately impressed with his intelligence and his compassion,” Jane said, adding how she also appreciated his honesty.

“I remember him telling me one time, ‘I’ll answer all your questions as best I can, but before you ask the question, make sure you want to know the answer.’ He did a great job of keeping us informed and calm but also letting us know how serious it was.”

Though the doctors didn’t sugarcoat their son’s condition, they and the rest of the team offered hope, she said, and that was worth holding onto, even when it was the tiniest sliver of hope.

“It’s easy to lose that hope when your child has a serious health problem. They encouraged us, and that’s so important for parents. That’s a gift. That’s what sets Riley apart.”

Collin would go on to have multiple medical procedures, including two surgeries by Dr. John Brown, with an assist from Dr. Mark Turrentine.

“We are forever grateful for these three men and all the healthcare workers at Riley,” Jane said. “Because of their incredible work, our son stood on the summit of the Grand Tetons (last month) after ascending almost 14,000 feet. For parents going through something like this, I hope it gives them some hope and encouragement to see a 39-year-old congenital heart kid standing on top of a mountain.”

Growing up, Collin was always active despite his heart conditions. He played sports, swam and skied.

“With my mom being a nurse, she understood more than some parents the importance of staying active,” he said.

He graduated from Purdue University, and he and his wife, Amy, have two children. Collin operates a small farm, while Amy is a veterinarian. He continues to get annual cardiology checkups at Riley, a practice not unusual with congenital heart patients.

He acknowledges that it used to feel strange coming to a children’s hospital as an adult, but he feels a sense of loyalty to the hospital that he credits for saving his life.

“I can never say enough good things about Riley.”

His mom has quite a lot to say as well.

“Riley just holds a very special place in all of our hearts. I knew it was a great place, but until you experience it as a mom you don’t realize how blessed the state of Indiana is to have a facility like that, and not just the expertise but the way they cater to families, the way they do everything in their power to make it as good as it can be,” she said.

Obviously, the day her son was summitting the mountain was scary for her. In fact, she didn’t learn of his plans until shortly before the climb was to begin. And she was home in Indiana at the time.

“To this day I say to my husband I think we downplayed his condition a little too much because Collin has never recognized any limitations,” she said with a laugh. “When I heard he was climbing the Grand, I said to Dale we really didn’t stress enough about his heart.”

Just as she prayed for her son’s life to be saved as a baby, she prayed the morning he was on that mountain.

“I felt like God was saying to me, today you’re praying for your baby boy to get to the top of the Grand, but I remember the days when you were just praying to let him live.”

Hope, fear and gratitude live in those prayers, then and now.

Marie and Justin Rowland found out their son, Liam, would be born with a bilateral cleft lip and palate during their 20-week ultrasound appointment. Through the parents' hospital research, they discovered Riley Children's Health could give their baby the best outcome, and its proximity to home was an added bonus.

"So, we kind of started at Riley even before he was born," Marie Rowland said. "We were able to meet with the team a little bit, get an idea of what to expect, which was really great."

Liam Rowland was born on November 21, 2016, and had his first surgery at four months old and a second at 10 months old.

"We haven't gone for more than a few months usually without going [to Riley] for something," his mom said. "So, we've seen speech and hearing, audiology. He had his bone graft surgery last year and then he's had a few other surgeries and minor procedures in between there."

Liam Rowland will eventually undergo bilateral jaw surgery.

"When they do the palate surgery, it stunts the growth of the top jaw," Marie Rowland explained. "In order for him to be able to talk and eat and things like that as an adult, they have to realign things."

Today, Liam Rowland is an active 9-year-old who loves playing baseball, whether with his team or at home with his little brother, Lennox.

"Liam is the primary pitcher on his team," Marie Rowland said. "For being 9, they moved him up in the league, so he's playing with 10- to 13-year-olds. He does amazing!"

Liam was named the Riley First Pitch Kid for the Indianapolis Indians game on July 25.

"I am really thankful for the Indianapolis Indians for letting me do the first pitch."

Though not the major league, the Rowlands can add Victory Field to their list of stadiums they've visited - and Liam can check off a bucket list item.

"One of our main goals is that we're going to try to go to every single stadium before I graduate high school," Liam Rowland said. "So far we've gone to the Guardians, the Reds, the Milwaukee Brewers, The White Sox and then the Rockies."

Kennedy Ellis has been enjoying a rare stretch of good health lately. So when she came to the Riley Outpatient Center this week with her parents, Dustin and Krystal, she was relaxed, thoughtful and happy.

It’s been 18 months since she last needed chemotherapy, a treatment that has defined her life since she was a baby.

Kennedy, now a 15-year-old sophomore in high school, was diagnosed with an optic pathway/hypothalamic tumor (a low-grade glioma) when she was 19 months old.

It was benign but life-threatening because it grows, putting pressure on the optic nerve and the brain itself, affecting her eyesight and her pituitary gland, in particular. And it is inoperable.

The diagnosis was devastating, Krystal Ellis said, but at the same time it was a relief just to have an answer for why their baby girl was slipping away from them because she couldn’t eat.

“My husband and I took it day by day, hoping and praying, but we were scared to death.”

She credits Riley Children’s Health for never giving up on their child.

“Riley has done so much for us. They have saved her so many times.”

The first step was surgery to try to remove at least a portion of the tumor, but its location in the middle of the brain made that impossible. Her main treatment through the years has been chemotherapy – first administered intravenously, then in pill form as new drugs became available.

The tumor and treatment have taken a toll on Kennedy’s body, but not her spirit. She is the “good” kind of stubborn, her mom said. Strong-willed and smart but with a big heart.

“Her life is proof that strength and gentleness can exist in the same heart.”

She began suffering seizures in 2019, about seven years after diagnosis, and had to be placed in a medically induced coma before they could be stopped. She then had to relearn to walk and talk through intense therapy.

Kennedy was part of a clinical trial in 2024 for a targeted cancer medication called tovorafenib that has revolutionized care in some patients. It was approved by the FDA in 2025. The drug, taken weekly, helped put her on the path to better health, shrinking her tumor by nearly half to about the size of a grape.

Her growth has been affected by the tumor – she stands just 3 feet, 10 inches tall, and she has some muscle weakness – yet her intellectual development has not suffered. She is an A-B student at her Crawfordsville high school, where she particularly enjoys biology, she said.

She is social, loves music and has even developed her own candle-making business. Her favorite thing to do is swing while listening to alt rock and hip-hop, she said. No Taylor Swift on her playlist.

“I like a lot of unique bands.”

You might not catch her dancing, but “I like to move my feet and bop my head,” she said with a smile.

Her mom and dad have been by her side every day. Dustin Ellis stepped back from his job to be a stay-at-home dad for the first 18 months after Kennedy’s diagnosis.

“I was knee deep in everything,” he said. “It was crazy. But when it comes to Kennedy, we’ve been very hands on. She’s all that matters.”

Her mom now handles the day-to-day care, but the couple tackle things together, each supporting the other.

“Our family and community are very important,” Krystal said, noting that so many people have come alongside them to help ease the burden. “Hope carried her through the hardest days, and love surrounded her every step of the way.”

Every four months, Kennedy returns to Riley for an MRI and bloodwork to ensure that the tumor is stable. The past 18 months is the longest period she has gone without requiring any chemo.

“I didn’t really notice how much it affected me until I was off it,” the teen said. “I’m less tired, less nauseous. I enjoy food more and I can go out in the sun.”

The Riley team has changed some over the years, but the family has felt deeply cared for by everyone, Krystal said.

Dr. Sandeep Batra and Dr. Scott Coven are among the oncologists who have treated Kennedy. Both are beloved by the family, as are all the advanced practice providers, nurses, therapists and technicians they have gotten to know in oncology, ophthalmology, neurology, neurosurgery, endocrinology and dentistry.

“There is nobody we haven’t loved,” Krystal said. “That’s the honest-to-God truth.”

Dr. Coven describes Kennedy as a “fascinating and amazing young person” who continues to impress him with her intellect, self-awareness and ability to champion her own care.

“Kennedy is so wise beyond her years. She’s been through so much, and she speaks so eloquently,” he said. “At every visit, she impressed me with her knowledge.”

Also, he said, her smile “lights up the room.”

Most gratifying for him was to see how well she responded to the clinical trial drug.

“We had to manage side effects, but we were seeing benefits we’ve never seen for her,” he said, specifically a reduction in the tumor’s size. “We’re starting to see that with this new class of medications in other patients as well, which is really exciting.”

Another benefit of these new drugs is the ability to restart them if the tumor were to start growing again.

While Kennedy and her parents can’t help but hold their breath when it comes time for a new brain MRI, they keep moving forward with the help of their faith, family and the Riley team.

“There are no words big enough to thank the people who have helped carry our child through 14 years of unimaginable challenges. To every physician who searched for answers, every nurse who offered comfort, every therapist who celebrated the smallest victories, and every staff member whose kindness eased our fears – thank you.”

Why is playground safety important?

Playground injuries can range from minor scrapes and bruises to more serious injuries such as dislocations and broken bones. Whether it’s a fall from the monkey bars or a tumble from a climbing wall, accidents happen during play.

“At Riley Children’s Health, we take care of a lot of elbow and wrist fractures. A surprisingly high percentage of these are from monkey bars and other forms of playground equipment,” says Dr. Gunnar Tysklind.

Playground safety tips

Supervise children and teach them how to play safely

• A parent or guardian should supervise children and stay alert while children play.
• Teach children to slide “feet-first” down slides and one person at a time.
• Wear proper footwear to provide stability and reduce the risk of injuries when climbing, running and jumping. “Crocs and sandals are great for the pool and other light activities, but when it’s time to play on the playground, we recommend wearing supportive, closed-toe shoes that fit well and are securely tied or fastened,” recommends Todd Osterbur.
• Remind children to sit on swings and not to cross in front of moving swings. “Not only is it important to remind children to watch where they walk around children on swings, we need to remind them that jumping off of swings can increase their risk for a serious injury,” Osterbur says.
• Children should not climb outside guardrails on climbing walls or other platforms. “Guardrails and barriers are there for a reason and should not be climbed on or messed with. Children’s limbs can also become stuck in these and twisted,” he adds.

Check for any playground hazards before playing

• Avoid playgrounds with tripping hazards (such as rocks or tree stumps), dangerous playground equipment that is broken, or play structures without guardrails or that are not securely anchored to the ground.
• Check that swing seats are made of either plastic or rubber rather than metal (which heats up quicker and may cause burns).
• Find playgrounds with protective ground surfaces made of wood chips, mulch, sand or rubber-like materials, and avoid playgrounds over exposed concrete or blacktop.

“Unsafe playground equipment should be reported to the organization responsible for maintaining the playground, such as a parks department, school, or community organization. Please be aware of signage about damaged or unsafe equipment, and exercise caution with wet playground equipment after a rain or storm,” says Dr. Tysklind.

Don’t wait to treat playground injuries

If your child does suffer an injury, they can receive same-day access to a highly skilled pediatric orthopedic specialist. Riley Children’s now offers walk-in care for orthopedic injuries in Fishers and Carmel. Walk-in care is available Monday through Friday, 9 am to 6 pm. No appointment or call ahead is needed. Learn more about our orthopedic walk-in care.

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 in Carmel, Fishers and downtown Indianapolis.

In emergency medicine, no two days are the same, and that’s exactly what registered nurse Kendra Kirby loves about her work.

Kirby began her IU Health career at IU Health Ball Memorial Hospital in 2021 before joining the team that helped launch Riley Children’s Health emergency medicine services at IU Health Fishers in August 2025. Each shift brings new challenges and new opportunities to care for children and families in need.

“It's always different. We have a lot of children with colds, respiratory issues or sports injuries. We also have more chronic patients who come back to our unit often because it's closer to home,” she explains.

Before transitioning to pediatric emergency care, Kirby worked in both the adult Emergency department and as a nursing case manager. While those roles helped shape her nursing foundation, she found her passion in caring for pediatric patients.

“I love taking care of kiddos because we meet them where they're at. We work with the kids and their family to support them while they are here, especially because kids don't understand what all is going on,” she says. Kirby credits the strength of the team for making the fast-paced environment both supportive and rewarding. “I love the people that I work with,” she says. “We have great teamwork, especially in this department, and they definitely make coming to work an actual treat.”

Looking to make a difference in life while surrounded by a supportive team? Visit careers.iuhealth.org to learn more about nursing careers.

Zoe Walsh, zwalsh@iuhealth.org, Communications intern for IU Health's Metro Region

Ashley Whaley has been a labor and delivery nurse in the Maternity Tower at Riley Children’s Health just since December, but she has made a big impact in that short time.

Whaley was nominated for a Daisy Award for her clinical skills and compassionate care three times in one month alone.

And recently, she was surprised during morning huddle when team members and leadership gathered to present the official award to her.

“I saw the daisies and thought, ‘That’s nice, someone won a Daisy.’ As they were reading the nomination, I thought, ‘Oh my gosh, congrats to whoever it is.’ ”

It took her a minute to realize the award was for her.

“I thought they couldn’t be talking about me. I am super shy and hate being in the spotlight. I was trying not to cry.”

Whaley, who previously worked as a cardiovascular critical care nurse in Florida, was always interested in women’s health, specifically labor and delivery. Finding a position at Riley was a dream come true.

“I did travel nursing last summer, and I was at University Hospital. I applied to Riley, they called me, and I cried. I literally have my dream job.”

She is a dream team member as well, according to Tara Povinelli, clinical operations manager for labor and delivery.

“Ashley builds strong connections while caring for her patients to ensure they have a positive experience while they are with us, so it is no surprise she was chosen as a Daisy Award winner,” Povinelli said. “She also supports her teammates by sharing knowledge, offering advice and working extra when the team needs it. We love having Ashley on our team.”

The women who nominated Whaley for the Daisy describe her as “a pillar of strength,” “intuitive,” “kind” and “supportive.”

“She was on top of everything,” one said. “I felt very safe.”

“She really showed she cared for mother, baby and dad,” said another.

As the mother of a 9-year-old son, Whaley knows how important it is to provide the best possible labor and birth experience to the moms in her care.

“I knew I could advocate for them when they are going through one of the most vulnerable times of their life,” she said.

She has found that the culture at Riley suits her, and she appreciates her managers and co-workers, describing them as one big family.

Outside the hospital, Whaley and her son like to explore Downtown Indianapolis, which is where they live, and she loves to cook. In fact, she went to culinary school before switching to nursing.

“I’ve been cooking since I was 3 years old with my parents and grandma,” she said, “but I decided not to make a career of it. Medicine and women’s health was my top priority.”

The Healing Hands sculpture that sits on her fireplace mantel – presented to her as part of the Daisy Award ceremony – is a reminder that she made the right choice.

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

Call it a mother's intuition; Madison Williams knew something was not right when her son, Krue, who was around six months old at the time, was experiencing frequent unexplained rashes and fevers. Because the symptoms would show up after normal business hours, Madison took her son to their local urgent care.

"They told us every time that it was cellulitis," Williams explained.

But Williams continued to feel concerned, so she made an appointment with Krue's pediatrician. She requested lab work.

"After about two-ish weeks of labs, because they kept redrawing because they're like something's just off with his labs, we can't figure it out, they did give us a referral up here to Riley," Williams explained. "We were told it was going to be within a week, and then within 45 minutes I got a phone call back saying you need to get him to the emergency room now!"

Krue's family packed up and headed north to Riley Hospital for Children.

"That was the weekend before he turned one," Madison said. "We spent his first birthday in the hospital getting his diagnosis. We weren't entirely sure what type of leukemia it was, but we knew it was leukemia of some sort."

A month later, Krue was diagnosed with juvenile myelomonocytic leukemia (JMML). The toddler began chemotherapy as he awaited a stem cell transplant.

"We all had to be tested first to see if any of us would be a match and [Kamryn] was the only one that was a 100% match," Williams said.

Kamryn is Krue's older sister, who was five at the time of his initial transplant.

"We used Kamryn as the donor initially because she was a full match, to decrease the toxicity, specifically for graft-versus-host disease," Dr. April Rahrig, Krue's pediatric stem cell transplant physician, explained. "Graft-versus-host disease is a condition where the donor's T cells recognize the patient, or the host, as foreign and they start attacking the tissues."

Even at a young age, Williams said her daughter wanted to help her little brother.

"The best way we could explain that to her was Krue had bad cells and she had good cells and Krue needed her good cells," Williams explained. "So that's what she knew is she was giving her good cells to Krue to try to make him better."

Krue received his stem cell transplant in December, but only 87 days passed before he relapsed.

"Really the only cure for relapsed JMML is another transplant," Dr. Rahrig said. "We are doing a different type of transplant this time around and he's going to be getting a transplant from his dad."

Krue's dad, Dale, is only a 50% match. So, in order to prepare for the toddler's second transplant happening on Friday, Dale must undergo special injections.

"Leading up to the cell collection from dad, dad will need to get an injection that will help move his stem cells from his bones into his blood so that we're able to collect those," Dr. Rahrig explained. "Then those cells will go through a machine, and the bad T cells will be removed, those alpha beta T cells will be removed, and what's left is the stem cells and the good T cells that will grow and help those cells engraft."

Krue's family is holding on to hope that the second transplant will wipe the cancer out for good.

"It's super meaningful that we're able to use a second family member to try to save Krue's life," Williams said.

The expanded location will increase access to pediatric orthopedic and sports medicine care in Hamilton County, including convenient same-day care for orthopedic injuries through new walk-in hours. Additional services will include pediatric nonsurgical and surgical orthopedic consultations as well as specialized nonsurgical care for skeletal malformations and congenital conditions, spine conditions as well as sports medicine and injury care.

Riley Children’s Health Orthopedics & Sports Medicine – Fishers will be located in Suite 1300 of the IU Health Fishers Medical Office Building and will begin seeing patients on Tuesday, July 28.

Cloe Amos remembers the fear and uncertainty in the young couple’s eyes as they absorbed the significance of their infant daughter’s medical condition.

Their little girl, born in Bloomington with a condition called Pierre Robin Sequence that would require intervention from plastic surgery, pediatric ENT and craniofacial specialists, was rushed to Riley Hospital for Children, where she spent the next two months in the NICU.

But it was on 8 West that Amos got to know Daniel and Elizabeth Wallace and their daughter, Charlotte, who needed a tracheostomy and G-tube before she could go home.

The relationship they built was pivotal for the couple in overcoming their fears about caring for their first child – a medically complex child.

“The entire staff on 8W is incredible and provided so much support to our family as we worked to get home,” Elizabeth Wallace said. “Charlotte’s primary nurse, Cloe Amos, went above and beyond to take care of our daughter and train us to go home.”

Amos was recently celebrated with a DAISY Award for her clinical skills and compassionate care, thanks to a nomination from the Wallaces.

“As you can imagine, learning how to take care of an infant for the first time, who also happens to have a trach and g-tube, is quite intimidating and overwhelming,” Wallace wrote in her nomination, which she consented to share for this story.

“However, Cloe was with us every step of the way. She spent so much time with us to make sure we were comfortable with trach changes, daily trach care, suctioning, giving meds, setting up feeds, and all the other skills you have to have to properly care for a kid with a trach and g-tube.”

Amos has been a nurse at Riley for three years. She moved to Indianapolis from her hometown in Illinois, and 8W was the first place she shadowed during nursing school.

“I loved it,” she said. “And I’d always heard about Riley and that it was a great place to work. The people on the unit really make my job worthwhile. I have a great group of friends, and I love taking care of the trach/vent patients, the cystic fibrosis kiddos and those with asthma. We get more chronic patients, so we get to build good relationships with them and with their families.”

That’s exactly what she was able to do for the Wallace family as she and the team helped train them to care for their daughter at home.

“Nursing isn’t always just physical skills,” Amos said. “The parents had a lot of worries, so we had to work on the emotions of it all. We took walks, shared hugs, found distractions. I told them from Day 1 they would be OK, even though it seems like a lot.”

Sure enough, they were OK. When they returned to Riley later, they were pros.

“Due to Cloe’s training, my husband and I (and Charlotte’s other caregivers) felt confident taking Charlotte home knowing we could care for her,” Wallace said. “While we are home now, we do have the occasional pit stop at 8W for sickness, and you’d better believe Charlotte is always happy to see Cloe (when we are lucky enough to have her on shift).”

Charlotte, who sailed through her cleft palate repair at Riley last week and recently celebrated her first birthday, is doing great, her mom said.

“Without Cloe’s patience, kindness and expertise, we would not be where we are today.”

Seeing Charlotte and her family thrive is what makes nursing so rewarding, Amos said. Outside the hospital, she is planning her wedding to her fiancé, Tyler, in three months. She loves DIY projects, hanging out with friends and her dogs and spending hours at Hobby Lobby with her grandma.

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

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

When Austin and Hailey Patterson learned their unborn daughter had two rare heart defects, they were naturally swept up in what ifs – what if she can’t breathe when she’s born, what if she requires major surgery, what if she can’t live a full life.

What they didn’t know then was just how strong their little girl was.

What they never doubted was all the love they had to give.

Bristol Patterson’s birth in May came with another surprise, another challenge. First, she was dealing with intrauterine growth restriction, so she had to be delivered at 37 weeks, weighing 4 pounds, 8 ounces.

Then, she was diagnosed with a tracheoesophageal fistula (TEF), an abnormal connection between the trachea and the esophagus, which required surgery to repair on Day 3 of life by Dr. Matthew Landman.

The combination of heart anomalies – unbalanced AV canal defect and truncus arteriosus – are rare and serious in themselves, but to have them together is something cardiologist Dr. Anne Farrell told the couple she’s never seen in her Riley career.

Bristol has been in the NICU at Riley Hospital for Children since she was born 11 weeks ago, as doctors monitor her esophagus, but other than for surgery, she has not had to be intubated, mostly able to breathe room air. She has a G-tube for nutrition, but her care team is working to get her more comfortable with bottle feedings.

Hailey Patterson spends most days by her daughter’s side, while Austin Patterson comes down from the couple’s northern Indiana home as often as he can. Hailey is a nurse and a former NICU nurse, so she knows more about her daughter’s care than the average parent. That’s both a blessing and a curse.

“I had no idea what to expect when she was born. I didn’t know too much about heart defects, but I thought she was going to need a lot more support. I thought she would be intubated. I thought it would be worse.”

Seeing how strong their little girl is gives Hailey and Austin the strength to advocate for her and learn all they need to know to give her the best care possible.

“I’m familiar with a lot, and I’ve learned a lot,” Hailey said as she snuggled with Bristol last week. “I do most of her care times and her baths. The heart stuff is unique, so we’re waiting while they figure out what approach to take.”

Meanwhile, Bristol is wrapped snugly in the love of her care team, particularly her primary nurses, Clara Schulz and Kelsie Walter, along with nurse Jennifer Stark.

“They have helped so much,” Hailey said of the NICU nursing team. “Just loving her and caring for her. It’s pretty great.”

Schulz turns the compliment back around to the family, saying, “They are so strong, and Bristol is such a fighter. I love taking care of her.”

While Bristol’s hospital stay has been complicated, Stark said the family has been “lovely and involved.” She believes their story will help inspire others, which is something Hailey Patterson also hopes to do.

“I wanted to share Bristol’s story because she is so much stronger than I thought she was going to be with two rare heart conditions.”

The unbalanced AV canal defect is a severe congenital heart condition where a single, shared valve opens into just one of the heart’s lower pumping chambers, forcing the other chamber to become too small (hypoplastic) to pump blood on its own.

Bristol’s other heart defect, truncus arteriosus, is another rare, congenital defect leaving her with a single large blood vessel leaving the heart instead of two – the aorta and the pulmonary artery.

The two conditions together represent an extremely rare and complex set of defects, requiring specialized surgical intervention.

Currently, Bristol has flow restrictors placed in her pulmonary artery to decrease the overflow of blood to her lungs so that she puts more blood into the rest of her body to grow. That intervention has enabled the medical team to postpone cardiac surgery until Bristol gets bigger.

In fact, she is doing so well now that her mom said she could be discharged home -- with the flow restrictors still in place -- as soon as next week. That in itself is extremely rare, but the specialized approach will allow her to grow safely before undergoing major open-heart surgery.

“Her ECHOs have looked beautiful these past few weeks,” Hailey said, adding that once home, Bristol will continue to have Riley providers’ eyes on her through the hospital’s advanced cardiac home monitoring program.

“To be honest, I never thought she’d be doing so well. She is one tough cookie.”

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

"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."