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."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Jonah, Jonah, Jonah!”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jonah is the poster child for that assessment.

“He’s just an awesome, awesome kid.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What does this mean for families?

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

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

What makes us a Comprehensive Care Center?

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

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

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

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

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

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

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

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

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

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

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

And that was her second appearance.

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

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

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

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

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

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

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

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

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

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

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

Meanwhile, she brings the music to Riley every Friday.

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

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

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

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

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

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

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

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

The next step was an MRI.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Daisy Nurse Leader Award: Keegan Caughey, 9W

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

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

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

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

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

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

Coach Award: Kruti Patel, Mother-Baby.

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

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

Brittany Gaskins Award: Callie Sharkey, inpatient rehab.

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

Stephanie Pottenger Award: Katherine Lawson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Riley Grief Services

The Milk Bank Bereavement Services

The Milk Bank Wellness for Bereaved Parents skills group

The Compassionate Friends

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

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

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

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

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

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

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

“She did amazing,” Dr. Chu said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Madison gives the compliment right back.

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

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

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

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

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

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

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

“It’s so much better being home.”

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