Inspire 2023 ANNUAL REPORT

Kapiolani Children's Miracle Network: Heart of a Champion

An average adult heart beats 60 to 100 times a minute. An average newborn’s heart rate is 70 to 190 beats per minute.

When she was nine months pregnant, Kayley Coloma’s doctors discovered her baby’s heart was racing at 265 beats a minute. Something was wrong.

It was a terrible shock for the Colomas. Kayley’s pregnancy had been normal. She and her husband, Jared, were planning to welcome their first child in a few weeks. Instead, doctors performed an emergency cesarean section and Leila-Rose was born at Kapiolani Medical Center for Women & Children.

An Uncertain Beginning

She had a challenging path ahead of her. Leila had a rare heart condition. Ebstein’s anomaly is a defect of heart valves that makes it difficult for oxygenated blood to circulate in the body. In addition, Wolff-Parkinson-White syndrome left her heart beating rapidly.

“When the heart is beating that fast, it is not able to adequately pump blood to all the vital organs,” said Dr. Sadie Kim, Kapiolani neonatologist. “We had to put a breathing tube into her airway, and even with 100% oxygen flowing directly into her lungs, her oxygen levels were not where they needed to be.”

“It was clear she needed complex heart surgery,” said Dr. Andras Bratincsak, Leila’s cardiologist who is now director of The Mitsui Family Pediatric Heart Center at Kapiolani. “But first, we needed to stabilize her heart rate.”

Leila with her doctor, Kapiolani pediatric cardiologist Dr. Andras Bratincsak.

It was not a simple task. Medical teams consistently battled to keep her heart rhythm consistent. She received nitric oxide to increase the flow of blood through her little body and several intravenous medications to slow her heart rate down and keep her sedated. She was so fragile that Kayley and Jared couldn’t hold their baby girl until she was more than a week old. Leila spent her first three months of life in Kapiolani’s Neonatal and Pediatric intensive care units.

“We had to keep her as calm as possible because if she cried, her heart rate would go up and we would have to call the team in,” said Maddy Fernandez, RN, manager of Kapiolani’s pediatric surgery program who cared for baby Leila. “Every day, we were taking care of not only the baby, but we were also supporting the family — sharing tears, holding hands, hoping for the best and being there through the worst times.”

“At one point, I remember Leila was on the highest dose of two heart rhythm-control medications I’ve ever experienced,” Dr. Bratincsak said. “We knew she needed the operation as soon as possible.”

Going Into Surgery

Kapiolani’s specialized Critical Care Transport Team flew Leila and Kayley to California for the infant’s open-heart surgery. Leila was just 5 months old.

“It was the longest day of my life,” Kayley said.

Surgeons repaired the valve and also performed a cardiac ablation. The procedure creates tiny scars in the heart that block irregular electrical signals, helping to restore a normal heartbeat. When the Colomas returned home, Dr. Bratincsak and the rest of the Kapiolani team continued her care through consistent checkups. As Leila grew into an active, effervescent toddler, her parents noticed she was starting to experience a familiar problem.

“If she ran around or played a lot, she would breathe heavily and it would take a while to get her heart rate back to normal,” Kayley said. “There were a few instances when her lips turned a little bluish purple, before returning to their normal color.”

“It was evident that her repaired valve was still not functioning well. It was not growing with her,” Dr. Bratincsak said. “She needed a second surgery.”

The then-3-year-old girl had her second open-heart surgery. This time, Dr. Bratincsak was able to make the repairs at Kapiolani, where the Colomas were surrounded by the support of family, friends and the medical team that cared for the little girl they had watched grow.

“It was such a huge relief,” Kayley said. “It was still very stressful, but I felt comforted knowing we would be home. Our familiar team of Kapiolani doctors, nurses and staff constantly asked if we needed anything, made sure we understood what was happening and reassured us all along the way.

“We have been to other hospitals, and it is not like that everywhere. Kapiolani is special.”

Loving Life

Leila is now 7 years old and in the second grade. She loves to dance, play basketball, and run around with her friends and her 2-year-old brother, Liam. She is an inspiration to so many at Kapiolani, and her story continues to touch many more across Hawaii and the nation as the 2024 Kapiolani Children’s Miracle Network Champion.

“To see her now, a smart, bright, beautiful little girl who runs around with so much energy, she is what drives us all to keep doing the work we do today,” Fernandez said. “I’m ecstatic to see her represent all the children we take care of at Kapiolani.”

Leila with her family. From left: Kayley, Liam and Jared Coloma.

Leila’s connection with Kapiolani will continue throughout her life. She will need more surgeries as she grows. Thanks to generous donors, she will not have to leave Hawaii. Kapiolani’s recently opened Pediatric Heart Center includes a new cardiac catheterization lab that enables Dr. Bratincsak and the cardiac teams to offer the latest lifesaving procedures alongside the heartfelt care and compassion that Kapiolani has provided families for decades.

“We’re just very grateful to donors for this new technology that will help us through Leila’s journey,” Kayley said.

“I have two children myself, but I always say that my patients at Kapiolani are my kids, too,” Dr. Bratincsak said. “You touch all their lives, so they become your children, and their families become my family as well. I regard them truly as my ohana.”