’We never felt alone’

The first things you notice when you meet 15-month-old Rowan Ezra Gaona are his big smile and friendly personality.

“He's shown he's our little miracle baby,” said his mom, Chelsea Gaona.

During her routine 20-week ultrasound, the soon-to-be-first-time mom received unexpected news. Rowan was diagnosed in utero with hypoplastic left heart syndrome (HLHS), a life-threatening congenital (present at birth) heart defect in which the left side of the heart – the part responsible for pumping oxygen-rich blood to the body – is too small or underdeveloped. As a result, the heart can’t pump blood effectively.

“The short wait for the doctor to come in after the ultrasound felt like the longest of my life. My husband didn't come to that appointment, so getting that news without him was awful. You're never prepared to hear only half of your baby's heart formed,” Gaona said.

Watching Rowan: Monitoring a congenital heart defect

As her pregnancy progressed, Gaona also began seeing Rajesh Shenoy, MD, a pediatric cardiologist and medical director of the C. Herman and Mary Virginia Terry Heart Institute at Wolfson Children’s Hospital, for monthly fetal echocardiograms. These imaging tests use ultrasound waves to create detailed pictures of the baby's heart, allowing doctors to get information about its structure, function and blood flow.

“Nearly 1,500 babies are born in the United States with HLHS every year. Fetal cardiologists and sonographers play an important role in identifying this condition during pregnancy,” Dr. Shenoy said. “In addition to giving the family time to get support and make plans based on the diagnosis, the ultrasound helps identify babies with serious health concerns that may require immediate care or intervention after birth.”

Gaona said being under the care of Dr. Shenoy and the Terry Heart Institute team provided peace of mind as she prepared for Rowan’s delivery.

“They did everything they could to best prepare us for Rowan’s arrival. It was really special to know Dr. Shenoy and the rest of the Terry Heart team before Rowan was even born,” she said.

A high-risk delivery

In December 2023, Gaona delivered Rowan at Baptist Medical Center Jacksonville with the Wolfson Children’s Neonatal Intensive Care Unit (NICU) team on standby. She spent only a few seconds with Rowan before he was taken to the NICU in the Borowy Family Children’s Critical Care Tower.

Two days later, Rowan was moved to the Cardiovascular Intensive Care Unit (CVICU) in the Borowy Tower, and Gaona was reunited with her son and husband.

“Finally being able to hold him was a feeling I can't describe,” she recalled.

Thriving after pediatric heart surgeries

According to Dr. Shenoy, babies born with HLHS require at least three open-heart procedures over the first two to four years of their life. Rowan underwent the first procedure when he was about two weeks old and the second in July 2024. His final surgery will take place between the ages of 2 and 3 years old.

A few months after his second surgery, Rowan celebrated his first birthday in December 2024, and Gaona said he is eating and drinking independently and hitting his milestones. He's down to just two of the nine medications he had been taking, and he no longer requires a feeding tube or oxygen.

“He is the happiest baby I have ever met and that's not an exaggeration. He never meets a stranger and loves to laugh and be outside,” Gaona said. “It amazes me how happy he is and trusting of people after everything. He loves everyone so much and always has a smile on his face.”

Gaona said Wolfson Children’s Hospital became a second home and the team members became like family.

“Everyone went out of their way to ensure we were as comfortable and supported as possible. We never felt alone. The nurses and doctors in the CVICU are family to us,” she said.

Supporting the Terry Heart Institute

This year, Rowan will serve as the ambassador for the 36th annual Wolfson Children’s Hospital Bass Tournament. Since the first tournament in 1989, the event has raised more than $7 million for Wolfson Children’s patients and services.

The tournament's proceeds benefit the Terry Heart Institute, and the Gaona family is excited to help represent the team that saved Rowan’s life.

“I've never experienced that kind of love and dedication in a hospital. It's not just a job to them; it's their love language,” Gaona said. “We adore our Wolfson Children’s family and are so grateful for everything they've done for us.

The pediatric cardiology, electrophysiology, imaging, cardiac intensive care, cardiac anesthesiology and heart surgery teams with Wolfson Children’s C. Herman and Mary Virginia Terry Heart Institute treat a full range of pediatric cardiovascular conditions. To learn more, call 904.202.8550 or visit wolfsonchildrens.com/heart.