At first glance, when meeting 15-month-old Rowan Ezra Gaona, you might catch a glimpse of his big smile and sweet personality.
Says his mom, Chelsea Gaona, “He’s shown he’s our little miracle baby.”
While pregnant, the then-soon-to-be mom received shocking news during her routine 20-week ultrasound. Rowan’s unexpected diagnosis in utero? Hypoplastic left heart syndrome (HLHS), a life-threatening congenital (present at birth) heart defect in which the left side of the heart — the area responsible for pumping oxygen-rich blood throughout the body — is underdeveloped or too small. As a result of this condition, 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,” Gaona remembers. “You’re never prepared to hear only half of your baby’s heart formed.”
Careful heart monitoring
Gaona 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 during pregnancy. These imaging tests utilize ultrasound waves to produce detailed pictures of the heart, giving doctors the opportunity to obtain information about the heart’s function, structure, 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 says. “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.”
While preparing for the delivery of her son, Gaona received immense peace of mind under the care of Dr. Shenoy and the Terry Heart Institute.
“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 shares.
Finally able to hold Rowan
In December 2023, Gaona delivered Rowan at Baptist Medical Center Jacksonville with the Wolfson Children’s Neonatal Intensive Care Unit (NICU) team at the ready. She was able to see her son for just a few seconds before he was taken to the NICU in the Borowy Family Children’s Critical Care Tower.
After two days of careful monitoring, Rowan was moved to the Cardiovascular Intensive Care Unit (CVICU) in the Borowy Tower, and Gaona was reunited with her son and husband.
She recalls, “Finally being able to hold him was a feeling I can’t describe.”
Happy and thriving
According to Dr. Shenoy, babies born with HLHS need at least three open-heart procedures over the first two to four years of their life. Rowan had the first surgery when he was about two weeks old and the second in July 2024. His last heart surgery will take place between the ages of 2 and 3 years old.
Just a few months after his second procedure, Rowan celebrated his first birthday in December 2024! According to Gaona, Rowan is eating and drinking independently and hitting his milestones. He no longer needs oxygen or a feeding tube, and is now down to just two of the nine medications he had been on.
“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,” says his mom. “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 adds.
Support the Terry Heart Institute (and enter to win a bass boat!)
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 Wolfson Children’s Bass Tournament was held May 15-17, 2025, and there is still time to win a drawing for a new bass boat! Proceeds support Wolfson Children’s Hospital patients and the Terry Heart Institute, and the Gaona family is excited to help represent the team that saved Rowan’s life.
Boat drawing ticket sales end on Thursday, May 29, at 12 p.m. The winning ticket will be pulled on Friday, May 30, 11am. Drawing rules can be found here.
“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 says. “We adore our Wolfson Children’s family and are so grateful for everything they’ve done for us.”
READ: Essential EKG: Why Every Kid Should Have a Heart Screening
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, visit wolfsonchildrens.com/heart or call 904.202.8550.
