Rowan Ezra Gaona was born with a rare heart defect in December. He’s had the first of three open heart surgeries.
JACKSONVILLE, Fla. — Chelsea Gaona was 20 weeks pregnant when she got devastating news: her baby was diagnosed with hypoplastic left heart syndrome.
“I went to the appointment like any other and was chatting and laughing with the nurses and she got really quiet. I just knew something was wrong,” Gaona said. “We went back and the doctor explained what was going on, and that he would be born without the fourth chamber of his heart.”
Her husband, Ben Gaona, a former band director at Bartram Trail High School, had just started a new job as a band director at Flager Palm Coast High and got the call at work.
“Shattering, that’s the best word. The bottom just kind of drops out of your heart. And you don’t know how to process it because you really don’t know what this diagnosis means,” Ben Gaona said. “It was definitely the hardest day of my life.”
The week before Christmas, Rowan Ezra Gaona was born at Wolfson Children’s Hospital.
“It’s one of the most complex congenital heart diseases. It has a very high mortality rate,” Dr. Kaushal Dosani at Wolfson Children’s Hospital said. “In fact, without any intervention, without surgery, without proper care, 95% of children with this condition don’t survive even up to one month of age.”
But Rowan has not only survived, he’s thriving. In January, Rowan underwent the first of three open heart surgeries.
“Before the surgery, every single member of the staff, they they prayed with us. We got to pray with the surgeon, and I held the surgeons hands and I knew that those hands were going to be the one that that saved my son,” Chelsea Gaona said.
They picked Ezra as his middle name because of what it means.
“God has heard. God has protected. God has healed. And we just wanted to speak that over his life and it’s carried him this far, and he’s shown he’s a little miracle baby,” Chelsea Gaona said. “Most babies with hypoplastic left heart syndrome will stay on the ventilator for a minimum of a month and Rowan was off of it in six days breathing.”
“Rowan is nothing but sort of a medical miracle,” Dr. Dosani said. “I think with all the love that mom has been showering on him, along with the care that he receives from a dedicated team of bedside nurses, the nurse practitioners, respiratory therapists, pharmacists, physical therapists, nutritionists, everybody, he has done remarkably well.”
“It’s just incredible. Three weeks ago they didn’t even close his chest after surgery. We had to wait to make sure there’s no swelling. He’s got chest tubes, pacing wires so they can can control the rhythm of his heart. It was a very terrifying thing to walk in and see your tiny little baby like that. But now he’s gaining weight and he’s happy and he was watching Finding Nemo today,” Chelsea Gaona said. “It’s just all the normal things that we’re getting to do now that I didn’t even expect would happen for months.”
With only one car, the couple who lives in St. Johns County, had to juggle between Ben driving to Palm Coast for work and trips to Wolfson Children’s Hospital in downtown Jacksonville where Rowan will be living for months. Their friends started a Go Fund Me page to help them get a second car.
“And in a couple of days our family, friends, people we didn’t know, people who are not even in the U.S. were messaging us, sending us love and saying we’re praying for you. And that amount went up and up and we were able to put a really great down payment on a vehicle that we’re still paying for, but we have the vehicle.” Chelsea Gaona said. “I just wept because it was just an incredible thing to know that people who didn’t even know us would love on our family like that, love on our little baby and just have not words for it.”
Rowan is expected to stay at Wolfson Children’s Hospital until after his second open heart surgery this Spring.
“I think we are all little stronger than we think are,” Ben Gaona said. “It’s one step at a time, it’s one day at a time. And that’s what we’ve been doing. And it’s been a long journey. And it’s hard. It’s 100% hard, not trying to deceive anybody. But you have to take it step by step. And trust in the people around you. And we’re very blessed. We have wonderful, wonderful friends and family, and we’ve been well cared for.”
The Gaonas look forward to the day their son can finally leave the hospital and go home.
“I feel like we’re thrown a lot of curveballs sometimes that we don’t expect. And we have a choice to let it just really knock us down and not come up from or, you know, just to rise above it,” Chelsea Gaona said. “Just because you’re given something really hard doesn’t mean you can’t rise above it.”