Just six weeks after Brantley and Briana’s gender reveal party, where they learned they’d be having a third son, they went in for a second ultrasound to look at the baby’s anatomy. Expecting no further surprises, they were unprepared to hear the news of what doctors saw. Their baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a complex and rare heart defect in which the left side of the heart is critically underdeveloped.
“When you’re diagnosed with something like that, the access to information these days is both a blessing and curse,” Brantley said. “We were told, ‘Do not Google this. Do not get on the internet because it’s just going to scare you.’ Of course, the first thing my wife did when we got in the car was look up HLHS.”
Brantley said the next 20 weeks until Isaac’s birth was “basically sheer terror” but the doctors and staff at Sibley did their best to prepare the couple for what was to come. They had time to research, ask questions and even changed Briana’s obstetrician so she could deliver closer to Egleston.
The cardiologist was fantastic, and he told us what to expect,” Brantley said. “He assured us that, with today’s technology, they were going to give Isaac the best chance he could have.”
When Isaac was two days old, he had his first open heart surgery – the Norwood Procedure, which helps improve the heart’s function by using the child’s single pumping chamber to support the body while supplying blood flow to the lung through a shunt. About three months later, he had the Glenn Procedure in which the main vein (superior vena cava) that routes oxygen-poor blood from the upper half of the body is connected to the pulmonary artery. When Isaac is around 3 years old, he’ll have the third surgery, the Fontan Procedure, to finish the repair on his heart. After many ups and downs and spending 135 days in the hospital, Isaac was finally discharged on February 18.
These days, Isaac is growing well and learning to walk and talk. After many weeks of Briana patiently working with him, Isaac can eat without a feeding tube and the results have been dramatic.
“He’s chunky! Everybody loves chunky babies,” Brantley said. “He can crawl very fast if he hears the refrigerator opening, and he eats more than my 3-year-old!”
Through it all, Brantley says Sibley has been their “cornerstone of comfort.” They have educated them about everything from the surgeries their son has needed to how to talk to emergency responders about his condition.
“What I try to remember is that I’m not their patient, he is,” Brantley said. “Their decisions are made solely for my son, and they’re looking after his safety, his health and giving him the best chance of living a full life. I don’t have the words to say how much we love all the doctors and the care team who have looked over him. These are people we’ll never be able to thank properly.”
But they do try. For example, for Isaac’s birthday in September, Brantley and Briana raised $1,800 to provide a Feed the Heart dinner for other CHD families and donated the rest to the Feed the Heart foundation. Brantley also has launched a Facebook support group for Georgia Heart Dads.
“I was involved in some groups for heart dads around the world, but there wasn’t one specifically for Georgia dads,” Brantley said. “You live in a bubble when you’re in the hospital with a sick child. Sometimes you don’t leave the hospital for days at a time. Whenever we have to be at Egleston with Isaac, I always reach out to in-patient families to see if we can bring them snacks, shampoo, anything they need. This is a way to connect people who are going through the same thing. Strength comes in numbers.”
To request to join the private Facebook group, visit Georgia Heart Dads.
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.