11 Years After an HLHS Diagnosis, Mason Thrives

While still pregnant, Tonya was given a diagnosis of Hypoplastic Left Heart Syndrome (HLHS) for the son she was carrying, who would be named Mason. That news set her and husband Jeff on a roller coaster of ups and downs and a sometimes-harrowing journey into the world of congenital heart disease.

By the time Mason was 5 years old, he’d had in-utero fetal catheter intervention plus three open heart surgeries to correct his condition and stabilize his heart. Tonya says that after his first post-surgery session with a physical therapist, he never looked back. His determination, persistence and courage has enabled him to recover and thrive. Today, although he continues to work on his strength and balance, he walks and runs without assistance and most people wouldn’t notice his differences if they didn’t know what he’d been through.

Neill Videlefsky, MD, is Mason’s pediatric cardiologist at Sibley Heart Center Cardiology. Tonya said Dr. V’s reassurances that they would one day experience “normal” life kept her and Jeff positive and moving forward through the toughest parts of Mason’s journey.

“He told us everything that could happen, but he was also positive about the technology available and kept telling us things would stabilize, and we would find normal in the chaos,” Tonya said. “It’s important to find a doctor you can trust implicitly and who will answer all the questions you have. It’s also important to realize you will be the best advocate for your child, not just in the hospital but at their pediatrician’s office, at the dentist, at school. You know your child best, and you know what’s out of character for him. Don’t compare yourself to anyone else. Kids move at their own pace.”

Mason is now a homeschooled fourth grader who loves Roblox, Minecraft, Cub Scouts, TOPSoccer and physical therapy, especially when it’s in a pool. He served as a ring bearer in his sister’s wedding, and he and his family support the Atlanta Congenital Heart Walk each year.

Tonya says that the one of the biggest takeaways from Mason’s heart warrior journey is that it’s okay to go with the flow, and if a plan doesn’t work out, you can scrap it and go a different way. She is intentional about following Mason’s lead.

“While this is an incredibly difficult ride, at the end of the day, it will probably be the biggest blessing you will ever experience,” Tonya said. “You learn to appreciate the little things more. Most of life is lived on auto pilot, but every little milestone we hit and everything we get to do with Mason is a big celebration. We take time to enjoy it.”

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.