Ethan was born nearly 18 years ago with Tricuspid Atresia, a congenital heart defect in which a valve between two of the heart’s chambers isn’t formed. Instead, there’s solid tissue between the chambers, which restricts blood flow and causes the right ventricle to be underdeveloped. Because he knows that a heart transplant could be in his future, Ethan, a high school senior, hopes to study the use of stem cells to grow transplantable organs when he goes to college next year.
Knowing that someone has to die in order for him to receive a heart transplant bothers him,” said Ethan’s mom, Jeane. “He always thinks of others first, and he wants to study growing transplantable organs to alleviate that scenario if possible.”
After the last of his corrective surgeries at age 2, Ethan’s parents elected to move to Georgia from Mississippi to have access to better healthcare for him. They now see Brandon Harden, MD, at the Sibley Heart Center Cardiology clinic in Athens. Dr. Harden and Ethan bonded over being Eagle Scouts, a rank that Ethan achieved earlier this year. His other accomplishments are similarly impressive. Ethan played trombone in concert band for six years and vibraphone in marching band for two. He is in the top 5 percent of his high school class and was chosen as a Questbridge College Prep Scholar.
Jeane said that Ethan’s life now was almost unimaginable to her when he was first diagnosed with CHD at 20 weeks in utero. The medical options were not nearly as good as they are now, and they are improving all the time. Jeane attends Sibley’s annual Parenting Your Heart Child Conference, where she is encouraged to hear about new CHD research and advancements. She marvels at what a full life Ethan’s been able to live for 17 years.
“It’s a hard road, for sure,” Jeane said. “But it’s worth it. We were not given much hope when Ethan was born, but there are good outcomes. It’s important to get connected with others, like Kids at Heart, who will be supportive and share those outcomes with you.”
Jeane said her family has learned to take nothing for granted and to celebrate everything – even the small, everyday things – because circumstances can change in an instant.
“We don’t like the word ‘defective’ when describing Ethan’s heart,” Jeane said. “God formed his heart exactly as He wanted it to be, and Ethan’s going to use it to help others.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.