Down Syndrome and congenital heart defects

When it comes to matters of the heart, some conditions involve things we can impact, but others we have no control over. About one in 100 babies born in this country have some sort of heart defect. The number is much, much higher for babies with Down Syndrome.

Since the day he was born, Devin Cannon has been a blessing, although his birth came with some unexpected surprises.

“When he was born in 1991, we were not aware that he would have Down syndrome,” his mother Angie Cannon said. “When Devin was born, he did have five holes in his heart, and so it was a very scary time.”

“When Devin was born, he did have five holes in his heart, and so it was a very scary time.” Angie Cannon, mother

Babies with Down Syndrome have a much higher rate of heart defects, impacting between 40-60% of births.

It was a lot for the Cannon family. Devin will need heart monitoring for the rest of his life. His mother said he connected with heart specialists at Golisano Children’s Hospital when he was 1 month old.

Nurse practitioner Shantelle Barta is part of his care team at the hospital’s congenital heart program. “He has a small hole and between the bottom chambers of his heart, so that’s what we call the VSD,” Barta said. “His is kind of on top, near his heart valves, and so we follow it to make sure that there’s no leaking of the valves or that there’s no obstruction.”

As Devin grew, four of the holes in his heart closed. They have continued to keep watch on the last one going on 32 years.

It’s not uncommon for patients to stay with a pediatric heart program that specializes in birth defects.

“We continue to follow even adults that were born with heart defects,” Barta told WINK News health and medical reporter Amy Oshier, “so about one in 100 babies is born with some kind of heart defect. It can be something very mild to something that’s very complex.”

Devin has grown and thrived in the three decades he’s been under Golisano’s care. He loves Spiderman and playing sports.

His mother said he inspires her with his huge heart. “He enjoys every minute he spends he wakes up singing and dancing, and he loves his life.”

Nowadays, most congenital heart defects are picked up at birth. That wasn’t the case many years ago. Thanks to comprehensive screening and treatments, patients are living longer, healthier lives.