Russell’s Story: One Congenital Heart Defect, Many Doctors

About an hour after he was born, Russell started turning blue. His delivery doctor had recently learned about congenital heart defects and noticed the signs, quickly diagnosing him with tricuspid atresia. A Waterson shunt was placed when Russell was 12 days old. At age 10, Russell had open-heart Fontan surgery.

But Russell says his parents never let him wallow in the fact that he was sick, and instead encouraged him to be active and walk every day. Now, his adult congenital heart defect specialists at Cincinnati Children’s play a big part in keeping him healthy and active through regular check-ups. Unfortunately, it’s still easy to overdo it—something Russell discovered when he was hiking in Yellowstone National Park and needed to be evacuated. “I forgot about the elevation, and that kind of really did me in. It was just too much exertion,” he says.

In the years since that day, Russell has regularly seen a team of doctors that includes the adult congenital heart defect specialists at Cincinnati Children’s as well as doctors at other hospitals. The schedulers at Cincinnati Children’s help coordinate and consolidate all of his appointments. He knows his condition is complicated, and he’s happy to see as many doctors as it takes to keep him healthy—and all of his doctors work together to do just that.

“We congenital heart patients, as we get older and older, are kind of tricky, and so I haven’t been so opposed to the seeming inefficiency of multiple doctors, multiple cities, multiple hospitals being involved in my care. I think it has led to a good outcome so far. Everyone has played nice and been collaborative; I don’t get the sense that there’s any ego about it. I feel like I’m at the center of it, that the good of me is at the center of everybody’s wishes, and I’ve been happy about that.”

(Published August 2018)