Randy's Story: Finally Finding Dedicated Congenital Heart Care for Adults

Tetralogy of Fallot is a rare condition in which four heart defects are present at birth. Thanks to cutting-edge techniques emerging in the 1960s, Randy was the fifth child to undergo the treatment (which saved his life) at Cincinnati Children’s. Amazingly, Randy says he lived a fairly normal childhood: “My mom didn’t treat me any differently than my brothers and sisters.”

When Randy was 18, his cardiologist told him he seemed stable and could probably space out his appointments. So Randy did. And before he knew it, 20 years had passed without a visit.

In the meantime, Randy mostly felt fine. He got married, had children and became a black belt in martial arts. In fact, it wasn’t until he took his grandchild to the doctor that the pediatrician recommended he return to Cincinnati Children’s for care.

Randy did, though as he got older, he also went to several emergency rooms for various chest pains and complications. After one series of ER visits, Randy found he and his doctors weren’t communicating as well as he wanted. He finally asked his Cincinnati Children’s doctor to help identify the problem. “They listen. It’s a conversation,” Randy said. They collaborated to conduct a series of tests based on the information Randy provided. The breakthrough came when his doctor took the time to go through his tests frame by frame until he located the problem: a cyst on his heart valve. After another surgery, the problem was resolved. Finally, Randy had an answer.

“The doctors here know me. They’ve been following me all my life.”

(Published January 2020)