Josh Clark’s parents knew immediately after his birth something was wrong. “He didn’t pink up right away,” says Laura Clark, Josh’s mom. “He was our second baby so we knew it was taking longer to get him to us.”
Doctors transferred Josh from Fort Wayne to Riley Hospital for Children at Indiana University Health, where he was diagnosed with Shone’s Complex, a series of heart defects involving multiple obstructions on the left side of the heart. Doctors used a balloon valvuloplasty procedure to widen a valve in Josh’s heart, and he was eventually able to go home.
Eight weeks after his first surgery, Josh’s appetite was suppressed and he was breathing too fast, so he went back to Riley. At the time, Riley was participating in a research trial for the Contegra heart valve, made from a cow vein, and it turned out to be a great option for Josh. Riley Heart surgeon John Brown, M.D., and Mark Turrentine, M.D., worked together to perform the challenging Ross-Konno procedure, moving one of Josh’s heart valves over and replacing it with the Contegra valve. “That research study saved him and saved his life,” says Laura. “His quality of life is so much better because of that valve and that study.”
Josh, now 13 years old, lives like a normal teenager. He runs cross-country, plays basketball and participates in show choir. Most people who know Josh never suspect he has a heart defect. “When I was little everyone was saying, ‘He won’t be able to do this, he won’t be able to do that,’” says Josh. “So, I’ve just kind of made it my business to really show them wrong.”
Josh goes back to Riley to have his heart checked each year. He will eventually outgrow the Contegra valve and need another open-heart surgery. In the meantime Josh and his family have given back to Riley in many ways including sharing their story at the Majik 95.1 Radiothon and participating in Fort Wayne’s annual Run for Riley. Now, they’re embracing his new role as a Riley Champion.
“The recognition gives Josh a chance to tell his story and share the amazing things Riley has done to save him,” says Laura. “It’s so important that people donate to Riley research because there are so many more advances to be made. Children’s quality of life can really benefit from those donations.”