My Heart Belongs to Riley: Josh's Story
As the doctor listened closely to our son Joshua's heart right after his birth, it was immediately apparent that something was wrong. We learned our baby had a very serious and rare condition called Shone's Complex. When he was one day old, he was rushed by ambulance from Fort Wayne to Riley Hospital for Children.
I remember getting to Riley at 2:00 a.m. and feeling so scared. I also remember the reassurance that I felt with so many doctors at the top of their respective fields looking over his tiny bed and making plans to make him better. He had a balloon valvuloplasty on his aortic valve on the day we got to Riley, which was an effort to buy time to put off surgery to replace the valve. He stayed in the NICU for 17 days to make sure his heart was strong enough to go home.
The doctors wanted him to be around a year old and a bit bigger before they did his open heart surgery, but his case was so urgent that they performed it when he was just 8 weeks old. Josh was able to receive a life-saving Contegra heart valve that was not yet approved by the FDA because of a research study only at Riley. The Ross-Konno surgery he required is very rare, especially in small children. We were grateful that Dr. Mark Hoyer, his cardiologist, and Dr. John Brown, his heart surgeon, provided us with cutting-edge care.
Today, our son is nearly 12. Josh lives a full life and even plays basketball and runs cross-country! He will remain a lifelong cardiology patient, and will need more valve replacements in the future. Josh says that Riley fixed his heart once, and he is confident that they will do it again when he needs it.
My husband Matt and I would like to thank all of our Riley doctors, nurses and caregivers. We are so grateful to them for repairing our son's broken heart.
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