Celebrating Life with Riley - National Donate Life Month

Riley was our first born. We thought he was a perfectly healthy baby boy. At his 15 month well child checkup he had an ear infection and I took him back a week later to make sure it had cleared up. During that appointment while listening to Riley’s heart the doctor said she heard something unusual and wanted another doctor to have a listen. Then another doctor was brought in to listen. They told me his heart beat was not sounding normal and wanted us to take him to a cardiologist to be safe. I was immediately worried but they assured me it was probably nothing but better to be safe than sorry. We had no heart conditions in our family that we knew of, especially nothing in children. 

So the following week my husband and I took Riley to see cardiologist Dr. Bezold. They did an EKG, echo and chest x-ray. And at the end of those tests, the doctor and nurse came in and said they had some very serious news to give us. The doctor said Riley had Restrictive Cardiomyopathy and there was no medications or surgeries available to treat this specific heart condition and that his only chance for survival was a heart transplant. He told us he had maybe two years to live without a new heart. He said he was shocked Riley wasn’t really sick and in the hospital already. For reasons we don’t know, Riley always looked and acted like he was a perfectly healthy baby boy. We got two more opinions after his diagnosis and all three hospitals told us the same thing. We listed him on the transplant list at Cincinnati Children’s Hospital where he received his new heart ten days later at the age of 18 months old. We were fortunate to not ever see our son seriously ill before his transplant but it also made the whole thing a lot harder to believe and understand. We have had our ups and downs over the past 14 years, his next anniversary is coming up this month on the 28th, it will be 15 years post heart transplant and Riley is doing amazing! He just turned 16 and got his driver's permit! We are so blessed to still have him and are thankful for his donor family everyday. 

After his transplant we did genetic testing and found out Riley’s dad Nathan has Hypertrophic cardiomyopathy and he started medication and had an ICD and pacemaker put in.