When my son, Joey, was six years old, he was diagnosed with Long QT Syndrome Type 2. The day he was diagnosed was the hardest day of my life but I want to tell our story in the hopes that my experience can help another family.
It was March 2015 and when I picked up Joey from school, he told me that he had a pain in his heart (exact words) when he was running a recess. I started asking him more questions as I knew that he had a heart murmur from birth. That night on the evening news, I saw that a girl went into sudden cardiac arrest. I started looking up symptoms and decided to call the pediatrician the next day.
During our appointment, I informed her that I had just signed up Joey for soccer so she ordered an EKG so he could be “cleared’ for soccer and all would be good. Little did I know that getting an EKG shortly after at Cincinnati Children’s Hospital, would show that my son had an extremely dangerous heart arrhythmia. The doctor told us that Joey would never be able to play competitive sports and he needed to start a beta blocker that day. I left the room and went to the restroom to bawl my eyes out.
After the diagnosis, we were referred to an electrophysiologist since his heart condition is completely electrical. I started all my research to learn more about Long QT, and I was completely devastated to know that his condition is considered “Sudden Arrhythmia Death Syndrome.” No one wants to hear the words “death” associated with their child. I joined several Facebook groups and started following the SADS Foundation to help get us through this tough time.
Jumping ahead to today, I am thankful to have an amazing heart institute here in Cincinnati. Through Cincinnati Children’s, Joey goes to Camp Joyful Hearts and plays golf through their program with Children’s Heart Association of Cincinnati. Joey also attends an amazing school district that has been proactive in putting a 504 plan into place. And luckily he loves to draw so not being able to play competitive sports was an easy adjustment.
Knowledge and support have been my power through all of this and I hope that I can share my story to help someone else. I credit my son for telling me exactly how he felt that day and our pediatrician who saved his life by listening to us, because who knows what would’ve happened on that soccer field.