When Eliott was just nine years old, he had a Sudden Cardiac Arrest (SCA) at an early-morning soccer game.
Thanks to the quick action of a pediatric ICU doctor who happened to be watching the game, Eliott received life-saving CPR – and was diagnosed, after a full day in the E.R., with Long QT Syndrome, a genetic heart rhythm condition. Eliott’s father, Aaron, also has LQTS, as well as his sister.
“I was in shock,” says his mother, Christina. “One moment my child was playing soccer; and the next moment, the doctors were using the term aborted Sudden Cardiac Death. It was hard to process.”
It’s been eight years since Eliott’s SCA – and over time, the diagnosis has gotten easier for Eliott and his family. “For the first few years, I was always afraid when the school called that it would be the worst case,” says Christina. “But we’ve found ways to go on with our life. When you learn to accept this diagnosis, you can engage in life and embrace it, rather than always feeling anxious.”
The electrophysiology team at Children’s National Hospital was critical in helping Eliott and his family move past the anxiety of early diagnosis. “The doctors and nurses and Children’s National are the best you’ll meet,” says Christina. “They have an amazing hotline for questions, and helped us with things like getting Eliott’s driver’s license when he was older.”
Dr. Charles Berul implanted an ICD in Eliott – a small device that monitors and automatically treats any abnormal heart rhythms. “Dr. Berul opened his schedule for us and got us in right away,” says Christina. And Vicki Freedenberg, an electrophysiology nurse scientist, helped Eliott learn mindfulness skills to help with mental health and pain management – skills he continues to use to this day.
Christina wants other parents to know that although heart conditions like LQTS can be scary, getting a diagnosis is a blessing.
“Not knowing about these conditions can be deadly, but with a diagnosis, you can go on to live a full life,” says Christina. “I’m amazed at the marvel of medicine, and the encouraging and kind doctors who’ve helped us.”
If you suspect that you or your child may have a SADS condition, we’re here to help! Reach out to us for more information.