This is one of those “meant to be” stories. Simon’s Fund is a nonprofit dedicated to screening for heart defects in children, especially Long QT Syndrome. For about the past year, my husband and I have been waiting on a definitive diagnosis of Long QT Syndrome for our 13 year old daughter, Sammi. And then in April, I read a blog post about Simon’s Fund on my friend Jessica’s blog, Look Who Found the Marbles. I asked Jessica for the contact information for Simon’s Fund so I could write a blog post about the organization. Instead, I got an email from Simon’s Dad, Darren and then a phone call. He was more interested in helping us than my sharing the important work they are doing.
We talked about how one of Sammi’s EKGs was abnormal and that one pediatric cardiologist diagnosed her with Long QT and mentioned sudden death right in front of Sammi. She was so abrupt that we just wanted to ignore her. We made an appointment with our regular cardiologist and were told that the EKG was calculated wrong and there was nothing to worry about. Instead, more abnormal EKG’s turned up. abnormal. Genetic testing for Long QT was done, which turned out negative. We were reassured that the EKG’s were a fluke, but to be on the safe side not to give Sammi any of the medications that could cause Long QT Syndrome.
Darren listened and asked some questions. He offered to take the EKG’s to the cardiologist Simon’s Fund works with at Philadelphia’s Children’s Hospital, but by then we had a second opinion set up. Just yesterday, we got the news we were dreading. Sammi has Long QT Syndrome. She starts on Beta Blockers and just finished wearing a 24 hour heart monitor. More tests and appointments are scheduled. And we have Darren from Simon’s Fund to offer us support and information.
Please take the time to read this guest post from Darren Sudman about Simon and about the work that Simon’s Fund is doing. This may touch you one day, so share the information and reach out to see how you can help.
It was our second child so we had a somewhat of a clue. It was nothing like our first which was totally overwhelming. We knew about Tay Sachs. We knew about SIDS. We heard about jaundice. We knew there was a car seat test. We’d never heard of Long QT Syndrome. That’s what killed our son.
Simon was born on October 21, 2004. He was average for height and weight. He scored 8 and 9 on his APGAR test. He had some reflux. He smiled for the first time at 47 days. He died 30 days later. He was taking his regularly scheduled post dinner nap and did not wake up. Most people assume that an infant death is SIDS. We were very glad that our pediatrician didn’t belong to that “everyone” camp. She told us to get our hearts checked. She said “babies don’t just die.” After getting a simple and inexpensive test, ECG exam, Phyllis, Simon’s mother, was diagnosed with Long QT Syndrome. It’s an arrhythmia that causes the heart to get out of its normal rhythm leading to sudden cardiac arrest.
This was the beginning of our journey. We learned that up to 15% of all SIDS deaths (3,000 babies die from SIDS every year) are attributed to Long QT Syndrome. We learned that 2,000 kids die every year from sudden cardiac arrest. We learned that an overwhelming majority of drownings at colleges should also be attributed to sudden cardiac arrest. It was our second, but we really didn’t have a clue.
We started Simon’s Fund so that we could prevent other families from experiencing the tragedy and devastation of losing a child to sudden cardiac arrest. We talk about the symptoms – fainting with exercise, shortness of breath and a rapid heart rate. We host heart screenings at schools. We’ve checked almost 4,000 hearts and helped 38 children discover potentially-fatal heart conditions. We sponsor medical fellows to study about sudden cardiac arrest in children. We are one week away from watching Governor Tom Corbett sign the Sudden Cardiac Arrest Prevention Act – a law that will protect student athletes from sudden cardiac arrest. Edit – This has been signed!
We screen our children for so many conditions. It is the hope of Simon’s Fund that we will begin to screen our children’s hearts too. After all, it is a pretty important organ.