In 1997, my wife and I had three kids. Our son Michael, who was eleven, had fainted twice. The first time, it was explained away by the E.R. and his pediatrician as a vasovagal episode from unusual activities. The second time, he got an EKG and was examined by a neurologist and cardiologist. Nobody ever mentioned Long QT, and he was given a clean bill of health.

In June of 1997, we went on a family vacation to Israel. My oldest son was turning 13, and it was his Bar Mitzvah. With a group from our synagogue, we toured the country. On the day of his Bar Mitzvah, we went into the desert. It had been a very long and hot day, and we had a swimming pool party that night. Michael and his sister were swimming – they were holding their breath and doing laps underwater – when Michael became unresponsive. My wife jumped in the pool, and we did CPR by the side of the pool for 40 minutes or so. There was no 911 available – we were in the middle of the desert – and there was no defibrillator, which we found out later was what we needed. 45 minutes later, an Israeli helicopter with a medical unit arrived. They tried to revive him but couldn’t. He passed away in our arms, with his brother and sister watching. It was very traumatic.

It never sat right with me that the cause of death listed on the death certificate was drowning. Michael was a healthy eleven-year-old – he was very athletic; he could run and play for hours. The only concern we had was that he’d fainted twice. About six months after he’d passed away, I was going through some paperwork and came across medical files from several years before when he’d had his EKG. I took it to the Cleveland Clinic, where they had a renowned EP department, and showed it to the head of the department – who’d known Michael, even coached him in soccer. He had tears in his eyes, and said that it was abnormal – it showed a very long QT interval. Michael had been misdiagnosed.

This was 1997, so there was no easy access to genetic testing. There was a well-known cardiologist in Rochester who went over our records and said that he, too, thought Michael had LQTS, and that it would be great to prove it. He recommended that we call Dr. Michael Vincent, who was wonderful – that’s how I found out about the SADS Foundation. It took almost a year to get our genetic results, but we did finally get a call confirming that Michael had LQTS, which was the likely cause of death, and that the rest of our family needed to be tested. Michael’s mother and my daughter both also have LQTS Type 1.

The two things that really helped me personally were Compassionate Friends – an organization that helps bereaved parents; I went to their meetings once a month – and the SADS Foundation. They helped put me in touch with a community, and gave me a way to help others through volunteering and donating. I love their annual meetings, their medical and research programs, and everybody there.

These conditions can be particularly hard because the first time a family finds out about them, is often because of an event – like a sudden death, in our case. These conditions are also hard for other members of the family. My daughter was only eight when her brother passed away. When we were told what she had – many years ago – we were told to stop any physical activity she was engaged in (she was a member of the soccer and volleyball teams at the time). We were petrified as parents, because they told us that a sudden startle could trigger an event. We had friends who wouldn’t let her sleep over any more – because what if something happened during the night? It changed her life forever.

I’ve talked to lots of families about grief – about embracing the grief and not running from it. The great physicians, like Dr. Ackerman, come as close to understanding it as anyone outside the experience can, but there’s nothing like talking to others who have gone through this experience themselves.

Grieving is a long process. Over time it gets better – it never goes away, it’s always there, but it eases over time. You can go on with life and find joy and happiness again.