I was lucky – I was diagnosed at birth. The doctors knew something was off with my heart rhythm when I was in utero, but the technology back then wasn’t advanced enough to know more than that. I was in distress when I was born, and I was born with heart block along with my LQTS Type 2. I was really fortunate to have pediatric cardiologists on the other side of Ann Arbor who knew about LQTS. I was zipped across town a few hours after I was born, and given my first temporary pacemaker. A couple days later, I was given my permanent pacemaker and started on a beta blocker. I’ve had the same course of treatment my whole life, and had an ICD/Pacemaker implanted in my early 20’s.
Things have come full circle with my daughter, Gabby, who had a similar presentation when she was born – she had heart block, and her first device put in right when she was born. But we knew a lot more this time around.
When I was growing up, the SADS Foundation was the only resource out there for families with LQTS. In the 1980s and 1990s, there wasn’t an abundance of information about LQTS – I remember my mom telling me that when they started learning about it, after I was born, they asked the cardiologist for all the medical journal information they could find. And it was only a handful of articles – they were able to print out every single article that existed. The SADS Foundation was a good repository for them.
A few years after my husband Brad and I moved to Michigan, the SADS conference was in Ann Arbor. I went to the conference and got reconnected. I was starting to have questions about having a child, being pregnant with a SADS condition, and what it would look like for the baby if she had it. I got connected to Alice, and I was able to meet other people with my heart condition face-to-face, which was pretty special.
After the conference, I emailed Alice directly about pregnancy and SADS conditions; I was hoping I could talk to somebody who’d gone through the experience. She responded very quickly and immediately connected me to a couple individuals who were really generous and shared their stories with me. Their openness about their experiences allowed me to feel confident about my decisions. They were so important to me during pregnancy, and I still consider them friends.
I started volunteering to be part of the Community Engagement Committee when I went to the conference in Ann Arbor. I was talking with volunteer Jen White and Alice about a research proposal – I have a history in clinical research and grant work – and we worked together to put together that application. That was the gateway to other activities. I like being on the CEC committee, and giving a little slice of the knowledge that I have to the SADS Foundation.
I’m also a facilitator for the SADS Foundation’s ICD Support Group. It was an honor to be asked to lead the group – I was very flattered. Even though I’m a facilitator, I’m also very engaged in the conversation, and it’s been a very powerful experience for me. It’s become a sacred time each month that my husband and I work very hard to block off.
It’s hard to describe what the feeling is when you find someone who’s going through the same challenges that you are. It’s validating. We all have different backgrounds in the support group – we have different communities and families, but we have that one unifying thing. And for many of us, that was such a pivotal moment in our lives, when we learned we were going to be living with an ICD – or woke up with one in our chest. It’s pretty cool that SADS was able to bring this group of people together and provide a platform for these discussions.
One of the reasons that I am active with the SADS Foundation is that I was grateful for those who were open with me, and I hope that my own experiences can help someone else who may feel like they need it. If you’re interested in getting involved, the SADS Foundation is a small organization – even though it provides a lot of information and resources, it’s very personal and personalized. Reach out to any individual person you find on the website and they can find the right activity for you. It’s easier than you think to get involved!
Are you interested in becoming a volunteer at the SADS Foundation? Click here to get started.