Can you tell me a little bit about your SADS journey – from diagnosis, to your dance competition this past Friday?
Alexis: I was shadowing a high school I was thinking about attending when I was in 7th grade, and I had a syncopal event. Afterwards, I had chest pain, so I went to the ER and they cleared me. I even went to a cardiologist, who said that everything was fine. They told me to come back in a year for a checkup, and at that checkup they saw a prolonged QT interval. Many doctors had missed it, and it was long enough that it shouldn’t have been missed.
We started going to different doctors to figure it out, and my mom’s research helped us get to the Mayo Clinic, where we could get Dr. Michael Ackerman’s opinion on whether I could continue to do athletics, and find a safe treatment option for me.
Meredith: She had a pre-screening cardiologist visit when she was ten. At the time, they said everything was fine, despite her having a pretty markedly prolonged QT interval. Over the course of her journey, she was missed by two cardiologists and two providers before we got a correct diagnosis.
Her syncopal event happened during a pep rally, which was very noisy, and in retrospect, it’s very suspicious of a cardiac event. And part of the reason that we’ve jumped into advocacy is that she was in a gym with an AED, and nobody used it or called 911. We’re hoping to better educate schools on what to do in case of an emergency. In the school where her event happened, they’ve since expanded their CPR-trained faculty, and are much more aware of what to do if someone has a cardiac event.
Can you delve a little more into specifically dance – how it felt to get your diagnosis as a dancer, and how you went from getting a diagnosis to dancing this weekend?
Alexis: At my initial appointment, the doctors said I wouldn’t be able to continue athletics or dance competitively. And that was really hard. But I didn’t feel like I could accept “no” as an answer, so my mom and I started to do some research. And we read stories about people who saw Dr. Ackerman, and his more modern take on LQTS – how it doesn’t always prevent you from being an athlete.
Meredith: It took a full year for her to get from diagnosis to feeling like she can do what she wants to do. She’s determined, and didn’t give up. And she’s blessed by having an amazing dance coach, who’s been willing to work with her no matter what. After Alexis initially got benched, she helped coach a youth team that was going to junior worlds, and helped them learn their dances. She went to the studio every night, even though she wasn’t dancing, just to stay involved.
We had a lot of setbacks – including a few medications that didn’t work – and she ended up with an epicardial ICD and a pacemaker. When she started dancing again, she hadn’t really danced in six months. And there were a lot of challenges – at first, on the beta blockers, she couldn’t get her heart rate up, and couldn’t dance at a competitive level. And Dr. Ackerman and our local cardiologist worked together to help make a new treatment plan that would work for her. It was amazing to have a team that was willing to individualize a plan so she could keep going.
When she finally could dance, her body was deconditioned from so much time off, so she got a bunch of injuries, including a stress fracture, which is not uncommon when someone goes from zero to 100 in a short period of time. She started cross training during the stress fracture to get stronger. She was really determined not to miss another season.
How has the Mayo Clinic team helped your family?
Meredith: They gave us our hope back. After being told she couldn’t dance, and that she had no freedom at age 14, we were living in a lot of fear. At Mayo Clinic, they did a thorough evaluation, and Dr. Ackerman spent a lot of time talking to us about her personal risk, and I felt comfortable knowing they had so much knowledge. When you’re missed by so many doctors, it’s easy to feel skeptical of everything. To live and thrive with a SADS condition, I think it’s really critical to know you have a good treatment plan that’s working so you can feel safe.
Now, she doesn’t think about LQTS all the time. She lives her life like a normal 14-year-old – except that she uses her experiences to help spread awareness. With the Kentucky Youth Assembly, she took a bill forward required AEDs in Kentucky high schools, and it passed, so now it’s in the capitol this February being considered for legislation. Someone who stood up as a “yes” for the bill in the audience had a best friend who had a cardiac arrest in the middle of lunch – just on a normal day in a Kentucky high school. It’s just so important to spread awareness.
How has the SADS Foundation been helpful for you and your family?
Alexis: It gives us a way to connect and do volunteer work, to reach out and help make a change and spread awareness.
Meredith: We started reaching out to our local media with our story because of a post on the SADS Foundation Facebook page. And SADS has been really helpful for good information. I listen to the webinars and join Friday’s SADS Live programs. I think anyone with a SADS condition can benefit tremendously from gaining education, because there’s such a gap in knowledge in the medical community, and families with SADS conditions need to advocate for themselves. SADS plays an important role in helping equip people with the education they need to advocate for their families, and help optimize their care.
Is there anything you would want to say to other teenagers who have recently received a SADS diagnosis?
Alexis: When you get your diagnosis, it might feel like the end of the world, but it’s really not. It could be worse – the scary part is not knowing. Because with a diagnosis, you can take steps to get treatment and stay safe. And I’m glad I advocated for myself to keep dancing, because it was hard, but it was worth it.
When I went to my original appointment with Dr. Ackerman, I had these socks that had flying pigs on them. Dr. Ackerman asked how important dance was to me, and I said, I’ll stop dancing when – and then I pointed to my socks.
Is there anything you would want to say to other parents who have recently had a child diagnosed with a SADS condition?
Meredith: Take a deep breath. It’s going to be scary, and it’s a long process. But getting diagnosed, and getting treatment, is a blessing. My heart goes out to the families who didn’t have the opportunity to have their child diagnosed, especially for such a treatable condition – it’s a medical tragedy. So it’s important to know that a diagnosis is a blessing in a way – it’s the beginning of getting safe.
Get reliable information – avoid random Google searching. Make sure you’re advocating for your child and get a timely visit with a provider with expertise. Don’t be afraid to ask questions. We kept asking why she couldn’t dance. If dancing had been too risky, we wouldn’t have continued to pursue it – but that wasn’t true in her case.
There’s a light at the end of the tunnel. With proper treatment, it gets less scary. It’s okay to have hope for your child, and to hope that they’ll be able to have a normal life. Make sure to follow the doctor’s instructions, no matter what – and you can live and thrive.