Can you tell me a little bit about your family’s SADS journey?

In utero, our doctors thought that my daughter Madison had heart block, and I was sent to a specialist.

They confirmed that it was not a heart block – she just had a low heart rate. When Madison was delivered, we decided to go with a pediatrician cardiology specialist. He did an EKG and an echo. She had some periods of apnea. So he sent her home on a monitor, so if her heart stopped beating or she stopped breathing for any length of time, the alarm would go off. Before we could even leave the hospital, my husband and my parents had to be trained in CPR, just in case she stopped breathing.

At the age of six, Madison was playing soccer on a hot and humid day. It was always in the back of my mind that something might be wrong with her heart. And as a nurse, you just always think about this kind of thing. She came over to me and said, my chest hurts. So I held her and felt her heart, and I could feel a dysrhythmia. That was on a Wednesday. On Friday, we had a movie night, and Madison curled up in my lap. I had my hands over her chest, and her heart was fine. And then all of a sudden, I felt another dysrhythmia. So I called the pediatrician on Monday, and he said, get her to the office as soon as possible. He did an EKG, and then sent her over to the hospital for a chest X ray and an echocardiogram. And he said, Mandi, I think Madison has Long QT Syndrome. We need to get her to a electrophysiologist.

The EP said her numbers weren’t that high, and that she didn’t have LQTS, and didn’t need any sports restrictions. We followed up with her pediatrician every year for physicals. He did an EKG on her again, and he said, Mandi, I’m just going to tell you if this was my daughter, I would have her on medication. So we set up another appointment with her EP, and it was almost like a divine intervention, because the doctor that we were supposed to see had an emergency, so we went in and we saw his partner. And it was a whole different scenario. He did the EKG and a stress test, and decided she did have LQTS. He gave us a script for genetic testing, Propranolol, and an AED. He told us she couldn’t play sports. At that time – in 2008 – we reached out to the SADS Foundation about genetic testing, and they said insurance didn’t cover it.

What challenges did you face after diagnosis?

I’m a mom on a mission, and it was important for me, as a parent, that children be able to get tested under insurance. So I went in front of Florida legislation to ask why genetic testing wasn’t approved. Now, Blue Cross Blue Shield – who we had at the time – will pay for genetic testing. Then my mission became AEDs. I went in front of legislation and tried to get that approved as well. While that wasn’t as successful as the approval for genetic testing, I did get an AED in the schools Madison attended.

Madison had a cardiac arrest while playing in the front yard at the age of 10. That’s when she got an ICD. But for two years, everywhere Madison went, we carried an AED. It had to be within three minutes of her classroom. I would make sure that the teachers knew how to operate it, what it sounds like, where to put the pads. Every year, I would offer to train her teachers. We opted for Madison not to participate in PE. A few years later, we changed physicians to one recommended by the SADS Foundation. Since she hadn’t had an event, she could participate in non-contact sports. Madison ended up trying out for cheerleading, and she did volleyball at the church.

What advice would you give to other parents who are sending their children to school for the first time?

In the summer, I would write a letter to the principal letting them know that Madison would be coming to them. And I outlined what she would need. Be an advocate for your child – because out of every student population, there are several with medical conditions, and you want there to be a plan in place.

I’d offer to teach up to 10 people CPR for free. The more people that were trained in CPR, the more people that were able to save Madison’s life. I’d tell them about other considerations – that if she became lightheaded or experienced chest pain or shortness of breath with any kind of exercise, that she should be allowed to sit down and be observed by the school nurse. I mentioned that the school should have at least one AED that should be no more than three minutes away from any part of the school and grounds. And then I put that Madison had an ICD and was on beta blockers, and the medications are quite protective, but do not prevent 100% of episodes. I put her activity restrictions  – that contact sports are prohibited, but Madison was allowed to try out for sports such as cheerleading, tennis, volleyball, and golf. I put that she needed to avoid medications that overly stimulate the heart or prolong the QT interval.

How has the SADS Foundation helped you and your family throughout your journey?

They’ve been very supportive of us on our journey. They’ve been very informative, and they have educated us in ways that are paramount to taking care of a child with an arrhythmia condition. I think their new webinars are just phenomenal. I feel indebted to SADS, and I continue to support their mission.