I’m a mom to three girls. When my second daughter, Kadence, was six months old, I took her to a pediatrician for a routine well-child check and immunizations. And when he was doing the initial examination, he noticed that her heart rate was low, but didn’t say anything to me at the time. His expectation was that her heart rate would increase after immunization, but it didn’t. He told me that he was concerned and he wanted to have an EKG done, but she needed to see a pediatric cardiologist.
We live in the Bahamas. The Bahamas are broken up into islands, and my daughters and I live on Grand Bahama, and there are no pediatric specialists. The only pediatric cardiologist in the region – not just the Bahamas, the whole region – is in Nassau.
The doctor sent my daughter’s EKG to the pediatric cardiologist. He wanted us to bring Kadence over as soon as possible, because he thought her EKG showed a long QT interval, and that she had Long QT Syndrome. He wanted to put her immediately on beta blockers.
Kadence was on beta blockers for about a year and a half before her doctor said that her QT interval had regulated, and so he felt comfortable taking her off beta blockers. In 2019, we had a huge hurricane – Hurricane Dorian, which was a category 5, and completely wrecked our area. During that time, Kadence started to complain of chest pains, fast heart rate, and shortness of breath. I took her to the emergency room, which was being run out of a tent. The pediatrician on call there thought the QT was prolonged again, so we went back to the cardiologist, and he wasn’t concerned. But I felt uncomfortable – I felt like there was still more to it.
I started to look online, and find online communities. I reached out to someone who had a blog about his daughter with LQTS, who lived in the UK. And he was the first person to ever ask me what type of LQTS my daughter had. That was my first time hearing that there were different types, or that genetic testing was important.
I started digging a little deeper. And that’s when I came across the SADS Foundation. A few months ago, sitting in one of the webinars, I asked a question and got in touch with the staff at the SADS Foundation to get the ball rolling and really find out what type she has.
I do have another daughter who has epilepsy. And in 2018, I found out through genetic testing in the US that she has a genetic mutation. It really brought home how important it is for kids to have this genetic testing, which is not available in the Bahamas.
Always advocate for your child – you may not be a medical professional, but you know your child, and you know what’s normal and what’s not normal. And keep pushing, even though sometimes the first doctor might not listen – find someone else. But don’t give up. It’s really important that you advocate for your child.
The SADS Foundation has provided me with so much information. Everyone there has reached out to me individually to try and help me. They’re setting me up with a doctor in Miami, and are constantly checking to make sure everything’s okay. They’re speaking to me individually, and in the Bahamas, where we have limited resources on certain medical conditions, including LQTS, that’s so helpful.
Does someone in your family need a referral to an expert physician? Check out the SADS Foundation’s Physician Referral Network here.