By Becky Rose
In October of 2013, Dylan came to me and told me he wasn’t feeling well. He was the quarterback of his youth league football team. He lay down for a few minutes, and I noticed his extremities were shaking and he appeared to be asleep. We took him to his local pediatrician and learned that he had a seizure. They thought he had a virus of some sort. A few months later, February of 2014, Dylan presented with the same type of “seizure”. This time he was showing symptoms of being under the weather so we believed that to be the case.
Fast forward to July of 2014 when he had a fainting episode after I was running my blender. With his out-of-nowhere-seizures, I immediately phoned his pediatrician. She told me to bring him in right away because she wanted to run an EKG on him. Less than 24 hours later, we received a call from his pediatrician that he needed to see a cardiologist immediately. They had detected a prolonged QT interval on his EKG. They scheduled an appointment for us that same day.
Over the course of the next year I would learn things that I thought only happened to “sick looking” children.
The cardiologist believed Dylan’s prolonged QT interval was drug induced because of a medication he had been taking. We were advised to take him off the meds and return in 2 weeks. When we returned, the EKG was the same—no change. He had been diagnosed with a borderline prolong QT interval and was given the clear to return to sports.
Dylan remained out of sports but continued with symptoms of fainting. He experienced another faint while getting his hair cut. We were contacted by a nurse that was familiar with Long QT Syndrome, who told us to immediately get him to Detroit Children’s Hospital. The next few months are a blur to me. They did so much testing. We had a relentless EP (Electrophysiologist) Cardiologist. After months and months of testing, which included genetic testing, we received the diagnosis of Long QT Syndrome type 3. My son was diagnosed with not only a potentially fatal heart condition that caused sudden cardiac arrest but also with, of the three most common, the one that has the most fatal arrhythmias. They immediately started him on medication they said he would take for the rest of life, but if it did its job, it would stop a deadly arrhythmia.
Another few months went by and we were trying to piece together our new life. Dylan was removed from all sports, which had been his life. He lived and breathed sports, so it was so difficult for him. As his mother, all I could think was that my son had survived a condition kids are dying from all over the world. Sports were the least of my worries.
I had to think of his feelings too. He had another episode a few months later and had to go in for emergency surgery to have a ICD/Pacemaker implanted. His cardiologist said the medications weren’t working to his liking and he was afraid if we didn’t act now our son could die. We were told early on in his diagnosis that he may need an ICD someday; therefore it didn’t come as a complete shock to us. We didn’t expect it to be so soon, though. He was only 12 years old at the time.
We adjusted to our “new normal”. No sports ever again we were told. Dylan went through a range of emotions, from anger to sadness to depression. I didn’t realize what a toll it was taking on my son.
We eventually learned that I too had the condition and I too would receive an ICD/Pacemaker. I had had symptoms as a child and young adult and recently, but I was diagnosed with panic attacks. Long QT goes undiagnosed more often than most would think, and I was one of those cases.
Dylan is now 16 years old. He hasn’t had a symptom since he was implanted with his ICD/Pacemaker and given a medication change. I know his story seems sad and filled with little hope of living a life of quality, but his story isn’t over. We recently got word from his EP that he is being cleared to participate once again in sports. He wants to play basketball more than anything else. He says he has things to prove to himself and others. He’s still the same athletic kid he always was. That didn’t change. What changed is he can do it once again. He never gave up hope, even when I did. So much has changed since his diagnosis and in the world of Long QT Syndrome, and sports restrictions are being lifted on some individuals, like Dylan, that are well controlled.
If Dylan’s pediatrician had not known that a startle is a trigger for Long QT Syndrome, Dylan very likely would not be here today. My blender, which could have ended his life, actually saved his life, and then saved mine. Had he not been diagnosed, I would still have thought I was having panic attacks.
LQTS is a heart rhythm condition that can cause a fatal heart arrhythmia leading to sudden cardiac arrest in seemingly healthy children as well as adults. Too often a family is only made aware they carry the gene after the death of another family member. It can be detected from a simple EKG, and detection can help prevent death.
Dylan could have easily been a statistic; however his life was spared. I know that we are meant to bring awareness to others of the heart conditions stealing our youths long before it’s their time.