Brandon had six “fainting” episodes before the age of ten before he learned that he has Long QT Syndrome, a condition that affects the heart’s rhythm – and that it runs in his family. Today, Brandon is returning to college to learn engineering so he can work on the devices that he’s had implanted in his heart since he was just a little boy.
Six “faints” before the age of ten
The first two times Brandon lost consciousness as a child, he was at the swimming pool. “I thought I was drowning both times,” he says. “Nobody even thought that it could be heart-related.” The following three episodes happened while he was at school; the next, when he was running to a friend’s house to play.
“By the age of nine or ten, we were going to so many doctors,” says Brandon. Finally, after multiple EKGs and lots of consults, Brandon was diagnosed with Long QT Syndrome (LQTS), a disturbance of the heart’s electrical system that can cause dangerous episodes in which the heart beats in an irregular pattern. This is what was causing Brandon to lose consciousness.
Because LQTS is genetic, and is often passed down from a family member, Brandon’s whole family got heart testing and genetic testing to see if anyone else was affected. Brandon’s mother, who’d never had a symptom, turned out to have passed the condition to Brandon; his older brother, who was fifteen at the time, also tested positive. Both were put on beta blockers – a medication that can regulate the heart rhythm.
“When I was in high school, I was sitting in class when I suddenly heard beeping coming from my chest; it was my ICD, telling me that something was wrong.”
A new heart device – and new challenges
Because of Brandon’s many episodes of dangerous heart rhythms, his doctor recommended that he have a device called an ICD implanted in his chest – which can shock the heart if it detects dangerous rhythms. Brandon was in fifth grade when he received his first ICD.
“For about six or seven years, things went smoothly,” says Brandon. “But when I was in high school, I was sitting in class when I suddenly heard beeping coming from my chest; it was my ICD, telling me that something was wrong.”
It turned out that one of the wires that feeds into the heart – called a lead – had broken. This can be one of the risks of receiving a device at a young age, as Brandon did.
During his second ICD surgery, he was introduced to a new cardiologist – who’s been his doctor now for twelve years. She used a laser to extract the broken lead. He recently had a third surgery due to another lead break. Because of his past lead issues, his doctor implanted a device that doesn’t control his heartbeat (in other words, a device without a pacemaker) – but also doesn’t have leads, so that Brandon doesn’t have to undergo another extraction in the future.
“My dad – who’s a Marine, very stoic – was crying. He said to me, ‘You’re supposed to bury me – I’m not supposed to bury you.’ That was the first time it felt real and serious for me.”
“Rare diseases can be very isolating”
As a kid, Brandon’s episodes – and the restrictions they led to – felt very isolating.
“I had to skip recess and sit with the nurse instead,” he says. “When you’re just a kid, and you don’t know what’s going on, that’s really hard. I remember the last time I had an episode, my dad – who’s a Marine, very stoic – was crying. He said to me, ‘You’re supposed to bury me – I’m not supposed to bury you.’ That was the first time it felt real and serious for me.”
Even after his diagnosis, Brandon still faced restrictions that made him feel isolated from other kids. He was constantly being scouted by coaches – but had to tell them that he wasn’t allowed to play sports. He was exempted from PE – and, as a result, missed picture day twice in high school. “I was in the hospital all the time, and absolutely hated it,” he says.
During his senior year of high school, Brandon was given an assignment to write about what he wanted to do with his life. He immediately thought about what he’d been through as a child – and knew he wanted to help others like him. He interviewed his cardiologist for that project, and started as a premed major in college.
Brandon ended up jumping out of college and into the workforce, working in 911 dispatch. But recently, he’s decided to go back to school and get an engineering degree – and hopes to work one day on the devices that have been in his chest for over a decade.
“Don’t let this diagnosis limit you from living your life.”
For those who’ve recently been diagnosed with LQTS or a similar condition, Brandon emphasizes the power of reframing your diagnosis – and concentrating on what you can do, instead of what you can’t do.
“I realized that I still had my arms, legs, and a good head on my shoulders,” he says. “My heart condition doesn’t limit me from everything I love, and isn’t the end of the world. Instead of playing sports, I got into music. Don’t let this diagnosis limit you from living your life.”