Beyond a Rare Heart Rhythm Disorder: Kayla’s Story

Kayla was 12 years old when she first realized something wasn’t right. She was playing in a middle school soccer game when she suddenly felt dizzy. Her vision narrowed. Then she fainted.

“I passed out for a couple of seconds,” Kayla says. “At first, nobody even noticed except my mom.”

Her mom not only noticed — she’d been recording the game and caught Kayla’s collapse on video. She ran onto the field to collect Kayla, and brought her to the closest emergency department in northeast Connecticut. Doctors ordered an EKG and diagnosed Long QT syndrome: a condition that disrupts the heart’s electrical system and can trigger dangerous rhythms without warning. Kayla had been born with it, but her symptoms had been so subtle until now that no one had noticed.

Hearing all this, Kayla was stunned. A heart disorder? She’d been an athlete for as long as she could remember.

“It didn’t feel real,” Kayla remembers. “It felt like I was living someone else’s life.”

Her doctors started her on medication and a device to monitor her heart rhythm. With that, she returned to school. She kept playing sports. She kept pushing herself.

Then, two years later, everything changed again.
 

During her first high school volleyball tryouts, Kayla collapsed after running laps. Her heart stopped. She wasn’t breathing. She started to turn blue.

“The first thing I remember is being in the ambulance,” Kayla says. She still has no memory of the morning or afternoon leading up to that point.

She was initially rushed to a local hospital in northeastern Connecticut. But when doctors there realized how serious her condition was, they transferred her by ambulance to Connecticut Children’s, where she could receive the pediatric specialty care she needed.

Kayla spent the next week in Connecticut Children’s pediatric cardiovascular intensive care unit (PCVICU), where her heart and overall health was closely monitored around the clock. Using a minimally invasive approach, the electrophysiology team  placed a dual-chamber ICD pacemaker in Kayla’s chest — a device designed to regulate her heart rate and deliver a lifesaving shock if a dangerous rhythm occurs. A broad team of pediatric heart specialists surrounded her, including cardiologists, cardiac nurses, and electrophysiology experts. Together, they established the right medication routine, educated Kayla and her family about her condition, and set up technology to monitor Kayla’s pacemaker remotely — no in-person visit required.

“Everybody on the team is fantastic — I tell everybody how much we love them,” says Kayla’s mom, Kerry. “The circumstances that brought us to Connecticut Children’s were terrifying. But once we were there, we knew Kayla was exactly where she needed to be.”
 

Living with an ICD as a teenager takes adjustment — physically, emotionally and socially. Connecticut Children’s multidisciplinary team provides this kind of support too, connecting families with resources, answering questions 24/7, and helping teens feel confident in managing their health.

“Our goal is to empower teens to live full, active lives,” says cardiac nurse Jamie Bopp, RN. “With the right guidance and support, most teens can return to school, sports and the activities that matter most to them. We‘re here to offer reassurance along the way.”

Kerry has witnessed this firsthand.

“The team has such a rapport with Kayla,” she says. “They really listen to her and talk to her as an equal. It makes a huge difference.”

With this support, Kayla recovered from surgery. She settled into a new health routine, taking medications three times a day. She adjusted to new limits: no caffeine, extra planning for travel and school days, and some sports restrictions.

“It can be frustrating,” she admits.

But in a major win, she was able to reclaim the two sports she loves best: volleyball and motocross. That’s because her care team took her goals seriously, worked closely with her on safety precautions, and eventually cleared her to return to both.

“I’m a good negotiator,” Kayla says.

There was another major factor: her ICD. With a device that can immediately shock her heart back into rhythm, Kayla is significantly safer in every setting, including during sports. It’s already proven vital.
 

During a volleyball game her sophomore year, Kayla collapsed again. This time, her ICD delivered a shock that restored her heart rhythm, similar to a defibrillator.

“It felt like I got kicked in the chest,” Kayla says. “That’s how I knew something serious had happened.”

She returned to Connecticut Children’s for evaluation — shaken, but alive. The device had done exactly what it was designed to do.

“She’s alive because of it,” Kerry says.

Kayla has experienced additional episodes since — each one managed swiftly by her ICD and her care team. Each time, she has returned to school, to practice, to racing, and to the rhythm of everyday life. Each time, she has shown grit and perspective beyond her years.

“Kayla has been incredibly brave and resilient throughout her medical journey,” says cardiac nurse Jamie. “Every time I encounter her, she is a bright, shining light — determined not to let her diagnosis stand in the way of living life to its fullest.”

“She’s extraordinary,” agrees Kerry.
 

Kayla knows Long QT syndrome will always be part of her life; she’s open about it with teachers, coaches and friends. But she doesn’t let it discourage her or slow her down. She believes she owes that to herself, and to others.

“I have such a village of supporters — my family, my friends, my doctors, my teachers, my mentors,” Kayla says. “I’m so grateful for them. They’re a big reason I try so hard.”

So are the other young patients she’s met at Connecticut Children’s.

“I know kids in hospital beds who are wishing for just a fraction of the opportunities I get,” Kayla says. “For them, I try to do as much as I can, and with a positive attitude. There’s no way to change my diagnosis — but I can make the best of what I’ve been given.”