Living a full, active life with long QT syndrome

Julie and her family pose on a boat
Julie and her family

My older sister, Tanya, began having periodic fainting episodes when we were teenagers. The doctors were stumped, but my dad was determined to find out what was causing them. He knew it might mean the difference between life or death.

Years earlier, my mom had similar fainting spells, which her doctors had said were seizures. She had been diagnosed with epilepsy and was taking medication to help stop the episodes. But the “seizures” never stopped and Mom died in her sleep at age 33. Her autopsy was inconclusive, and we grew up never knowing what happened to her. Her older sister, my aunt, had also died suddenly and unexpectedly at age 19. Dad was not going to give up until he had an answer for my sister.

Know the warning signs

Left undiagnosed and untreated, long QT syndrome can cause sudden cardiac death. Early diagnosis and proper treatment can greatly reduce this risk. Talk with your pediatrician about screening for long QT syndrome if your child or someone in your family:  

> faints during exercise, emotional stress, or when hearing sudden, loud sounds
> has had an unexplained car accident, drowning, or near-drowning
> died of an unexplained cause before age 4

He took Tanya to specialist after specialist, looking for clues. Finally, in 1990, at age 15, she was diagnosed with long QT syndrome, a genetic heart condition that can cause fast, erratic heartbeats and can lead to sudden death. When the rest of our family was tested, we learned that about half of us have long QT syndrome, too.

Dad’s persistence and our early diagnosis was life-changing for our family. We learned that by taking beta blockers (a medicine to reduce heart rate and blood pressure) and seeing a cardiologist regularly, we could live normal lives, without any symptoms — and we have. After we were diagnosed and began treatment, my dad never restricted our activity or passions, even when they took us to the jungles of Belize or the rainforests of Thailand.

When I started having children of my own, I had them each tested for long QT syndrome shortly after birth. Two of my three sons — Cooper, age 11, and Cam, age 7 — have the condition and have been on beta blockers since they were infants. We try to keep the same positive outlook my dad had when we were growing up — allowing them to lead the same type of active lifestyle as their older brother, Turner, age 12. We encourage all of our boys to follow their interests, such as ski racing, lacrosse, and going to summer camp.

Julie and her family, who have long QT syndrome, pose while hiking

As parents, we sometimes stress over the “what ifs,” but know we are lucky to have the diagnosis, treatment plan, and medication, which greatly reduces the risks associated with long QT syndrome. Regular visits to Dr. Dominic Abrams and his team at the Inherited Cardiac Arrhythmia Program at Boston Children’s Hospital, gives us peace of mind that our sons’ hearts are healthy and that they can continue to safely participate in the activities they love.

Unfortunately, there are still many families out there unknowingly living with long QT syndrome. We hope that by sharing our story, it will inspire others who have risk factors for this condition to talk with their doctor about getting screened. The risk of sudden death is terrifying, but it’s preventable once diagnosed.

Learn more about the Inherited Cardiac Arrhythmia Program.