Abrielle was two when diagnosed with LQTS Type 3

Abrielle

In 2014, when two-year-old Abrielle went in for a checkup, doctors told her parents she was the “picture of health”. Two weeks later, she suffered a sudden cardiac arrest at home on a Saturday morning. Fortunately, her father was able to perform CPR for the 10 minutes it took for emergency personnel to arrive.

After multiple attempts, they were able to cardio-convert her heart. Abrielle then spent three weeks in the hospital recovering her motor and language skills and waiting for her heart to stabilize. During this time, she was diagnosed with Long QT Syndrome Type 3 and was implanted with an implantable cardioverter-defibrillator (ICD). The diagnosis was understandably quite traumatic for her parents, as Abrielle, being just two years old, had difficulty communicating her feelings about the experience.

It has now been nine years since Abrielle’s initial cardiac arrest and her Long QT Syndrome diagnosis. Abrielle's family is grateful for the excellent care provided by Dr. Michael Ackerman, Abrielle's physician, which has helped her maintain a relatively stable condition despite being a high-risk patient due to her long QT interval. When Abrielle was diagnosed, her family delved deep into researching the condition, which is how they discovered Dr. Ackerman, a world-renowned specialist in Long QT Syndrome.

Although Abrielle has been relatively stable, there have been scary moments for the family since the initial diagnosis. This past February, Abrielle fainted and experienced multiple episodes of ventricular fibrillation while sledding with her siblings.

"It was a stark reminder to us of the reality of the serious nature of her heart condition. She is and appears to be completely healthy on the outside – and yet, her heart arrhythmia disorder can show up completely out of the blue, with no warning and with serious consequences," says Abrielle's mother, Angela.

Abrielle's family manages her condition by keeping her on a strict medication schedule, taking medicine at three specific intervals throughout the day. This schedule enables Abrielle to lead an otherwise active, normal, and happy life as a young girl. She enjoys exploring the outdoors, playing with her friends, reading books, attending dance classes, and swimming as often as possible in the family pool. Her message for those newly diagnosed with Long QT Syndrome is to not be afraid.

"I hope that by sharing my story, others can learn about Long QT and know that people like me who have it, can be happy and healthy. I know that having Long QT means my heart is different, but I look at it that it makes me special, and it makes me extra happy and thankful to be alive."

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Rob’s not stopping for LQTS Type 2