Kelley's baby with Long QT

"I found out my baby had inherited my heart condition the day he was born"

“The day Jayson was born doctors did an ECG of his heart. When they got the results they started him on beta blockers. He was one day old.

Inherited Long QT syndrome

 

 

 

"Jayson has inherited my heart condition, called Long QT syndrome, which could cause his heart to stop suddenly one day.

"When I was ten I lost consciousness during a swimming lesson. I sank to the bottom of the pool and had to be rescued by my classmates.

"That’s how I found out I had an inherited heart condition.

"I’ve been on beta blockers since then but even though I was taking medicine, when I was twelve I lost consciousness again and fell downstairs. I was sixteen when I started passing out and it could be up to fifteen times a day.

"It was a scary experience.

"At that point doctors said I needed to have an ICD (implantable cardioverter defibrillator) fitted.

"All through my pregnancy I knew I had a 50/50 chance of passing this on to my baby. Although I expected it, it was terrifying finding out.

"He is still very tiny and I give him the beta blocker medicine three times a day.

"The doctors said they can’t plan ahead because every case is different. We’ve just got to take every day as it comes.

"But when Jayson’s older I’m hoping he’ll pick up on the fact that I get on with my life and learn not to let it stop him doing what he loves.”

What is Long QT syndrome?

Long QT syndrome, or LQTS, occurs in 1 in 2,000 people and is the most common inherited heart rhythm disturbance. There are two different types of Long QT syndrome and the symptoms of the condition can depend on varying factors such as the type, your age, etc.

Others children with Long QT

Many parents and children are struggling with the news that their child has an inherited heart condition:

Helen Norris' baby with Long QT

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