Helen Norris' Long QT syndrome

Helen Norris Long QT syndrome

Helen has two daughters; one has inherited her heart condition.

"I had no idea I was carrying a faulty gene that affected my heart. Or that I had a 50/50 chance of passing this condition on to my daughters.

After a diagnosis of Long QT

"I found out I had Long QT after my first pregnancy with Isobelle. Long QT is a condition that affects the electrics of the heart and can lead to sudden death.

"Looking at my baby Isobelle I was thinking she has inherited my partner Dave’s eyes. Everyone says she looks like Dave. The last thing I wanted was to have passed this heart condition on to her.

"Isobelle was diagnosed with this inherited heart condition when she was just a year old. Already, she has collapsed twice because of her heart condition.

"We have told Isobelle that she will take medicine and every now and then we’ll go to hospital and have the stickers, because that’s what she calls the ECG.

"I became pregnant with my second child Abigail. I knew there was the risk that she would also have the condition. It’s like what colour eyes or hair your child ends up with – you have no control over it.

"When Abigail was born, doctors did genetic tests straightaway and within two weeks the results came back negative which was a relief.

"As a family we have come to terms with this and we’ll learn to live with it. We have come a long way since I was diagnosed."

What is Long QT syndrome?

Long QT syndrome is the most common type of inherited heart rhythm disturbance and it occurs in about 1 in 2,000 people. It is usually genetically inherited but it can also be caused by other medical conditions or medication.

Other babies with Long QT

There are many babies living with inherited conditions like Long QT Syndrome:

Kelley's baby with Long QT

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We're leading research on inherited heart conditions in many ways. Whether it's on a pilot NHS screening program to help discover genetic markers of hypertrophic cardiomyopathy, pioneering improvements in pacemakers, or developing genetic testing methods for familial hypercholesterolaemia, we're fighting for every heartbeat. 

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