A FAMILY are waiting to see how badly their little boy has been affected by a genetic condition which could kill him if he hears a sudden noise.

Jayson Hart was born with a rare heart condition called long QT syndrome, which could cause his heart to stop if he is startled or becomes too excited suddenly.

Nursery rhymes like Ring-a Ring-o’-Roses are out of the question and mum Kelley Hart, 25, from Hockley, has made sure nothing in her home will startle the one-yearold.

Squeaky toys and rattles are not allowed and even a door bell is banned. The family also relies on mobile phones which can be kept on silent.

Miss Hart, who also has long QT syndrome, had to have a pacemaker fitted at the age of 16.

Her condition, which is genetic, was discovered after she collapsed at a swimming pool at the age of ten. She had passed out in the water and had sunk to the bottom of the pool before being rescued. It took six months to diagnose.

When Jayson arrived, however, doctors tested him for the condition immediately.

Miss Hart said: “He had an ECG as soon as he was born and it was confirmed the next day, less than 24-hours after he arrived. It’s good we know early. It can go undetected for years and if a balloon suddenly pops they could die. People don’t know a lot about it because they think it is so rare.

“Jayson was wired up for a 24-hour ECG and we will go to London next week to find out if his condition has got worse.

I think this is probably what happened with me. It went undetected when I was very young then got worse and I collapsed.

“There are different versions of it. My mum has the gene, but doesn’t have the condition.”

Jayson’s condition is being controlled by medication, but he may have to have a pacemaker fitted as he grows older.

Miss Hart and her fiance, construction worker Greg Allen, 27, haven’t ruled out having another baby despite the chances of it being passed on.

Miss Hart said: “We would like another child. We don’t want Jayson growing up thinking he can’t do anything.

We just need to teach him what he can and can’t do and we have to do things slowly.”

“He just had a birthday party and he loved it. We did have balloons, but we made sure they were kept out of the reach of the children so they didn’t go pop.”

 

LONG QT syndrome is a rare and serious heart condition. It occurs in about one in 2,000 people.

The syndrome can cause fainting as well as an abnormally rapid heart rhythm, called arrhythmia, which happens when the electrical activity of the heart is disrupted.

These episodes may be provoked by any adrenalin rush, often caused by shock or a start. Even sudden changes in temperature could cause problems.

Not everyone with long QT syndrome will experience arrhythmia, but when it does happen it can be fatal.

The condition can be genetically inherited, but it can also be caused by some medications which patients might be taking for other medical conditions.