Undiagnosed heart issue kills 12 under-35s a week

Morag Lewis with a photo of her daughter Lynne, who died of a heart condition. Right, Lynne on her wedding day. Picture: Gordon Fraser
Morag Lewis with a photo of her daughter Lynne, who died of a heart condition. Right, Lynne on her wedding day. Picture: Gordon Fraser
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TRAGEDIES such as the one which claimed the life of young Jamie Skinner are so difficult to contemplate because we think they should be very rare.

But that couldn’t be further from the truth – in reality, 12 “fit and healthy” people under the age of 35 die every week from an undiagnosed cardiac condition.

Jamie was just 13 when he collapsed and died playing football last December, sending shockwaves through his relatives, local community, school and team-mates.

Now his family have set up a foundation in his name as they campaign to make defibrillators readily available in sports clubs and community centres across the Lothians, with volunteers fully trained to use the life-saving equipment.

“It’s terrifying when a fit and healthy young person dies suddenly,” says Dr Steven Cox, director of the screening programme at the charity Cardiac Risk in the Young (CRY).

“Often, they’re the fittest member of the team, and there’s no reason to think there’s anything wrong. It’s very scary for everyone else who’s witnessed it, or who know the family. It’s a horrendous tragedy and one that the family has to endure for the rest of their lives.”

The scenario Dr Cox describes is all too familiar to Jamie’s family, who remember the Liberton High pupil as a super-fit and athletic teenager, a rising star of the football field.

“People look to what can be done to prevent this happening to another family,” says Dr Cox. “The two things that can prevent these tragedies are more screening and readily available defibrillators.

“Once you have a cardiac arrest, you want to have a defibrillator there, and respond with CPR straight away.”

Because sudden cardiac deaths in young people are so shocking, they attract a great deal of attention, allowing medical professionals to communicate the vital messages about first aid training and the need for defibrillators.

But before it gets to the stage where swift medical intervention can mean a matter of life and death, charities such as CRY are looking for ways to increase early detection. And part of that is about understanding these hidden heart conditions: what can make a young person in their prime to collapse and die, from one second to the next?

The most common cause of sudden unexpected cardiac arrest are genetically inherited heart defects, passed from a parent on to their child. Half a million people in the UK have the faulty genes that cause undiagnosed cardiac conditions, according to British Heart Foundation senior cardiac nurse Chris Allen.

“When they have children they have up to a 50/50 chance of their child having the same condition. That could mean that they’re at very high risk of developing these conditions, so it’s quite a big problem,” says Ms Allen. “A lot of them are related to sudden cardiac death.”

For most young people with heart conditions, the first sign of a problem is when they collapse from a cardiac arrest. There can be a few hints, such as family history or chest pains and loss of consciousness during exercise, but 80 per cent of young people with an undiagnosed heart condition go from seemingly perfect health to a life and death situation that could kill them in minutes. It can also be difficult to identify the exact cause, even after a tragedy.

“With a lot of these conditions, it can actually be quite difficult to see in a post-mortem what’s caused that death,” says Ms Allen.

Once cardiac arrest occurs, it’s a game of chance that determines whether someone lives or dies. Victims of cardiac arrest have an 80 per cent potential survival rate, but only if people nearby begin CPR and use a defibrillator quickly. For every minute that passes with no intervention, that chance of survival drops by ten to 20 per cent.

“It’s whether you can bring that person back or not,” says Dr Cox. As in Jamie’s case, sport is often a trigger for cardiac arrest in patients with hidden conditions.

“You can be fit and healthy, you can perform at a very high level in sport, which is what we sometimes see in elite athletes,” says Dr Cox. “When you’re pushing yourself to the absolute limit, you need to make sure that the most important muscle in your body is absolutely fit and healthy to take that strain.”

Asked to describe how a healthy person can go from fighting fit to fighting for their life, Dr Cox compares it with getting your car serviced before a long journey.

“Probably the best description is what one of our cardiologists once told a patient. He said ‘You’re about to ride across the desert. If you take a car out with a problem in the engine, at some point the engine is going to go’.”

The only way to stop similar tragedies is cardiac screening. A simple examination hooked up to a heart monitor can reveal whether a young person is at risk from cardiac arrest, and one in 300 tests reveal some form of potentially life-threatening condition. If a heart problem is caught in time, sufferers can sometimes lead a relatively normal life.

Screening is recommended by European health authorities before a young person takes part in any organised sport, and in places like Italy, it is legally required.

CRY’s screening programme, which will make five trips to Scotland by the end of this year, tests 14,000 young people a year, and it doesn’t just focus on top levels of sport. “Most sudden deaths occur at a grassroots level,” says Dr Cox. “They occur in young people who have got big dreams, not elite athletes.”

Lynne died in her sleep at just 35 – after years of campaigning for screening

Mother-of-two Lynne Lewis went to bed nine years ago and never woke up.

At just 35 years old, she was one of the casualties of a heart condition which has claimed so many young lives.

Diagnosed at 17 with a hidden heart condition, Lynne, from Broxburn, became a campaigner for better awareness and care for undiagnosed heart problems before she herself became one of the many young victims of sudden cardiac death.

For her mother, Morag, dealing with her loss hasn’t gotten any easier.

“Her kids were 14 and 12,” she says. “That’s a very difficult time to lose your mother, but they’ve done brilliantly, actually.”

As a child, Lynne suffered from breathlessness, but Morag says doctors told her she had a recurring chest infection. “It wasn’t until she had been on holiday with her boyfriend, shortly before she got married. They were in Corfu, and she thought she was having a heart attack. She went for tests when she came back, and that’s when doctors found out she had restrictive cardiomyopathy,” Morag says.

“It didn’t stop her getting on with her life though, because she got married and had two children.”

Samantha will be 24 in October, and Cameron is 21.

Lynne had also planned to travel to Zambia to work with Aids orphans, but died a year before the trip was due to take place.

“She was an amazing person,” says Morag. “Everyone else came first, before herself. She was determined that she was going to have screening introduced for kids from age 15. She wanted it introduced in schools in West Lothian.”

Lynne’s campaign saw her personally take a heart monitor into 11 local schools, but ultimately funding ran out and the pilot wasn’t continued.

“I was devastated, actually, because they couldn’t provide the funding for it. They don’t have the knowledge, the determination and the guts that Lynne had.”

Morag now works with Cardiac Risk in the Young, spreading the message about the risks of sudden cardiac death.

“Many people are still under the impression that young people don’t die of heart attacks, which is nonsense. The statistics prove otherwise.”

LOSS: Morag Lewis with a photo of her daughter Lynne, who died of a heart condition. Right, Lynne on her wedding day. Picture: GORDON FRASER