Save your child from sudden death

Every week eight British teenagers die for no apparent reason.  But it's possible to spot those at risk - and save their lives

Schoolgirl Ruth Salisbury was watching a video with friends when she complained of feeling dizzy.  Seconds later she was dead – the victim of a little-known phenomenon called Sudden Death Syndrome. 

Ruth, who was 14, had been described as ‘super-fit’ and had represented her county at martial arts. 

At first no one had any inkling of the cause of her death.  A post mortem revealed nothing unusual.  Then several months later her mum Sylvia read a newspaper report about mysterious deaths among teenagers and young adults and everything fell into place. 

The article described Long QT Syndrome (LQTS), the most common of a range of potentially fatal heart conditions in people under the age of 35.  It affects the electrical functioning of the heart, disturbing the rhythm and causing dizziness, palpitations, blackouts and – occasionally – even sudden death. 

The condition can only be diagnosed with an electrocardiogram (ECG) when the sufferer is alive.  So a post mortem won’t detect it and it will then be impossible to discover the cause of death. 

“When I read that, I knew Ruth had to be one of those cases,” says Sylvia, 47, from Redruth in Cornwall. 

In fact, experts now believe as many as eight apparently healthy young people die each week in the UK from undetected cardiac problems. 

Although LQTS is not evident after death, it is often hereditary and there is a one-in-two chance that an immediate relative of a victim, such as a parent or sibling, will also have the condition. 

Experts can now prove it was almost certainly present in the victim by screening relatives. 

Consultant cardiologist Dr Sanjay Sharma says sudden death syndrome is the term used when a death has occurred "within six to 12 hours of previously normal health when the pathologist can find no cause." 

It’s also known as Adult Cot Death. 

“A range of conditions release abnormal proteins within the heart muscle that can seriously affect the electricity of the heart,” Dr Sharma explains. 

“I don’t want to alarm people and I don’t think a normal, healthy person should be worried. 

“However, it’s important that more people are aware that these things can happen, what the symptoms are and what can be done.” 

Most of these deaths occur in adolescents aged 14 to 18 – the average age of victims is 17 – probably because the teen years are generally when we are most active. 

Many victims show no symptoms but there may be warning signs. 

While LQTS often runs in families, there’s evidence that sudden death can occur where there’s no family history.  Intense emotion, loud noises and exercise are all known triggers, and it’s no coincidence that many of those who suffer sudden death syndrome are fit, young athletes. 

Following Ruth’s death, Sylvia, her husband Time, 49, and their other child, Tom, now 18, faced the agony of waiting to find out if they were also at risk.  Thankfully ECG screening gave them the all-clear. 

As the Salisburys learned more about Sudden Death Syndrome, they realised there had been warning signs during the last three years of Ruth’s life. 

They had seemed insignificant at the time, but if the pattern had been noticed it could have provided a vital clue to the condition that eventually killed her. 

“One time we were told she had slipped at the side of a swimming pool and fallen, but now we think she probably had a blackout, says Tim. 

“Another time, she fell at a disco and blacked out, but everyone assumed she’d just twisted over on her platform shoes. 

“Exercise and, in the second case, excitement, are two known triggers of the condition. 

“We want other parents to be aware of the symptoms so that they can get their child checked if there are any warning signs.  We’ve lost our daughter and we don’t want that to happen to anyone else.” 

In fact, Sudden Death Syndrome is preventable.  ECG scans can diagnose the conditions that cause it.  Treatments include drugs such as beta-blockers, which block the effects of exercise and adrenalin on the heart. 

In more severe cases, surgery is needed to fit an internal cardiac defibrillator (ICD).  This can deliver an electric shock to reset the rhythm of the heart. 

Sufferers are also advised to avoid competitive sports and strenuous exercise.

At the moment only people with symptoms or who have had an unexplained cardiac death under 35 in the family can have an ECG on the NHS.  But Cardiac Risk in the Young (CRY), a charity set up to raise awareness of Sudden Death Syndrome, is campaigning for the Government to introduce routine ECG screening for all teenagers before they leave school. 

Chief executive Alison Cox says: “It’s my dream that all children should have an ECG at 16.  As well as identifying those at risk it will help to raise awareness of sudden cardiac deaths and provide parents with information about the symptoms to look out for.” 

CRY offers telephone counselling with trained counsellors who have lost a loved one in similar circumstances.  It also has a surgery support group for young people who have had an ICD fitted or other surgical procedures to prevent sudden death.