Killer that claims four young lives each week

Caroline Gard's son was just 17 when he died of a heart attack.  She now campaigns for cardiac screening to be available to all youngsters

Caroline Gard, 50, has endured every parent’s worst fear.  In 1997, when her son Andy was just 17, he died suddenly and without warning, alone in his bedroom.  “Andy was extremely fit and sporty,” she recalls.  “He had just finished his A levels and was planning his year out before university.  Two days before his 18^th birthday, he complained he felt unwell and had a pain in his chest but I said it was probably indigestion.  After all, he was a healthy teenager who didn’t smoke and was rarely ill. 

“When Andy came back from work at 4pm, our daughter Cathy, then 16, was at home and my husband Peter (a veterinary surgeon, now 50) and I were out playing tennis.  Andy had a game fixed at the same club at 6pm and went up to his room to get changed.  Half an hour later, Cathy answered to the front door to a friend of Andy’s.  When Andy didn’t respond to their shouts, they went up to his room and found him slumped across his bed.  They couldn’t revive him. 

“It’s almost impossible to describe the shock – it was both a physical pain and a numbness.  It was inconceivable that a young, fit person should drop dead.”

The terrifying truth is that every week, several young people drop dead in the UK.  Like Andy, they are victims of Sudden Cardiac Death Syndrome (SCD) – an umbrella term used for the many different causes of cardiac arrest in young people.  Casualties have included Manchester City and Cameroon midfielder Marc-Vivien Foe, who collapsed and died during an international match, aged just 28. 

The majority of such deaths are due to inherited forms of heart muscle disorder and irregular heartbeat.  Hypertrophic Cardiomyopathy (excessive thickening of the heart muscle) is the most common of these genetic conditions.  Recent research in the US showed that one in 500 people have it – which amounts to around 10,000 people in the UK.  Although it may cause shortness of breath, chest pain, palpitations and light-headedness or blackouts, sufferers often have no symptoms. 

Nobody knows exactly how many young people die as a result of SCD, but estimates suggest it claims the lives of between four and eight apparently healthy people under the age of 35 every week.  Alison Cox of Cardiac Risk in the Young (CRY) believes this figure is on the low side.  “Often their deaths are wrongly recorded as being due to epilepsy, an asthma attack or an accident, such as a car crash or drowning,” she argues. 

No specific cause was found for Andy’s cardiac arrest, and family screening failed to reveal any apparent genetic abnormalities.  “It was a relief to know that Cathy was clear,” says Caroline, a teacher from Colchester, Essex.  “But , in a strange way, I would rather I had some genetic fault, so at least we’d have an answer, a reason for Andy’s death.” 

She has channelled her grief into campaigning for the heart screening that might have saved her son’s life.  Caroline’s campaigning has now led to the creation of a heart screening clinic at Colchester General Hospital, the first of its kind in the UK.  The clinic, which will be held every two months, aims to detect undiagnosed heart conditions in people aged between 14 and 35, which, if left untreated, could lead to sudden death. 

It will be open to anyone – even without a GP referral – who wants confirmation of the state of their cardiac health. 

For £35, people who attend the clinic will be given an ECG (electrocardiogram), the results of which will be sent to Dr Sanjay Sharma, consultant cardiologist at The Lewisham Hospital, NHS Trust.  If an abnormality is found, more tests are offered, and it may be possible to take measures such as surgery or the fitting of a pacemaker to reduce a person’s risk of sudden death. 

Five other screening clinics are due to open across the UK later this year. 

But Caroline’s ultimate ambition is for routine screening to be offered to every 14-year-old in the country.  Earlier this year, the public health minister announced that an advisory group would be set up, with the aim of creating future standards of care for people affected by the condition. 

Sadly, it will come too late for the Gard family.  “I know the pain will never go away,” says Caroline.  “But when I think of Andy, I feel blessed to have had 17 years with him.”