Test EVERY teenager for the deadly heart defect that stole our lovely Alex in her sleep
THE anguished parents of a schoolgirl who died in her sleep from an undiagnosed heart condition have hit out at health chiefs’ refusal to introduce cardiac screening for all young people.
Their call has been backed by one of Britain’s leading specialists in the field, who claimed hundreds of lives would be saved each year by blanket testing of all 12- to 39-year-olds.
John and Heather Reid have spoken for the first time since the death of their 16-year-old daughter Alexandra from a suspected sudden cardiac arrhythmia – a problem with the electrical activity of the heart that can be picked up in a simple electrocardiogram (ECG) test.
‘To me there’s no question that screening should occur,’ said Mrs Reid. ‘It’s such a waste of these young people’s lives.’
Renowned cardiologist Professor Sanjay Sharma, medical director for the Virgin London Marathon and Professor of Cardiology at St George’s University Hospital, agreed, saying: ‘Each week 12 young people in the UK die suddenly from a heart condition they didn’t know they had. The vast majority of those – more than 80 per cent – won’t have had any symptoms, but the same proportion would have been picked up through a three-minute ECG.’ During the safe, painless ECG test, leads from a machine are attached to skin on the arms, legs and chest using adhesive patches. These pick up signals from the heart and send information to the electrocardiograph which then prints a reading on a paper strip or on a screen. Research has shown one in 500 people have hypertrophic cardiomyopathy, one of the most common causes of sudden cardiac death – the description given when someone dies because their heart simply stops beating. This and more unusual heart diseases, such as Brugada syndrome and Long QT syndrome, which can also lead to sudden cardiac death, can be picked up by an ECG.
In one in five cases the exact cause can’t be established. While it was discovered in a post mortem examination that Alexandra had a defect that meant her right coronary artery was kinked, it is believed she died from a sudden cardiac arrhythmia.
She was a talented swimmer, dancer and netball player who had her sights set on medical school. Her GCSE results – six A*s and four As – were released just a few weeks after her death in June 2012.
Her GP father John, 55, and mother Heather, 55, a lecturer in physiotherapy at Nottingham University, live in Nottingham with Alexandra’s younger sister, Jenn.
Alexandra complained of feeling tired in the days before her death but her family assumed this was down to her being in the midst of exams. ‘The day she passed away was going to be her last GCSE. It was German and she really disliked it, although she went on to get an A*,’ says Mrs Reid.
‘At bedtime she couldn’t sleep. She said, “I can’t settle, Mum.” I told her, just think, after tomorrow you never have to utter a word of German again if you don’t want to, and we had a laugh about it. I said to her, “I love you” and I kissed her on the forehead. She said, “I love you too, Mummy.” That was the last thing we said to each other.’ Mr Reid found
Alexandra dead in her bed early the following morning. Her parents performed CPR in vain until paramedics arrived and told them to stop.
Mrs Reid said: ‘It was at that point I knew she’d gone. It was a feeling I can’t describe – confusion and complete disbelief. How could my fit and healthy daughter have died?’
Last year the UK’s National Screening Committee – the body that advises Ministers and the NHS on all aspects of population screening – refused to even consider implementing a national screening programme for sudden cardiac death of people between 12 and 39.
The International Olympic Committee, The American Heart Association, and some European countries recommend screening for athletic youngsters, as intense exercise can increase the risks of sudden cardiac death-causing conditions.
Professor Sharma said: ‘In Italy, screening has led to a 90 per cent reduction in sudden cardiac death among this group.’
Critics claim widespread testing could do more harm than good, with a significant number of people showing as false positives for a cardiac condition they don’t have and limited treatment options for those who are found to have a problem.
DR CARL Heneghan, Professor of Evidence-Based Medicine at Oxford University, said: ‘A death like this affecting a young person is always devastating. The danger is that it creates an emotional impact that transcends the health benefits of screening.
‘We need to look rationally at the evidence. The incidence of sudden cardiac death in countries with no mandatory screening, such as the US and France, is no different from the most recently reported data from Italy, suggesting the observed reduction in Italy is not the result of screening. What’s more, in Italy, two per cent of those screened are then disqualified from active participation in sport. This would create an awful lot of damage to otherwise well people.’
For Alexandra’s family, raising awareness of cardiac risk among young people continues to be a priority. In September they will run the Great North Run to raise funds for charity Cardiac Risk in the Young (CRY) – five days before what would have been her 21st birthday.
Mrs Reid said: ‘We’ll never know for sure whether screening would have picked up Alex’s problem.
‘I like to think something could have been done.
‘If just one life is saved from the screening we’ve funded, our efforts will have been worthwhile.’
To donate, visit justgiving.com and search for ‘Heather Reid, Great North Run’.