Ten years ago, just two days before his 18th birthday, Andrew Gard went upstairs to get changed for a game of tennis. When he failed to return, his 16-year-old sister Cathy went to investigate; she found Andrew – a supremely fit county hockey player who had barely had a day’s sickness in his life – dead.
A post mortem found he had suffered a heart attack, but to this day the cause has never been satisfactorily explained to his mother, Caroline. All she knows is that Andrew was one of around eight young people who die every week in the UK from undetected heart conditions.
Since his death she had devoted her energy to trying to stop other young people being cheated out of decades of life in the way that Andre3w was.
Caroline, who lives in Frinton, is the east of England divisional representative for the charity Cardiac Risk in the Young (CRY).
Through her efforts and those of her supporters, a heart screening clinic for children and young adults aged 14 – 35 has recently celebrated its third anniversary in Colchester.
The CRY clinic, which is held every other month with the permission of Essex Rivers Healthcare NHS Trust at the town’s hospital, was the first of its kind in the country. It is now being used as a model for clinics elsewhere.
Money raised locally will allow even more children to be reached from September, when every 14, 15 and 16-year-old at school in north east Essex will be offered a screening test. If it is successful the initiative could be rolled out across the county.
“The peak time, we know, for deaths seem to be in the late teens,” said Caroline.
“Sometimes it is younger children, even as young as nine, and some are affected much later, in their 30s. If you have a heart condition and it is found you can have things done that will minimise the risk.
” had no reason to have my son tested but if I had, he may have still been around today. I will never know.
“Getting involved with CRY has definitely helped with the grief of losing Andrew,” said Caroline. “When you lose a child for any reason you feel you haven’t managed to protect them. It is not the natural order of things. Trying to stop this happening to others helps me because I feel I have not lost my son for nothing. I try to think that Andrew had 18 great years. There are other people who lose their children a lot younger.”
Andrew died on July 27, 1997, two days before his 18th birthday7.
He had just finished his A levels at Colchester Boys’ Grammar School and was awaiting the results. His future was bright. He planned to work for three months and was hoping to go abroad before taking up a place at university to study economics.
“He was very fit and healthy and played lots of sport,” said Caroline. “He played county hockey, tennis and cricket and although he was not an elite sportsman he was very active. These are the sort of people who tend to be affected: not couch potatoes, obese people, smokers or drinkers; just ordinary kids enjoying their lives.
“He had not been ill. He had always been fit and healthy because we are quite a sporty family – I don’t think the doctor even knew who he was.
“The morning that he died was a Sunday. He had a weekend job that he was using to save money. That day he got out of bed, rushed his breakfast and rushed out. He did complain of a pain in his cheat but – and I beat myself up about this for a long while – I said ‘well, you have rushed your breakfast and you’ve probably got indigestion.”
“With hindsight there was probably something going on at that moment which I did not know about.
“He came back from work and went upstairs to get changed because he was playing tennis later. But he did not come back down. My daughter, who was 16, went upstairs to find him and he was dead. She had a friend with her and they called the ambulance and tried resuscitation but it was too late.
“When these things happen it is very instantaneous and even if someone had been with him when it happened there might not have been anything that could have been done. I have since discovered there are about 14 different heart conditions that can cause this; some are rare, others less so.”
The post mortem could not pinpoint what, exactly, had killed Andrew, only that he had damage indicative of a heart attack. But doctors did not know what had caused it to happen. Caroline says that in the 10 years since Andrew’s death knowledge and procedures have improved and she thinks, had it happened how, more investigation would have been done to find an exact cause.
“After Andrew died we were in limbo for the next six months. Nobody really knew what had happened. We knew it was something to do with his heart but no-one could explain why,. About six months later somebody gave me an article about another boy who had died playing football and at the bottom of the article was the CRY number.
“I spoke to someone there who said, ‘You are not alone, I will send you information and telephone you back in a week.’
Through CRY I got in touch with someone who could help me emotionally. Before that I felt so isolated. My husband and my daughter all suffered this loss but it is very individual as well.”
Caroline was shocked when she read the information sent to her by CRY. “This happens more often that most people realise,” she said. “There are at least eight deaths like Andrew’s a week. It is more than meningitis.”
She believes the Government doesn’t try to do more about it because, although eight deaths a week represents eight tragedies too many, it is a tiny proportion of the overall numbers of heart-related deaths. “It won’t affect the statistics if the Government tries to do something about these eight young people dying every week.”
Occasionally, young people who are at risk do get warning signs, such as palpitations, breathlessness or sudden fainting, and Caroline says they should go to their GP and ask to be referred for testing.
“Often these people are misdiagnosed with epilepsy but it could be their heart and this should be checked out” she said.
And she warned that because some heart conditions can be genetic, siblings should be tested in any families where a young person has suffered a sudden death.
“I have been talking to a family in Wales whose 20-year-old daughter died in November and before they found out what had killed her, their 21-year-old son died as well.”
CRY was started by Alison Cox, the wife of the former British tennis player Mark Cox. Their son, Steve, was an aspiring tennis professional and went to America to train. But while there, he was found to have an undiagnosed heart condition and sent home. He had to give up his dreams of following in his father’s footsteps and now works for the charity founded by his mother in 1995.
The pioneering clinics in Essex began after Caroline started raising money for CRY and was able to have a couple of scanning events at a school.
Staff from Colchester Hospital helped at those one-of days and said they would like to do more. the rest, as they say, is history.
For the hugely subsidised cost of £35, each teenager or young adult who is screened at the clinics has an electrocardiogram (ECG), which takes only 10 minutes and involves taping electrical leads from a machine to the chest, legs and arms, and making a record of the heart’s activity. It is a totally pain-free procedure.
The ECG and a questionnaire filled in by everyone who is screened are sent to cardiologists in London who have particular expertise in young sudden cardiac death (YSCD).
In cases of serious abnormalities it might be possible to take measures, such as surgery or the fitting of a specialised pacemaker, to reduce the likelihood of YSCD.
About 400 young people have been tested in Colchester over the past three years. So far, no major problems have been detected but a few people have been successfully treated for minor abnormalities.
Caroline says the value of screening is proven in countries where it is undertaken routinely. For instance, anyone who wants to join a sports club in Italy has a yearly ECG and death rates have fallen considerably as a result.
Routine screening in the UK seems a far off dream at the moment, but it is the goal to which Caroline aspires.
the next clinic at Colchester is on September 29. To find out more, visit the CRY website at http://www.c-r-y.org.uk and click on ‘screening’ or call 0207 423 7200.
YOUNG SUDDEN CARDIAC DEATHS (YSCD)
High-profile YSCD victims have included Mark-Vivien Foe, the former Manchester City and Cameroon midfielder, who died during an international match in 2003, aged 28, and Daniel Yorath, brother of TV presenter Gabby Logan and son of former international footballer Terry Yorath, who died at the age of 15.
Sudden cardiac death is an umbrella term used for the many different causes of cardiac arrest in young people. It is defined as an event that is non-traumatic, non-violent, unexpected and resulting from sudden cardiac arrest within six hours of previously witness normal health. Conditions include thickening or abnormal structure of the heart muscle and irregularities of the electrical impulses that upset the natural rhythm of the heart.
Cardiac Risk in the Young raises awareness of the symptoms of cardiac abnormalities and conditi9on which can lead to sudden cardiac death while emphasising the considerable amount that can be done to help young people who have been diagnosed as having a cardiac abnormality.. CRY is also supporting medical research into sudden cardiac death and sudden death syndrome and offering counselling and support to families affected by sudden cardiac death. CRY brings ECG testing and cardiac screening events to the general public to detect cardiacabnormalities and supplies much needed medical equipment to clinics around the UK in order to detect cardiac abnormalities and prevent sudden cardiac death.
The most common cause of sudden death in young people in Hypertrophic Cardiomyoptahy (HCM) – which in simple terms is called a ‘chunky heat muscle heart disorder. It is a relatively uncommon heart disease, although is estimated that 109,000 people in the United Kingdom have the condition.
Arrhythmogenic Right Ventrical Cardiomyopathy (ARVC) is probably the second most co9mmon cause of unexpected sudden death in the young. It is characterised by a progressive replacement of normal right ventricular muscles cells by fibrous tissues and fat.
