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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 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 cardiac\abnormalities 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.
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