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A sinister adult
version of "cot death" claims up to four lives a week. Yet
a simple test might stop it, finds Margarette Driscol
Andrew Gard was a son of
whom anyone might have been proud. Kind,
clever, sporty – a good club-standard tennis player and stalwart of a
local hockey team – he was just beginning a gap year before university
when he was suddenly struck down. One
Sunday afternoon in July 1997, two days before his 18th
birthday, Andrew arrived home from his summer job at a toyshop, walked
upstairs to his bedroom and dropped dead.
Caroline and Peter,
Andrew’s parents (pictured with daughter Cathy) were out playing tennis.
They got back to find the blue light of an ambulance flashing
outside their house in Frinton-on-Sea, Essex, and inside a scene of barely
controlled panic. Two doctors
– personal friends, as it happened – were trying to revive Andrew.
“When they finally said
‘Nothing, he’s not responding’, we all looked at each other.
I had no idea anything like this could happen.
It was such a shock it was hard to take in,” said Caroline, a PE
teacher. “If you lose a
child it is always terrible, but if there is a terminal illness you have
some preparation. If it is an
accident you have some reason. With
this there was nothing, no explanation.
We were completely in the dark.”
Three months later, two
families from Surrey set off to spend the autumn half-term holiday at a
campsite in Hampshire. Ruth
Salisbury, 14, a “sparky, lively girl, so healthy she hardly ever saw a
doctor”, had been out walking that day and visited the junior disco with
her friend. They were sitting
at a wooden table when Ruth turned to her friend and said “I feel
dizzy”, and collapsed.
The friend’s mother, a
nurse, rushed over and tried to revive her.
A few minutes later an ambulance screamed up.
“Words can’t describe how it feels to see your daughter lying
there,” said her mother, Sylvia. “We’ve
all seen it on Casualty. There’s
panic, then in rushes a doctor with the paddles and it all turns out all
right. Real life isn’t like
that. The only comfort I can
draw is that it was so fast she didn’t suffer.
But the effect on the family has been indescribable.”
The families believe
Andrew and Ruth were victims of sudden death syndrome, a sudden killer
likened to infant cot death, in which apparently health young people
collapse without warning or die in their sleep; up to four are believed to
die in this manner in Britain each week.
Most cases involve a range of symptomless weaknesses of the heart,
but some are a complete mystery.
 Caroline Lucas, a
third-year student in biomedical sciences at Durham University, died just
such a death. There was no
trace of alcohol or drugs in her body and no sign of illness.
The pathologist who examined Caroline told the inquest into her
death, held a week ago in South Shields, that it was “entirely
possible” that it was a case of sudden death syndrome.
Caroline, 21, said
goodnight to her parents after revising for her exams and went to bed.
When her father Tony, a police officer, went to wake her the next
day she was dead. He said:
“It was a tragedy to loose her because she had so much ahead of her.
Everyone is still in shock.”
Could any of these deaths
been prevented? A growing
body of opinion says they could. Though
some of the deaths will always remain a mystery, most affect young
athletes who unwittingly overstress a weak heart.
It strikes at the brightest and best: Daniel Yorath, 15-year old
son of Terry Yorath, the former Wales football manager, died just after
being signed by Leeds United. Laura
Moss, 13, a promising international swimmer tipped for an Olympic medal,
collapsed in front of hundreds of people at a swimming gala.
In Italy, any young
person who plays sport at school team or club level must have a “fitness
certificate”, issued annually after a simple medical check including an
electrocardiogram (ECG). If one of the conditions that can cause sudden death is
detected it can be easily treated by drug therapy and giving up sport.
“At a statistical level
the numbers don’t look impressive compared to the thousands who die of
coronary artery disease in their seventies, but the impact of these deaths
is immeasurable,” said Professor Bill McKenna, an expert in
cardiomyopathy. “A sudden
death is so dramatic. One boy
I know of was playing football and died in front of all his team-mates.
His mother was screaming, every kid was traumatised.
I saw a father yesterday. His
wife couldn’t be here because she couldn’t fact it.
First her 17 year old daughter died suddenly, then her son.
The mother has lost all will to live.
And that is not an isolated case.
I see at least one a week. And
the vast majority are preventable.”
Alison Cox was horrified
to find that her son Steve suffered from ARVC, a ventricular disorder,
discovered when he was given an angiogram four years ago.
Steve, son of Mark Cox, a former world-ranked tennis player, had
just won a sports scholarship to the United States and dreamt of a
professional career as a tennis player.
He was forced to abandon his plans and stop sport immediately.
Alison had never heard of
sudden death syndrome: “I was so angry because it is our right to know
that tests can show up these problems.
It should be routine that at puberty – say when children are
given their BCG inoculation – that they are given an ECG.
We are prepared to do an MOT on our cars.
Why can’t we do the same for our kids?”
In response, she set up
Cardiac Risk in the Young (CRY), a charity based in Ashtead, Surrey, to
raise awareness of the condition and provide a focus for bereaved
families. The charity now
wants to launch a national testing programme and is holding a conference
at Wolverhampton University next week that will bring together eight
volunteer teams running pilot schemes around the country.
Although CRY would ideally like an NHS-backed scheme.
Cox is realistic enough
to know that with limited funds such a programme is unlikely in the near
future. Friends and
neighbours of the Gard family alone have raised £40,000 and she hopes
that some of sport’s rich governing bodies might contribute to a
screening programme.
The heart problems
involved in sudden death may be hereditary but very often – if nobody
has experienced childhood problems – the family may not even realise
they exist. The most common
develop during the teenage years when the body is growing rapidly and the
extra stress involved in sport can prove fatal.
Testing can pick up irregularities in the heartbeat that point to
this or other flaws.
The conditions are not
always symptomless, but often the warning signs are missed.
Dizziness or fainting in teenage girls may be dismissed as
“growing pains”, but they can be indicators that something is badly
wrong. Andrew Gard had
complained of feeling unwell the morning he died, but no so unwell that he
or his parents took much notice; he went to work as usual.
Ruth Salisbury’s death
remains a mystery. Searching
for reasons, doctors suggested that strobe lights at the disco she had
been to might have caused an epileptic fit, but her mother is unconvinced.
“She had fainted twice, once two years before and again 6 months
before she died. I thought it
was odd, but then you believe that young girls do faint from time to time.
I will never know if a test could have picked something up, but I
would have loved the chance to see if it could.
McKenna says that a
sudden death so traumatises a family that nobody wants to believe it could
happen again. Adrian Woodhead’s wife, Sarah, 28, died suddenly after
feeling unwell for a few days. Ironically,
they had both thought this a good sign as they were trying for a baby and
hoped she might be pregnant. Sarah’s
mother had died soon after her birth and it was only after his wife’s
death that Adrian wondered if there was a connection:
“We had always though that her mother died from pregnancy
complications. Her had
remarried and they never talked about it.”
“I
am sad because it’s such a waste. If
Sarah had been tested she could have modified her lifestyle – she used
to do weekly step-aerobics and 60-mile cycle rides – or had a pacemaker
or drugs. She’d still be
with me today.”
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