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A fresh call has gone out for screening to be
introduced for deadly heart conditions that affect fit and healthy young
people. EMMA JONES speaks to a mum and local councillor who has worked
tirelessly to raise awareness of the issue following the tragic death of her
son.
It was a Friday afternoon Paulette Smith will
never forget for all the wrong reasons. The Swansea Valley mum-of-two
didn't hurry home after finishing work at her temporary office job in Clydach.
Her husband, Roger, a Swansea Valley Councillor,
was away on business and there was no need to rush.
But when Paulette finally arrived back at her
house in Heol-y-Ffin, Trebanos, about 5.30pm on that fateful April day in
1999, her life changed for ever.
A police officer was waiting outside with the news
that her apparently healthy 24-year-old son, Christiaan, had been found
dead.
"I remember pulling up outside my house and my
neighbour come over to tell me the police had been there two or three times
looking for me," says Paulette.
I had passed a policeman parked at the side of the
road. He got out of the car and he asked me my name and whether Roger
was around. I said 'no, has he been in an accident?'
He said he hadn't and asked me if I had a son
called Christiaan Smith. I remember saying 'you can tell me anything,
but don't tell me he's dead."
Later, a post mortem examination would find that
the former Gorseinon College student had died of a hidden heart disorder,
myocarditis, which could have been picked up by a medical check.
Christiaan had must moved to Worcester in his job
as a sales administrator with cleaning products manufacturer Spontex.
Colleagues had raised the alarm when he failed to turn up for work on March
23. He was found dead at the foot of the stairs of is home.
Paulette was devastated but had to break the news
to daughter Rebecca and deal with the awful realisation that Roger was
travelling home from Stockport and planning to pay Christiann a visit en
route.
"We knew the house had been taped off by police so
in the end we had to tell him over the phone," says Paulette. "It must
have been a nightmare for him."
Worcestershire coroner Victor Round said it
appeared Christiaan had collapsed while trying to walk upstairs.
Consultant pathologist Paul Dunn said it appeared
Christiaan had collapsed while trying to walk upstairs.
Consultant pathologist Paul Dunn said death had
occurred as a result of malignant cardiac arrhythmia and lymphotic
myocarditis.
"Losing Christiaan was like a light going out,"
says Paulette.
"He was a fit, healthy and active young man.
"He was slim, he was a normal run-of-the-mill
24-year-old.
"We had no idea there was anything wrong. He
had come to visit us for a weekend and the only thing he had was flu
symptoms.
"There should be normal screening for heart
conditions for everyone, like they have in Italy and the US, not just
selective screening, because some people will always slip through the net."
Figures from the Office for National Statistics
indicate that 600 young people die suddenly ever year in the UK from sudden
cardiac death, sometimes referred to as SADS.
Paulette, aged 60 and Roger, aged 63, now champion
an awareness campaign aimed at ensuring all young people are given tests to
detect any such abnormalities.
Since Christiaan's death they have worked to raise
funds for Cardiac Risk in the Young, or CRY.
The charity claims 12 people lose their lives each
week across the UK from sudden cardiac death, which covers a number of
conditions, and has issued a postcard highlighting the statistic, featuring
a dozen victims, including Christiaan.
The charity says the 12 faces are just a
'snap-shot' of the problem and is working to engage support from as many MPs
as possible.
This month, hundreds of postcards will be
distributed by CRY families and supporters to people across Wales urging
them to send it back to their local MP.
It is hoped an influx of postcards will encourage
MPs to add their support to the campaign and join the Cardiac Risk in the
Young All Party Parliamentary Group.
The campaign has attracted support from Gower MP
Martin Caton as well as Swansea East MP Sian James.
But Clydach councillor Paulette wants to see more
politicians on board.
"If you could bottle grief and give it to every
politician and let them experience five minutes of it, we would not have to
do any of this but unfortunately we can't do that," she says.
As well as helping the awards campaign, Paulette
has also trained as a befriended and counsellor to help support other
parents and families affected by sudden cardiac death.
CRY has a network of individuals who have suffered
tragedy who have completed a counselling programme and are available to
support others through their loss.
"Nobody understands what it is like unless they
have lost a child themselves," adds Paulette.
"That support network is so important - it doesn't
matter if you call up and you're too upset to even speak. You've got
someone who knows what you're going through.
"It can be difficult because the counselling and
befriending is usually done over the phone and you don't have any facial
expressions to go on.
"The first questions I'm asked is 'how do I
cope?', especially it it's a parent on the other end of the phone.
"Most counsellors will say you shouldn't get into
discussing what has happened to you but we discussed it as a group and
decided it was important to answer these questions."
CRY founder and chief executive Alison Cox, MBE,
said the charity's aim was to offer heart testing to all young people in the
UK.
"Those who play sport are particularly at risk, if
they carry an undetected heart condition," she says.
"Eighty per cent of young people have no signs of
symptoms and so the only way to detect a potentially sinister cardiac
abnormality is by having a simple screening test,
"These are all treatable conditions and, if
diagnosed in time and with appropriate treatment, lives are saved.
Young people, with their whole lives ahead of them
are dying needlessly and their legacy of horrific suffering for those that
love them is truly unbearable."
Paulette says the suddenness of her son's death
made it difficult to deal with.
"You can't deal with it.
"Roger and I said that if either of us had died,
we would have coped far better than losing one of our children.
"As the years go by, you find different coping
methods but you can never come to terms with it because the law of nature
states parents should die before their children.
"It's unnatural and completely different to losing
a parent.
"You never, for a day or even a minute forget but
you go on because of the family you've got left."
Sudden cardiac death is an umbrella terms used
for the many different causes of cardiac arrest in young people.
It occurs due to an electrical malfunction
which disrupts the normal heart rhythm.
It can happen to anyone, even young athletes.
In about one in 20 cases of sudden cardiac
death, no recognised cause can be found - even after a post mortem
examination. This is then called Sudden Arrhythmic Death Syndrome
(SADS).
When an unexplained and unexpected sudden death
occurs, all immediate blood relatives should be evaluated by a cardiologist
to fin out if they have an inherited heart disease such as a channelopathy.
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