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AISHA
DODWELL, knew that something wasn’t right with her baby boy, but
the doctors seemed to disagree. She
had taken Rio to the GP on successive occasions, but was told he was
suffering from a viral infection that would get worse before it got better.
“He
looked so ill I decided I would take him to casualty, but as we stepped
out of the front door he suddenly stopped breathing” she recalled. “I
managed to resuscitate him for a few seconds, but then he stopped again
and the paramedics couldn’t save him.”
Aisha
now has another child, five-month-old Ella Rae.
Her grief is still overwhelming and there is the nagging
uncertainty about the real cause of Rio’s death.
A
post-mortem told them it was myocarditis, an inflammation of the heart
muscle, but they don’t know what caused it. “It doesn’t explain much
to us,” said Dodwell, from North London.
She
and Rio’s father, Graham Idahen, were yesterday attending an annual
support day organised by the charity Cardiac Risk in the Young for
families who have suddenly lost a child or relative to a heart defect.
The Observer was the first newspaper allowed in to talk to families
who had travelled from around Britain to find out more about their own
individual tragedies as well as talk to experts and counsellors.
As
many as eight people a week die unexpectedly from cardiac problems, but
the NHS is badly equipped to give the survivors the support and
information they need. Many of the bereaved spend months, if not years, trying to
find out the exact nature of the illness; they face a much tougher problem
attempting to ascertain whether their other children may be at risk.
There
is no national genetic testing centre in Britain for families most at risk
from sudden cardiac death. Many
of the genes have been detected, yet the NHS cannot offer any service to
test the survivors. The only
families who receive the tests are those where doctors, as part of their
research, can send blood samples to Denmark or Italy.
Very
lucky families make it to Professor Bill McKenna, one of the world’s
leading experts in sudden death syndrome, the name for a collection of
conditions which cause
cardiac death. Hypertrophic
cardiomyopathy, an unexplained thickening of the heart in young adults,
carries a 1 per cent annual risk of sudden death.
This genetically transmitted disease affects one in 500 adults and
is the commonest cause of sudden death in otherwise fit young people.
Yet,
despite the fact that there are effective treatments to prevent these
deaths, there is no targeted provision in the healthcare system to manage
this. Families with these
problems are not being systematically referred to specialist or properly
evaluated.
They
are not told that youngsters who enjoy a lot of sport are particularly at
risk.
“If
we could get to these families, we could forewarn them of the risk, then
look at treatments for them, such as drugs or pacemakers,” said McKenna
professor of cardiology at University College London, who runs a clinic
from the Heart Hospital.
He is
scathing of the government’s unwillingness to set up a proper system of
referral to experts and evaluation for families. “Its crazy that we’ve
detected some of these genes and can’t
test those families most at risk” he said.
At
yesterday’s meeting, organised by the charity CRY (Cardiac Risk in the
Young), families gathered to try and find out more about their own unusual
condition, Charlotte Cooke said that her mother and her two sisters all
appeared to carry the genes for the condition:
“There are 19 of us altogether, and we badly need to know whether
we carry the good or the bad genes, but as it stands, we can’t have
those tests done.”
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