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UK takes action on SD in babies


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  • UK takes action on SD in babies

    HEADLINE: Parents call for action on sudden baby deaths

    BYLINE: Jo Revill: Health Editor


    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
    specialists 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. 'It's crazy that we've
    detected some of these genes and can't test those families most at risk,' he

    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.'
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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