Maxine Frith: The right to a decent life for everyone

Provision is so poor that parents struggle even to obtain a wheelchair for their child
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The Independent Online

Charlotte Wyatt will celebrate her third birthday on Saturday - a landmark that doctors said she would never reach. This is the little girl who has been at the centre of the right-to-life debate almost from the moment she was born, three months premature and severely physically and mentally handicapped.

Two years ago, the High Court ruled that, contrary to the deeply-held wishes of her parents, Charlotte should not be resuscitated if she stopped breathing. The decision was based on evidence from those treating her that she had only a 1 per cent chance of surviving beyond her first birthday; that her life was a mere existence, dominated by pain and holding "no joy or fulfilment".

Today, even the most pessimistic of those doctors admits that Charlotte has a life that features some degree of joy and fulfilment. She responds happily to music and enjoys games such as "round and round the garden, like a teddy bear" being played on her hands. While she still depends on oxygen and medication tubes for her survival, she can see and hear and may, say experts, improve still further if given the stimulation of a home environment. Her life expectancy is now measured in years, rather than weeks.

But Charlotte's home remains the hospital where she was born - a place that everyone accepts is no longer best for her. Her parents, Darren and Debbie, separated earlier this year, their marriage, like so many others in similar situations, unable to bear the strain of having a severely disabled child.

Debbie is now an infrequent visitor to Charlotte, saying that she worries about the impact on her other three young children of the little girl's still inevitable premature death. Darren says he wants to care for Charlotte at his home, but has been refused the support he needs to deal with her disabilities. Social workers are trying to find a foster family for Charlotte, but have yet to find a suitable carer.

Now, some of the very same commentators who argued for Charlotte's right to life alongside Mr and Mrs Wyatt two years ago are turning their guns on the couple, muttering about the costs to the taxpayer of the legal case and her continuing care. The couple's separation and individual inability to look after their daughter, it is implied, shows that maybe doctors were right in the first place.

Despite the fact that Charlotte has achieved everything her parents argued in court that they believed she was capable of (survival, happiness, the ability simply to enjoy the sensation of fresh air on her skin), it is Mr and Mrs Wyatt who are at the receiving end of the "we told you so" criticisms - not the doctors who have been proved so wrong in their original predictions.

Whether or not one agrees with the Wyatts, the doctors or indeed the decision of the High Court, to castigate the parents for the continued survival of their daughter seems positively inhumane. What we should be looking at is how the state helps to support such severely disabled children and their families.

Provision in this area is so poor that parents struggle to even obtain a wheelchair for their child, let alone someone to help put them to bed at night or offer occasional respite care. A survey by the Downing Street Strategy Unit of 3,000 parents of disabled children found that 77 per cent could not access basic equipment such as beds and hoists.

The charity Mencap warns that thousands of people are at breaking point over the lack of financial and emotional support available for those in situations similar to the Wyatts'. There is not enough funding, services are disjointed and the system is too inflexible, according to a report published earlier this month by the Birth Defects Foundation. Yet this scandal only hits headlines when a desperate parent decides to end their child's life rather than struggle against the odds and ends up in court accused of murder.

Is it any surprise that the Wyatts are reluctant to take sole care of their daughter without guarantees of what sort of support they will get? And why is foster care being touted as the only option for Charlotte? There is currently a shortfall of 10,000 foster carers across Britain, meaning that children are shunted from one temporary parent to another, often every few months.

Launching the Government's White Paper on children in care last week, the Education Secretary, Alan Johnson, admitted that the state makes an abysmal corporate parent, even when children are in foster care as opposed to a residential home.

Very few foster parents have the expertise and training to look after a child as severely disabled as Charlotte, so instead she remains in a hospital bed. There are no easy answers to such a situation, but what the White Paper proposes is a fundamental overhaul of how we care for the most vulnerable children. More should be done, it says, to offer support to families within their existing situations, providing joined-up packages that give children and parents the support to stay together rather than forcing them into the care system.

Charlotte's future remains uncertain; a court order is still in place which gives doctors the right not to put her on a ventilator if she suffers a respiratory collapse. But after defying the experts' odds and overcoming so much, surely now more than ever this little girl is owed the right to a life rather than a mere existence?

m.frith@independent.co.uk

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