Magazine article The Spectator

Mixed Blessing

Magazine article The Spectator

Mixed Blessing

Article excerpt

WHEN Emmy Myerson was born in June 1991, everyone celebrated. Those 'weird, regular kicks', which began when her mother was seven months pregnant, had been brushed off as 'perfectly normal' by the doctors. Even if they had been investigated, there probably wasn't much anyone could have done for the Myerson family.

When Emmy was three months old, she had her first fit. The fits continued, with increasing severity. She spent nine months in hospital, wired up and subjected to every test and medical student in sight.

They still don't know what's wrong with Emmy, but one afternoon, in a tiny cubicle in Great Ormond Street Hospital, with no preamble, her parents were told that she would be profoundly brain-damaged and physically disabled for the rest of her life -- which wasn't expected to be long. They took her home. It was where they thought she should be, even though some people advised them to put her into care and wished them better luck next time. That was 11 years ago.

Emmy cannot walk or talk, she has extensive brain damage and severe epilepsy which cannot be controlled by drugs. Everything she eats must be pureed and she frequently needs suctioning to remove mucus from her throat. She is doubly incontinent. She can see and hear, though, and her smile can light up a room. Twenty years ago, like thousands of other children, Emmy would almost certainly have died.

Many more children like her are not only surviving but also living much longer - often into their teens and beyond; a success which owes much to the quality of neonatal care and medical technology, especially ventilation and tube-feeding. A generation ago, it would have been unthinkable for pre-term babies of fewer than 23 weeks to survive. Now the term given to such heroics - salvaging' - says much about the potential risks involved. About a quarter of babies born at 25 weeks' gestation have disabilities described as severe. The tough question is this: if doctors try so hard to help sick babies to survive, what support should their parents be offered when they take them home?

It is estimated that there are at least 100,000 children in Britain today with severe disabilities. When I tried to find a more accurate figure, I discovered that no one has attempted to discover the prevalence of severe disability in children since 1989. It is simply accepted that the number of such children has been growing for some years and will continue to grow. Most now live at home, and many of their parents are being denied basic help in the home, let alone access to specialist overnight respite care.

When I first met the Myersons last September, there were, according to their GP, `significant concerns' about their ability to cope. `They have reached breaking point he said. Until that point, everyone thought that they'd been coping very well. This only goes to show, according to Emmy's mother Tussie, how adept she had been at concealing what was going on behind the scenes.

The irony of their story is that this couple, who were merely asking for regular and reliable help but who were being offered what has often been an unreliable and frequently changing service, are now asking Oxfordshire County Council for one of the most expensive options of all - a place in a local residential school for severely disabled children costing L135,000 a year.

'You reach a point where you physically cannot care for her, when you physically haven't got the ability to get up for the 20th time when it's five o'clock in the morning and you haven't slept, and you start wondering whether you are actually able to give her the care she needs,' said Emmy's father, David. …

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