Sarah Barclay

Mixed blessing

Thousands of disabled babies are living longer than ever before, says Sarah Barclay. Why don't we pay for them

issue 25 January 2003

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.

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