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 purZed 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.
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