Doctors wanted to switch off our daughter's life support - but somehow she survived. What's next for Charlie Gard?

The doctor's prognosis was grave:We may have to switch off your daughter's life support. 
   
     'No,' I shouted, leaping to my feet as  as the horror of those words hit home. 'You make her sound like a washing machine.'

     Twenty-five-year-old Amy had contracted E.coli 0157 - a deadly form of  food poisoning  - and her vital organs were  shutting down. She'd had an epileptic fit, her lungs were filling with water, her kidneys had failed and her contaminated blood was being regularly replaced.

     Fifteen years later, as the world waits to hear the fate of little Charlie Gard, I can still recall that heart-stopping moment when the doctor seemed to give up on our daughter's life.  I'm not proud of my reaction, for which I later apologised, but it's the reason why I agree with Charlie's anguished parents at a time when  doctors believe their child should be allowed to 'die with dignity.'

     These days it's easier for me to be impartial. While Great Ormond Street Hospital are being fiercely criticised for their role in the baby's future, I find myself thinking that the doctors 'are only doing their job.' But I also believe that all professionals, however experienced in their chosen field, can sometimes be wrong.

     Even if Amy did survive, her father and I were told, she would be 'a vegetable' with no quality of life at all. But then a miracle happened. She regained consciousness, her lungs improved and eventually she was taken off the ventilator.  Unable to walk or talk, however, she had to learn these skills all over again.

     I can't even begin to imagine how ill baby Charlie really is, or what the future holds for a child with  this type of mitochondrial disease. Maybe it would have been better if the child had died soon after birth thereby releasing the parents from the unimaginable dilemma they face now.

      All I know is that the skill of the NHS doctors saved Amy's life. Today she is happily married and holds down a demanding job.  Surely Charlie, and his heartbroken parents, deserve the same chance?

Amy featured in Woman magazine soon after her miraculous recovery.

WHEN LIPSTICK BECAME A LIFESAVER

The article I wrote for Woman magazine in 2002

When my daughter was on a life support machine in intensive care I used to visit her every day - sometimes even in the middle of the night. Arriving for a 3am visit after she'd been unconscious for two months, the nurse on duty said: You always wear bright lipstick when you arrive - though you know she can't see you. Why is that?'
'Because,' I replied, 'if she wakes up, I want her to see me how she knows me best. Happy and positive. Not with a pale face and fear in my eyes.'
Fourteen years later I am now writing a short story called The Red Lipstick. How lucky am I that she is alive to read it?

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