The parents of terminally ill baby Charlie Gard have spent precious time away from his bedside this week in the High Court, fighting the doctors at Great Ormond Street who want to turn off their child’s life support system and let him die.
Charlie’s rare genetic condition is progressive and incurable and at eight months old he is now blind, deaf and has extensive brain damage, as well as unable to breathe without a ventilator.
I can understand his parents’ rage and their determination to fight for their child, because my nephew was brain-damaged and trapped in a coma last year from which he never recovered. The sight of a loved one unable to respond, wired up to a battery of machinery is absolutely heartbreaking. You feel powerless.
These parents say they can’t bear to lose their son, but isn’t it kinder to accept the inevitable and allow the little boy to spend his last days quietly and calmly, rather than drag him halfway around the world to undergo what doctors call “a purely experimental process” which might only “prolong the process of dying”?
Medical experts are against the baby being moved, as is the independent guardian who has been appointed to act in his interests. Yes, parental love knows no boundaries, but in the end Mum and Dad have to think what is kindest for the child, and that means putting themselves second.
These court battles have no winners, and doctors are placed in an invidious position, particularly when- as seems to have happened in this case- trust in their ability to treat a patient is being questioned. Sometimes – as in the case of cancer patient Ashya King – parents are proved right.
Ashya was removed from hospital in the UK in 2014 when doctors had ruled him too sick to travel, secretly taken to Spain where his parents were briefly arrested, and eventually received proton therapy treatment in Prague.
Three years later, Ashya is recovered and back at school. But for every story like his, there are hundreds more where, tragically, children die. I hope that trust in the doctors at Great Ormond Street is not eroded by this case.