I don’t know much, barely know anything, about the condition known as mitochondrial mutation. I’ve seen in the media what it has done to Charlie Gard, the young baby who a judge has decided should be allowed to die naturally. He is deaf, blind, can barely move and his irreversible brain damage. His parents want to take him to America for him to receive experimental treatment in the hope that his condition can be improved, that he need not die. I’d imagine most of us have an opinion about this. Some of us would support the parents’ wish, others believe the doctors are right. None of this changes anything. How could it because none of us are in the position of Charlie’s parents.
It is no good criticising the parents for wanting to keep their child alive and it is certainly not for us to judge them. If we were in the exact same condition, that would be different because we would know exactly how desperate they felt. But we cannot know how we would feel unless they we were in the same place.
We have done the “what ifs” and we have drawn our own conclusions which I don’t think are appropriate for me to share. We have weighed up the information, taken into account the love for a child and the quality of life he might enjoy, whether he is in pain and, thinking deeply about it, leaves you none the wiser as to what is right and what is wrong, certainly for someone else.
I feel desperately sorry for the doctors at Great Ormond Street. They work, after all, at a hospital which has a deserved world class reputation for treating sick children. They have made a clinical, evidence-based, honest judgement on what is best for that poor little boy and their conclusion, made with genuine compassion, was that it would be better for Charlie to die. It was a rational decision too, made in the cold light of day, not on the basis of the love for a child by his mum and dad. You might disagree with the professionals but you do not work at Great Ormond Street if you want to see children die for nothing.
I cannot possibly imagine how it would be to have a child in Charlie’s position. The pressure on the parents must be unbearable. Their decision to desperately seek unproven experimental treatment might seem irrational to sum but what else is there?
This is a conclusion-free blog. I am reasonable sure how I would feel in similar circumstances but I am not. I can argue about what is quality of life but my idea might not be the same as everybody else’s.
I support the right of people to end their lives when they are incurably ill when they have made an unqualified, person decision to do so. When it’s a young baby, other issues come into play.
Either way, the situation is unbearably sad and in the end no one, from Charlie’s family to medical professionals will be happy at the outcome. A baby is going to die. There can be fewer things more sad.