The case of Charlie Gard – to state the obvious – is tragic and complicated, medically, legally and ethically. There is no possible happy ending to this story – but there does have to be an ending.
Of course, no one would want to be in Charlie’s parents’ situation and it is too easy for those of us who have never been there to pass judgment on them and their care for their son.
But while the particular circumstances of this (and every) case might be unique, sadly parents are caught in this dilemma every day and in every country of the world.
Watching the BBC news, I was alarmed to see his parents presenting a petition to sway medical and legal opinion…not because it is wrong for people to offer support, but because we all know, if we are honest, that the bulk of those signatures will be a purely emotional response, probably in total ignorance of the facts (useful guide to those here). Just because so many well-meaning people would like things to turn out well doesn’t mean that they will.
I’m sure there isn’t a person on this Earth who wouldn’t like to be able to wave a magic wand and make Charlie better. And I’m sure too that Connie Yates and Chris Gard believe they have their son’s best interests at heart. But there is no magic wand and he is never going to get better. That is not my opinion – the doctor who says he wants to treat him in the US says so too. Even he – a doctor who has never dealt with a case like Charlie’s – admits the brain damage is irreversible. It seems the best that can be offered is therapy. Certainly not a cure.
Charlie’s mother says she is convinced that if he had this US “experimental” treatment (which Great Ormond Street could have given him, but decided wouldn’t help), he could live a normal life. One hesitates to use the word “deluded” in such tragic circumstances (and if I do, it in no way implies criticism), but this brings to mind those not-so-rare cases of bereaved parents who defiantly insist their baby is still alive while holding the cold body of their child in their arms.
Charlie’s parents seem incapable of seeing the truth.
What has struck me when hearing Ms Yates speak is that she sounds very mentally fragile. Understandably, perhaps, given what she is going through. But, speaking as a therapist, it is clear that she and her partner are going to need a lot of help once the initial media storm has died down.
They are certainly not helped by the interventions of politicians, religious leaders and doctors who want to use this case for their own purposes.
Seeing a publicity-seeking US evangelical pastor praying openly in the street further lays bare the nature of the battle that is now being fought – a battle that goes WAY beyond the wellbeing of one very damaged baby.
To those who bring their “pro-life” religious agenda to this intensely personal case, I would remind them: Charlie is being kept alive by human scientific and medical intervention. If they really believe Charlie is “a gift from god”, as I have seen him described, perhaps they would be happy to see how long he survives if handed over to the care of god instead of the doctors? I’m sure all compassionate Christians would want to end Charlie’s ordeal, not prolong it.
The parents want to take Charlie to America, but it has been pointed out that there is a major difference in philosophy between UK and US healthcare: the former puts the interest of the patient first, while the latter will continue with medical interventions until there is no funding left to do so (put more crudely: keep going as long as there is money to be made). This might be unfair, I don’t know. But one does have to wonder if this American doctor would be quite so interested without the £1.3 million that has been raised by crowdfunding.
Ironically, Great Ormond Street doctors have been called “Nazis” by many on social media for wanting to “kill” Charlie by denying him his right to be used as a medical experiment. These are the doctors who have spent so much time keeping him alive – yet we remember Nazi doctors not for the care they gave to children but for the futile experiments they carried out on them.
A friend reminded me today of the case of Charlotte Wyatt, who was born very premature in 2003 and whose parents fought a similar court battle to keep her alive.
My friend said: “The parents won the legal battle but soon separated and gave their daughter up for adoption because they couldn’t cope with having a child who would never be able to do anything for herself. She has the mind of a 12-week-old baby and needs constant 24-hour care, which costs tens of thousands of pounds every year.
“You see, it was never about poor Charlotte, it was about two angry parents who didn’t want to be advised or told what to do. I believe Charlotte is still alive, being looked after by foster parents, care workers and medical professionals.”
I would hesitate to apply the word “selfish” to two distressed parents who are desperately doing all they can in what they see as their son’s best interests.
But it really is time to put Charlie first.
Even if he did survive, he wouldn’t be “baby Charlie” for much longer. Even if his parents really were prepared to devote themselves 24 hours a day to his care, that wouldn’t be enough. And even if it was enough, they won’t be around to do it forever.
I shall leave the last word to a friend and former colleague, Lisa Salmon, who once had to make that difficult decision herself: “When our first baby was on a life support machine and the doctors told us he wouldn’t be able to breathe unaided and was brain-damaged, we didn’t question their judgment and the machine was switched off and he died in our arms.
“Much as we would have loved him to stay with us, we knew there was no prospect of a good life for him.
“I think Charlie’s parents are putting their own desperate need not to let him go above what’s best for him. I think we did what was best for our son, and they should face the horrible reality of the situation and do what’s best for Charlie, which is to just let him drift away peacefully.”