Charlie Gard is dying. He's been dying since the moment he was conceived. He has mitochondrial deletion syndrome. To put it very simply, the batteries in his cells don't work. There is no treatment for his condition: it's extremely rare and where diseases are rare, you have to improvise as you go along. He has been in Great Ormond Street Hospital for months, kept alive by machines, because keeping him alive is all they can do for him. My family has personal experience with GOSH's genetics team and you'll find no criticism of them here. Where there is hope, they will do whatever they can.
But it's hard, so hard to accept there's no hope, especially in a child so small. His parents have gone to every single court in this land and in Europe, begging for a chance to send Charlie to the US for experimental treatment: experimental treatment that even the doctor advocating it admits won't save him. They have blamed GOSH's workplace culture, saying GOSH refuse to admit they may be wrong about his chances, his prognosis. Their case has gone, to use a rather grim medical term, viral. Donald Trump has stuck his oar in. So has the Pope.
Today, the case goes back to court, to be tried on fresh evidence that Charlie is growing. The hospital say he is not growing. His parents say he is. The judge says he wants proof, and will base his judgement on that proof.
There are several contentious points here:
Is it ethical to send Charlie to the USA for treatment? In the UK, candidates for experimental treatment must be able to consent, they must be kept safe, there must be a fair chance of a good outcome. Charlie cannot consent. There is almost zero chance of a good outcome. The reason GOSH do not want him to take part in the trial is because it will make no difference. The reason the US doctor wants him in the trial is because people with mtDNA conditions this severe rarely survive - he's a useful little guinea pig. The key ethic in medicine is DO NO HARM - do nothing that will make the patient worse. Now, Charlie's ultimate outcome is death whichever way you look at it, but there is real suffering implicated in making a tiny baby travel nine hours across the Atlantic, in intensive care, for futile treatment which may kill him in the USA meaning his parents will have to repatriate his body, far away from their network of support. If he survives, he will come home and continue to require high dependency care for the rest of his life. It is traumatic enough to have a child in GOSH, which is often miles away from the family home. To have that child on a different continent is many times more traumatic.
The Rights of Charlie vs The Rights of his Parents
I have seen a lot (A LOT) of people insist that Charlie's parents have the right to decide whatever they want for their child. This is, fortunately, absolute bollocks in law and in practice, to prevent child abuse. As soon as a child is born, they have rights in law to be protected by the state in cases where a parent could do them harm. As described above, the move to send Charlie to the US can easily be considered causing harm to him. No parent is capable of making objective medical decisions about their child, which is why ethics panels exist, which is why doctors try to work with parents to do what is fair to the child. This is why Charlie has his own advocate in court. His parents are fighting for his life at all costs. GOSH are fighting to end that life. Charlie is neither old enough nor capable of having a voice. He gets no say in this.
But his parents, his poor parents. They have the most difficult time of all. Not only are they fighting to save their child, however fruitlessly, they are fighting the state on this matter. When you have a disabled child, however small the disability is, you have to fight and advocate and it feels like the entire system is set out to be as obstructive and difficult as possible. The NHS is an enormously potent and powerful institution. Of course his parents want to take Charlie to the US. Of course they want to exhaust every single possibility. How will they live with themselves if they give up? Every parent would do the same. There may be an unreality about their hopes and ambitions, but he's their baby and they're with him every day. What else can they do but fight?
The Interference of Donald Trump
Urgghh, this man. In case you know nothing of US healthcare, they don't have an NHS. All their healthcare runs on insurance, to a capitalist model that doesn't really work (as previously discussed, it's very difficult to run a capitalist health market when the ultimate outcome of the consumer is death - no profit). Obama brought in an Affordable Healthcare Act (known as Obamacare) to try and implement universal healthcare provision. Trump and the Republicans FUCKING HATE the ACA. Not only are they dismantling it, they are also attempting to bring in legislation to give insurers more power to refuse healthcare to people with preexisting conditions - preexisting conditions like having previously taken contraception, having been pregnant, having been raped. The Republicans do not believe that healthcare is a right.
So, it's somewhat ironic to have both Trump and his VP, Mike Pence, shout that Charlie should be allowed to go there for medical treatment. It is likely that they are going to use this as a stick to beat the NHS with, and since the NHS is one of the bargaining chips that Theresa May has admitted she is prepared to use to establish a trade deal with the US, WE SHOULD BE CONCERNED.
The Interference of the Pope
The Roman Catholic church believe in the inviolable right to life. No abortion. No euthanasia. You would think that the Pope would accept God's divine will in this sort of situation. Apparently not.
BUT THEY HAVE RAISED OVER A MILLION POUNDS!?!! It's not about money. The NHS regularly invest millions in treatment for dying children to improve their quality of life - essentially throwing that money away since it's not curative. But it works both ways. You cannot throw money at illness and hope it goes away (although, money sure helps).
The shift in media's tone has moved away from SHOULD he be allowed to have this treatment to WHY WON'T ANYONE SAVE HIM? There seems to be a total disconnect of the reality of Charlie's condition. If the court rules he can go to the US, he has the treatment, the treatment somehow works a bit and he comes home, he will STILL be terribly ill and disabled for life.
Sometimes, medicine can't help, and that's the real problem here. It's not about citizenship, the perceived failings of the NHS, the monopoly of GOSH, the court system, money, or human rights. It's about the fact that medicine is unlikely to help this child and that is a blow to the heart of us all. Our culture has a faith in medicine, that one day it will destroy death itself, and this sort of case reminds us that medicine is fallible, some illness is written on the genes, and any of us could have a child like Charlie.