A word of warning: if you are not familiar with Charlie Gard’s story, this is horribly upsetting.
In brief: Charlie was born in August 2016 with a rare genetic disorder, which means that the mitochondria in his cells do not work. Since September, he has been on a respirator. He has irreversible brain damage. His parents, Connie Yates and Chris Gard, wanted him to take part in experimental treatment in the US, and began raising money for this, but this led to an astonishing legal dispute, where Charlie’s doctors applied to the High Court for Charlie to be allowed to die with dignity.
This week, Charlie’s parents lost their High Court battle. They have also been unsuccessful in their bid to take him home to pass away. These details on their own will certainly make you feel sad, but they might also make you angry. Try to rein in the anger for a moment, if you can.
Charlie was never going to get any better. His condition is genetic, and terminal. He has been in Great Ormond Street Hospital (GOSH) for most of his life, treated by the best paediatric specialists in the nation. He is in pain, but he cannot move and cannot breathe for himself. When the doctors at GOSH gave his parents the devastating news that there was nothing more that could be done, and that Charlie’s life support should be switched off in order to put an end to his suffering, this wasn’t evidence of them giving up, or facing a problem beyond their skills, or deciding that some lives aren’t ‘cost effective’. And it certainly wasn’t evidence of politics deciding who gets to live, and who gets to die. Yes, a judge ruled in favour of the hospital’s decision, but even then, that wasn’t the judge deciding who lives and who dies. The horrible truth was that Charlie was going to die anyway.
I cannot imagine how awful this must be for Charlie’s parents, whose desperate fight for their son has dominated news in the UK for weeks. It seems that everyone has an opinion on this matter, and most will cast Charlie’s parents as either heroically defiant of traditional medical authority, or tragically in denial, cruelly ignorant of Charlie’s pain. I’m not going to pass a judgment either way; I will just say that they love their son dearly and do not want to let him go. Whether trying to keep up the fight to save him was rational or not, it is entirely understandable. Who wouldn’t do all that was in their power to save someone they love?
Charlie’s parents were offered hope by an American neurologist, Dr Hirano, who has been developing an experimental treatment that he thought might be able to help. But this was false hope, perhaps the cruelest thing to do in this situation. Dr Hirano had not seen Charlie, or even read his notes before offering this treatment, which never had the power to cure Charlie; at best it might have prolonged his life for a short time. Charlie’s case was far too advanced for any form of successful treatment. Hirano has since admitted that ‘it is very unlikely that he would benefit from this treatment.’ GOSH’s lawyer, Katie Gollop QC also pointed out that Hirano ‘retains a financial interest in some of the NBT compounds that he proposed prescribing for Charlie.’ This was not a neutral offer of assistance; it was an advertising campaign.
Pro-life campaigners weighed in. They made Charlie’s story about the medical profession having no respect for the sanctity of life, which is especially offensive knowing the work that GOSH does with terribly poorly children. There are protesters outside the hospital, shouting death threats and abuse at medical professionals as they arrive for work. Those professionals spend their days saving lives and are spat on outside the hospital because a child in their care is terminally ill. These doctors and nurses, who dedicate their lives to outstanding paediatric care, have been framed as baby murderers.
The Pope weighed in, tweeting: ‘To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to us all.’ Again, to accuse GOSH of not defending human life is grossly offensive. And as horrible as it may be to admit, Charlie wasn’t just ‘wounded’; he couldn’t be healed. The Pope offered to have Charlie transferred to Pediatric Hospital Bambino Gesu in Rome, and also sent a doctor to review Charlie’s case. This is also rather insulting to GOSH; it is an implied accusation that not only have Charlie’s doctors missed something, but that they are not fulfilling their duty of love to humanity.
This is where many of you will become more angry: as the media circus grew, it attracted the attention of Donald Trump. He weighed in too. He tweeted, ‘If we can help little Charlie Gard, as per our friends in the UK and the Pope, we would be delighted to do so.’ This is probably one of the more reasonable tweets from Trump on the surface, but it is ideologically loaded. Perhaps he was looking at the headline only, and felt what many of us did — the urge to save this baby. But I find that hard to believe. What this case represented for Trump was an opportunity to make a point about universal health care. It was an opportunity to show off the greatness of American healthcare, and present the NHS as shoddy and immoral in comparison. It was an opportunity to frighten his voters with a vision of universal health care that isn’t just immoral, it’s murderous, and would kill their babies, while glossing over the fact that as Hirano’s treatment was something that he would have profited from, he had a financial incentive to treat Charlie rather than a purely moral one.
I don’t blame GOSH or Charlie’s parents for any of this media circus. They were all fighting for what they perceived to be Charlie’s best interests. It is horrible that those perceptions were in opposition and that a judge had to make a ruling on the matter. My anger is directed at those who sought to gain from this situation; those who saw a story about a family tragedy and saw an opportunity. That isn’t what happens with universal health care. This opportunism is what happens when there is a profit to be made, or an agenda to promote.
At the heart of this, if you cut through the ethical debates and the vitriol, is a family. Two devastated parents, and their terminally ill child. It’s time to remember that.
Charlie is expected to pass away in the next couple of days; I hope that his last days are quiet, peaceful and free from any further political opportunism. I hope that his parents have the space and privacy they need to mourn their son. And I hope that GOSH can continue their brilliant work without further attacks on their reputation.
You can find out more information about Charlie’s story here.
You can find out more about GOSH and/or make a donation to the hospital here.