The sad case of Charlie Gard, as so often in similar situations, brought out the worst in Christians. Here we have an example of what secularist and devout Roman Catholic Andrew Sullivan terms “Christianism“. (Christianism is analogous with Islamism. )
At birth on 4 August 2016, Charlie was, in appearance, just like every other baby. However, a rare genetic condition was soon to rob him of the ability to see, breathe, move, or anything else on his own. It’s known as infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). It causes progressive muscle weakness and brain damage.
By October Charlie Gard was a permanent patient in Great Ormond Street hospital (GOSH) in London, a world leader in the treatment of such conditions. The life of this tiny baby was now one of pain and suffering. His parents, of course, were suffering right along with their son. Their own agony is unimaginable. However, for me, Charlie should take priority over his parents in this situation.
That Charlie’s needs should come first was also the opinion of his doctors and, ultimately, the British courts. Their opinion was that this tiny baby should not have to continue to suffer. The decision of everyone with a responsibility for Charlie, except his parents, was that his agony must end.
Chris Gard and Connie Yates on their son, Charlie Gard
This video came out at the end of May at the height of the battle between Charlie’s parents and the doctors caring for him at GOSH.
There are several aspects of this heartbreaking video that I find troubling. However, there’s one that is more troubling than any other. That is the experimental treatment on offer from a US doctor.
US Doctor Offers Experimental Treatment
Without examining Charlie, or even reading all his medical records, a US doctor says he can help. Neurologist Professor Michio Hirano’s experimental treatment, nucleoside therapy has, he says, a 10% chance of improving Charlie’s condition. Note that he said “improving” not curing.
But as many parents would in the same situation, Charlie’s parents think the treatment has a chance of giving their son his life back, especially when given the evidence shown in the video. They see a little girl with a similar condition to their son riding a bicycle after a year of treatment.
To me, to let Charlie Gard’s parent’s believe this was the ultimate cruelty.
The girl in the video does not have the same condition as Charlie Gard, and all the doctors who know Charlie’s case consider that the experimental treatment on offer will only increase his suffering.
GOSH is not just any hospital, and Charlie’s doctors are not just any doctors. Both are world-renowned in their treatment of children with mitochondrial disease. They know what they are talking about.
Chris Gard and Connie Yates though, are desperate to believe the experimental treatment will help their son. Of course they sincerely believe they’re doing the right thing by pursuing this.
Naturally, despite the advice of doctors that the brain and other damage this poor baby already has is irreversible, Charlie’s parents go for it. Human beings aren’t very good at judging risk at the best of times, and our lack in this area is even worse when they involve the emotions of a suffering baby.
The treatment is expensive, and Charlie would have to go to the US, so they appeal for help. The donations flow in like a tsunami and soon they have £1.3 million. Charlie’s doctors, whose first duty is to their patient, don’t want him to go though. Their experience tells them that it will just increase and prolong the agony of both their patient and his parents. The courts step in and side with the doctors.
But, by going public with their fight, Chris Gard and Connie Yates attract the attention of the Christianists. And they provide the really ugly side of this tragedy. We’ll get to that later.
Professor Lord Robert Winston
For those who aren’t familiar with Professor Robert Winston, here’s the Wikipedia description of his pedigree:
FMedSci FRSA FRCP FRCOG FREng … professor, medical doctor, scientist, television presenter and Labour Party politician.
Winston’s main specialty as a scientist is genetics. Many will recognize him from his excellent TV documentary series Child of Our Time and The Human Body.
Here’s what he has to say on the case:
You can read more of his comments here, and I urge you to do so.
His comments follow the intervention of Donald Trump and the Pope on the side of keeping Charlie alive to go on suffering.
The Vatican Flip-Flops
Initially the Vatican was on the side of not dragging Charlie off to the US for treatment that would not help him. Their first statement as per reporting in The Guardian:
… when the Vatican’s bioethics advisory panel had noted the need to do whatever helps a patient but also to sometimes accept the limits of medicine.
In a statement on Friday [30 June 2017], Archbishop Vincenzo Paglia of the Pontifical Academy of Life, said … “We do, sometimes, however, have to recognise the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”
The case of Charlie Gard was receiving a lot of attention from Christianists. They, of course, were firmly on the side of subjecting his tiny body to whatever might possibly delay him joining Jesus. Thus the Infallible One came out with a statement (The Guardian again):
Pope Francis is calling for the parents of critically ill baby, Charlie Gard, to be allowed to do everything possible to treat their child.
In a statement on Sunday evening [2 July 2017], the Vatican said the pope was following the case of the 10-month-old, who has a form of mitochondrial disease, “with affection and sadness” and was close to his parents: “For this he prays that their wish to accompany and treat their child until the end isn’t neglected.”
President Donald Trump
As is typical of Trump, his support came via tweet:
If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.
— Donald J. Trump (@realDonaldTrump) July 3, 2017
There was more than just this. The US Congress gave legal permanent residence to Charlie Gard so he could go there for treatment. The implication in the tweet announcing this was that the US was offering “world class” care, as if that was not what he was currently getting.
.@HouseAppropsGOP voted today to give lawful permanent residence to #CharlieGard so he can come to the US for world class medical care pic.twitter.com/FUTbfeZSr4
— Rep. Kevin Yoder (@RepKevinYoder) July 18, 2017
Chris Gard and Connie Yates Announce Their Decision to Let Charlie Gard Die
But, the truth is, the experimental treatment would not mean a cure. The only thing it could do was prolong Charlie’s suffering. It seems his parents eventually come to recognize this. They transfer Charlie to a hospice so he can life his last days as comfortably as possible.
Chris Gard made this statement about his and Connie’s decision. Charlie Gard died in the hospice shortly afterwards.
At the end, the listening crowd of Christianists start chanting “Justice for Charlie” over and over again. It was horrible.
Charlie died in the hospice a few days later.
The Christianists Weigh In: The Abuse of Great Ormond Street Hospital Staff
The hospital at the centre of the drama is London’s Great Ormond Street hospital (GOSH). They have an international reputation for quality. Their staff are people who spend their professional lives caring for others. At work all day, every day, their focus is improving the lives of the patients in their care.
In the Charlie Gard case, the staff at GOSH as usual put their entire focus on what was best for their patient. Christianists thought they knew better, which, of course, is their right.
An appropriate reaction to their disagreement with GOSH would be writing letters, articles, or blog posts, or peacefully protesting. They could start a social media campaign, or hold a prayer vigil, or otherwise petition the help of their god and his saints. There is a huge range of things they could do to make their opinion felt.
But many couldn’t leave it at that. Instead there was a wide range of abuse and even death threats towards the GOSH staff.
Statement From GOSH Chairwoman
In a statement the chairwoman of the hospital board, Mary McLeod, says (via the Sunday Express):
Charlie Gard’s case is a heart-breaking one. We fully understand that there is intense public interest, and that emotions run high.
We recognise the tireless advocacy of Charlie’s loving parents and the natural sympathy people feel with his situation.
However, in recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance.
Staff have received abuse both in the street and online.
Thousands of abusive messages have been sent to doctors and nurses whose life’s work is to care for sick children.
Many of these messages are menacing, including death threats.
Families have been harassed and discomforted while visiting their children, and we have received complaints of unacceptable behaviour even within the hospital itself.
Whatever the strong emotions raised by this case, there can be no excuse for patients and families to have their privacy and peace disturbed as they deal with their own often very stressful situations or for dedicated doctors and nurses to suffer this kind of abuse.
Great Ormond Street Hospital is in close contact with the Metropolitan Police and we will do everything possible to hold to account anybody involved in this kind of deplorable behaviour.
I’m just waiting for someone to say that no one actually died, as if that would make it okay. Besides, we don’t know what plots the London police may have foiled. They are one of the best in the world when it comes to stopping terrorists.
The Self-Righteousness of those Doing God’s Work
Ultimately, this is an issue with those who think any kind of behaviour that is done of behalf of their god is okay. Doing it for Him justifies an act of hate, bigotry, abuse, or even murder.
From blowing up abortion clinics to refusing to issue marriage licenses to same-sex couples, it’s all just crime in the name of God.
Saying “it’s my religion” does not make it okay. If it’s your job to issue marriage licences to anyone who has a legal right to marry, you do it. If your conscience doesn’t allow you to do that, find another job. (Kim Davis.)
If your religion tells you contraception is wrong and you refuse to give your staff medical insurance that includes coverage of that, you can’t then make millions selling products from a country that mandates contraception and even abortion. (Hobby Lobby.)
The Christian right are really good at attacking Muslims for the misogyny and homophobia of Islam, and applying the views of Islamists to all Muslims. They’re not so good at recognizing that the Christian right are no different than the Muslim right. It’s just that they look more like them. Thus, they find it easier to forgive or ignore them.
End of Life Choice
And there’s another question that has to come up. Is it humane to withdraw care from Charlie so he suffocates to death? Or would it be kinder to use medication so he died without suffering, given the inevitability of his death?
Several countries now have such legislation, and it’s going through the process now in New Zealand. Should parents be able to make this decision for their children in circumstances like this?
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There’s a big cultural difference between the US and the UK. In the US doctors will go ahead with all medical interventions that they can think of, so long as someone will pay, regardless of whether it’s actually in the interests of the patient.
So they’ll drag out the final weeks of a cancer patient, doing all they can to postpone death, regardless of the quality of life that is being achieved. In the UK doctors are far more willing to ask whether the intervention is really going to achieve anything, and opt for palliative care only if not, accepting that death will then be somewhat earlier, which is often what the patient themselves wants.
To summarise: US ethos for a sick child: any and all intervention, so long as someone will pay for it. UK ethos: intervention when it’s in the child’s best interests.
So people from the US look at the Charlie Gard situation and just assume that it must be about money. But it never was. Worth a read: https://reaction.life/charlie-gard-facts/
Americans would do well to dismount their high horse until every child born in the US has access to the same world-class medical care that Charlie Gard got, regardless of the financial standing of the parents.
Good summary, Heather. Well said Coel.
Yes and yes.
Well said, both. Just to add to Coel’s point – this is an unfortunate result of the free market at work in the health system, because the profit motive that drives the “fee-for-service” system is what creates the all too common phenomena that she describes.
Excellent comment Coel. I was going to write about how the US right views, and takes advantage of, this whole situation – it was originally part of this post. Instead I will address it separately at some point in the future when the focus is the appalling situation of healthcare in the US.
“…the same world-class medical care that Charlie Gard got, regardless of the financial standing of the parents.”
Coel, that whole last paragraph is so much to the point, the ‘regardless of’; I hate to use the expression but: ‘spot on’.
In the US there is a culture of fear of death. There is an inability, for some reason, to accept death as part of the great arc of life. They like to pretend it doesn’t exist. This, and the high levels of religiosity, tend to warp perspective resulting in foolish decision making.
During this whole Charlie Gard thing, I thought the parents were unashamedly attention-seeking. It was weird to watch them parade this tragedy in front of the whole world. It was hard for me to believe they had the ‘best interests’ of this child at heart. If they had, they would have done everything possible to lesson his pain, not flaunt it. They appeared to blame GOSH and its doctors for Charlie’s plight. No, it was the disease that was at fault. It all descended into a three-ring circus, especially with the Vatican and Trump getting involved ffs. At the end, I lost what little sympathy I had for these two people, who seemed, while mourning the loss of their son, like they were getting off on their 15 minutes of fame.
It is curious that the Christians seek to delay death as long as possible for someone like Charlie (what kind of life did he have, or could he have had?) when they believe so strongly that upon dying, he gets to be with Jesus. You can’t have it both ways idiots.
I think that because Charlie’s condition is a genetic one they feel guilty and are projecting that guilt onto everyone else. There are reports of some very ugly and abusive reactions from them inside the courtroom that aren’t getting any attention because everyone is understanding that they are in pain.
Body language in the videos here and other videos tell me their relationship is unlikely to survive long term.
I think guilt sounds likely. I would assume that since the British are steeped in a class system which still has a monarchy based on heredity, there is a tendency to see genes as ennobling on the one hand or condemning on the other. I think the parents may feel there is a family taint that is now public. Americans would not be so likely to worry about genes since our history is based on the idea of equality(even if it’s only partly true). Americans, for example, always say anyone can grow up to be president. Take Trump, for example. A total idiot who may have inherited both his money and his flaws of character but who was judged worthy by a sizable minority.
“I would assume that since the British are steeped in a class system which still has a monarchy based on heredity, there is a tendency to see genes as ennobling on the one hand or condemning on the other.”
Nonsense. Have you ever been here?
I would agree. The British monarchy gets much bigger crowds of support in the US than the UK. The opinion of what having a monarchy means is very different in the UK than what many in the US think.
I mentioned the monarchy only to hint at the continuing influence of the past on the present. What I’m referring to is the potential for Victorian attitudes toward class to be felt in modern Brits. My father’s parents, for example, were from England and settled in Canada. Dad was impressed in the Canadian schools(1930s) with the notion that, “the sun never set’s on the British Empire”. He memorized poems extolling the greatness of the British people, and the white man’s burden. When it came time to write his will, he revealed affinity for the idea of Primogeniture, which privileges the eldest son. Now, this is a second generation Canadian. I can well imagine similar feelings in Brits as well, although I’m sure this attitude is fading fast. The British parliament has a House of Lords, which if I’m not mistaken, is not elected. As recently as the 1950s Christopher Hitchens and Richard Dawkins were a product of boarding schools and Cambridge’s historical mores which emphasized a chosen, educated class.
Connecting all this with the Lords is just idle musing on my part, and I don’t want to defend them necessarily. Perhaps there is nobody left in the current generation that feels any influence on the class system, but that would surprise me.
Richard: Yes I have traveled in England and Wales. My experience was overwhelmingly positive. I love the place. But, I did have one experience that supports my conjecture. Since my wife and I enjoy the rowing sport (crew), we decided on the spur of the moment to visit the world famous Henley Rowing Club. As we entered the facility we noticed everyone was dressed in suit and tie. We were dressed as tourists. We were given a very cold shoulder and noticed no one greeted us and no one spoke to us. Compared to almost anywhere in the US, I took this to be a remnant of British snobbery, which I think must be a product of the long class history.
I have also been to Henley (the Regatta, that is, and dressed properly for the occasion, and had no problems). If you were given the cold shoulder at the Henley Rowing Club because you were dressed as tourists that is almost certainly because you failed to follow the dress code and the members considered that to be extreme rudeness on your part. There are very few places left in this country where there is still a dress code, but Henley is one of them (another is Royal Ascot, at least in the Royal Enclosure and the Queen Anne Enclosure).
If you were invited to attend a formal state dinner given at e.g. the White House, would you turn up in jeans, tee-shirt, trainers and baseball cap? Would you be surprised if the other guests considered that to be rude – that you just couldn’t be bothered to dress properly for the occasion?
If you think that there are still Victorian attitudes in Britain, you are greatly mistaken. Most people here have probably never even heard of Rudyard Kipling (he is no longer read in schools as his writings are considered politically-incorrect). Very few people now go to boarding schools (hint: the Fifties ended almost sixty years ago), and there are very few hereditary peers left in the House of Lords: although unelected, the majority are life peers who are appointed by the sovereign on the advice of the Prime Minister, or on the advice of the House of Lords Appointments Commission. The idea is that they are people of intelligence, good conscience and proven attainment who will do a thorough job of reviewing proposed legislation regardless of political affiliation.
Well, that’s welcome news.
IMO this is not the time to speak ill of the parents–they’ve lost their baby. This post was about Christianists, not judging and disparaging the bereaved.
Yes Diane, parents losing a child are rarely reasonable. Losing a beloved one is sheer horror, and it is very difficult to think straight. I tend to be forgiving there, or rather commiserating.
Indeed, the Christianists are the evil ones here.
It was a tragedy for these parents and that they,had to face the intense scrutiny of the media was terrible. Whatever decision they made was their’s alone to make and no one else should have challenged it.
Firstly, that they had to “face the intense scrutiny of the media” was entirely their choice. They were trying to use the media to get people on their side.
The decision was never “theirs alone to make”. They were choosing to allow the continued suffering of a child who had terminal brain damage, simply because they were in denial. The courts were acting to protect the child from the unnecessary prolongation of his suffering, since the parents seemed incapable of understanding this. Parents have no right to make decisions about their children that cause unnecessary suffering to the child.
My wife and I lost our daughter three hours after her birth. The birth was two months premature, at a time and in a location where care of premature children was not as good as it is now. We were told by the doctors that she had suffered serious and irreversible brain damage through oxygen starvation during the birth. We chose to let nature take its course, and I can still remember how devastated we were at our loss. Nonetheless I still stand by the decision taken, and am grateful for the two children we brought up. These children did not have to put up with the inevitable relative neglect they would undoubtedly have suffered, had we been trying to raise a seriously brain-damage sibling at the same time.
In answer to your final question Heather, yes, euthanasia would be better. It was also good enough for my late wife, who made use of veterinarian sodium pentothal, illegally bought from Mexico, to relieve her terminal cancer suffering. As you can see, I’m strongly in favour of assisted dying where appropriate.
Thanks for sharing your lovely and heartbreaking story.
It is very apparent that religion prevents humane treatment of suffering and impedes good judgement. There is no single aspect of human civilization (and the human condition) as damaging and ugly as religion. It astonishes me that zealots can’t see themselves in a rational light, and stop acting like a bunch of assholes. Thousands of years ago, Socrates knew the answer to the religious problem: know thyself.
I wonder what the parents did with the donated money. They should give it to GOSH.
Apparently they’re going to use the money to “help other parents” in the same situation as them. We will likely see other parents in denial getting support therefore.
Everyone has enormous sympathy for the parents so no one wants to tell them how selfish they’re being. The religious go on and on about being the voice of the unborn child, but now that he’s born, they’re attacking those who are acting as his voice.
How do we know Charlie was suffering? If he had lost most if not all brain functioning, was he even aware? If he were in pain could not the physicians alleviate it?
I read articles that indicated that what little response Charlie had was to painful stimuli. It was a big part of the case the doctors presented in court. The level of medication required to suppress the pain in such a tiny body would kill him.
On top of all the other heartbreaks, inanities, and futilities of this tragedy, I was appalled to learn here that Charlie was given permanent US resident status, another indication that he’d become the latest “martyr” for the US religious/political right. We’ve got people dying in the streets here or dying at home for lack of decent medical treatment for genuinely treatable medical problems — and all this happening when the Repubs want to deny more Americans the right to decent medical care.
The way this was politicized in the US appalled me too. It was framed as government deciding who lived and who died and used as a reason to oppose a single-payer system. The reason Charlie was getting such world-class, very expensive, treatment in the first place was because that treatment is available to everyone in the UK via the NHS. It’s the same in NZ, Canada, Australia, Japan, South Korea, Cuba, most of Europe, and many other places around the world. It would not be available to a baby born with the same condition in the US unless the parents were wealthy or had unlimited (i.e. no lifetime limits) health insurance.
“The way this [tragedy] was politicized in the US appalled me too.”
Really? Is that not precisely what’s happening here? This particular tragedy is moot, and too many words already have been spun on all sides. Yet apparently it will do as an excuse to score points and indulge prejudices. Is that not as ugly as anything else that has occurred?
“It was framed as government deciding who lived and who died…”
That’s an accurate account of many Americans’ concern about this case — but of course this completely undermines the claim that it was a religious issue.
Regarding “abusive messages”, one has to be curious about the actual evidence that (a) the alleged volume exceeded what would be expected for any widely reported public controversy in the digital age; or (b) has been shown to be linked to an organized so-called “Christianist” nexus. I don’t find anything in the citations about “Christianists weighing in”.
More importantly, one has to wonder as well: how many of the people you demonize do you know personally, and have engaged in honest, open-minded dialog?