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.
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.
— 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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