Cruel and ignorant
Eddie Ford examines the despicable role of the media and political right in the Charlie Gard case
We are all familiar with the sad story of Charlie Gard, who was born with a very rare genetic disorder that causes progressive brain damage and muscle failure - for which there is no known treatment and usually causes death in early infancy. In October 2016 he was put on a mechanical ventilator in Great Ormond Street Hospital (GOSH) and was eventually transferred to a hospice on July 27 - where he died the next day when life support was withdrawn.
Obviously, to lose a child at any age is devastating, let alone one so young - Charlie was aged 11 months and 24 days. But what should have been a private tragedy got turned into a public story - and spectacle - by a cynical media and sections of the political right, both in the UK and the United States. No doubt the grief-struck parents, who deserve only profound sympathy, have been part of that unedifying process - but the media were always the prime movers of the story, despicably eager to promote their own reactionary political agendas and sell advertising. Even the BBC, which is supposed to be driven by a different agenda, joined the pack - making Charlie Gard the top story day after day.
This resulted in a breakdown of what should have been a trusting relationship between the hospital doctors and the parents, Chris Gard and Connie Yates. After Charlie had seizures that caused additional brain damage in January, GOSH thought it was in his best interests to withdraw life support - but, understandably enough, Charlie’s parents still wanted to keep him alive. Of course, GOSH had no power to end Charlie’s life support without the backing of his parents and this meant it had to apply to the courts for mechanical ventilation to be withdrawn.
Not being automatically eligible for legal aid, the parents were represented by a pro bono legal team - whilst Charlie’s interests were defended by an unnamed court-appointed guardian, represented by the barrister, Victoria Butler-Cole. Stirring things up, The Daily Telegraph reported that the parents “privately expressed their concern” when they realised that Butler-Cole is the chair of Compassion in Dying, a sister organisation of Dignity in Dying, formerly the Voluntary Euthanasia Society. The paper went on to quote a “source close to the parents” who said the family found the appointment of Butler-Cole “astonishing”, as it “looks like a profound conflict of interest”.1 Naturally, The Sun, Daily Mail and other rags all ran similar stories about this supposedly “astonishing” appointment - ascribing sinister motivations to GOSH, and using it as an opportunity to make ‘pro-life’ propaganda and champion dubious interpretations of “parents’ rights”.
Like vultures, ‘pro-life’ campaigners from the US flew into Britain to offer their fake solidarity - including the particularly odious pastor, Patrick Mahoney, a former national spokesman for Operation Rescue - an anti-abortion group responsible for violent protests outside clinics and abortion providers. Describing himself as an “outspoken advocate for the struggling and oppressed”, this peaceful man of god acted like a self-appointed spokesman for Charlie’s parents and even briefed White House officials about the baby’s plight after Donald Trump offered to help the parents.
When Mahoney was initially barred from praying at Charlie’s bedside, he denounced the decision as an “outrage”. But, when hospital officials finally relented, Mahoney boasted about “victory” and posted a picture on Facebook of himself by Charlie’s bed next to his parents. With supporters like Mahoney and Trump, Charlie’s distraught parents were clearly being manipulated.
Then there is Alasdair Seton-Marsden - a close friend of Nigel Farage, who acted as a spokesman for the parents until they finally felt forced to distance themselves from him. He told Fox News that Charlie is “being held captive by effectively the British state and the British national health system” - later he told Sky News that the infant had been “taken prisoner by the NHS and by the state”.2 Farage himself was “absolutely disgusted” by the behaviour of GOSH and the courts, when all the parents “want to do is give their little boy one last chance at a medical treatment that is available in America and not available here”.3
Farage was referring to the false hope offered by professor Michio Hirano, a specialist in mitochondrial diseases at Columbia University Medical Center - and also an attending physician at the New York Presbyterian Hospital. As subsequently discovered, Charlie Gard had mitochondrial DNA depletion syndrome (MDDS), caused by gene mutations. Only 15 other cases of MDDS caused by such mutations have been recorded and no treatment has ever been tried on anyone with this variant of the disease - treatment for those with ‘normal’ MDDS had only been used a few times with little to no evidence of any efficacy.
Professor Hirano, however, claimed to have an ‘experimental’ nucleoside bypass treatment (NBT) for MDDS sufferers that could possibly work for Charlie Gard - he argued there was “at least a 10%” chance that Charlie’s muscle strength could improve, perhaps leading to a “small but significant” amelioration in brain function. He even hinted that the infant might not be permanently brain-damaged - contrary to the opinion of every doctor at GOSH and all those who offered a second opinion. But Hirano proffered this opinion without examining Charlie in person. He had not seen the infant’s contemporaneous medical records or viewed his brain imaging - nor read all of the second opinions about Charlie’s condition (from experts who had examined him and considered his records). It turned out that the good professor had a “financial interest” in some of the NBT compounds he proposed prescribing for Charlie - even if he did later claim he had “relinquished” that interest.
But the illusion of NBT was enough for Charlie’s parents to appeal against the high court decision to withdraw life support and launch a crowdfunding appeal seeking £1.3 million for treatment in the US - the target was reached in just over two months. In the meantime, ‘Charlie’s Army’ of 100,000 Facebook followers started a sincere but misguided campaign aimed at “fighting for justice” - they organised a demonstration outside Downing Street on July 6, demanding Theresa May “step in” and “save” the terminally ill youngster. But unless the prime minister had miraculous powers to cure the sick, ‘Charlie’s Army’ was demanding the impossible.
Predictably, the court of appeal on May 25 refused to overturn the decision of court - a final appeal was made to the European Court of Human Rights, which was also rejected. But Hirano eventually made it to London and on July 19 met Connie Yates and four consultants from GOSH, who were utterly unconvinced that NBT offered any sort of lifeline for Charlie - rather, it would just prolong the misery. Then an MRI scan of Charlie’s muscle tissue “unfortunately” revealed, as Hirano put it, that it was “very unlikely” he would benefit from any treatment. What the doctors at GOSH had been saying was right all along: he should have been allowed to die in the most painless way possible.
Sickly, ultra-conservative US commentators and agitators - with contemptuous disregard for the actual medical or humanitarian issues involved - used the Charlie Gard case to warn of the terrible dangers of “socialised medicine” and governmental “death panels”. “Socialism” had killed Charlie, it seems.
Thus the website American Thinker ran a series of demented pieces saying Charlie Gard represented a “perfect crystallisation” of a “tyrannically impersonal” medical system, in which “the individual human being is property of the state”. Charlie “appears to be under a death sentence”, because the UK is “a totalitarian state”, which “can withhold medical treatment as and when they decide” - and so on and so on.4
As for JE Dyer, writing in Liberty Unyielding, she decided that the case reflected that “the authority of government over human life is itself a first principle, so inviolable that everything else must yield to it”.5 Normally more circumspect, the Wall Street Journal attacked “a system that elevated a judge’s opinion about what was best for Charlie over loving parents”. According to its editorial, “the brutal reality is that when the state is responsible for nearly all health spending it inevitably takes responsibility for life and death decisions too” (July 24).
Now, I never thought I would write these words, but Melanie Phillips of Daily Mail notoriety has penned a useful article on her website, entitled ‘A cruel and ignorant campaign’ (July 26).6 She writes, quite correctly, that the stress suffered by the parents “has been hugely compounded by one of the most cruelly ill-conceived campaigns of recent times”.
This whole dispiriting episode shows that deeply irrational and reactionary views are still widespread in society, and can flare up at almost any time - especially with a malignant press calling the shots. Charlie Gard also shows the vital importance of defending socialised healthcare at the point of delivery, based upon need and not private profit. Which for Marxists means developing a positive programme for the health service, not just an uncritical defence of ‘our’ NHS.