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Why terminally ill infant Charlie Gard’s case has created a global controversy

Charlie's parents say the UK government is sentencing him to death. The truth is more complicated.

Judge Continues To Hear Evidence In The Case Of Terminally Ill Baby
Charlie Gard’s parents leave the Royal Courts of Justice in April
Photo by Chris J Ratcliffe/Getty Images

For the past week, the British media has been inundated with photographs of one baby: the terminally ill Charlie Gard, whose court battle over his end-of-life care is raising uncomfortable questions about family, autonomy, and our level of public trust in institutions at large.

Eleven-month-old Charlie has a hereditary, terminal disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). He has been suffering degenerative brain damage since birth, and cannot breathe without a ventilator or move without assistance. The condition is exceptionally rare; it’s believed to affect a few dozen children at most.

Specialists at Great Ormond Street Hospital in London, where Charlie is being treated, came to the conclusion that it would be in Charlie’s best interest to remove the ventilator and begin to focus instead on helping him feel as comfortable as possible for his final days. A team of specialists in Barcelona, consulted for a second opinion, came to the same conclusion.

But Gard’s parents, Chris Gard and Constance Yates, disagreed. They wanted to bring Charlie to America to undergo experimental treatment, called nucleoside bypass therapy, which they believed could slow the progression of the disease. They raised funds through GoFundMe — a staggering 1.3 million pounds (about $1.67 million US) — for the treatment, which, unlike general medical care in the UK, would not be covered by the UK's National Health Service.

The Gard family’s struggle to take Charlie from his hospital — and pursue experimental, if unlikely-to-work, medical care outside the UK — has received mass media attention, as have the legal barriers to their case. Their story has been taken up by public figures ranging from President Trump to Pope Francis, who have both expressed support for the family. Their supporters and the media alike have tended to characterize the issue as a right-to-life question — implying that the UK government is pro-euthanasia. But the media frenzy over the Gard case is particularly potent — and polarizing — not just because of its emotionally arresting nature, but also because it ties into a wider question of authority and family: Whom should we trust to make final decisions about a child’s well-being? Should the fundamental societal unit be the family or the individual?

At its core, the outrage surrounding the Gards’ case is less about life than it is about the authority of families versus that of institutions and when it comes down to it, who gets to make the final call.

Charlie Gard’s case has been going on for months

Because Charlie’s parents and his hospital disagreed on the best course of treatment for Charlie, the case ended up in court for a final ruling, as is standard practice in the UK for cases of this nature.

In April, a high court ruled that it was in Charlie’s best interest to remain at Great Ormond Street and to go off life support in order to undergo palliative care. Justice Nicholas Francis ruled that, ultimately, there was no hope of Gard’s recovery or even improvement — even the (unnamed) doctor behind the experimental treatment in the US agreed, upon seeing additional documentation, that it was "unlikely that he will improve with that [experimental] therapy.”

Even if the treatment could slow further progression of the disease (something that also would be unlikely, according to documentation in Justice Francis’s decision), it could not reverse existing damage. The remainder of Charlie’s life would be painful: Ormond Street specialists believe Charlie is capable of experiencing pain, though not expressing it, a factor in the court’s final decision.

Charlie’s parents pushed back against the court’s ruling, taking their case to the court of appeals, which ruled against the parents in late May, and to the UK supreme court, who ruled similarly in June. Last week, Charlie’s parents lost their final appeal when the European Court of Human Rights declined to intervene in the UK’s decision. Charlie was due to be taken off life support on Friday; however, the hospital has postponed this to allow Gard and Yates to spend a few more days with their son. Great Ormond Street Hospital declined to allow Charlie out of their care to die at home, as per his parents’ wishes, on the basis that this too could prove detrimental to Charlie’s health and comfort in his final hours.

The case has been a Rorschach test for attitudes on left and right alike

Several major political figures have weighed in on Charlie Gard’s case. Donald Trump has expressed outright support for Gard’s parents on Twitter.

So has Pope Francis — whose statements on and off Twitter seem to override, or at least refine, the Vatican’s overall previously stated position on the boy’s case.

The pope said in a statement that he was "following with affection and sadness the case of little Charlie Gard and expresses his closeness to his parents. For this he prays that their wish to accompany and treat their child until the end is not neglected.”

However, Archbishop Vincenzo Paglia, president of the pope’s Pontifical Council for Life, the Vatican’s bioethics advisory board, initially seemed to defend the courts’ decision, saying in a statement, "We must do what advances the health of the patient, but we must also accept the limits of medicine and ... avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family. Likewise, the wishes of parents must be heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.”

Earlier this week, a Roman hospital administered by the Vatican offered to take over Gard’s care, an offer immediately rejected by UK Foreign Secretary Boris Johnson, on legal grounds.

For supporters of the hospital’s decision, the government is choosing to prioritize the physical and emotional well-being of a child in severe pain over the wishes of his parents, which might unnecessarily prolong his agony. A legal principle like England’s Children Act of 1989 — which underpinned much of the Gard legal debate, and assigns a child his or her own legal representation separate from that of a guardian in any litigation — is a necessary protective measure from parents whose own needs cannot be allowed to supersede the child’s own.

For supporters of the Gard family, however, it’s just another example of a government treading on the rights of its own citizens — a “death panel” made real (it’s not for nothing that the Gard case has captured the interest of the far right). It’s a case about the right to life, to be sure, but even more so, it’s a case about freedom and, fundamentally, the lack of trust in institutional authorities (doctors, hospitals, governments) to make the right call. While the question of trust in medical institutions specifically is particularly pertinent in England — where right-leaning tabloids regularly seize on the perceived failings of the state National Health Service — the Gard case, in going viral, has spoken to our cultural anxieties across the pond.

In defending the Gard family in the British newspaper the Independent, Mary Dejevsky suggests that public mistrust in doctors more broadly — she cites examples of preventable deaths in NHS hospitals — legitimizes the Gard family’s insistence that despite medical opinion to the contrary, there is hope in Charlie’s case. Yet the same could be true in reverse: A wider sense that institutions have failed has only intensified the rhetorical power of Gard’s case, and its particularly politicized appeal.

We are, after all, in the age of decentralized knowledge, and a cultural trend toward informational democracy — for better or for worse. The sheer unprecedented availability of information we have access to makes it easy for us all to be experts, or, at least, to think of ourselves as experts.

We have “fake news,” but we also have Wikipedia and WebMD. We have access to information — however trustworthy — and a general cultural distrust toward any who would serve as its gatekeepers. If there is “hope,” however nebulous, and however scientifically unlikely, it becomes easy to feed into the idea that hospitals and governments don’t care enough about saving Charlie but parents know what’s best for their child.

And because Gard’s parents’ wishes conflict so drastically with medical opinion, it’s easier still to cast them in the role of tragic martyrs — victims of a profound anti-family bias, in which dissembling pseudo-experts override natural familial instinct.

After all, the talk about the dissolution of family that has come to mark, fairly or unfairly, right-wing discourse has likewise intensified the case’s appeal on the right. (It’s telling that in his criticism of the Vatican’s initial response, National Review’s Michael Brendan Dougherty characterized his initial outrage at Archbishop Paglia’s remarks as, "If the Church cannot stand for the family against the courts, who will?”)

If the sanctity of the family has been struck down by, say, the liberal scourges of feminism, divorce, same-sex marriage, and other government-sanctioned forms of societal decay — a familiar right-wing refrain — then this case represents yet another assault: an example of familial integrity, and familial authority, being challenged by an uncaring government. Comments on Twitter, for example, frequently reference the idea that the state cannot take the place of a father.

Both sides, of course, have a point — it is difficult to deny parents in anguish the right to do as much as possible for their son. But it’s worth noting that, on Twitter, at least, the narrative of freedom has taken over from the facts of the case: Both the hospital’s decision and the parents’ were made to spare Charlie from further suffering. It’s worth remembering another point Paglia made in his Vatican statement, warning against “ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.”

On this issue, at least, the Vatican is spot on.

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