The parents’ fight to keep their son alive has been hijacked by ideologues and opportunists, writes Dani Garavelli
One of the most distressing aspects of the Charlie Gard case is that even as the world agonises over his fate, his life and likely death are being turned into an ideological war zone.
For his parents, Chris Gard and Connie Yates, the campaign to be allowed to take him to the US for experimental treatment is entirely personal. Who could blame them for continuing to believe their much-loved son has a chance of a meaningful existence in the face of medical advice suggesting otherwise?
One can only assume the doctors at Great Ormond Street Hospital, whose raison d’être is to save sick children, are also doing what they believe is in the 11-month-old’s best interests. How much easier would it be for them to take the line of least resistance? Right or wrong, standing firm in the face of so much public disapproval takes courage and conviction.
But many other parties, lining up on either side of the debate, appear willing to co-opt this little scrap of humanity for their own purposes. I’m not suggesting they don’t care about him or his parents, or that their sticking their oar in isn’t motivated by genuine concern. But it is clear that, for some, Charlie’s fight for survival is not merely a private domestic trauma, it’s a symbol of wider societal tensions.
Most obviously, the parents’ campaign appears to embody the power struggle between the individual and the state. With Charlie unable to speak for himself, who should control his destiny? The parents who brought him into the world and spend every waking moment at his bedside? Or the courts who can take a more dispassionate view of his long-term prognosis?
To those on the religious right the answer is obvious: his mum and dad are the ones who know him best; and any attempt to oppose their will is an attack not only on their judgment, but on the rights of parents everywhere.
Charlie also finds himself at the sharp end of the Pro-Life/Euthanasia debate. Is his parents’ refusal to yield to a series of legal judgments the product of an obsession with preserving life at any cost? Or are the rulings indicative of a “throwaway culture” which sees no value in the imperfect and unproductive?
These are the fiercest battlegrounds, but, as doctors continue to argue over the potential benefits of treatment, I have also heard Charlie being used to advance arguments on the dangers of “socialised medicine” (which arguably allows power to be ceded to the state), the growing distrust of experts, and the West’s inability to come to terms with mortality.
In a piece of crass sensationalism, the judgments, from the High Court, the Court of Appeal, the Supreme Court and the European Court of Human Rights – all of which say Charlie’s life support should be switched off – have been held up as evidence that Sarah Palin’s vision of a dystopian future where the fate of the ill would be decided by “death panels” is now a reality.
And yet Charlie’s condition – mitochondrial DNA depletion syndrome – is incredibly rare. Little is known about its effects, and the treatment his parents want him to receive has barely been tested. How can his plight be emblematic of anything other than the modern world’s ability to produce a conveyor belt of complex and heart-rending ethical dilemmas?
The most offensive sabotaging of personal distress has come in the form of interventions from world leaders. Pope Francis – who offered Charlie a Vatican passport in the hopes it might help his parents circumvent the courts – at least has the excuse of acting in accordance with his religion, and his belief that miracles are possible.
But what of Donald Trump, who last week tweeted his support for Charlie’s parents? Could there be a more cynical gesture than using a terminally ill baby to boost your personal profile? And the hypocrisy of it. Remember, this same president – whose comments prompted a US hospital to offer Charlie free treatment – is currently trying to deny millions of American babies health insurance through the repeal of ObamaCare. This same president believes health care is not a human right.
While we’re at it, what is the public fixation with this one boy? Why is the life of Charlie Gard a fit subject for the G20 summit, while, every day, refugee children die in tower blocks and buses and overloaded boats, and no-one lifts a finger? I am not trying to belittle the suffering of Charlie or his family. It’s just the attention his case has garnered exposes our double standards. In a socially unequal world, some lives will always be more expendable than others.
Empathising with Chris and Connie’s pain is a natural response. The thought of being in their position fills us with dread. Who knows the lengths to which any of us might go to hold on to those we love? Even so, their interests are not necessarily synonymous with Charlie’s so theirs cannot be the only opinions that count.
Wading any further into the debate feels like arrogance. Throughout the court hearings Great Ormond Street Hospital has argued that Charlie – who is said to be blind and deaf and needs a ventilator to breathe – has suffered irreparable brain damage and that any attempt to treat him will prove futile and prolong his pain. But late last week the hospital applied for a fresh hearing following claims “of new evidence relating to potential treatment for his condition”. The truth is medical experts are divided over his prospects; so what chance do politicians, journalists or the general public have of making any kind of informed contribution?
Raking up previous cases – where equally dogged parents have gone on to prove the doctors wrong – is irresponsible and cruel, as it offers up a vision of a rosy future which may not be realisable. None of us have the faintest idea if those experiences can be replicated.
As human beings, we crave narratives with pat resolutions. But sometimes the moral of the story is there is no moral. With dilemmas as complex and individual as this one, all we can reasonably do is to offer support and hope the right decision is eventually taken; and that Chris and Connie find the strength to cope with the future – whatever it holds.