ANYONE who has ever had a child, and probably a great many who have not, has some understanding of the kind of feelings that must be driving the parents of Charlie Gard at this devastating time. To watch what you first thought was a beautiful healthy baby, succumb to a disease that weakens muscles and organs and leaves him unable to eat and breathe, and then find that there might be some hope in a treatment, yes, experimental, and yes, never yet used on your own child’s disease, and then be denied it, must be an agony. To see your child approaching death, and yet, no matter how you fight, not be able to even try and prevent it, must be torture.

We all have our own reactions to the story of Charlie Gard, the 11-month-old baby with mitochondrial DNA depletion syndrome. Earlier this year he was the subject of a successful court bid by Great Ormond Street Hospital to gain permission to remove life support, and then a series of unsuccessful appeals by his parents, Connie Yates and Chris Gard, who wanted either to take their son to America for experimental treatment, or prolong his life till they found a way to deliver such treatment. Last week saw fresh hope for the parents, when Great Ormond Street, made an application to the High Court to have the case reviewed in the light of new information on treatment. Meanwhile, Gard’s plight has been almost unavoidable in the media, the centre of a social media upwelling of support and fundraising, and, last week, the attentions of the Vatican and Donald Trump.

Perhaps we think, like Jeremy Corbyn, that "any parent going through this would want their child to get the best possible treatment”. Perhaps we consider that, in their circumstances, we might have gone with the advice and expertise of the doctors at Great Ormond Street Hospital. Perhaps we wonder, and certainly I do, if, in such a situation, I might try to let go, yet at the same time not be able entirely to let go – for grief is its own struggle against letting go.

It’s not that the situation these parents find themselves in is unimaginable – it’s that it is deeply imaginable.

The story of Charlie Gard, like news reports of children who have gone missing, is something that tugs on a very human angst. We are programmed not to let our children go – not too early, anyway. We hold them close. We do whatever we can for them. The loss felt by these parents, we understand, would be devastating.

So we feel for them. But this feeling of empathy for the parents, the desire to bolster their hope, to see Charlie saved, seems to have taken, over the last week in the media, and with the interventions by the Vatican and Donald Trump, a slightly grotesque turn. The language has turned vicious. It has become politicised. People with interests in parents’ rights and right-to-die ethics are wading in. Charlie Gard has become the trigger for an attack, by right-wingers in the United States, even, on the merits of “single-payer” health care systems, as our NHS is described.

The doctors of Great Ormond Street Hospital are being portrayed by some as killers, though in fact it’s their treatment that is currently keeping Charlie alive, actively saving him every moment he still breathes. Of course, like many ethical issues, it’s complex, a weighing up of rights, responsibilities and probabilities.

The majority expert opinion appears to be that Gard, since he has encephalopathy (a form of brain damage) is never going to be able to function independent of support, even should he have the treatment. Yet, of course, there are other experts who still offer hope – five of them, Connie Yates, has said. And money is not a barrier, since, the couple have raised £1.3 million from crowdfunding.

What is curious about all this, is that Charlie Gard, the figure at the centre of it all, often seems strangely pushed to the sidelines. Partly this is because what is almost unimaginable in all of this, is what he is going through. None of us can know how he suffers. His mother thinks she knows, and says, “I don’t feel he’s in pain. That’s the only reason I’ve been able to carry on.” But the doctors think otherwise.

Meanwhile, what is increasingly disturbing is that the public reaction to the Charlie Gard story no longer seems to be purely fuelled by the emotions around this one baby’s fate. It now appears also charged by other wider cultural anxieties and fervours: a distrust in authority, a questioning of expertise, and belief that somehow hope, faith or love can perform miracles.

That the Vatican should intervene, as it did, in such a faith-charged story, is not surprising, particularly given the fate of Charlie Gard also raises questions about when we intervene in extending or curtailing human life. Nor, when you think about it, is it so remarkable that Trump offered his help too. The Charlie Gard story contains exactly those emotive elements that the US president thrives on. Trump is the ultimate doubter of establishment experts, the questioner of climate change. He is also good at taking those feelings of desperation and hope, and using them to drive up his own popularity.

These two interventions say a great deal about what Charlie Gard means to us. The reason we are now so obsessed with his story, is because at the heart of it are big questions of our time. How, in a world increasingly distrustful of experts and authority, in which the internet offers us instant expertise, as well as fake news and fraudsters, do we navigate making the biggest, most profound decisions? Who can guide us? Can we trust our own hearts? What place do authorities have in this world?

We need our experts. Without them, as a society, we are adrift. But they need to maintain our trust. The big question around Charlie Gard, is not whether a treatment will save him – that seems unlikely – but why that trust between parents and hospital so profoundly broke down.