A few thoughts on Charlie Gard…

 

IF something terrible happened, how would you react? A simple question with many depths. I started thinking about this when the story of Charlie Gard first came into view.

The 11-month-old baby died yesterday, a week short of his first birthday, after being unknowingly at the heart of a legal battle between his parents and Great Ormond Street Hospital.

Charlie had an extremely rare genetic condition that caused him to suffer from progressive brain damage and muscle weakness, and in medical terms his outlook was dire.

His parents, Connie Yates and Chris Gard, who became entangled in a long and bitter legal dispute with the children’s hospital, yesterday paid tribute to their “beautiful boy”. It is worth pausing at this moment to acknowledge that this couple have been through a hellish grind. As glimpsed through the news lens, their suffering has been on show, physically so in the case of Connie Yates, the pain etched so deep on her face there seems to be nothing there but pain.

This couple fought to save their baby; they fought against what seemed to them to be an unfeeling institution that denied their stricken baby boy a chance. They mustered the tools of the age – social media and the daily headlines – to their cause and did everything they could to give their son a better outlook.

They raised £1.3m through 80,000 crowd-funded donations, there were petitions, a Facebook site called Charlie’s Army – and there were tweets from the Pope and Donald Trump. When the parents appeared before the cameras, looking defiant, angry, distraught, crowds gathered and people chanted emotive but essentially foolish slogans such as “Save Charlie Gard” – foolish because they weren’t contributing anything other than expressing their sorrow, and then turning that sorrow into a weapon against the system, against the experts.

A long line of judges ruled that Charlie should be allowed to die, saying that was in his best interests because of his suffering and because he was beyond being cured – and ruled also that proposed experimental treatment in the United States was “futile”.

In their warped way of thinking about our health service, some US commentators said Charlie’s plight was the result of our state-run national health service – that he was, in effect, condemned by socialism.

That was dismissed as “nonsensical” by Mr Justice Francis, one of the judges who considered the case after Great Ormond Street Hospital said the only option for Charlie was to turn off his life-support system. This could only be done with the parents’ consent, something they had no intention of granting, which was how this tragic case ended up in the courts.

So angry did the social media mob become on Charlie Gard’s behalf that staff at the children’s hospital even received death threats. Charlie’s parents condemned those who made the threats – threats caused by their actions, which was one of many thorny aspects to this case. Naturally they didn’t want anyone to harm doctors, but the way they portrayed medical staff as the villains of the piece had the unintended consequence of vilifying the very people who dedicate their lives to saving children. Or trying to save children, as not all stricken children can be saved.

Perhaps that is what lay at the heart of this cruel case. Parents will do everything for their children, and that’s what Charlie Gard’s parents did – everything within their grasp, while also holding onto hopes that were not within their grasp.

To answer the question at the top of this blog, not all people would react as Charlie’s parents did in making their fight so public. They clearly felt they had no choice, but one result of turning your private sorrow over to public ownership is that in a sense you lose control – to the point when the mouthy president of the US is tweeting about your private sorrows.

Such painful exposure will not suit everyone, but presumably Charlie’s parents felt they had no choice, although watching from the dispassionate distance, it was possible to wonder if they sometimes thought they had unleashed something that could no longer be controlled. This, naturally, is supposition because how can you know?

Charlie Gard certainly became public property in ways that must have been both uplifting and just hopelessly sad, too. He features in today’s newspapers, as you would expect, as in a sense the media had taken ownership of his short life.

The Mail introduces its story – “Rest In Peace, Charlie” – with the words: “His battle for survival captured hearts around the world.” I find that notion troubling, as this baby didn’t battle but was kept alive by life-support systems while a legal battle raged around him.

I find all the public emoting that occurs nowadays rather difficult, too, but will readily confess to shedding sometimes a private tear.

I honestly have no notion of the rights and wrongs of this case, other than to say that you don’t create a media story without paying the price in ways you might not have expected.

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