No winners in this tragic story
Charlie Gard touched the world with his fight to live: what happens now he has passed away, asks Richard Price
Charlie Gard. The name of an innocent baby boy or a rallying cry for enraged campaigners? It took the tragedy of his passing on Friday to remind us all that, at heart, this was always about a defenceless infant. Yet, along the way, he also became a cause célèbre for a collection of activists
– and opportunists – who identified Charlie as a standard-bearer for their fundamental distrust of the establishment.
How much did Donald Trump, the Pope or the fanatically devoted legions of Charlie’s Army truly understand about the issues at stake? Crucially, did they – or, indeed, the public in general – pause to consider the implications of this global sensation once the boy himself was gone?
Only now, as Connie Yates and Chris Gard begin a lifetime of mourning their lost son, can we pause to take stock of what this distressing episode really means. Of this we can be certain: there are no winners here, only losers.
When Charlie was born on Aug 4 2016, his mother, a carer, and father, a postman, were thrilled to welcome their “perfectly healthy” baby. The eight weeks he spent at home in Bedfont, West London, would be a tiny oasis of happiness. Come September, he was taken to hospital after losing weight and strength, leading to a diagnosis of mitochondrial DNA depletion syndrome.
Both parents were found to be carriers of a faulty gene, making Charlie only the 16th person in the world diagnosed with the condition. Chris and Connie scoured the world for potential solutions and in January landed upon an experimental treatment called nucleoside, which had some success in treating children with a similar syndrome but had never been used to treat someone with Charlie’s condition.
At five months old, but already a shadow of his newborn self, Charlie became an unwitting celebrity. Connie set up a crowdfunding page to pay for the treatment in America. Celebrities piled onto the bandwagon. Tamara Ecclestone, the Formula 1 heiress, donated £10,000. Reality television stars and others moved by Charlie’s plight added their voices, and by April £1.3 million had been raised.
There was no doubt what Charlie’s parents wanted. Unfortunately their wishes flew in the face of medical
‘The chances had always been slim, but at least they always had hope’
advice. Doctors at Great Ormond Street Hospital (GOSH), where Charlie was being treated around the clock, raised serious doubts about the experimental treatment. With no prospect of his recovery, they were seeking permission to turn off Charlie’s life support machines.
The first of a series of devastating legal blows came at the High Court on April 11, when Mr Justice Francis granted permission with the “heaviest of hearts” but with “complete conviction” it was in Charlie’s best interests. Chris Gard screamed: “No!”
And Connie began the next phase of the fight. At its heart was the assertion that parental rights had been “stripped away by strangers”.
The Rubicon was crossed, symbolically marked by a banner hung outside the hospital bearing the legend “#charliesarmy! If he’s still fighting, we’re still fighting”.
Charlie had become a political football and vested interests were all too swift to make capital out of the case. Outside every court hearing was a well-meaning but increasingly frenetic band of supporters, wielding balloons and banners as they chanted, endlessly: “Save Charlie Gard!”
To which the dedicated medical staff of GOSH could have retorted: “What do you think we have been trying to do?” But, of course, they refrained, instead following the well-established path of such tragic cases by handing the decision over to an independent court.
As Peter Marc-Fortune, president of the Paediatric Intensive Care Society, puts it: “For everybody involved in these situations – parents and medical teams alike – there is a huge emotional overlay. It is quite rare to have a case where the medical staff and parents disagree so strongly, but no one should question for a moment that they are each acting in what they believe to be the best interests of the child.
“What has been ignored far too often in this debate is the fact that the child is regarded, legally, as an individual. The parents do not have a right that eclipses that of the child. So if agreement can’t be reached then we ask the courts to decide.”
By now Connie and Chris had been joined by two influential voices, both regarded by the media as “spokesmen”. Alasdair Seton-Marsden, a former UKIP candidate with a background in marketing, knew the couple through a relative who worked as a nanny to his children. After the first high-profile court hearing he delivered a statement on behalf of the family. Also on the scene was Alison Smith Squire, a features writer and media agent with a background in selling real life stories to newspapers and magazines.
Soon they were at daggers drawn. Seton-Marsden was suspicious of Smith Squire’s motives, which he regarded as primarily pecuniary, while she shared Chris and Connie’s distaste at the marketing man’s assertion that Charlie was being kept “a prisoner by the NHS and the state”.
By the end of June, first the Court of Appeal and then the European Court of Human Rights had upheld the High Court ruling. Meanwhile Charlie’s case had gone global. President Trump offered his support to the family, along with the Pope. Ted Cruz, a Republican senator, said: “No hospital, no gov’t has the right to deny parents their chance for a medical miracle.”
In reality, it was a matter for our independent courts. As Matthew Scott, a leading barrister, pointed out, judges cannot decide each case on an ad hoc basis, or apply different principles to each case. The common law system depends on rules laid down by statute or precedent. And if we handed power to the parents in this case, what precedent would that set for a child, for example, of a Jehovah’s Witness family who is denied a blood transfusion on religious grounds?
As the case descended into rancour, Charlie’s parents distanced themselves from Seton-Marsden, and in a deeply depressing turn, staff at GOSH received death threats.
The American neurosurgeon who had offered hope to Charlie’s parents, Dr Michio Hirano of Columbia University Medical Center in New York, was accused of having a financial interest in the treatment he was promoting, something he denied. In a statement, GOSH condemned him for this, and when he finally examined Charlie, on 17 July, he admitted nothing could be done for him.
To Connie and Chris – and Charlie’s Army – this was because the system had robbed them of the chance to intervene sooner. The chances had always been slim, they conceded, but at least there had been hope.
On Monday they conceded defeat in their battle, though there was still time for one more unseemly court spat over whether Charlie could go home to die. Instead he passed away in a hospice, with Connie and Chris declaring GOSH (who pointed out that the life support machine would not fit through their front door) had “denied us our final wish”.
It was a distasteful end to a harrowing tragedy. In the end nobody is happy. But where does it leave us? There is £1.3 million sitting in a fund, which the family have pledged to spend on offering other children the treatment their son was denied. Five years ago his case would have been a rare example of parents resorting to the courts to resolve a dispute over end-of-life care. Today, every one of the 24 paediatric care units in the country is dealing with at least one such case.
As Dr Peter-Marc Fortune says: “There has been a big increase in these cases, which is putting huge strain on the system. We all see how hard it is for the parents, and it truly is. The impact on the clinical staff is also massive. The levels of stress leading to people being signed off work, linked to cases like this, is rising significantly.
“It’s bad for the parents and for the clinicians. Nobody wins.”