It’s a heart-breaking case – and a brain-breaking case too. What is best for the critically ill baby Charlie Gard? A year ago he wasn’t merely unknown: he wasn’t even born. Today millions of people around the world know about him and the rare medical condition that affects him. His mitochondria, or the tiny energy-factories inside his cells, don’t work properly and leave him unable to breathe or move without a respirator.
At the moment, there’s no guaranteed treatment for the condition and some medical experts, including those involved in his treatment at Great Ormond Street Children’s Hospital, think that it would be in his best interests to be withdrawn, allowing him to pass away without any further suffering. Understandably, his parents Charlie Gard and Connie Yates disagree. They want Charlie to be flown to the United States, where he can receive experimental treatment that gives him a small but definite chance of survival.
They’ve received huge public support both in the United Kingdom and in the United States, where even President Trump has spoken out on behalf of Charlie’s parents. The Pope too has given them his support and two congressmen in the US, Brad Wenstrup and Trent Franks, are sponsoring a bill that would grant Charlie lawful permanent residence and allow him to receive the treatment he is presently being denied,
Inevitably, the dispute has moved to the courts. Great Ormond Street Hospital won a hearing that said it was right for doctors to have the final say in whether or not to withdraw life-support. But the legal arguments are not over. One of them, indeed, is that of whether legal arguments are appropriate. Should judges have the right to over-rule the wishes of Charlie’s parents and hand the most important decision of all over to the medical profession? Like the doctors, the judges are not Charlie’s flesh-and-bone. They aren’t connected to him by the most intimate of all bonds: that between a parent, and particular a mother, and a child.
But some would say that the best decisions, whether medical or legal, are made by those who are able to step back and look at things from a neutral perspective. Charlie Gard and Connie Yates naturally feel enormous emotion at the thought of losing their son, but does their blood relationship make them the best judges of what is in his best interests? Their many supporters, who call themselves Charlie’s Army, think that it must do, but Neena Modi, the president of the Royal College of Paediatrics and Child Health, has put forward an alternative view.
She has said that the interest of the media and the intervention of figures like President Trump and the Pope have been “unhelpful”, because neither the media nor the President and the Pope have all the necessary medical information required to reach good judgement. Indeed, she herself does not have that information, which, due to doctor-patient confidentiality, is restricted to Charlie’s family, the doctors treating him, and the legal teams on both sides of the case, who are also bound by strict rules of confidentiality.
Some people will find it easy to decide the rights and wrong of this case, whether they decide that Charlie’s parents must have the right to choose what they believe is best for their son or that the doctors treating him must have the final say. Most of us will probably be able to see good arguments on both sides. The choices are agonizing and it’s fortunate that so few people have to face them. That’s one reason that the story of little Charlie Gard has become so widely known and widely discussed. As outsiders, all we can do is hope or pray that the outcome of the case is truly what is best for him.