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Paul Vallely: The agonising plight of Charlie Gard

28 July 2017

An emotionally charged debate has amplified his parents’ heartbreak, suggests Paul Vallely


Tragedy: Charlie Gard's parents, Chris Gard and Connie Yates, speak to the media outside the High Court in London, after they ended their legal fight over treatment for the terminally-ill baby

Tragedy: Charlie Gard's parents, Chris Gard and Connie Yates, speak to the media outside the High Court in London, after they ended their legal ...

THE death of a child must be the hardest of be­reave­ments, going, as it does, against the natural order of things. A howl of des­pair from the parents is probably the only apt re­­sponse. Yet it is hard not to feel that the events that have surrounded the final days of Charlie Gard have made his par­ents’ anguish even worse (News, Leader, 7 July).

The medical disagreements, protracted legal debate, and vehement protests created a focal point for the displaced anger of the child’s tor­mented parents. But their heartbreak has surely been amplified by the emotional charge of the ethical debate, which has muddled parental rights and medical judgements.

Doctors did not simply disagree; aspersions were cast upon the bona fides of Professor Michio Hirano, the medic from the United States who was offering untested treatment, in which, it turned out, he may have had a financial interest. The parents insisted that medical and legal time-wasting had stolen their child’s life away. Medics said that they had wickedly been given false hope. The outraged reductive responses on social media created a mood in which hospital staff received death threats, and then the parents were hurtfully abused by the doctors’ defenders. Pro-life pro­testers from the US arrived to stand outside the court and chant emotive slogans.

When doctors insist that treatment is not just futile but probably painful, and yet parents are deter­mined to cling to even the smallest hope, it is in­­evitable that the courts will have to decide. Com­plaints, most particularly from the US, that the parents’ rights were being usurped by judges, together with calls for the law to respect the “natural right of parents”, misunderstood that, in the UK, children have rights independent of their parents. Were that not so, Jehovah’s Witnesses would be allowed to deny their offspring life-saving blood transfusions.

So how should judgements be reached here? St John Paul II offers some assistance in his encycli­cal Evangelium Vitae, which makes the distinc­tion between ordinary and extraordinary means of prolonging life. While robust in its opposition to euthanasia, it also rejects any medical interven­tion that is “burdensome” or “disproportion­ate . . . to the prospects for improvement”. Avoid­ing such treatments, he suggests, simply “ex­­presses acceptance of the human condition in the face of death”.

Close study of that document suggests that some criticism of the doctors and lawyers could validly be made. Behind their euphemisms about allowing Charlie to die “peacefully” and “with dignity”, they repeatedly alluded to the baby’s mental disability and brain damage. That spoke revealingly of our questionable social tendency to diminish those with disabilities — a propensity that Evangelium Vitae condemns asshameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of ‘normality’ and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well”.

Yet, overall, St John Paul’s guidance points to­­wards the same conclusion that Charlie’s parents eventually reluctantly reached: that, when the prospects for improvement had vanished for their tiny baby, they needed “to be able to prepare in a fully conscious way” for their son’s “definitive meeting with God”.

There is anguish enough in that for any parent. How sad that society has conspired to augment their agony in this terrible way.

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