Charlie Gard

Today’s news brings the announcement that the parents of little Charlie Gard have made the decision to end their fight to allow him to travel to America for an experimental medical treatment.  They will spend his last days together as a family, making the most of what remains of his tragically short life.

I’ve been watching this case with interest over the last weeks, and with deep sympathy for Charlie’s parents.  There’s no way to imagine what they’ve gone through.  Debilitating illness in a new-born child is every parent’s nightmare.  For Charlie, and for his parents, Connie and Chris, it has been twelve agonising months in the neo-natal intensive care.  Words fail to describe this kind of heartache.

But, I’ve been watching the case for another reason.  There is something far more significant going on here than a parent’s yearning for the welfare of a child.  Charlie’s welfare stopped being a matter of his health a long time ago.  When his parents first appealed to the courts they made it a matter of his human rights, and the courts, first the Family Division, then the Court of Appeals, then the UK Supreme Court, and finally the European Court of Human Rights, repeatedly ruled against them.  It seems that the justice system was unwilling to think in terms of rights and, in agreement with Charlie’s doctors, were determined to keep the matter focused on his health.

Is health a human right?  We live in an age that expects every problem has a solution and that, if only enough resources and effort are expended, any problem can be solved.  But, when a problem can be solved, and isn’t, or is declared insoluble, is someone to blame?  When a line is drawn stating that every conceivable effort has been made, especially in the matter of healthcare, does that mean someone has had their rights denied?  From the moment of his birth, and indeed, in the nine months that preceded it, Charlie has had nothing but preeminent, world-class healthcare.  He has been denied nothing.  But, in the end, his doctors agreed that his health, and his life, could not be saved.

British citizens are entitled to health care, but no one is entitled to health itself.  Health is not a human right, and it cannot be dispensed or guaranteed by the government, nor can a legal appeal to a higher court fix a health problem.  In Charlie’s case, I believe the courts were wise not to contravene the wisdom of the medical profession.  The legal system is intended to protect human rights, not human health.

I grieve for little Charlie, and for his parents.  They are facing a tremendous loss, and nothing can change that.  But, blaming the medical profession or the legal system won’t make their pain any easier to bear.  For Charlie, relief will come and, in death, he will find the rest and peace he has needed all his life.  I only pray that Connie and Chris will find the same for themselves.

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2 Responses to Charlie Gard

  1. Doug Swist says:

    I always enjoy reading your comments. Question as we don’t always get all the points of view here: Is there a right to self determination? The U.S. doctor offered an experimental approach, the parents raised the money, yet they were blocked from traveling to the States for the treatment? Why? Why should the NHS or the courts decide whether the child’s own parents can try this option or not, especially if it didn’t cost the government any money? Is this a question of power?

    I agree that health itself is not a right. But if I choose, with whatever unsubstantiated hope, to utilize some practice in an attempt to prolong or improve health, isn’t that my decision?

  2. revcarswell says:

    I agree, to a point. The papers never really clarified why they were denied permission to travel. However, doing so would have required a fully equipped and staffed “air ambulance,” which they were likely expecting the NHS to pay for. Doctor’s agreed there was no reasonable probability for success and the courts most likely agreed with that counsel. Yes, to your idea that we ought to have the prerogative to make our own decisions, but the government does have the right to intervene when parents stray beyond what is in the best interest of a child.

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