Wednesday 12th July

There is no denying the emotional appeal of this story.  A baby with a rare and almost certainly fatal disease has been in intensive care for nine months now.  His doctors say that he cannot see or hear or even move his muscles.  He is being kept alive on a ventilator and the Doctors insist that he has irreversible brain damage.  Those Doctors, at Great Ormond Street Hospital, believe that it is in Charlie’s best interests that he be allowed to die with dignity.  They want to turn off the machines keeping him alive.  His parents want them to keep him alive and they have taken his case to court after court trying to reverse the original court’s decision to support the Doctor’s views.  There is now yet another court hearing as the parents claim that they have new evidence of experimental treatments that they believe may help Charlie to recover at least to the point of enjoying some aspects of life.

I have no opinion on the medical aspects of the case.  There have been miracle recoveries with rare conditions in the past – and who can possibly tell what may happen in the future.  What is surprising is how this very sad story has snowballed into being sometimes the first item on the News.  Over 300,000 people have signed an on-line petition to the courts.  Donald Trump has tweeted his support, though maybe this was more to bolster his own image than out of real concern.  The Pope has added his support.  Many Newspapers are now running with the story, and one has to wonder at their motives.  It is obviously a good story, it will fill many pages of newsprint but whether it will actually help either the parents or the baby I doubt very much.  You cannot help but feel for the parents, and in a way they cannot really turn back now, no matter what doubts they may have.  To lose your child must be terrible.  But, to have a severely brain damaged child, even if there could be some improvement in his condition, must also be an awful burden.

I don’t blame the parents at all.  Or, of course the Doctors, who have to make these heartbreaking decisions.  But it seems a strange fact of our Modern life that this one poor baby, and his possible death has moved so many people.  Many of these same people will avidly watch the News, and be genuinely moved by his story.  At the same time they will ignore, or compartmentalize, the many other deaths reported.  Children starving, dying on refugee boats in the Mediterranean, being bombed to bits by our own planes in the fight against ISIS, or simply dying – as many do every day of lesser reported illnesses, or car accidents, or in fires or accidents at home.

And how much money all of this is costing.  The Hospital, where choices are maybe being denied other children.  The Court hearings, the Barristers and Solicitors costs alone must run into hundreds of thousands.  And it looks as if the judge will uphold the original Doctor’s view.  No doubt the parents will fight on.  And the poor baby, kept alive only by a machine and incapable of even thinking, must continue.  To say he is fighting is nonsense – his lungs are simply being kept going….for how long we do not know.  It is a terribly sad story, but I wonder whether in the fullness of time his parents will become reconciled to the inevitable.

And his story will become tomorrow’s chip paper, although of course we don’t use newspaper for that any more either.