Friday, 28 July 2017

An Unplanned and Chaotic End

Just two days ago, I shared some of my thoughts on Charlie Gard, a tiny English baby born with a congenital, terminal ailment that has destroyed his little body over the past year. 

His parents have struggled with the child's doctors and the hospital that has been his home now for most of his brief life. Chris Gard and Connie Yates, the parents of little Charlie, have been in a legal battle with the famous Great Ormond Street hospital in London (perhaps most famous as the beneficiary of the proceeds of the classic Peter Pan children's book and its offspring on stage and screen) over how best to care for the little boy.

The condition Charlie suffers from, "infantile onset encephalomyopathy DNA mitochondrial depletion syndrome," is incurable and ultimately fatal. An experimental therapy is available in the US, but has not as yet been demonstrated in randomised, controlled trials to be safe and effective, and thus remains outside the canon of approved treatments; Columbia University professors had agreed to allow compassionate use for little Charlie, and a "Go Fund Me" charity was set up that would have more than paid for the expense of bringing the child and his parents to New York, but in the UK, doctors can block treatments, even if the parents wish that their child receive them, if they decide that the treatments are not in "the best interests" of the child.

Ultimately, the High Court agreed with the doctors, and Charlie was not allowed to come to the US.

The final wishes of the parents of Charlie were that he be allowed to return home for his final day (or days), away from the hospital, the noise, the press. The lawyers for Great Ormond disagreed, and again, off to court the case went.

Today, a decision has been handed down by Mr Justice Nicholas Francis that Charlie is not to be sent home, but rather, to a nearby hospice. The reason given was that such a move would be "too dangerous" and might bring about an "unplanned and chaotic end to Charlie's life," according to reports.

The story itself is extremely distressing - no little boy deserves this sort of fate; nor does any family. 

I asked then, and now, what defines "humanity?" I would think, how we take care of the truly helpless in our midst. Surely, a little boy qualifies, doesn't he? Have the courts acted humanely? I'm not so sure.

When someone dies, especially unexpectedly, we often hear how the person died "suddenly."

Life - and its cousin, death - are like that. For all of us. Death is always sudden, isn't it? You're alive. And then you aren't.

"An unplanned and chaotic end." The very words, issued by the hospital defending its choice, are haunting.

Death is almost always "chaotic and unplanned," isn't it? 

Charlie Gard will be one year old if he is still alive in one week - his birthday was on the fourth of August last year.

I think Charlie Gard has deserved better than this in his final days.

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