Charlie Gard finally at peace

Initially, it felt wrong to say much more about it than that. So I didn’t.

A day has passed.

Many lessons are being learned, and Charlie Gard’s life and death have not been in vain. I too will be doing a write-up. For the sake of future Charlies and future babies’ parents, but also for the sake – I hope – of all the people who were touched by Charlie Gard’s short life. Towards greater understanding, I hope. Towards more compassion, too.

(Personally, I primarily do it to learn from it and because I enjoy the analytical process and the reasoning. But all the people who write about these issues help pave the way to a future in which we deal with such situations much more elegantly.)

I too felt torn the way everybody else seemed to be torn, and I too generally responded more emotionally rather than rationally to what I read here and there, and I too, like almost everybody else, didn’t have many facts.

Charlie Gard’s condition fell within my definition – not my feelings! – of what constitutes a life not worth living. We need objective definitions to prevent inequality and injustice, and, more importantly, to prevent harm.

I also seem to have managed to define harm for situations like these a while back, and having let Charlie Gard try the nucleoside therapy does not appear to qualify as such within my definition (which I need to write up properly). Whether or not Michio Hirano had a financial interest in the matter is immaterial.

So I have a lot of thinking – and writing – ahead of me, but it looks like my definitions continue to hold up. That comes as a surprise. It makes me conclude that I may be doing something good and useful, something worthwhile exploring.

That’s scary – for several reasons – and powerful – empowering – at the same time.

I will soon post something about my own experiences with this kind of pain and suffering – the medical kinds of pain of suffering – in view of the fact that I say so many things about other people’s pain and suffering in such situations, in what may occasionally come across as a cold and calculated manner to some.

Playing God

There was a time when doctors were being accused of playing God when they helped patients stay alive. Now they’re accusing doctors of playing God when doctors don’t want to force a baby who isn’t viable to stay alive. (Alive?)

There is a lot wrong in the medical world. I agree. And I too have had to tell doctors things they didn’t know about although they’re supposed to be the experts and I admit that it used to surprise me. Discovering that I sometimes knew more than the doctors I went to for advice.

I don’t have the impression that the Charlie Gard case is one of those.

Charlie is being abused, by having been forced to stay alive this long. He is NOT fighting.

After having been forced him to stay alive – against nature – for so long, the decent option is now to let him have that experimental treatment, as I’ve said in a previous post.

But what will happen if the treatment has no effect? There will be more accusations, more lawsuits and more media drama because this stopped being about Charlie Gard a long time ago.

They will then fight to continue to keep him on a ventilator. (The disagreement in court yesterday about what one of the parents apparently had said three months ago seems to indicate that, along with the statement that the parents will continue to fight for the baby as long as he continues to be on a ventilator.)

That said, there are no 100% guarantees in medical matters. Sometimes, someone does wake from a coma twenty years or so later. True. But someone who ends up in a coma used to be viable. That makes a big difference. It means there was a well-functioning body with the healing abilities that entails.

http://www.independent.co.uk/news/uk/home-news/charlie-gard-army-high-court-medical-experts-great-ormond-street-hospital-murder-doctors-lying-a7840236.html

“We will not be silenced,” they chanted.

Like I wrote above, this ceased to be about a little baby a long time ago. (I had that feeling from the beginning but I was not sure about it, and kept my opinion to myself until very recently.)

This is just as consumerist as wanting to design your own babies according to specs.

I hope that I am wrong about this. I do. I hope that they’ll take Charlie to the States and that a miracle occurs and he’ll grow into a strapping young man. But that’s not going to happen and I am afraid for little Charlie who is denied a say in this and who will also be denied a say if the treatment has no or no significant effect.

I heard a very significant mistake by an American news anchor yesterday.  She talked about the current “treatment”. But Charlie Gard is not being “treated” and the legal proceedings are not about GOSH wanting to stop a treatment, which some people apparently seem to think.

Read this, too (GOSH statement):
https://t.co/X9WHHjhl3u

Read also this (opinion piece in The Guardian):
https://www.theguardian.com/commentisfree/2017/jul/09/the-guardian-view-on-charlie-gard-reason-and-unreason?CMP=soc_3156

Also, there are huge differences between Charlie Gard’s situation and the situation of Ashya King and his parents, as I have mentioned before.

See: https://www.judiciary.gov.uk/judgments/judgment-and-family-court-orders-in-the-matter-of-ashya-king/

Ashya King is healthy now.

Charlie Gard matter in court again

Is all of this still about Charlie Gard, actually?

Or is this an expression of a consumerist view of children?

Been wondering about that for a while now…

http://edition.cnn.com/2017/07/10/health/charlie-gard-new-hearing/index.html

The parents seem to claim that Charlie is “fighting”. But if he was, he wouldn’t require life support. He is being kept alive artificially.

Charlie “fighting” would be to take him off life support and finding him able to live on his own, surprising them all.

https://www.theguardian.com/uk-news/2017/jul/10/charlie-gard-key-questions-answered

It’s true, though, that if this child had been in the US, the experimental treatment would already have started and doctors would have a better idea of how it would affect the child.

With the case having been dragged through the courts for so long, and the postponements in terminating life support and allowing the child a peaceful passing, it’s now becoming more logical to allow the kid the treatment, if only because he’s been forced to stay alive so much longer now and would already have passed away if it hadn’t been for the legal battle.

If this news article is correct, though, then the parents’ battle is not about what is best for Charlie, by the sound of it:

http://www.wxyz.com/news/national/baby-charlie-gards-parents-storm-out-of-court-hearing

“Yates interrupted Francis as he said that the parents had said they would not want to prolong Charlie’s life in its present state, only if there was hope of improvement. “I never said that!” she exclaimed from her seat behind her barrister.”

Let’s see if I can find this back in Joshua Rozenberg’s tweets. Yes. Though he does not specify what the disagreement was about.

 

Nature itself considers Charlie Gard absolutely not viable. That is a very strong clue. Nature does its best to limit lives not worth living as much as possible.

Forcing Charlie Gard to stay alive is like insisting on having a purple parrot if its natural color is green and the other color goes with, say, severe liver disease. That’s not about what’s best for the parrot.

(I apologize to those who feel hurt by putting it this way. Maybe I should add that I had a green parrot for 21 years and loved her very dearly.)