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Charle Gard 21

403 replies

11122aa · 01/08/2017 12:03

While discussion is almost over I have set up this thread incase anyone wants to post any comments to posts in the previous thread.

OP posts:
lifebook · 06/08/2017 13:15

Nina honestly why do you stalk us? You are the one sounding weird tbh. You have criticised since the first thread Hmm

GriefLeavesItsMark · 06/08/2017 13:16

Other than wishing them peace, have no particular view on the parents. They did what they did in horrible circumstances. Feel free to advance search if you think I have ever been critical of them. I save my spleen for Charlie's army and feature world woman.

If you are looking for carions, why not try the feature world website. There is a special self-serving page about Charlie, where it is repeatedly asserted that the treatment couldn't worked because, the implication is, the doctors left it too late.

lifebook · 06/08/2017 13:20

Although I do agree that speculating over the parents' future is straying into tabloid territory.

Thymeout · 06/08/2017 13:31

Pacific I think, if anything, GOSH bent too far over backwards in listening to C&G and postponing the inevitable. I suppose they were hoping if they left no stone unturned the parents would eventually accept there was nothing to be done.

GOSH must have known about Hirano's work and that it wouldn't benefit Charlie before Connie found his name on the internet. If they'd removed his ventilation then, he wouldn't have had to suffer the fits which went on for a fortnight(?) and must have been horrendous. Unfortunately, he wasn't discouraging enough, and the judge said that he should reflect on his actions, which is pretty strong criticism.

That small seed of hope grew into a monstrous Triffid which had Connie talking about Charlie growing into a normal boy riding a bike, like some other child who didn't have the same condition but one with later onset and no brain involvement.

I don't know how clued up their legal team were. I know they became emotionally involved and their training is to represent their client. But they, too, contributed to the long delay, through appeal and the ECHR. Perhaps they were following the same policy?

There were a lot of people who should have known better, like Nick Ferrari, saying, 'What have they got to lose?' about taking Charlie to NYC.

Btw, I do think GOSH's statements after the court cases were admirably written. They acknowledged C&G's pain while making it quite clear that Charlie's suffering came first. Unfortunately, only the broadsheets reported them in any detail.

lifebook · 06/08/2017 13:34

Great post Thymeout

mydogisthebest · 06/08/2017 14:08

Nina, I find letting a photographer take photos of Charlie's last moments and then letting newspapers print them intrusive and tacky.

If the parents wish to have their whole lives played out in the media then I hardly think they would complain about a thread about them.

I was not being nasty when I said I doubt they will stay together but it is known that couples that go through a tough time together, especially death of a child, almost always split up.

I always think tough times should bring couples closer but it rarely seems to work that way. A friend whose work brings her in contact with couples in upsetting situations with children says probably 8 in 10 couples split

TheNightmanCometh · 06/08/2017 14:36

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whereismyparachute · 06/08/2017 14:54

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whereismyparachute · 06/08/2017 14:55

TheNightmanCometh to be fair, the daily mail interview that they gave brought the issue up of having another child and they themselves discussed whether they would.

I agree that it's not something I would venture in to.

Maryz · 06/08/2017 14:58

This reply has been deleted

Message withdrawn at poster's request.

mydogisthebest · 06/08/2017 15:01

I agree that if they are talking about having another child and telling it to the world why on earth are we not meant to mention it?

I honestly could not care less whether they have one or not - I am pretty sure I wouldn't in their circumstances but it is up to them.

derxa · 06/08/2017 15:02

I hope they do. Not another child to replace Charlie - no child will every replace a child who has died - but another child who is healthy and with whom they can be the normal happy family so many other people are lucky enough to be. Yes I hope so.

nina2b · 06/08/2017 15:36

whereismyparachute

nina2b you actually stalked me on these threads when I was under another name and told me that you were reporting everything. I was talking to MNHQ about it.

That is an absolutely outrageous - and libellous - thing to say. I have never "stalked" anyone here or anywhere else and I take exception to your ridiculous accusation.

nina2b · 06/08/2017 15:38

anyone reading should be aware that nina doesn't come to these threads in good faith. Interpret everything she says in that light.

Hmm
TheNightmanCometh · 06/08/2017 15:50

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whereismyparachute · 06/08/2017 16:26

Libellous Grin

SomeDyke · 06/08/2017 16:57

Thymeout -AFAIK putting him on a ventilation in the first place went to ethics. Removing it without parental consent, GOSH would have gone for a court order. They didn't because they were looking at nucleoside bypass therapy until the fits and the severe brain damage. That was when GOSH moved from possible therapy that might extend and improve his quality of life, to it being prolonged to his disadvantage. If it had worked as it did for the TK2 patients, it would have given Charlie more quality time.

thatdearoctopus · 06/08/2017 17:21

Oh, nina, do go away. You're de-railing the thread and no-one's interested.

SomeDyke · 06/08/2017 17:25

Actually, I seem to recall somewhere that it was a tracheotomy that went to ethics and was not approved,...........

scottishclive · 06/08/2017 18:39

Don't feed the trolls!

But Everyone's is entitled to their own opinion.

TheNightmanCometh · 06/08/2017 19:21

Snort at libellous.

Bet I know who reported my deleted post though. Do an advance search before paying any attention to someone kids, that's all I'm saying. Be safe!

Thymeout · 06/08/2017 19:30

SomeDyke - thanks for that. Yes. I think it was a tracheotomy, which they thought he would need if ventilation was going to be long-term. I think everyone was surprised by how rapidly he deteriorated. It was the damage to his kidneys and heart shown in the scan that seems to have been the clincher.

lifebook · 06/08/2017 19:41

Yes funnily enough I had two posts deleted (under a different name) for the first time in 15 years! Anyhow, let's not digress.

SomeDyke · 06/08/2017 19:44

That is the devastating thing about this and related conditions that they attack multiple organs and bodily systems. Well, every cell in effect. You can understand the urge to develop treatments since they know what is wrong! But then given that in related disorders, there can be developmental effects inutero as well.......even by birth it may have already been too late.

Rhubarbginisnotasin · 06/08/2017 19:45

It's fair enough to talk about them having another child, as the article by their publicist actually talks about it, quotes them as saying they would need IVF etc.

I agree. They brought the subject up in the press.

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