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Original poster

Charlie Gard 10

999 replies

user1498911470 · 15/07/2017 23:26

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

OP posts:
Thread gallery
9
DarthMaiden · 15/07/2017 23:51

Yes - you are right it's a futile effort. As the quote goes - you can't argue with stupid; they beat you down with experience.

My worst fear is if Charlie is treated and does improve, but only to the extent that he is more aware of his condition but still has no quality of life Sad.

FallenUnicorn · 15/07/2017 23:53

Sorry my post was at samcro mainly. Oh right ok. Just wondered why you found it weird. I guess it's touched all of us here in one way or another, have you read the threads? As if so you might understand a bit more then.

Sostenueto · 15/07/2017 23:53

This reply has been deleted

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SerfTerf · 15/07/2017 23:53

@Samcro at least half the people on these threads have a particular interest in Great Ormond Street, personal experience of ICU or are HCPs. Does that explain slightly?

I first started to pay attention when protests outside the hospital were threatened and then medical staff were identified publicly in breach of the court order.

heavenlypink · 15/07/2017 23:56

Can I ask how do people cope with friends who are on the side of CA? Politely, smile and nod, try to contain yourself or give them your view? I've had no face to face altercations but have seen posts relating to CA petitions/views. I suspect my friends will be aware of my opinions as I am a big supporter of Dignity in Dying and should any treatment go ahead and be 'successful' dignity (imo) is one thing Charlie won't have

Maryz · 15/07/2017 23:58

This reply has been deleted

Message withdrawn at poster's request.

cheeseandvino · 15/07/2017 23:58

Hello can I ask a question - were Charlie's Mri scan results leaked - it looks like it in twitter (but I am late to it as have stayed off Twitter)

Anyhow is one of the Charlie army people have done it (i.e. Assuming it is real) then what are the consequences?

I saw the GOSH had asked to desist from sharing confidential records but what are the consequences for the individuals that are say posting confidential medical information l?

Samcro · 15/07/2017 23:58

i suggest before slagging me off, you ask posters like Maryz about me.
when you have been to as amy funerals for children as I have then you can judge me.
these threads are wrong....wtf will you do if and when this child dies? will you offer the parents support ...or slag the off??

PickAChew · 15/07/2017 23:59

@Samcro if you had read these threads, you would realise that the commentary is nothing like you keep claiming it is.

Most of us care about what is best for Charlie. A few more day, weeks or months having air mechanically forced into his lungs to keep whatever cells he has in his body that can still metabolise metabolising, is, IMO, not what is best for Charlie. Other posters' MMV.

Sostenueto · 16/07/2017 00:01

Heavenlypink there will always be people whose opinion is different to your own. It would be a boring world if there weren't. If these are valued friends and you don't want to upset them then you can ignore the subject and their posts about it or you can put your opinion across. If they are good friends then they will debate with you as we do here and you both may learn something from it. If they get offensive then press that unfriendly button. Simple us as simple does.

PickAChew · 16/07/2017 00:03

And to concur with Maryz, Samcro is a long time MNer. That doesn't automatically infer the same POV on this particular subject, of course.

LeMesmer · 16/07/2017 00:03

I have followed all the threads, but only commented a couple of times. I really can't say if I was Connie I would be doing any different. I would like to think I would, but when I think of DS, I am not sure I would. The desire for your baby to live is so strong I may well have done the same. I don't think she is right but I can't really condemn her for any of it. The ones I don't understand are the family who despite being close are one step removed. If my DS was so ill as Charlie I would expect my DSIL and others to be quietly and compassionately trying to persuade me to listen to the doctors and see that for him, the desire for him to live fulfills my need and not his best interests. I would be doing that if it was my DSIL, and I hope she would do the same for me. Not whipping up an online frenzy with strangers.

SerfTerf · 16/07/2017 00:06

Speaking of supporting GOSH, my mugs arrived and they are really lovely, weighty ones. I've ordered some more as Christmas presents.

Charlie Gard 10
Charlie Gard 10
BoreOfWhabylon · 16/07/2017 00:06

I'm pretty sure Samcro's not a troll.

She doesn't agree with most of us on these threads but calling her a troll is the sort of thing many of CA is doing to any dissenting voice of their FB page.

Sostenueto · 16/07/2017 00:06

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Sostenueto · 16/07/2017 00:11

OK then I'll rephrase that for the comfort if all concerned then for samcro especially. I am sorry you do not agree with people getting together to discuss something close to their hearts. I understand it may be a bit baffling to some. But I do ,however, uphold the democratic right of a British citizen to freedom of speech to say what I feel. I am sorry if this has offended people but I stand by my right to do so. I will, for the sake of peace refrain from doing it again. Good enough?

Seeingadistance · 16/07/2017 00:12

I, and a few others have mentioned the R4 programme which was broadcast on Saturday. A pp has linked to it on this thread, and mentioned Penny who was the last caller. It was heartrending to listen to her - she was extremely distressed and crying as she spoke.

She started by saying that 17 years ago she had a daughter who was still born and brought back to life. They had to make a decision very quickly about their daughter and decided that she should be taken off life support. She felt that it all happened so quickly and that they didn't have time to consider that decision. Then she says this ...

"Subsequently, we had a boy and we made the opposite decision.

And he is now having a hell of a life.

He’s … initially we chose to keep him alive and then he could breathe on his own, and now he can breathe on his own there is no chance to let him go.

And he has a horrible time. He has no quality of life. He has absolutely... He’s in pain. He’s going through hormonal changes as a teenager which he doesn’t understand. He just cries out in distress all the time.

It is so hard. It’s so hard.

But I do think. We did it for us. And not for him.

And I think. I think …."

I couldn't make out what she said at the very end because by that point she was so upset.

The presenter was very gentle with her and said that they were out of time, but that she would call her back. I have been thinking of Penny all day, and hope that by making this call she will be able to get some support and respite.

What her call highlighted for me in relation to Charlie Gard's situation is that what Penny is experiencing with her son is almost certainly better than the best outcome that Connie and Christ can hope for with Charlie.

BoreOfWhabylon · 16/07/2017 00:15

Sostonueto I am truly sorry you are so very ill but that doesn't give you licence to accuse a longstanding MN member of trolling.

Apart from anything else it's likely to get the thread pulled if you persist.

GinSoakedTwitchyPony · 16/07/2017 00:16

Just caught up.

Acrossthepond thank you for your informative post on the previous thread.

I'm another who had a chuckle at the chihuahua.

I'm not feeling strong enough to cope with listening to the R4 programme, hopefully will do in a few days time assuming it's on iplayer.

SerfTerf · 16/07/2017 00:17

@Sostenueto it is true that @Samcro has been here for years and disagreeing strongly doesn't make someone a troll.

It's completely understandable that you take the criticism to heart though Flowers

affectionincoldclimate · 16/07/2017 00:24

@Seeingadistance
Thank you for posting it here as transcript.
I thought of Penny all day too and couldn't get her voice and heartbreak out of my head. In a sea of opinions, her experience and her utter gut wrenching honesty about it made it so very real.
And yes, even if we consider all the hopeful ifs and treatments, this is what GOSH is trying to avoid happening to Charlie.

LakieLady · 16/07/2017 00:25

If my DS was so ill as Charlie I would expect my DSIL and others to be quietly and compassionately trying to persuade me to listen to the doctors and see that for him, the desire for him to live fulfills my need and not his best interests.

That's beautifully put, LeMesmer, and it highlights why, sometimes, parents are not the best people to make these decisions.

Sostenueto · 16/07/2017 00:26

I was only defending all posters on this thread. We have done great things in the last week, constructive things. I do not ask, want or need any concessions for my illness. I am sorry if it offended people but am upset that people could not see I was actually defending them in an unsubtle way I know, but I am rough around the edges.SadSad

SerfTerf · 16/07/2017 00:28

I know you were Sost

milliemolliemou · 16/07/2017 00:29

I don't think anyone on these Charlie Gard threads has anything but heartfelt sympathy for his parents and best wishes for Charlie himself. Many of the posters have lost babies or children in similar appalling circumstances.

The first problem has been the changing message of Charlie's parents - undoubtedly as they got what they believe are life lines for him - from letting him die at home with us, to letting him travel to the US, to letting him have an untested treatment for his rare form of an even rarer mitochondrial problem. The second problem has been what most people on MN see as misinformed hatred stirred up against the staff of GOSH and legal representatives including death threats. The third problem is an unresolvable division between those who believe any life - even if deaf, dumb, blind, immobile and suffering (who knows?) - is better than no life.

The fourth and graver problem is how to deal with such problems in the future given social media and its ability to allow people to voice their opinions without knowing the facts (that includes MN, FB, Donald Trump et al). I understand the solicitors on both sides of this case were pro bono, but the court time and barristers won't have been - if this is the future, the NHS will fold sooner rather than later, doctors and nurses will leave rather than be harrassed and threatened, and the Charlie Gards of the future will not even have their first chance of life.

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