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AIBU?

Charlie Gard case

999 replies

LovelyBath77 · 06/07/2017 09:41

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

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drivinmecrazy · 06/07/2017 13:10

If you want to see the strength of the CA protests and how many of the armchair warriors are mobilising themselves you might want to have a peek at their FB page now, live streaming protest in Bath.
I counted four of them though one or two may just be passers by.
Just shows how they have misjudged the strength of their support

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Redglitter · 06/07/2017 13:13

So much easier to be a keyboard warrior than go out there and pit your money whete your mouth is

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DeleteOrDecay · 06/07/2017 13:13

The thing that gets me is the merchandise they are selling to raise money. Money for what exactly?

He needs to be allowed to go peacefully, this whole thing has turned into a complete circus. I do feel for the parents but this has gone to far now.

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DearMrDilkington · 06/07/2017 13:14

I'm so sorry to hear that stop. This whole media circus is making me furious now, there are so many children that will be terrified of gosh now. All the special relationships children have made with nurses and doctors there, will now be ruined.

All due to lies and keyboard warriors that have no idea what they're talking about.Angry

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Ceto · 06/07/2017 13:23

I wonder how the members of Charlie's army would feel if it is their child who can't get an intensive care bed because it's occupied by a child who cannot possibly benefit from it?

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ARumWithAView · 06/07/2017 13:24

WhiteCat, Charlie's parents have repeatedly rejected medical information. They apparently do not believe he is non-responsive or terminally ill. GOSH deals with many incredibly sad cases of end-of-life care, and there is absolutely no evidence that their explanations to parents are ever 'this is happening, end of story'. Given the situation, it's overwhelmingly likely that all justifications have been made to Charlie's parents, but they simply don't accept them.

No wonder this case is used to scare Americans re social health care.

The words 'used' and 'scare' being the key points.

One point which almost never seems to be mentioned in any of the CA rhetoric is whether Charlie is suffering. It's always: what is there to lose, by transporting him home? What is there to lose by taking him to Italy, to America?

The loss is days, weeks and possibly months of an incapacitated infant continuing to experience pain.

'The Great Ormond Street Team believe that Charlie can probably experience pain, but is unable to react to it in a meaningful way. Their evidence was that being ventilated, being suctioned, living as Charlie does, are all capable of causing pain.'

The only response anyone's ever got to this with Charlie's Army is dismissive crap about 'well, if he's in pain, the hospital should be done for neglect'. There is absolutely no recognition of (or interest in) the complex issue of ensuring adequate and constant pain relief for an infant who cannot speak or even flinch; whose responses to procedures and seizures are mainly measured by brain activity and heartrate. There is no 'pain OFF' button for non-communicative people with complex medical needs. You cannot just pump someone full of morphine or other drugs: you risk complicating existing conditions and creating new ones. There is a limit to how much you can safely do, and GOSH clearly have reason to believe they have reached this limit.

The fact that GOSH have let this go through all the trauma, disruption and expense of court cases is that the medical professionals there truly believe that there is good reason to assume Charlie is suffering. Read the High Court decision and see how many medical opinions, from multiple institutions, have validated this.

Send him here, send him there, try this: what's there to lose? CA keep accusing medical professionals of murder, and yet are wilfully oblivious to and dismissive of a child's prolonged suffering. It may be certain religions' beliefs that earthly suffering is inconsequential in the greater scheme of things, but that's not the theology on which we run our hospitals and courts.

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mydogisthebest · 06/07/2017 13:38

I guess it is because of the grief they are suffering but the parents seem to have totally lost touch with reality. They are accusing the doctors of lying, of pretending he has brain damage and they say he is not terminally ill.

That poor baby cannot see, cannot hear, cannot move, cannot cry even if in pain (and the doctors believe he is) and is suffering seizures. He is effectively existing (certainly not living) in a dark, silent, painful hell.

Of course I have sympathy for the parents. I cannot, obviously, even begin to imagine what they are going through. Bad mouthing the doctors though and accusing them of lying when they know the doctors cannot answer back is out of order.

GOSH is a world renowned hospital with doctors and nurses who have to deal every day with very sad cases. They don't become doctors for fun. They don't decide "oh I can't be bothered any more with that baby" and it's disgusting to suggest they do.

I hope it is just the grief speaking but the crazies in the barmy army are encouraging the bad mouthing and the complete inability to believe that Charlie is dying and there is nothing anyone can do - not the doctors, not a doctor in America or Rome, not the Pope or the idiot that is Trump.

The kindest thing now is for the parents to let Charlie be at peace and have some dignity. He certainly doesn't have much dignity now especially with the tacky air fresheners, keyrings etc being sold.

I look at the pictures of him and his eyes show no life, no hope, only pain and distress.

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ARumWithAView · 06/07/2017 13:39

I know I've already written a massive post, but I do want to add that there's a difference between Charlie's parents and Charlie's Army, whatever the links. I think that Charlie's parents genuinely don't believe he is in any significant pain, and would not want him to experience any, whereas most of the CA just can't be bothered thinking about it.

Charlie's parents love him. Most of Charlie's Army just want in on a collective story of Success Against All Odds, Achieved By Everyday Heroes.

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Racmactac · 06/07/2017 13:41

I have huge amounts of sympathy for the parents but this little boy would be dead now if it wasn't for the machines keeping him alive. I've read the court papers and I agree with the court decision.

I can't help but wonder how they are actually going to turn those machines off however, that poor member of staff and the reactions of the parents and family is going to be very very difficult to deal with

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Zoflorabore · 06/07/2017 14:17

Please excuse my ignorance but what happens now? I know at the weekend the parents were given a bit more time to say goodbye and then all of a sudden it's world wide news with Trump involved and the pope.
Do they have extra powers?

I find it all incredibly sad. I am a mum too. I am also a realist and if enough expertsare saying the same thing, it's safe to say it's true.

I believe the parents are in total denial, that's not a criticism but an observation, I have seen denial in parents with other medical problems but not to this extent.

The kindest most loving thing Charlie's parents could do for him would be to let him go, the irony here is that by them behaving this way they are prolonging his agony.
Very sad all round and I wouldn't wish it on anyone.

To add- I have had a look at CA. They've been talking about clubbing together for a minibus to take them to London and saying how much they "love" Charlie.

NO THEY DONT. They don't know him.
What's scarier is that most of these lunatics are parents themselves.

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DearMrDilkington · 06/07/2017 14:27

A lot of the CA's protests seem to be a load of woman standing around looking awkward with blue balloons.

With lots of gushing comments consisting of "well done hunz"..

They are completely batshit crazy.

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mydogisthebest · 06/07/2017 14:28

Of course Charlie's parents love him and now they need to show that love by letting him go. They are prolonging his suffering.

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Redglitter · 06/07/2017 14:30

Do they have extra powers

No, they're basically getting involved in something that's nothing to do with them.

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JonSnowsWhore · 06/07/2017 14:33

Ah just seen there's a cake sale at a church in my area on a Tuesday for GOSH. It's a little bit of a drive but I think I'll pop along with the kids Smile

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DearMrDilkington · 06/07/2017 14:34

I say a load of woman, realistically it's around 6 woman on each video "protesting".

Although on one of the videos, they seem to be doing a march with lots of shouting about letting Charlie try the treatment....

Lots of fed up toddlers stuck in pushchairs with blue balloons tied on too.

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DearMrDilkington · 06/07/2017 14:35

Oh that's lovely jon. They really need all the support they can get after all this.

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Rach5l · 06/07/2017 14:41

How the hell doctors(or randon people on internet) can say that it's in Charlies "best interest" to die at hospital and not at home????

You dont just turn off a life support machine and they slip away quietly. He may well be in distress & pain during death. He may suffer a seizure or heart attack. Death has to be very carefully managed to make it as comfortable and dignified as possible. I cant see how any of that could happen at home or hospice and in all likelihood would happen en route Sad

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LovelyBath77 · 06/07/2017 14:51

Maybe they should consider donating the money raised to GOSH?

What are the CA doing in Bath? He's not here, he's in London ?!?

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MirandaWest · 06/07/2017 15:02

The protests are happening everywhere so that "they" listen.

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LovelyBath77 · 06/07/2017 15:02

There's like two or three in Bath wandering with posters saying 'don't KILL Charlie Gard"

typical comment beneath-

"Start asking random people if they think its okay to kill a little 10 month old baby.. see what they say as they walk past ignoring that they could help save him. So to me them people walking past are just as guilty as GOSH"

batshit

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MirandaWest · 06/07/2017 15:03

There is a protest planned for later on today in Downing Street as well

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LovelyBath77 · 06/07/2017 15:03

Poor unsuspecting lady with baby and toddler seems to be stopping..glad don;t have to go through centre today

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hippogriffwobble · 06/07/2017 15:07

Argh,I have been reading but not posting but now I have to say something...

I have nothing but sympathy for the parents - I've been there and I had to make the decision to turn off life support for my beautiful baby girl (genetic condition). I wouldn't wish this pain on anyone, it's beyond horrific.

However, I consulted with specialists, I sent her scans to doctors around the world and had multiple second opinions. The consensus was the same, her life would be limited - always on life support, pain management, multiple invasive operations... so much more but i am not going to go into detail here.

But, making the decision to let her go peacefully was, to me anyway, the most extreme act of love, and I know there are people who will disagree with me. It was excruciating, and every day I wish she was still here, I wanted her to survive... I wanted a miracle which, realistically, was never going to happen I also didn't want my beautiful baby to suffer.

The medical staff were incredible, EVERYTHING was transparent, every single option was given to me - including the option to transfer to another hospital if I didn't agree with their treatment. This was not in the U.K. But it doesn't matter, some of my consultants had worked in GOSH - if that's at all relevant. And I don't think it is - medical staff are incredible everywhere. I have so much respect for them.

The staff were distressed too - I will never forget the young doctor who, after a 24 hour shift, stayed around to be with us because he knew her story and wanted to be there when she passed. 12 hours later. He napped in a room near nicu and came in every hour. His compassion and care was extraordinary and I know he would have done anything he could have to save her. Sadly, sometimes that just isn't possible.

Sorry, this is a long emotional post. I guess my point is that I have NO doubt that GOSH has always acted in Charlie's best interests. It's hard, it's really fucking hard to turn off life support. It's shit. But to suggest GOSH are lying/covering up etc.... i just can't

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JaneEyre70 · 06/07/2017 15:11

hippo I am so sorry for your loss Flowers.

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JonSnowsWhore · 06/07/2017 15:13

I don't know where 'on a Tuesday' came from, meant to say this Saturday. Honestly my head is up my arse with this heat, I'm not even checking what I'm posting. Clearly need some cake & a lie down!

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