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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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.

OP posts:
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Maudlinmaud · 07/07/2017 15:57

Myrtle to some extent I agree with you. I too have tried to be balanced in my posts but I can understand why posters are judging the parents. This case is not about them, it's about their child and from what the medical experts have said he has no hope of a future. Now there is new evidence at the 11th hour, that a drug which has never been trialled on humans is to be used on that little boy, with a very small chance of it making any difference.
I have said before and I'll repeat myself like a broken record, if that's what the parents want then let them get on with it. They must live with the consequences. The medics disagree and think this will cause the child more harm and distress. So I can understand as I'm sure you can too, why people feel strongly and are opposed to this.

User843022 · 07/07/2017 15:57

'I'm dyslexic I can't spell well . but thanks for calling me an Idiot '
Indi your posts were completely legible. Totally unnecessary when someone stoops so low to correct 'their/they're on such an emotive thread.

Stopnamechanging · 07/07/2017 15:59

I hope that Quack is okay, she has disappeared.

hulahooper9876 · 07/07/2017 16:00

I'm dyslexic I can't spell well . but thanks for calling me an Idiot .

How convenient.

However, I was primarily calling you a fool because you clearly have no understanding of this poor boy's condition. Your grasp of the facts of the case is rudementary at best, imbecilic at worst.

Stopnamechanging · 07/07/2017 16:02

Maudlinmaud I agree, it's very dangerous when by dint of the fact that someone has a very unwell child, they become untouchable too and get elevated to being some sort of saintly being.

I am the mother of a child with a disability, I am no nicer than the next person because of that and my actions are not without scrutiny.

DarthMaiden · 07/07/2017 16:03

Hula to be fair I don't think people are "fools" because they support Charlie's parents, however articulate (or not) they are.

There are some people who genuinely feel that withdrawal of life support is morally wrong. I don't subscribe to that view, but I accept people are entitled to have it.

What I find most concerning are people who don't particularly share this moral ethos but who seem incapable of grasping that the treatment offered is untested on the variant of Charlie's condition and that even if it was successful in countering his condition it cannot undo the brain damage he has sustained.

Their arguments are based on an assumption that it will be possible for Charlie, with treatment not just to survive, but to thrive.

Goodness knows how much any of us wish this was true. However it's not.

Yet because they believe this, they think it's reasonable to make false allegations about his care, because if their premise is true then there is no reason to deny treatment. In fact denying treatment is cruel.

This is why the lack of balance about the information on Charlie's condition is driving this media frenzy. Giving interviews about how he is "responsive" and "doing well", providing misinformation about the significance of the MRI, talking about treatments having a 10% chance of working (but not disclosing it will not address the issue of brain damage already sustained) etc all point to drawing many people into supporting CA because the medical staff treating him cannot explain or refute these claims.

As such people prepared to take these statements on face value without researching the evidence can and do come to a conclusion that there is hope. I don't think it make someone a fool. I do think it makes them uninformed and maybe threads like this can serve to better balance the reality of a very sad situation.

User843022 · 07/07/2017 16:03

'I can understand why posters are judging the parents. This case is not about them, it's about their child '
Yes I agree, but as I said upthread their confusion is understandable to a degree. they have been given conflicting messages from other drs from America. They clearly don't have a relationship of trust with the medics and imo it has been handled badly, I cant believe going to court was ever thought to give a resolution.

While its all a tragic mess there is no need fo CA or mnetters to be soo vitriolic to those with other opinions.

notaslimceagirl · 07/07/2017 16:05

rudimentary

Alittlepotofrosie · 07/07/2017 16:06

@Stopnamechanging oh i know the medical staff won't be thinking of bed numbers. Ive seen comments made on various MN threads like "just think if your child needed an icu bed and you couldn't get one because of charlie's situation". I paraphrase but that's the general gist. The lack of icu beds isn't charlies fault, and its pretty sick to mention that alongside charlie's name.

SerfTerf · 07/07/2017 16:09

Bed space is a red herring.

Maudlinmaud · 07/07/2017 16:10

Myrtle I hope HQ don't delete. I have found it very informative and have been touched by other posters personal stories. I don't think there is any need for personal attacks on anyone. But it has been quite shocking too, I myself was left feeling that way earlier with one of the revelations of today.
All the while there is a little baby who might possibly be at the end of his short life, this should be a time for kindness and support but it has all gone horribly wrong.

hulahooper9876 · 07/07/2017 16:10

This reply has been deleted

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

Maudlinmaud · 07/07/2017 16:11

stopnamechanging BrewCake

User843022 · 07/07/2017 16:12

hula and again! Have you no filter irl too?

Stopnamechanging · 07/07/2017 16:12

Maudlinmaud ha, thanks, more like Wine today Grin

User843022 · 07/07/2017 16:13

'All the while there is a little baby who might possibly be at the end of his short life, this should be a time for kindness and support but it has all gone horribly wrong.'

Yes I agree with that.

hulahooper9876 · 07/07/2017 16:15

hula and again! Have you no filter irl too?

I don't believe I was talking to you, Myrtle. Have you no manners in real life?

Maudlinmaud · 07/07/2017 16:16

stop I'll join you, after a quick dash round sainsburys. Hopefully they will have something red on offer.

User843022 · 07/07/2017 16:16

Well, its a public forum so whatever vile unpleasantries you post are there for all to see. Obviously.

LogicalPsycho · 07/07/2017 16:17

From The Sun (via Featureworld, the Parents' press representative):

"Charlie pictured holding his passport, in an image released by his parents as they attempt to sway the courts into letting him travel to the US"

He is now being photographed with stage props to further the agenda.
Poor, poor boy.

Charlie Gard case
DarthMaiden · 07/07/2017 16:19

Jayne in response to your question re: why GOSH haven't simply followed the court order to withdraw life support...

I'm not sure how they can. Whilst the parents remain committed to keeping him alive, even with the court order in place, how could you possibly ask any of the medical staff to take the steps to do so?

In most cases, this is obviously done with the support of the family and the process and timing are agreed. It must be traumatic and terribly sad not just for the parents but also the staff who will have cared for the patient often for long periods of time.

Imagine having to do this whilst there parents are screaming at you to stop or physically blocking you? I'm not saying that would happen but it's obviously possible.

The reality is that there needs to a way found to agree a forward plan in which his parents feel able and willing to participate. That may mean maintaining the status quo for some time yet.

hulahooper9876 · 07/07/2017 16:19

This reply has been deleted

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Ellie56 · 07/07/2017 16:20

That photograph was taken weeks ago. He looks quite ill in the more recent photos.

strawberrypenguin · 07/07/2017 16:20

I feel desperately sorry for the GOSH team and Charlie in all this. I think GOSH need to make the call to end treatment as ordered by the courts and put and end to the circus this little boys life has become.

While I feel for his parents too, I can't imagine how painful it must be for them, I think they need to face up to the fact that they really aren't doing what Charlie needs. I hope that in the fullness of time they don't look back and regret their actions now.

indigop · 07/07/2017 16:20

Hula I did not say i think the doctors I wrong I haven't told you my opinion on Charlie's condition because it's not for me to pass judgement ! I said I feel for the parents and the baby &as parent i would do anything anything at all if I believed there was a speck of a chance which they obviously do, however misguided that belief is it comes from a place of love to say as one poster did they are abusive is a disgrace and is imo hatespeech .