Charlie Gard Case 4

[LovelyBath77]

A new thread to follow on from the others about this case

just posted this on the FB page of CA but no doubt it will be deleted and I have tried to be as sympathetic as possible

*I appreciate the sentiment behind the post but in fairness these children don't have the mutation of the gene what Charlie has - I absolutely support charlie's family in their cause and am sure I would do the same - I don't feel classing GOSH as murderers, liars etc is doing Charlie's cause any good - possibly turning people against it - I work in the NHS and daily I see how my colleagues go to any length to save lives - uninformed posts saying if he was in pain or he's growing (it's lymphodema and his little body is filling with fluid) do not help his case - I for one have fingers crossed that evidence if provided that could help Charlie - i absolutely believe that the GOSH doctors, high court, court of appeal and supreme court all have his interests at heart

"Also let us know if they need money to bring the doctors that gave the letter to say that the treatment will work. It would be good if these doctors could be in court"
This is another new post [on CA] about money,

The judge said he would take evidence from witnesses by videolink if necessary; there's no need to 'bring the doctors'. I can't have much patience or sympathy with people who can't be bothered to inform themselves of what was said.

@Lonelymummyof1 have you applied to Family Fund in the last 12 months? Xx

What does Head Size have to do with quality of life or brain functions???

I don't know, maybe ask the mothers in Brazil whose babies have Microcephaly due to the Zika Virus, how head size has impacted on their babies lives.

They're fucking loopy over there. Someone has posted a link saying "Judge rules against London hospital, in favour of Charlie Gard's parents" and they're believing it's true, breaking news at 12:40 am FFS.

Charlie doesn't need to worry about the Court judgment, it'll all be ok...

Also new best hashtag

#deseaseisnotaguilt

Apparently the Court had decided as part of the conspiracy that "Charlie is guilty to be a serious ill"

They are deluded- 66,000 as a human shield. They couldn't even scare up more than 4 people for their last protest. Lots of 'I'd be there if I cud hun'.

Best one I saw earlier was 'its about time they got the law involved'.

I've largely avoided these discussions because I used to sit on Medical Ethics Committees as a lay-person and have recently applied to do so again.

I just want it to be known that none of the decisions regarding medication and possible treatments are taken lightly, they go through a rigorous process, and any potential treatment that has not been passed will not suddenly be available, if any new research came to light, it would have to pass through an ethics committee again.

It's not a case of saying, 'Give it a chance', it would need to be absolutely examined and considered by a committee of professionals and people who give their time to think about every repercussion of such a treatment.

I actually blame the internet, and in particular, the rise of these crowdfunding sites as part of the problem in cases like this. People think that donating a few dollars gives them rights to 'purchase' a stake in whatever the cause is. It's not just something that is a sad story happening to someone else anymore, they are now part of the action. They can get an instant response from a member of the family concerned, they can debate with others. And then it becomes competitive - I care more than you do. It's grief tourism and what would once have been a story on the 6 o'clock news and a 'that poor family', has become a global sensation with everyone trying to outdo themselves. You see it ever ytime there is some sort of widely publicised incident - 'my sister's husband's cousin's gardener's pool cleaner's mother in law dog once peed on the mailbox of someone who was there' and therefore they are overcome with grief.

I am not sure if the parents are to blame for the facebook shenanigans. They are being fed stories of possible cures, you can't blame them for wanting to follow the cures. wicked that their expectations are being lifted.

norma - the family are moderating the FB page, and anything that disagrees with their GOSH are murders stance is being deleted.
Cindarella - has your post been deleted ?
007 - really

is it charlie's dad's sister that is moderating?

it is out of control whatever it is

that's my understanding from these threads

Also let us know if they need money to bring the doctors that gave the letter to say that the treatment will work. It would be good if these doctors could be in court"
This is another new post [on CA] about money,

Theyre not doctors, theyre scientists anyway ffs

These "experts" will be rubbing their hands together with all these people willing to throw money at them for doing nothing!

If sedation of some sort isn't needed, that isn't a normal situation. Most people would be irritated by the presence of a tube in their nose/throat, and their instinct would be to pull it out. However, if you can't move, then you can't reach for a tube to pull it out. It doesn't necessarily mean that you don't mind the tube being there.

I deeply feel for every professional involved. It must be awful to have this played out in the press but only half the story being heard. Well done them for maintaining such dignity and professionalism throughout. A credit to the NHS.

@Sirzy

I don't think that's necessarily true.

A couple of them (Italian) have released a statement somewhat distancing themselves from the situation - making clear they provided information on a specific point only (evidence on the blood brain barrier) and made "no judgement" on if it was the right treatment for Charlie and were not qualified to do so in a clinical sense.

Unless you mean inheritance tax but that would mean tracking each donor to see if they died within seven years or something?

Could it be argued that the gifts are/were to Charlie, and when the inevitable happens Connie inherits?

Get 007
My god these people walk amongst us

I'm going to send a message to gosh later. A quick thinking GOSH nurse saved my life when i was a baby.

Zoe Williams in The Guardian today -

"The grim necessity of being unable to help, and rejecting the palliative of fantasy, falls to the public servants: the doctors, the nurses, the judges. They can present no human face on this stage, nor compete with the pyrotechnics of religious fervour – yet their fellow feeling is, undoubtedly, deeply held.
And in the meantime, nothing will lift the suffering of Charlie’s parents."

www.theguardian.com/commentisfree/2017/jul/12/charlie-gard-doctors-speak-out-hospital-staff?CMP=fb_gu

Lougle - good point. whilst at NICu, we used to be amazed that babies who were only days old, and had had surgery could all manage to use their little finger to pull out their NG tubes, several times a day.

And the strapline:

"Hospital staff exercised fine judgment on the tragic baby’s behalf. Can the critics honestly say the same? "