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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Charlie Gard Case 4

970 replies

LovelyBath77 · 11/07/2017 08:15

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

OP posts:
Thread gallery
21
WeyHay · 11/07/2017 17:20

running the online Merchandise Store that sells iPhone cases, air fresheners and sweetie cones with his face on

There's merchandising ?

These people are appalling. Sorry, there's no other word for it.

11122aa · 11/07/2017 17:20

Can embryo screening be used to check for Charlie's Condition. The Parents could use this if they are comfortable with it.

stitchglitched · 11/07/2017 17:20

'Where is the family of Yates and Gard?'

Chris Gard's sister is very active in CA and Connie's parents also seem to share lots of CA stuff. I haven't seen anything about Chris's parents. I can understand one parent, or maybe even both, being so far in denial. I cannot understand the wider family feeding this denial so much. Connie's parents should be trying to help her face reality.

TinselTwins · 11/07/2017 17:21

Regarding GOSH staff being traumatised by this and exposed to vitriol and possible violence etc., I do not think so. I believe they (and all medical staff anywhere) are highly trained to deal with fallout like this, and will have the support of their hospital trust.

TOTAL rubbish! the staff are people just like us, trying to do a good job then going home and trying to look after their homes/families/other commitments. They are not immune to the stress of being wrongly called liars and murderers, that is NOT all in a days work, it is NOT what they signed up for nor what they are trained for.

They are trained to deal with individual complaints and individuals with challenging behaviour, not a whole flippin mob! c'mon! how would you feel?

My heart goes out to the other parents who have babies being treated in GOSH right now!

sodablackcurrant · 11/07/2017 17:21

The money thing makes me sick. Quite frankly.

The lawyers are pro bono, the healthcare is free. I dunno, need a cup of tea methinks and step away from the keyboard for a few minutes maybe!

reallyanotherone · 11/07/2017 17:23

I think when this is over CA will turn their "support" to the other two children on life support.

There was a video of Alfie, is it? On CA page showing how he loved doing something or other. I couldn't tell whether he was showing pleasure or distress. If i'm honest it looked more like distress.

SenseiWoo · 11/07/2017 17:23

I think it's reasonably clear how the court hearing will go. The judge has been clear he wants to see compelling new evidence that nucleoside therapy can not just cross the blood brain barrier but treat Charlie's structural brain damage (the extent of which the court has already accepted, even if his parents have not).

I agree. It also seems to me that in very recent days the Gards' [I know his mother is called Yates but calling them this is a useful and respectful shorthand] attitudes have hardened considerably. The Court of Appeal judgment (quoting Mr. Justice Francis) described them as:
"All, including the parents, agreed that if Charlie were to remain at the hospital under the present treatment regime, the benefits to him being kept alive for the remaining few months of his life were outweighed by the detriments and that the hospital should be permitted to withdraw treatment and, in the judge’s words, let him slip away peacefully, receiving only palliative care"

And Francis J. said in his summary that: ""Charlie's parents have, sadly but bravely, acknowledged and accepted that the quality of life that Charlie has at present is not worth sustaining, for he can only breathe through a ventilator and, although they believe that he has a sleep/wake cycle, and can recognise them and react to them when they are close, they realise that he cannot go on as he is, lying in bed, unable to move, fed through a tube, breathing through a machine"

and also asked "But if Charlie's damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?"

Re-reading that and then seeing that the Gards now say their baby is watching videos with them is very sad.

The American coverage and involvement has not been in the least helpful, because a lot of it just gets the circumstances very wrong and much of it is more about a domestic agenda re "socialised healthcare" and the desire for parents to have the only say in what happens to their offspring.

It is ridiculous talking about 'the government' doing anything to Charlie, as some do. The government is not involved and not requiring anything to be done or not done, obviously.

US citizenship would change nothing. Nor can I see the Sstate Department or the US Embassy here entertaining calls for intervention. The same kind of demand was made on behalf of Amanda Knox in the Meredith Kercher case and was ignored then too.

I find it worrying that people do not understand that :

  1. We are a country of laws, and subject to law. That's why, when doctors and parents cannot agree, a judge is asked to decide. Everything has to be done according to law.
  2. Parents can't just dictate what happens to their children because children are people in their own right, with rights, bodily autonomy and the protection of law. Parents are usually the last word on what is in their children's best interests, but sometimes it just isn't as simple as going with the parents' wishes. Which takes us back to point 1).
Dustbunny1900 · 11/07/2017 17:23

I'm brand new here so apologies if anyone was offended by the last post I made that got deleted, I will try and refrain from saying what I think of the parents mental health

But I think gosh IS acting as "the few good men" standing against "evil" (although I don't think I'd use the words evil to describe anyone but that American pastor and possibly the drs willing to experiment for money) and a huge amount of public pressure and foot stomping.
I mean once he's released and taken abroad ..if he even survives that.then they are free to to try any snake oil cure right? What if (when) the American therapy doesn't work or works a little and makes him even more painfully aware of his hell? they can just continue trying the next experimental therapy? And the next? "He's still alive so there's always hope"? Once gosh releases him it's permanently out of their hands right. I'd imagine the easiest thing for them to do would be wash their hands of it, but they continue to advocate for charlie. That's my feelings, whatever that's worth.

TinselTwins · 11/07/2017 17:24

The CA are basically advocating a system where your medical treatment options are determined by how popular you are on social media

That is basically what they're saying

By saying "they've raised the money and support so they should be allowed to do what they want" they're arguing for a dystopian healthcare system based on popularity.

Rabbitnothare · 11/07/2017 17:25

TinselTwins absolutely, I think that some of us on here are medical professionals or are affiliated with them in some way.

It absolutely is having an effect on the staff, they mentioned this in the latest court hearing.

Laiste · 11/07/2017 17:26

So - and sorry if this has been covered recently, i'm scan reading as it's so fast moving - what's happening about this vote in congress to make CG a US citizen? Meant to be happening 'today' wasn't it?

sodablackcurrant · 11/07/2017 17:26

Tinsel,

I think you are over reacting a tad. I said they are professionals. They are still going in every day to do their job, they have lawyers protecting them.

They are rising above this, and rightly so. What can a keyboard warrior do to them really? They are hopefully having a laugh in the tea room about their antics without taking it personally.

The whole country and beyond is well behind them, and they know that. Good enough for me anyway. And I have plenty of cousins/relatives working in NHS in difficult circumstances, A+E on a Fri/Sat night being one of them.

They know the vitriol is misplaced, they know most normal people look beyond the circus and are so glad to have them on board. Just me maybe.

Rabbitnothare · 11/07/2017 17:28

They have turned on another mother who has posted and is trying to raise money for her daughter to have Neuro surgery in America.

Asking for her to be deleted and blocked, true colours coming through now.

Someone is trying to set up for all the followers to set up a standing order of £2 a week each. £120000 a week, that's not going to happen.

I don't think that the parents need their hampers or next bargain clothes either.

BoreOfWhabylon · 11/07/2017 17:28

smilingmind the 'petition' is clearly fraudulent and the organisation appears to be tied in with right wing Republican pro-life groups/GOP.

The whole thing stinks and appears part and parcel of 'alternative facts', voter fraud, size of inauguration crowds etc

I have tweeted CitizenPro asking for an explanation but don't expect to get one.

TinselTwins · 11/07/2017 17:28

What can a keyboard warrior do to them really?

And sticks and stones may break my bones but words can never hurt me Hmm

nobody is too professional or well trained to be affected by bullying and intimidation.

Lexieblue · 11/07/2017 17:28

@cathf I'm sorry I don't know how to quote, but your point one is very valid. To question is fine, to openly contradict/berate (often without any tangible reasoning) is not.
I'm a HCP with degree, also have experience of colleagues with less training trying to override/contradict my clinical judgement when it is outside of their competency and job role to do so. The majority of colleagues wouldn't dream of doing this, but a fair proportion in my line of work have no problem stating their opinion as fact and carrying it on, even when proven to be wrong. Its extremely frustrating and must be confusing for patients.

LapinR0se · 11/07/2017 17:29

Does anyone know what time proceedings will start on Thursday?
I can't imagine the stress among Charlie's legal team now trying to provide evidence for the deadline tomorrow. It must be horrendous.

Sirzy · 11/07/2017 17:32

Ignoring the threats to the staff I don't think there will be a member of staff on that ward who isn't effected by everything going on. The staff know Charlie and the family, they know what he is going through. Of course that will have an impact.

I would also imagine it will be having a negative impact on the ward as a whole.

LogicalPsycho · 11/07/2017 17:33

There's merchandising?

@Weyhay yes, Chris Gard's sister Laura runs an online shop, selling amongst other things:

*Charlie iPhone cases (with his face on them on a ventilator)
*Charlie sweetie cones
*Charlie baby bottles
*Charlie Air Fresheners

Connie's account details and sort code are on the page.

TheWeeWitch · 11/07/2017 17:33

I was just thinking about back when when it was "the right to take Charlie home to die" that was top of the Gard's agenda. It was about 2 weeks ago now. Even some of CA were on board with that argument. If only it had all ended then, poor poor little Charlie.

sodablackcurrant · 11/07/2017 17:34

Tinsel,

I know, It must be awful, but I reckon they absolutely know that all the other parents of desperately sick children in their care are so happy to have them in GOSH.

One set of parents does not dictate the terms for everyone else. The legal teams will look after everything else, and the staff are playing a blinder in that regard.

I did not mean to be offensive. Just acknowledging that GOSH staff are great, keeping their mouths shut and not getting involved in the circus. I think they know this is a circus, and not directed at them, but at other things outside their control.

Sorry if I caused offence.

Sashkin · 11/07/2017 17:35

I think the "he likes watching videos" thing is being overstated - surely she just means that they (the parents) are still having interactions with him that they find meaningful?

I tell people that my son's favourite book is "Tiddler the story-telling fish". It isn't his favourite at all, he is four months old. It's my favourite. But what I mean is that we have a lovely time together when I read it to him. I'm sure the Gards have a lovely time watching videos with Charlie too, and it must be very hard for them to accept that their Charlie isn't really there anymore. It is quite heartbreaking.

Ellie56 · 11/07/2017 17:35

I can't imagine the stress among Charlie's legal team now trying to provide evidence for the deadline tomorrow. It must be horrendous.

Especially when the only "new" evidence available seems to be this letter signed by 7 doctors.

Rabbitnothare · 11/07/2017 17:37

They have removed someone asking if anyone would help towards Alfie's fund and turned on the poster.

Charlie Gard Case 4
TinselTwins · 11/07/2017 17:37

I was just thinking about back when when it was "the right to take Charlie home to die" that was top of the Gard's agenda.

That was still completely illogical! Lots of posts saying "just take him home, they can't stop you he's your baby"

CG wouldn't get as far as the lifts off active ITU treatment.