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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Charlie Gard 8

999 replies

cjt110 · 14/07/2017 11:49

New thread so that we can await this afternoon's hearing at 1400 (UK time)

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"

OP posts:
Original poster
cjt110 · 14/07/2017 13:07

muckypup73 Regarding your responses? Yes I did.

OP posts:
GabsAlot · 14/07/2017 13:07

unfortunatly alot of posts believing the news reports which wer sktchy at best

www.facebook.com/loosewomen/posts/10156022792959879

Maudlinmaud · 14/07/2017 13:08

My thoughts are with Charlie, his parents and the staff at GOSH on this, the saddest of days. May God give them all courage to get through today, tomorrow and the future.

Smitff · 14/07/2017 13:08

Delinking to wonder out loud how things must be unfolding inside Charlie's room. Would there be tension between his family and the staff? Have the parents separated the medical team from the hospital's management, in their minds?

If I felt the way charlie's parents do about continued treatment (which I don't think I would), between the strain of the poorly child, legal proceedings, media glare....I don't know that I'd have the energy left to always ensure I'm civil with the nurses and doctors.

I can't help but think there's been a huge disconnect in communications between the medical staff and the family. Surely anyone with any perspective could see that the staff themselves are highly emotionally involved with Charlie, and have lots of experience of terminally ill children - so it wouldn't be easy for them to recommend the suggested course of action. I'm sure the GOSH staff are overflowing with empathy. So how has this not got through to the parents? How can they so vehemently and callously make accusations of mendacity to the very people who are caring for their boy?

It's all so desperately sad.

Original poster
cjt110 · 14/07/2017 13:08

LovelyBath77 I would hope that the previous decision is maintained.

OP posts:
LapinR0se · 14/07/2017 13:11

I very much doubt there will be a decision today. I think today will set out next steps to enable the judge to reach a decision

Original poster
cjt110 · 14/07/2017 13:13

I agree Lapin I think it is likely some time away from a decision. I imagine there will be a visit from the NY expert scheduled as well as whatever other things may be thrown up.

OP posts:
NerrSnerr · 14/07/2017 13:13

I hope they come to a decision today. They can't keep this dragging on and on. I hope the parents are able to have some quiet time with Charlie and there is time between him passing away and it being announced so they get some peace before CA find out.

Original poster
cjt110 · 14/07/2017 13:15

I wonder if at the beginning of this whole CA thing, i the Gard's ever envisaged such diatribe to come from "supporters"

OP posts:
BoreOfWhabylon · 14/07/2017 13:15

Some very interesting posts on the last thread.

This is an interesting article from the USA on the differences in approach

www.statnews.com/2017/07/13/charlie-gard-life-support-ethics/?s_campaign=trendmd_internal

spiney · 14/07/2017 13:15

Phoenix the rabbit
I feel like you. Very conflicted. And very grateful to have a place to read sensible consideration of the dilemmas.

Sostenueto · 14/07/2017 13:16

It will be end of next week me thinks before the decision is made and then more delay because it will be Charlie's birthday and cries of ' you won't even let him have his first birthday' will erupt and the whole legal and medical system will be doubly vilified. Then it will be another expert appearing......

BoreOfWhabylon · 14/07/2017 13:16

Too many 'interestings', sorry! Posting quickly

CuppaTeaAndAJammieDodger · 14/07/2017 13:16

I wept when I read the position statement. My thoughts go out to all involved.

Venusflytwat · 14/07/2017 13:17

cjt are you able to link to the court judgements? I can't do it right now but they answer all these questions so well.

If we fill this thread perhaps we could put the link to the judgements as well as the link to the GOSH position paper in any subsequent OPs, so people could easily find them?

LovelyBath77 · 14/07/2017 13:17

I hope that the parents have not been given false hope that this treatment has worked with the muscle type, and as they think he has not got brain damage it may work therefore, for him as well. If you read about the other cases of the RR type he has, they always involve the brain. Sad

rabbitnothare · 14/07/2017 13:18

*Today 13:15 cjt110

I wonder if at the beginning of this whole CA thing, i the Gard's ever envisaged such diatribe to come from "supporters"

Not sure but until as recently as two days ago, Laura Gard was posting 'bump' on threads where violence was being advocated.

Who knows what is really going on behind the campaign.

Original poster
cjt110 · 14/07/2017 13:19

Thanks for that Bore Very interesting to understand another stance on this kind of issue.

OP posts:
RatherBeRiding · 14/07/2017 13:20

Can someone tell me how I can send a message of support to GOSH? I've been on their FB page but can't see how to send a private message - or is the only way to post on their public page?

I think they do tremendous work and I am very saddened at a lot of what has been written by CA et al.

Original poster
cjt110 · 14/07/2017 13:21

Venusflytwat Good suggestion. I'll find the links and post. Shame I cant add to the OP.

OP posts:
Writerwannabe83 · 14/07/2017 13:22

I've just read GOSH's statement and it was so lovely written. How can anyone question that they don't want what is best for Charlie?

I'm looking forward to seeing all the posted tweets this afternoon.....mainly because I don't fully understand the purpose of this meeting, so I'm sure the Tweets will make it all clearer for me.

I'm another one who is shocked at all the posts on the CA FB page about denials of threats and violence and how they can't believe any member of CA would do such a thing.... Hmm

GabsAlot · 14/07/2017 13:26

should say message on their main page thats how i sent it rather

DorotheaBeale · 14/07/2017 13:28

Total ignoramus but is there any reason why Charlie can't have a tracheostomy instead of oral intubation? I thought it was meant to be more comfortable.

I think they considered giving him a tracheostomy early on, but then he deteriorated very quickly and they decided it wouldn't be beneficial. It was covered in the first court hearing. I think he is ventilated via his nose rather than his mouth, isn't he?

Rhodiolia · 14/07/2017 13:31

Thanks for the new thread. Hoping this farce is ended today, but I know it isn't likely.

Sostenueto · 14/07/2017 13:32

From what I gleaned Charlie could not have trachy because his muscles were too weak and they had to ventilate as he had 17 days in a row where he was experiencing multiple epileptic seizures, which IMO indicates Hus brain is severely damaged.