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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Charlie Gard 9

999 replies

muckypup73 · 14/07/2017 20:53

Hi guys new thread.

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:
Thread gallery
6
Nicknacky · 15/07/2017 19:44

sand I know it's not funny but I'm loving the image of patients going to the zoo !

NellieBuff · 15/07/2017 19:44

Sorry - I know this is a really serious topic but I burst out laughing at a comment on the CA FB : *do ur research" We have thank you and actually know what we are talking about Smile

TinselTwins · 15/07/2017 19:44

TinselTwins I work with ventilated patients and having a trachy is much more comfortable than an ET tube not so they can sit up and go to the zoo, but so they don't have a big tube in their mouth

Sandthefloor I think you're missing my point
CA have been posting pics about kids with trachies sitting up and laughing and some of them seem to believe that with a trachy Charlie would be just like them
He wouldn't
He'ld be in pretty much the same situation
He would not benefit in the same way that some of their "here's an example of what Charlie's life would be like if GOSH would just give him the trachy" posts suggest!

I agree it's more comfortable! If I was awake and able to move and mouth words and smile I'ld much rather a tube in my throat than one in my mouth tied around my head! Of course it's more comfortable. But GOSH will have their reasons for their choice in tubing, and even if they did chose a trachy, many of the ways that trachys benefit other people just simply wouldn't apply to Charlie.

11122aa · 15/07/2017 19:46

Thressa May knows if she does that Trump might not be, or able to be, forgiving.

LikeAFish · 15/07/2017 19:47

Parents don't have rights over their children, we have a responsibility towards them.

TinselTwins · 15/07/2017 19:48

One of CA has eloquently explained why the Queen hasn't just demanded he get sent to America (whilst still saying she thinks he should go to America and is totally pro CA)

She's been told she knows nuffink, and the queen could have this whole think sorted and Charlie cured in the morning if she just got off her butt and spoke up!

Edsheeranalbumparty · 15/07/2017 19:50

I'm looking at the CA FB page and now they're all planning their trip to the Courts on the 24th and 25th and one brave member has said that GOSH have done all they can but sadly some diseases just can't be cured and they've all jumped on her, called her a silly bitch (more than once) and told her to leave.

I saw this too, and the way they turned on her was awful. But then it turned out she was batshit too, her FB profile just full of weird statuses about 'seahorse bitch Molly' biting her, and she starting saying that on the court thread too and calling everyone a bitch.

That FB page just attracts utter weirdos - these people walk among us!!!

LetsGoFlyAKiteee · 15/07/2017 19:50

Writerwannabe83 did find it interesting how one couldn't do one of the dates as their child had a appointment at GOSH..hopefully they're not one of the people going mad with criticism for the place

Just find the whole let's wait for admin/sis in law to create a event for it so odd. It isn't a day out let's have fun! At the end of it in theory huge decision be made..why would you want to be parading around outside so bizarre!

Redglitter · 15/07/2017 19:52

Their ignorance is quite breathtaking

God help this American doctor if he says - as he very possibly will - that Charlie is untreatable. I expect they'll say he's been bought by GOSH to agree with them

Saw a post on CA suggesting Charlie is adopted by an American and therefore UK laws won't apply.

Lightlovelife · 15/07/2017 19:53

Why should Theresa May, or the Queen be involved? This gets barmier by the minute. And to be fair to The Donald, he too has other issues to worry about.

Edsheeranalbumparty · 15/07/2017 19:55

I agree that Bradley Lowrey's family have acted with such dignity. I know they got a hell of a lot of posts about 'why haven't you tried cannabis oil, it cures cancer' and I'm sure they encountered a lot of weirdos and insensitive people.

They did the absolute best they could for Bradley and although there were a couple of photos of his final days, in the end his death was private and dignified and he went in peace surrounded by those who loved him most.

I really hope Charlie gets the same.

Maryz · 15/07/2017 19:56

This reply has been deleted

Message withdrawn at poster's request.

LetsGoFlyAKiteee · 15/07/2017 19:57

AlabamaShakes good point probably. Like the whole getting Jeremny Kyle involved and the Queen people like that. Someone will suggest someone even more off the wall..like that woman saying they should get U2 to sing outside Court..does seem it's just people wanting attention and others to agree with then.

11122aa · 15/07/2017 20:01

I could see the Likes of Linda Robson popping up at the hospital to visit Charlie.

Ta1kinPeace · 15/07/2017 20:02

Saw a post on CA suggesting Charlie is adopted by an American and therefore UK laws won't apply.
Ha ha ha
I sometimes joke that I might call in the marines
but my US passport has never given me any extra rights in the UK
in fact of late its become rather a PITA but that is another story

ALoveWorthKeeping · 15/07/2017 20:02

I'm jumping ahead as this thread is moving so quickly, so sorry if this has already been discussed - if Charlie is not having any more head scans is it possible that he is continuing to have these terrible seizures? And his brain may have continued to deteriorate since the last one (January?)
Thanks for all the contributions, this is such an informative, if heartbreakingly sad thread.

TheFairyCaravan · 15/07/2017 20:04

I've just been told, by a member of CA, on a news link on FB that I shouldn't believe the papers I should got to CA page. I would then learn that most people on CA have been posting supportive posts about GOSH!

I'm actually gobsmacked.

Writerwannabe83 · 15/07/2017 20:07

..... if Charlie is not having any more head scans is it possible that he is continuing to have these terrible seizures?

I would hope and assume he's on medication to stop the seizures but I would be very interested to know how they know if he's still having seizures or not seeing as he can't physically display any signs of them.

It's awful to think his brain may be in constant seizure activity and nobody knows.

11122aa · 15/07/2017 20:07

I think the EGG is how they know about the fits.

Sandthefloor · 15/07/2017 20:08

I know he wouldn't be sitting up and looking anything like the pictures they're posting. My point is nursing someone with an ET tube for seven months seems in contrast to the " causing no harm to Charlie" that this is all about. He will still need to have the tube changed regularly to keep it patent and I find it sad to think of him going through that. I assume when the decision was made they thought it would be over in a few weeks.

GabsAlot · 15/07/2017 20:09

its possibl alove of course but noone really knows

CaveMum · 15/07/2017 20:10

Does anyone feel like pointing out to CA that the USA has the highest infant mortality rate in the developed world? 6.1 deaths per 1,000 births compared to 4.2 in the U.K and 2.3 in Finland who, shock horror, have a national health service Shock Wink

Charlie Gard 9
Writerwannabe83 · 15/07/2017 20:11

He will still need to have the tube changed regularly to keep it patent and I find it sad to think of him going through that.

But isn't the general medical
consensus that he isn't aware of anything so isn't 'going through that'?

It's so blurred regarding what he can and can't experience or feel...

SunnySkiesSleepsintheMorning · 15/07/2017 20:18

The photo of Connie and Chris outside court earlier in the week is heart wrenching. They look broken and either way, there is so much heartache and pain ahead for them. They look fragile in every possible way. I really hope they have a good support network that's not CA.

MirandaWest · 15/07/2017 20:23

That American woman is not useful. And almost amusing she was saying about something already known.

I think this whole case will have some ramifications but I don't know what.