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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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

Lexieblue · 15/07/2017 14:17

I hope not, it's turning into an international incident :(

Ta1kinPeace · 15/07/2017 14:18

Rhodiolia
I guess LonelyMummy finds it extra hard to watch the news story when her DD is having a rough patch.
Hopefully she'll stabilise soon.

rabbitnothare · 15/07/2017 14:20

Can I ask why we can be sure these parents are needlessly difficult

I think that they have every right to explore every avenue. What I don't think is right is for them to disparage GOSH online and in the media, the shouting and the stoking of an already angry mob of supporters.

About three threads back, someone posted on here that their child was in PICU with them in January and that tensions were already there with the parents being very angry at staff.

Everyone has so much sympathy for the parents on here, that doesn't mean that it's okay to support them in possibly putting their feelings ahead of Charlie's welfare.

I don't think that refusing scans for Charlie in the past has helped this situation either and does make me think that they have not been working together with the medics.

Original poster

muckypup73 · 15/07/2017 14:20

0nline,cant see the petition, gosh are fully aware that there are names on there that people have not signed, unless that it lol

OP posts:

11122aa · 15/07/2017 14:25

Can an American President grant citizenship by Order. Or even an honorary one. Type of thing Trump would do.

GabsAlot · 15/07/2017 14:27

id be very surpisd if he got involved in our law system

thats like us turning up there demanding somones let off the death pnalty whats it got to do with us

Original poster

muckypup73 · 15/07/2017 14:29

To be honest it was none of Trumps busines anyway, have noticed how quiet about it all hes been now?

OP posts:

smilingmind · 15/07/2017 14:29

I received this from Citizen Go replying to mine asking them to remove me from the petition.
I have never subscribed to them or anyone like them nor clicked on any of their links.
I did contact GOSH telling them that I and others (no names given) had not signed the petition but had received an email thanking us for doing so.

Thank you for writing in regarding your concern. This "thank you for signing" email was intended as a general thank you to our subscribers who have signed the petition up to this point, and due to an error this email was mistakenly sent to some of our subscribers who have not signed the petition. Please know that your data was not compromised and the petition was not signed under your name.
We apologize for any confusion this may have caused!

Thank you so much for your support.
With very best wishes

CaveMum · 15/07/2017 14:32

Even if Trump was stupid enough to grant Charlie US citizenship, it doesn't over-ride his UK citizenship. What's Trump going to do, send in a SWAT team to forcibly remove him from GOSH?

The diplomatic fall out from any moves to remove Charlie would be massive. I'm not sure even Trump is that thick.

reallyanotherone · 15/07/2017 14:32

I thought it was a result of his diaphragm being too weak - like all his muscles.

That is part of it. The other part is he has the encephalopathic version that also affects his brain. This is why they are trying to make such a thing about it crossing the blood brain barrier.

If it doesn't, his brain cells still won't have the power to send any instructions anywhere. If it does, then they possibly may, but it will be totally dependent on the existing brain damage from his continuous fits and other issues. That it can't make a difference to.

So if his brain stem is damaged, effectively switching the power back on will make no difference.

Gobbolinothewitchscat · 15/07/2017 14:32

I'm genuinely surprised at all the posts to the effect that "the judge is making sure no more cases can be brought". I'd love to be wrong, but am really struggling to believe this

The parents produced the "new" evidence to trigger a judicial review. Given the research they have done (mother a self-admitted "expert") and the worldwide press coverage, they would struggle to find anything "new" in the future.

This is the last roll of the dice but they have got their foot in the door if the court. The judge is acutely aware that they could start trying to lodge appeals in respect of this current action so has obviously taken the view that it is better to try and ensure that they have no reasonable grounds of appeal by being incredibly careful and meticulous (as you would exhrct anyway in any end of life case). Although they are teiresebted, they are essentially being treated as party litigants and afforded the same lee-way. The reason the judge is treating them with kid gloves is because obviously this is a terribly tragic time for the parents and they will suffer the greatest loss but it is also in Charlie's best interests not to give grounds for appeal

redshoeblueshoe · 15/07/2017 14:34

it doesn't matter if he gets American citizenship, the judge said yesterday that he couldn't leave the country without his consent. I really cannot see any American hospital being willing to take him

SomeDyke · 15/07/2017 14:36

Obviously we are all hoping the teams come to some agreement and the judge can ensure that it is then enacted. But what if, for example, the us chap still thinks treatment is valid and the rest disagree? He cannot administer it himself and I wouldn't imagine that the judge could order the medics to administer something that wasn't licensed and approved and that they considered to be unethical. Given that moving him for a scan isn't simple would the judge then be able to remove him from the care of GOSH and allow him to travel to the us? The doctors have already followed a course of inaction they considered unethical by not removing ventilation but could/should they be induce to take a positive action by administering a therapy? I guess though that would be covered by ethical approval locally? Seems there would be a long path to administering the therapy here even if the us chap thinks the brain damage is not catastrophic as GOSH believe. So not only would he be trying to persuade them the therapy is worthwhile but also that they were wrong about the brain damage. It is not going to be simple if they disagree.

reallyanotherone · 15/07/2017 14:36

I suppose there is also the possibility that if the treatment works, and his muscles get strong enough for movement, all it will do is give him the physical ability to fit. If that's what his eeg is showing...

lougle · 15/07/2017 14:36

Who has said about manual ventilation during a MRI? That isn't typical. Normally you'd make sure that you use extra long tubing so that the ventilator and any infusion pumps are outside the scanning room (can't have anything even mildly magnetic in the room) but the patient would still be connected to the ventilator as normal.

Original poster

muckypup73 · 15/07/2017 14:38

SomeDyke, unforuntaly the Usa was only given a half truth about charlies condition, cant remeber where I heard it, but once he knew he said there would be very little chance.

OP posts:

Seeingadistance · 15/07/2017 14:39

Was anyone else listening to the Radio 4 programme just now? I had the radio on in the kitchen but moving around the house so didn't hear it all. Came in just at the end, and there was a very distressed woman speaking about her child. From what I heard it sounded like when the child was a baby there was the option to withdraw ventilation, but now child is much older (teenager?), breathing on their own, and is in constant pain etc. Poor woman. I was in tears listening to her distress and the presenter had to say that the time was up but that she would call her back.

GinSoakedTwitchyPony · 15/07/2017 14:40

smiling thanks for updating about the petition.

0nline · 15/07/2017 14:53

it doesn't matter if he gets American citizenship

Quite.

My son is half Italian, half British.

If I didn't agree with treatment for him over here and was at loggerheads with the hospital/legal system it's not like you lot, headed by Boris Johnson, could come over, storm the place and help me carry him off while we all sing Rule Britannia.

He is resident here, as I am. We are subject to the laws and courts of Italy. Neither my, nor his British citizenship changes that.

salemcat · 15/07/2017 14:55

Can I just ask, if ( and its a big if ), Charlie got the treatment, what it the best outcome he could have from it?
Hes classed as terminal right now isn't he? So are we looking at him being able to hang on for a few more years? Having any quality of life at all?

LikeAFish · 15/07/2017 14:56

I've worked at GOSH.

Something I have been thinking about are the memories we create when a child is sadly terminally ill and care is going to be withdrawn. For example, taking a lock of hair, taking foot and hand prints, pictures of the child, saving items related to the child. All so the family have a memory box to look back on and remember their child by.

If Charlie's family are so adamant he is not going to die does that mean that the nursing staff have been unable to do any of this? It's such an important thing, and I just wonder if something were to happen to Charlie suddenly or if care were to be withdrawn whether his family might regret not doing this.

It's just something I've been wondering. I have worked there and I know GOSH will have done and thought of everything. I can't imagine what it must be like to work there right now and to be brutally honest I'm glad I don't.

littlebrownbag · 15/07/2017 15:00

The action in the US was to grant Charlie, Connie and Chris permanent residence, ie "green card", not citizenship. Basically, to fast track them through the immigration process, avoid the need for other visas and permit them to move over and live and seek medical treatment (and get a job if they so wished).

It would not allow them to get US passports.

Bourdic · 15/07/2017 15:00

Seeing the full story was worse - her first child 17 years ago was revived after birth but then she said they very quickly had to decide whether to continue treatment - she says she was in no state to decide but that they decided to stop the treatment and the dd died. She had always wondered what if? Then with their son, they did continue and you heard how awful that is for her - poor poor woman. I thought Anita was lovely with her and was glad she was going to ring back.

Ta1kinPeace · 15/07/2017 15:05

salemcat
Even if the mitochondrial stuff magically improved
he'd still be deaf and blind
and I do not think anybody has suggested any treatment being able to seriously mend every cell in his body.
so he'll still be paralysed, as well as deaf and blind

NellieBuff · 15/07/2017 15:05

Sorry and this is late I have just heard Linda Robson on Loose Women - the woman is a complete and utter idiot.

Sorry I had to have a wee rant there.

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