Charlie Gard 13

[muckypup73]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Posted too soon.
Probably a mistake to post the poem! But my point still remains you can't call someone expressing genuine and often tortured regret about something 'disablist'. It just adds to guilt and shuts down meaningful discussions.

RMC Maryz

We took our autistic son along with his two brothers and my parents to Amsterdam many years ago. He loved it and I have a great photo of him standing in a gigantic pair of clogs with a huge smile on his face.

Now grown up, he has said a few times that he would like to go to Italy (he loves mountains and lakes) so am looking into that for next year...

Ellie
Let us know how it goes!

Maryz I was by no means advocating Dr H's treatment for Charlie but just trying to remember what had been said and his rationale for representing it as an option.

I like your reaction to the poem which at the worst times with disabled DGS, who we have custody of, I would have found quite patronising.
Rather along the lines of 'God only gives you what you can cope with'

Strangely enough DGS and DH are on a holiday in Holland at the moment. My health preventing me from going but am finding the peace and quiet more beneficial than a holiday ever would be.

Now grown up, he has said a few times that he would like to go to Italy (he loves mountains and lakes) so am looking into that for next year...

And the plains ! Why does nobody ever think of the plains ?

Poor unloved plains.

It's the only bit that can really be built on. They (well, some of they) tend to be the least unpredictably wobbly and explody bits.

And if you ignore the helicopter sized mosquitoes and The Horror Film Type Fog they're lovely.

I am never ever going to get to go to a MN style meet up cos you all keep buggering off to the flashy, pointy and soggy bits.

I cant relate to Holland in the way of the poem but it is a lovely country and a great place to holiday. Me and DH have spent several holidays there. The people are very friendly and they have a pretty laid back way of life. We loved Leiden and Wassenaar so much we thought about moving to one of them. Not so keen on Amsterdam

Yes oak and there is this perception that somehow patients, or Carers, of disabled children have to be saintly.
It is OK and very helpful to be allowed to complain sometimes about NT children but any comments about disabled children perceived as slightly negative are met with things like 'Oh but he's lovely', I am sure you wouldn't be without him' and 'You are doing a wonderful job'. Even if the complaint is in no way related to their disabilities.
Children with disabilities and likewise adopted children, which I have, can often be seen as almost public property.

Amsterdam.went there years ago,loved the way the roads were set out, definite cycle paths, tram lanes and then separate lanes for vehicles.
Our very nervous Auntie went there with Trefoil Guides..our dad said ''Why are you going to the drugs capital of Europe?''[as it was then]
But she had a great time..they just looked at museums, visited bulb fields. Very pretty City.

smilingmind yes, and I think that the saintly view is one reason why MNHQ will not delete that TAAT or why people feel that Charlie's family should be above any slight critism. Which I think is a dangerous path to go down and very wrong.

I am a stroppy, non saintly parent of a S with a disability.

*dd

Going back a bit to the issue of scans, the parents did not consent and the judge said he would not make them although presumably had to order them in spite of the parents so that the experts had updated ones for their multi disciplinary meeting?

How does that fit in with CA's screaming about parents rights (which don't exist anyway) being taken from them by GOSH?

Also the posts trying to persuade people to not take their children there are horrifying, I hope their own doctors can encourage them to take them to GOSH if they are referred there. Is anyone else reminded of the attacks on social services by people who have had their children removed and their complaints being co-opted by certain politicians for their own agenda who encourage people not to engage with social services?

SmilingmindInteresting..yes, totally agree, people do assume that parents of adopted /disabled children are more saintly than the general populace. :)

MN removed something I'd posted last night...not sure what I'd posted, but obviously someone reported it..?

I can't understand why C & C became so fixated on the earlier MRI scans not showing brain damage when surely they must be aware of the EEG evidence which in any case was detailed in April High Court judgement.

And the claim that GOSH are lying and witholding Charlie's medical records only makes sense if they alone have dealt with Charlie. But prior to the original court hearing numerous specialists from other hospitals both here and abroad were consulted and they all agreed with the diagnosis, and that treatment would be futile. Even Dr Hirano said so once he was made fully aware of Charlie's condition.

In the meantime CA are having a field day slagging off GOSH and digging up any dirt they can find:

www.bbc.co.uk/news/10621726

www.express.co.uk/news/uk/606860/Boy-brain-damaged-Great-Ormond-Street-ignored-medical-scientist-mum

www.telegraph.co.uk/news/2016/08/13/award-winning-surgeon-sues-great-ormond-st-hospital-for-ruining/

This is not going to end well.

This is not going to end well

Yes.

But I'm not sure it is GOSH who needs to worry about the mid/long term.

comments from a range of sources seem to suggest the more they get unfairly critised, the stronger the feeling of support.

Not so sure the family is going to fare too well in terms of public sympathy though. Getting a sense that the understanding, because of the awful pain they are in, is being edged off the table.

I must admit that I am getting a little confused about the issue of scans and EEGs etc and especially the argument that there was "no brain damage in April"

I thought that the reason that the court did not know the extent of brain damage in April was that C&C had refused permission for MRI scans since January and had also refused permission for the longer EEG that would show the extent of structural brain damage. I thought the judge had ordered that the clinicians could carry out tests that were considered necessary last weekend even though the parents objected.

I was at GOSH on Thursday. I saw no signs of CA whilst I was there. I did see CG as I was leaving with dd6.

I also hate the Holland poem. I never wanted to go to Italy or Holland. We are on a road less travelled with no cure. Life expectancy is unknown. I navigate this route with no sat nav.

I haven't seen the second TAAT but the first one was deleted in probably less than 2 hours

@Lunde c & c and CA maintain that GOSH has lied all along about Charlie's condition. I believe that to be the root of all this. I've just read in CA that c & c do not trust GOSH clinicians to interpret the latest scans and that they will be having them assessed independently.

They can obviously say, do and believe whatever they want while they accuse GOSH of lying because GOSH cannot speak against anything in the press. Every day, very press release, every "look at him with his eyes open" photo draws the circus further away from the harsh truths of this case and away from the poor child at the centre of it.

I'm never sure what to think of the Holland poem. So I'll sit on the fence whilst popping my anti-d's and remember that God never gives me more than I can handle. (Or something)

As posters here and some of the CA posters have said, though, they can deny things all they like but there is no proof of it. The 'eyes open' photo proves nothing, and they haven't posted any videos that would back up their claims that Charlie enjoys watching videos, responds to tickles, follows the movement of a toy etc. Hard not to see it all as high-level wishful thinking born of grief and desperation.

it is ridiculous

thyr just stalling now oh we want somone else to read the scans

whose left? thyv had the top scientist in this field mutiple spcialists from this country not just gosh an thy still dont believ anything