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

They would not know what the scan would say from being there when it was done. Scans are done by a radiographer (who essentially takes the picture - with no disrespect to the profession at all. It's essential and not as straight forward as im implying) and interpreted by the specialist/MDT/radiologist etc.

To hark back to my previous post, people interpret information differently/hang on to misguided hope.

OK enchanted what's your theory then as to why when gavi g recievef results they chose not to read them before court?

When they received that should read.

Sostenuento Totally agree. Hope your comment stays put.

I've even started to doubt that the judge has the courage to say ' right original order upheld'.

This is my worry too.

This case has got so huge, even across the globe, that I genuinely do fear that the Judge will allow treatment to go ahead purely because he can sense the magnitude of the uproar and the repercussions (for him and for GOSH) if he instead said that life support should be withdrawn.

stitchglitched, yes, again we are back to the saintly image again. Must never be questioned or criticised and Charlie seems to come second to that.

I have no idea - it's all purely speculation on all fronts. From what I read I assumed they'd just been received in that moment.

I feel for them, I really do. I don't agree with their stance however. I want to give them the benefit of the doubt that the evil thing etc wasn't all theatrical.

Enchanted they encourage tweets and Charlie's army to bash GOSH. They have not considered any other child or family in that hospital when they tried to bring their circus into ICU. What dies that tell you enchanted?

They would not know what the scan would say from being there when it was done. Scans are done by a radiographer (who essentially takes the picture) - with no disrespect to the profession at all

Just echoing this. Radiographers are in no way allowed to voice to parents their opinions on the scan images. The images are sent off for official reporting and this can take days in some circumstances.

The parents may have been there for the scans but they will have been with Charlie in the MRI scanner room, they wouldn't have been in the same room as the radiographer so they wouldn't have seen the images thrmselves.

Radiographers do know what they're looking at and they probably knew exactly what Charlie's scans showed but they are absolutely not allowed to share their thoughts with the parents.

I don't really understand what Connie meant with her outburst, it didn't really make sense in my eyes.

Misdee re measuring heads..it is tricky to do, even for simple measurements like measuring a head for a helmet.

How tight is the tape to be pulled?
If the tape isn't done at the widest point, the measuring can be off,
It surely would be measured by staff at GOSH using particular points on Charlie's head, so all measurements go through those datum points..
This would stop inadvertent tape 'slippage' therefore adding or subtracting millimetres.

It tells me their child is the centre of their world and they consider nothing and no one else outwith that.

I'm not trying to antagonise, justify or anything else. I just would like to think they're selfish, not calculated. Selfish I can understand if you see what I mean?

Agreed friendly. I have DS with SN and have been on the receiving end of some of the saintly image nonsense myself. As well as undermining any struggles I have because 'you cope so well'. It's irritating.

The worst thing about how this case has been played out for me, apart from Charlie's suffering, has been the utter drubbing the NHS and our legal system has taken. Any individual should absolutely be concerned about and aware of the damage they can do to an organisation or individuals within it if they are going to publicly make such serious accusations.

You put it better than me writer 😊

And apparently, from something else I read Chris Yates had also shouted out, "We shouldn't have to put up with this shit!" and then had stormed out a second time. I don't know how true this is though.

The emotional pressure those poor parents must be under is beyond my understanding. The whole thing seems so insane and nonsensical but I genuinely believe they just don't know what to do or what to say anymore. Their whole world is consumed by this battle and I worry for their mental and emotional resilience.

From the Guardian's report of Friday's proceedings:

"But on Friday, Katie Gollop QC told the high court in London – where the latest round of the protracted legal battle between Charlie’s parents and Gosh is taking place – that the results were not positive for the 11-month-old. That prompted an outburst from his father, Chris Gard, while his mother, Connie Yates, burst into tears. Yates told Mr Justice Francis that they had not yet seen the report.

Gollop, who is acting for the hospital, subsequently apologised, telling the judge: “Almost all the medical evidence in this case makes for sad reading. I’m very sorry. I didn’t mean to cause distress.”

The barrister Grant Armstrong, who represents the couple, said Gollop should not have broken the news about the scan before Charlie’s parents had read the report."

My thoughts on this - it's a court case, and one where time is critical. The scans are critical evidence. Charlie's parents have had doctors "breaking the news" to them for months, and they've clearly not been able to engage with it. The problem for them is that the court is the one place where their magical thinking can't be allowed to stand unchallenged, and so it's become a battleground in more than the usual sense of that word where a court case is concerned.

I suspect KG was amazed and appalled that the parents hadn't seen/read/studied (we don''t know which one) the scans, but it's a mark of how far their relationship with GOSH has broken down.

Quite agree Sostenueto
This whole debacle alongside the media circus has gone on long enough.

I just wish they could all realise that no matter how much abuse they hurl at GOSH, how much they court the media, how much they try to reinvent the medical evidence, how many times they storm out of court every time they hear something they don't like, how many people descend on the court next week, how many petitions are signed, how many blue hearts are plastered all over F/B and how many tacky Charlie air fresheners are sold, the sad truth is their poor darling little Charlie will never ride that bike.

I have convinced myself that the judge will stick with the original ruling, although of course no one knows anything until he announces his decision. It doesn't matter how much uproar people are causing, I can't imagine that would sway the judgement, he will do what is lawfully and ethically right, that is what his role is in all of this mess.

This is no longer a case about whether or not this treatment would help a very ill little boy. It's a case about parents unable to accept that unfortunately we can't always control what happens in life. I really wish they had someone in their circle of family and friends who's opinion they respected who could gently guide them to see this, and make the most of the next few days with Charlie.

Jesus wept. I' ve just taken a look at the CA Facebook page. Charlie . air freshness and key rings!! how utterly crass..

Yep he even left his monkey behind too wannabe, you know.

Oh well put Montypython! X

It' s interesting how vocal a minority can be. To read the papers or listen to the news, you would think that most of the public support what the parents are doing.

I actually think it's a tiny minority. Not one person I've spoken to thinks that GOSH have done anything wrong, and every single one of them think enough is enough and life support should be withdrawn.

A latest post on CA:

He aint brain damaged atall u would tell through the photos. The kid is healthy just that deises that needs treating other than that he is fine. Don't panick guys charlie is fine. He will be going to usa soon:) xx

Do people really believe he's healthy?

They have since gone on to question if GOSH is purposely presenting someone else's brains scans and reports and passing them off as Charlie's because the truth is that his latest one shows he doesn't have brain damage at all and they don't want the truth to come out.

WTF?

I refuse to believe that CA members actually think this could be happening? I've never heard anything so stupid as some of the theories that they spout.

I see your point sostenueto but I do think their is subjectivity and they may well believe what they're doing is selfless as they truly seem to believe they're fighting for a cure not merely prolongation of life.

WR to air fresheners with photos on etc. - it's no different to other cases. Those who shout loudest get heard and the support. Look at Madeline McCann for example - thousands of children go missing, why was her case noticed so much?

As I said, im not trying to argue and I believe Charlie should be allowed to pass peacefully now. But I think there's a middle ground between where CA see them as saints and the perspective that they're intentionally manipulative ("stage managing")