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Charlie Gard 13

999 replies

muckypup73 · 21/07/2017 08:45

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

OP posts:
Thread gallery
10
Incitatis · 21/07/2017 20:38

Why do they seek to blame somebody? It's a very unfortunate thing that he was born with, it's nobody's fault. He was destined to be life limited and there never was, or is, any treatment.

What's the matter with people? They can't seem to grasp the basic concepts of disease and biology. Are they deliberately being obtuse?

SilverLining17 · 21/07/2017 20:41

It is a degenerative condition but I doubt CA will accept that. Whether the family will I don't know. In Charlie's case it seemed to progress quickly. I think the statement on CA saying he was born 'perfectly healthy' is misleading. He appeared 'perfectly healthy' but he wasn't. Saying he was makes it appear something 'happened' to him.

Littlegreyauditor · 21/07/2017 20:43

It's an inherited condition Incitatis so the alternative to blaming others is maybe more horrible, more terrifying and much harder: blaming yourself. Instead, if you fight hard enough, shout loud enough then you can outrun that feeling.

I can't condone the behaviour but I can understand it Sad

RandomWorkingMum1 · 21/07/2017 20:45

It's interesting that - on this issue at least - the Daily Mail seems to be losing touch with its own readership. The harder it pushes a sentimental, anti-NHS, "life for Charlie at any cost" line, the more the online comments seem to harden against the parents (and I refuse to believe that they're all trolls). I always saw the Mail as vile but very good at giving its readers what they want. However, on this and a couple of other issues lately, they seem to have misfired badly.

0nline · 21/07/2017 20:45

online I think any shift to acceptance of brain damage now will be accompanied by more blame for gosh that either they have allowed this to happened by denying treatment, by negligence or by deliberate act.

Certainly it reads that way. But in time, who knows. Would they have the will for another doomed battle when there is no tiny life left to fight for ? Would somebody take the case if the evidence indicated it was a lost cause ? Time will tell, but I don't think it is a given that another court case will follow this one after Charlie has died.

What is a real and present issue for them is that they are between a rock and hard place with CA. They provided and encouraged the strongly held belief in the group that there was no brain damage, that there was a realistic hope for the treatment to work.

Even if they now believed they had been mistaken and GOSH had not lied/misdiagnosed, can you immagine what would happen to them if they shared that thought with CA ?

For now, given that (if genuine) it suggests the avoidance of a couple sitting there feeling like their child is being needlessly executed in front of them, this change of tense is a potentially a very good thing.

There was never going to be any bed of roses exit to this case. But in the grand scheme of how things could be much worse, it is very much something if the parents now accept how very badly, and irretrievably, hurt their baby is. So hopefully they can hold him as they let him go, rather than fighting the diagnosis to the bitter end, and possibly to the point of being excluded from the room when Charlie leaves them forever.

annandale · 21/07/2017 20:46

Agree Silver lining. He was born with a rare genetic disorder which has so far never been compatible with life past infancy.

Lelloteddy · 21/07/2017 20:48

There are 62,000 members on CA.
The most shares that one of their 'thunderclap' posts get seems to be about 1000. The thread about sharing lifts for court on Monday has about half a dozen half hearted attempts at organising payment for congestion charges and parking.
The majority of comments on any news articles are overwhelmingly in favour of letting this little boy die a peaceful and dignified death soon.
I think we're at risk of inadvertently being a voice for the madness of CA by repeating their nonsense here. I include myself in that before anyone jumps in.

JaneEyre70 · 21/07/2017 20:48

I think the Judge is in an almost impossible situation with Chris and Connie now - they aren't going to accept any medical evidence that Charlie has deteriorated, and will argue every single point Monday and Tuesday without taking anything new to the table. It's going to be horrendous Sad

BoreOfWhabylon · 21/07/2017 20:49

The Mail (I know!) states
Charlie also had another MRI scan yesterday at the request of his American doctor Dr Michio Hirano, the court heard today.

So, if that is the case, then it's likely Dr H wanted the MRI to compare with the previous one. Not sure Telegraph should be relied on that it was a scan of muscles.

The scan was done yesterday, docs would have looked and may well have discussed but would await full report from specialist radiologists. The report of the previous scan which was posted triumphantly on FB as being proof of ...something had names of four (poss 5 - can't remember) specialists as having reviewed and reported.

I would think this latest scan would have at least as many separate specialist radiologists reporting it, which would have taken time.

So, likely C&C were told it wasn't looking good but waiting for reports. Report came in while they were in court and relayed to GOSH barrister who, if what we have read is correct, could have made contents known in a more sensitive manner.

SilverLining17 · 21/07/2017 20:49

Ah yes. CA are taking the 'GOSH are responsible for his condition and must pay' line. They are calling for life in prison for those involved.

backaftera2yearbreak · 21/07/2017 20:51

I've been following these threads but have kept quiet till now.

Just a thought though. Ive noticed some of you have lost children yourselves. Are any of you up to starting a thread that's an open letter to the parents telling them you understand why they have fought but that you'd like to share your stories maybe to help them try to accept what's coming? Does that make sense?

GrumbleBumble · 21/07/2017 20:52

littlegrey has hit the nail on the head. C & C will blame anyone and anything to avoid blame themselves. The sad fact is that are not "to blame" its a tragic happenstance that two people with same genetic fault got together and the one in four odds of them both passing it on came to be but they aren't to blame as such as it was beyond their control or knowledge. Its so sad. I hope they refocus their energies and the money raised into a charity to help others acceptance will have to come first.

Butterymuffin · 21/07/2017 20:54

Random.I agree it's interesting about the Mail misjudging its readers on this. They are much more opposed to criticism of the NHS and Gosh than must have been expected.

NellieBuff · 21/07/2017 20:57

backaftera2yearbreak it does but they aren't ready yet to hear what others have to say.

I've just lost my temper on another thread because this is a very emotive subject and I've just had to spend a couple of hours comforting my usually very stoic husband. And someone will have a dig that we are taking joy in the family's sorrow etc etc

GabsAlot · 21/07/2017 20:59

th daily mail hav weirdly had some of the most measured comments on it

twitter still have some ca on there most american who dot actually know what theyrre talking about

Maryz · 21/07/2017 21:03

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oakleaffy · 21/07/2017 21:04

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SilverLining17 · 21/07/2017 21:06

GOSH can't defend it because it would be against patient confidentiality. If they said 'his previous scans showed brain damage too' they would be in breach of their confidentiality rules. So really they are being attacked and can't defend any of their actions.

Writerwannabe83 · 21/07/2017 21:07

I'm so confused now.

So has it come out that actually Charlie didn't have irreversible brain damage like GOSH originally claimed?

I can't keep up with what's happening.

oakleaffy · 21/07/2017 21:07

There was a very good post on the Independent comments section by a Consultant about Charlie...will see if it can be found....

Maryz · 21/07/2017 21:07

This reply has been deleted

Message withdrawn at poster's request.

SilverLining17 · 21/07/2017 21:07

Yes oak - that's what I mean. On their pages the parents say that Charlie was 'perfectly healthy' when born. It obviously reads to people who take it as face value as though this condition either then developed or something happened to him to cause it. I don't think it gives the real story - that tragically it was programmed as any other genetic trait would be.

Sostenueto · 21/07/2017 21:10

Backaftertwoyears a great idea but I don't think the parents will take notice. They are in a hospital that has dying children in besides Charlie, I doubt they would listen to any parent in there let alone anyone here writing an open letter.

Maryz · 21/07/2017 21:11

This reply has been deleted

Message withdrawn at poster's request.

GabsAlot · 21/07/2017 21:11

no writers its what the family are claiming

as thyev never believd he had it in th first place