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

Thank you Ellie: it sounds like the "Dr I" in your reference is probably Dr Hirano

In the latest case, prior to him being named, Dr Hirano was referred to as Prof. I.

I think they'd have chosen a new letter if they weren't one and the same.

For whoever said about a hospice - I've never known a hospice set up to deal with a ventilated child. You need an ITU for that.

Writerwannabe very moving post. I have never been in a situation where I have had to make that decision to turn off life support for a child and can imagine how hard it is. It sounds like the parents you in your post made the right decision and let their child pass with dignity and peace.
For members of CA who bay that no good parent could ever let their child die in this way, It is so misguided and disrespectful to parents who have rightly made this decision. Their vile, evil sentiments are starting to make me really angry.

Great post wannabe xxxxxx

They appear to be basing "no brain damage in April" on the MRIs alone, which were 'leaked' online (not by gosh side as they were leaked as 'proof' he is fine) looking relatively healthy, and the reason has already been explained to them that cellular damage won't necessarily show in an early MRI - it was the EEGs that showed significant decrease in function.

So they are (deliberately? Accidentally?) presenting a small bit of the larger whole of evidence as the whole thing, as well as ignoring the experts (including Dr I/Hinaros) interpretation of that evidence.

I'm inclined to agree with Maryz

It would not be the first time GOSH copped the blame for something they weren't actually at fault for.

Initially it was believed GOSH hadn't got it together to scan for head measurements. The judge was deemed as being somewhat annoyed with them.And later there was clarification that it wasn't quite as had been assumed.

Now what Connie said in court is being interpreted as GOSH didn't tell the parents the results before court. The judge's comment on the matter is deemed as being somewhat annoyed with GOSH,. In a few days we may hear that events were not as they initially seemed.

For whoever said about a hospice - I've never known a hospice set up to deal with a ventilated child. You need an ITU for that.

Hospices can take ventilated children. I have three colleagues who have experiences of working in Children's hospices and respite homes and they all have experience in caring for ventilated children. I also know Community Children's Nurses who have cared for ventilated children in their homes.

The ward I work on has a HDU Unit but not an ITU but the nurses are currently being trained in ventilator dependent care so they can look after children in their unit if ventilation is going to be needed for a suspected short term.

Although nurses do require specialist training for Vent usage it is possible to care for ventilated patients outside of an ITU or hospital setting.

That's just my experience of my Trust and surrounding areas, I don't know how or if it is done in other parts of the country. I imagine the child's health status also plays a role in the practically of whether children can be transported to their own homes or hospices for withdrawal of care as has been talked about a lot in these threads.

I imagine Charlie wouldn't be suitable for hospice/home withdrawal of care, not because he's ventilated but just because his other health complications make it too much of a risk to move him.

I once looked after a child with cancer, she was 12, the decision had been made to withdraw treatment because there was no hope of recovery and when she got really ill with us the parents asked to take her home so she could pass away there. The little girl wasn't ventilator dependent but she was very, very unwell and after much deliberation the doctors said she could go home because it was obvious how much the parents wanted it. Unfortunately it was a 4 hour drive and she sadly passed away in the ambulance on the way home - it was very, very sad and I think the parents felt a lot of guilt for putting her through the journey, even though it was unnecessary guilt in everyone else's eyes. I imagine they'd wanted her to have a peaceful death in her own home surrounded by her family and when that didn't happen and she instead died in the back of an ambulance her parents were heartbroken and questioned their decision to move her. They did what they felt was right at the time though and I hope that as time passed they learnt to let go of that anger they felt at themselves.

This is worrying, they are actively trying to persuade someone who has fought to be referred to GOSH to not go.

'Not only GOSH but anywhere' They are actively persuading parents not to get their children medical help!

Agree with Beyond's explanation about the differences between the MRI - which CA are referring to - and the EEG scans and reports.

CA are obsessed with MRI scans, and there's a reason for that, fitting their agenda. When they talk about "the scans" it's MRI they're referring to.
I've never seen them refer to the EEGs.

The MRI scans back then (up to the April judgment) did not show structural brain damage. What they did show is raised lactate levels which apparently is a marker of this disease.

"Dr I" - Dr Hirano- commented after seeing Charlie's EEG reports and said this :
"“Seeing the documents this morning has been very helpful. I can
understand the opinion that he is so
severely affected by encephalopathy
that any attempt at therapy would be
futile. I agree that it is very
unlikely that he will improve with
that therapy. It is unlikely.” "

Happy to be corrected if I'm misunderstanding but point 98 in the judgment here is the detail about the EEG report

www.judiciary.gov.uk/wp-content/uploads/2017/05/gosh-v-yates-and-gard-20170411-1.pdf

Not only GOSH but anywhere'  They are actively persuading parents not to get their children medical help!

This is now bordering on the hysterical. There is no sense of perspective what's so ever. This is a most tragic case for everyone involved, principally for Charlie and his family. However it is an exceptionally rare case when family and HCP disagree so profoundly about treatment. CA need to think logically about the fact that thousands of children are treated each day by the NHS and these cases are so rare as to happen once in a lifetime.

friendly

And there is the dark underbelly of the Who Can Show Off The Most Feels SMOG competition.

Not even the prospects of creating fear and stress in a parent, who (given the context of a GOSH referral) is already likely suffering from an abundance of both, acts as a brake on s/he who wishes to stand out in the crowd of posters trying to outdo each other.

Give that poster an Outstanding Participation medal. For they have crossed the finish line in terms of lowered personal standards, what with the hurling of a person under the bus in order to reach their type based goals.

*NB worth bearing in mind that the poster with the referral may be a genuinely frightened parent, but there is the possibility they may by another " Stand back, I wish to outdo you" poster, making shit up to stand out.

KG does represent GOSH. The parent's barrister should have asked for the info. They knew more tests were being conducted. i think everyone realistically knew they would make sad reading. Once you get to court, I do think a QC is working to the normal way a court operates. The parents are being treated in an exceptional way. The father is shouting "evil" about the hospital but both a being treated with kid gloves despite their social media presence and info that appears to go against the court ruling about disclosure. The amount of flack GOSH have received about this, one can see that their QC may just want to state their case.

I'm going to take a break from the thread for a day or two.
I've found the comments about us on that other thread rather upsetting.
I'll likely be back to follow proceedings on Monday or Tuesday.

If I don't come back to the thread - or it gets deleted in the meantime - I want to say thank you to everyone for contributing to what has been a very interesting discussion and informative series of threads.

can i ask though why the change of mind from dr hirano that now it wold make an improvement when in april it wouldnt?

sounds a bit fishy to me

Thanks writer for your posts.

I saw the piece on the news last night and just feel so sad for Charlie. He looks even more unwell than in any pictures I had seen previously.

Morning all.

Sorry you feel that way Gin.

This has been posted in CA. It's all in legal talk, but from what I can interpret it's a fairly detailed explanation of the grounds for appeal. Maybe a lawyer can help tease it out?

www.familylawweek.co.uk/site.aspx?i=ed178127

If the parents still want treatment in the USA, they are possibly not going to want a hospice. That's agreeing to palliative care, which they fiercely object to.

Dr Hirano is so carefull in what he says. I think it's because if he gives his opinion he immediately expects to be challenged on his qualifications to give that opinion. He must have read thousands of mri and egg reports, he's a neuroscientist of global renown but he still won't give his opinion on something that is in the remit of a paediatricky neuro radiologist.

Paediatric not paediatricky [repeatedly bashes phone until it submits]

Someone on CA is saying how it's the worse day of their life...ermmm..

This can't be as one sided as it's being presented but that's what the lot on CA are reading and getting whipped up about. Good that elsewhere most comments and people are a lot more rational