Charlie Gard 12

[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:

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

That's a great article Hollie.

I dreamt that Charlie's parents accepted things and let him go. I never usually dream about news stories so this one has obviously firmly planted itself in m my unconscious mind.

Reading that article again made me think the saddest moment for me was the weekend GOSH granted the parents the weekend to say goodbye. They seemed at that point to have reached an acceptance of the reality of Charlie's situation and were preparing to say goodbye, only to be thrust back into fighting by Charlie's Army and stupid pointless political and pseudoreligious posturing by Trump and the Pope. They should all be ashamed, they've made this family's suffering longer.

I have seen some posts from an old aquaintance. I am not friends with her on fb, just noticed her on ca.

She has some sort of degree in the sciences, so not completely uneducated. Her interpretation seems to be that charlie is appearing to be brain damaged because his mito aren't working to power the cells. Therefore if the treatment crosses the bbb his brain will start working again and he'll be fine.

I think her grasp of the disease is too weak, even with her background. But maybe this is cy interpretation too?

Can you imagine Charlie's life in USA? Every researcher coming to have a look at the new human guinea pig. They won't get a moments peace. Don't think the us staff will take kindly to too demanding a person either. Do they the parents realised they will be charged for every swab, every glove used? They really do not know what Pandora's box they will open.

Just posted on CA. The doctor sent by the pope to help the Gard family (well I think that's what it says)

Has the judge given permission for anyone but the American doctor to be publicly identified? Just because Italian papers name him, doesn't mean it's OK to do so on a UK site.

@Sostenueto
That is correct. CY can read as much as he wants but she seems to be unable to apply the information she is reading.
Medical training in UK is 5 yrs in Med school, 2 yrs foundation training, 7 yrs paediatric specialist training and 1 or 2 yrs of fellowship training depending on the super speciality just to get to be a consultant. And then how many ever years CG's doctors have been a consultant. They have seen this kind of patients before, his condition might be rare but the physiology & clinical signs of a dying child is not rare- GOSH have seen it several time before.
Parents are 'experts' in their own children. But when it comes to applying research onto a living child you need lots & lots of specialised skills. Even Dr Hirano said he wanted CG assessed by a specialist paediatric neurologist- but CY has been proclaiming herself as MDDS expert in media. Think this is very sad, even if she were a doctor / even a paediatrician when it is her own child whe would have found it difficult to apply her reading about MDDS onto her own child.
There is a reason why GMC advises doctors against threating their own family.

Charlie has inherited mito from one parent and enco from the other ( the brain damaged bit) the enco is untreatable, with uncontrollable fits etc, and the reason why gosh wanted a 4 hour eeg rather than a 30 minute one To see how many times, if any, he was fitting in that time. Remember Charlie is effectively paralysed by mito so no outward sign of fitting eg movement. Every fit in one so young apparently leads to more brain damage. I am no expert so only learnt through professionals posts and gosh statement. So the treatment is only concerned with mito, a different type of mito to Charlie's. It really all hangs on extent if Brain damage really. There is no proof that new treatment will cross the blood brain barrier so therefore not much hope for charlie.

So, even if you could mend a broken brain, should you,?

Mine is more faulty than broken. Until diagnosis I thought, well if you could fix things that were wrong with you, why wouldn't you ?

I'm less black and white on that now.

There are some symptoms that make life much much harder than it needs to be. And there's one in particular that I kind of love, like it is a super power. Even though objectively I know it isn't and people without it do better than I do.

A year ago shortly after I was diagnosed I answered the question "would you magic wand it away" with "hell yes, bar the hyper-focus I want to keep that"

Apparently Connie is a carer. I was a carer for 30 years doing palliative care and like.Jon snow from got ' I know nothing' in the greater scheme of medicine, though I was sen..

Online I understand where you are coming from!

I have reported my post of an image of an Italian newspaper identifying the Italian doctor who examined Charlie and which I found on CA.

Got to go face the delights of my day...sitting in crowded hospital hot and sticky awaiting a couple of scans. Have a nice day/night and see you all later. Peace to all. Xc

Sosteuento..Charlie's mother is said to be 'expert' in her son's condition, but surely she [or anyone else starting from scratch] cannot have the deep understanding of complex biological/biochemical processes in just a few short months?

I just found this on Twitter. The pro-life American slant on this is now extremely alarming. I'm certain CG parents don't really think this. It's like a huge political snowball getting larger all the time.
Poor Charlie and the actual facts seem lost.

@Online
I am not sure what disorder you have been diagnosed with.
I have a DC who is on the autistic spectrum, I know his brain is different (neither broken, nor faulty). If I had a magic wand I would certainly try to magic away some of his snwaiey symptoms which he struggles with so often, but not change who he is.
When doing early intervention with my DC, I learnt about something called 'neuroplastcity' - in simple terms this is when other neuron pathways take role of the traditional ones- so when some autistic people have functional MRI's they found the areas of activty when they speak/communicate are not the typical speech areas- just to site an example.
With CG though from what I understand ALL his brain cells have been sapped of energy for a long time. Neurons don't survive long without energy and do not regenerate like other parts of the body. It is simply too late for CG to have nucleoside - say in the best case scenario they cross BBB, they even get into the Neurons, but it is too late to repair them.

Trampire Jesus Christ, that's horrific.

@Trampire wow. Somehow I'm not surprised but that is beyond awful.

Mommytomylittlestars, I too have a 3 on the spectrum, 1 is worst than the others, if I could magic anything away it would be his anxiety. He said to me a few weeks ago, mummy I dont want to live the rest of my life like this.

@Sostenueto sorry to hear you are unwell and in hospital

Sostenueto, I hope things pick up for you luv I truly do, good luck today xx

I meant to write 'sensory symptoms'

Charlie's mother is said to be 'expert' in her son's condition, but surely she [or anyone else starting from scratch] cannot have the deep understanding of complex biological/biochemical processes in just a few short months?

You can learn a hell of a lot about a single condition in a few short months. But what you can't do is magically fill in the space where decades of medical teaching and training needs to be in order to place all that knowledge into a context that allows for a deeper understanding and "joining the dots".

Which is why lay people can be extremely confident about their knowledge of their condition and how it should be treated, whereas their doctors tend to be more "yes, but, maybe".

The laypeople don't know what they don't know so think they know all they need to know.The medics know how much there is to know and how little they actually do know in the context of all the stuff they have yet to get to grips with.

Have a look at the Dunning Kruger Effect. IME it features quite regularly in some of the friction between medics and their "I've done my research" patients.

I got a bad dose of after I was diagnosed. And constructed a massive Know It All argument as per why my doc should give me the real world version of the Limitless drug. Cos I wanted it soooooooo badly. (still do emotionally) Even if it might have made all my skin fall off.

Doc did not agree. Was hard to me to come around to the idea that perhaps he wasn't being uninformed or obstructive on purpose. And realise that perhaps my over confidence in my understanding of my condition and pharmacology wasn't all the helpful really. Despite the many hours of hyper focus fuelled "research" that I had done. To the point of mental and physical exhaustion.

@Muckypup
Mine also has some social anxiety but at this moment it's the sensory symptoms which are the most troublesome for him. Think this will change as he gets older.

Mommytomylittlestars, we have that, son has Spd too.

This is an interesting read...

www.ncbi.nlm.nih.gov/pubmed/23622366

to all the autism mums. I had an awful night with DS last night due to anxiety. It's tough.