Charlie Gard Case 3

[LovelyBath77]

A new thread to carry on from the previous ones about the case

"However, Piers made a comment along the lines of - just let them take him to America for treatment because after all who loses?"

I saw that. It's a shame that he didn't allow the excellent doctor he was interviewing, Ravi Jayaram, give a proper answer.

One reason of course is that taking Charlie to the US would entail flying with a huge amount of medical equipment and, I imagine, medically-trained staff (perhaps someone can correct me if that's not the case). Logistically, it would be a big operation. I imagine you'd also have to find an airline to take the risk - which, given they don't even let you fly if you're eight months pregnant, might also be a challenge.

This case highlights the fundamental clash between the UK no USA when it comes to healthcare. It is totally impossible for US citizens to understand that we ALL have access to world-class medicine and medical care at ZERO cost. Equally it is impossible for those of us born & bred in the UK to understand how it feels to live in the US system. Hence US folk may consider GOSH to have a motive to kill Charlie because he is costing an insurer too much money. Hence also the fuss about "death panels" that US folk talk about where they imagine individuals are denied care in th UK. In reality this actually happens routinely in the US system..

Margaret I made a comment that it's not about them. Because it's NOT. The child has RIGHTS. Experimenting on a terminally ill child with NO hope of recovery must go against every oath a doctor has ever made. Every doctor has agreed there is no chance of recovery, he's never going to breathe on his own, let alone ride a bike! The parents are delusional, they are in no fit state to make any kind of decision.
The American doctor who has offered to treat him should be struck off (if there is one now, ive heard conflicting reports?!?)

..between the UK and USA

I really wish Piers Morgan would stop shouting at people who come on to be interviewed.

New thread here

www.mumsnet.com/Talk/am_i_being_unreasonable/2976548-Charlie-Gard-Case-4

WeDoNotSow,dont worry about it,seriously we are all adults and have questioned things, because its getting silly now, one wonders If margaret had been on charlies army page and given them a roasting for threatening to kill doctors and such like.

I agree with you RMC123 it is the fact that it has all been blown up wrongly. Of course, if there are lots of experts telling you then yes of course you have to accept that.

Just to mention in case it helps anyone with regard to his condition this is from the GOSH summary online here:

Who is Charlie Gard?
Charlie Gard is a GOSH patient who is currently in our intensive care unit.

What is his condition?
Charlie’s condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. Charlie suffers specifically from the RRM2B mutation of MDDS.1

Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie's heart, liver and kidneys are also affected.1

Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.1

Charlie's eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.2

www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

I don't understand how CA can think it was been wrongly diagnosed as a different less severe form of mito disease, as it has been confirmed as this type from genetic testing. It is a particularly severe type which affects the brain as well.

ArgyMargy: "Hence US folk may consider GOSH to have a motive to kill Charlie because he is costing an insurer too much money. Hence also the fuss about "death panels" that US folk talk about where they imagine individuals are denied care in the UK. In reality this actually happens routinely in the US system."

This is the irony of it. A huge amount of public money has been spent keeping Charlie Gard alive. I really doubt that a US insurer would spend that amount of money in the same circumstances.

The other baby people mentioned up thread was charlotte wyatt. I remember being heartbroken as I had a preemie baby around the same time. It played out in the press but not like this on social media - early days. Two years later she was well enough to leave hospital but had to go into foster care. I can't see anything about how she has done since 2006 I don't suppose anyone knows?

The medical circumstances were entirely different from Charlie.

I think she may still be alive, and I did hear upthread that the dad of Charlotte had been in touch with parents of Charlie Gard. When I looked the last articles show she had been taken into foster care. However the dad still saw her and said he thought they had made the right decision, despite her still being extremely affected. He said he wasn;t able to look after him as a fully appropriate care package had not been put in place for him to to so. She was about 6 or 7 then.

Apologies for this being daily failbut it's a similar situation then an update on charlotte from 2009

www.dailymail.co.uk/news/article-1163805/80-lawyers-refused-help-save-Baby-OT-leaving-parents-fend-themselves.html

It's is ironic if not infuriating that the American right are using this as an argument against socialised medicine. In the US the parents would only have a 'choice' if they were loaded.

Someone has found the GOSH QC direct email and has posted it on the group, encouraging others to harass her by.

I don't think Margaret has a personal connection (she said she hasn't), I think she has a point. The majority of this discussion has been measured and insightful but a few comments have been pretty distasteful.

A few have, yes. The ones about the sunglasses are complete dickishness, for example. But most of the ones Margaret lists aren't remotely objectionable: saying this is a circus, for example. It is.

And thus in trying to present quite mild, indisputably accurate remarks like that as vile, CA-esque behaviour, Margaret actually entirely undermines the argument she's making. And in the process, makes it look as though it's the idea that the parents are incorrect that she objects to, rather than a smattering of people crossing the line.

This case highlights the fundamental clash between the UK no USA when it comes to healthcare. It is totally impossible for US citizens to understand that we ALL have access to world-class medicine and medical care at ZERO cost.

It isnt ZERO cost though.

Maybe to those who don't work.

My tax and ni bill was massive. I paid for my medical care as do most of us.

Yes they do have death panels though, watch the film John Q.

Just sharing a little of my story (helps posters a bit from a parents view). We had a 14 month old wonderful little girl who was ill for a few days (back and to from GPS, but back story too long...........). Eventually she was admitted to local hospital and after 5 hours had massive fit. When the consultant (eventually) got there, she was on life support. They just said that they have to send her to Alder Hey for tests (didn't tell us any more). She got to Alder Hey where we had to wait for 12 hours before we received any info. She was brain damaged but we would have to wait to see if there was anything they could do. She received one to one care from a highly specialised paediatric nurse. (I think we had 2 or 3 just consigned to us). These nurses don't just look after the patient, they look after the parents too. They fed and watered us, counselled us and became our friends. Amazing job they do. After a couple of days on life support (during this we made sure that one of us was with her 24/7) another consultant came to see our baby. He told us that there was hope and she might recover! Can you imagine our euphoria, there was HOPE!!!!!!

We carried on sitting by her while she received her daily treatment. One day the nurse said "would you like to hold her and cuddle her?" You have no idea how wonderful that was. (Later we realised that she knew there was no hope and so moving her wasn't going to make a difference). A few more days, I walked in and realised that she wasnt the same child anymore. My beautiful daughter had gone, there was a poorly child getting thinner by the day, but she really wasn't there anymore. I have no idea what the consultant was thinking of telling us that she could recover. We talked to the nurse, I believe that the doctors were just waiting for us to make the right decision, which we did and she died peacefully in our arms a few hours later.

I can totally understand what Charlies parents are going through, and the problem is that even doctors have different ideas and tell you different things. It must be horrendous for the parents at the moment and I would love to give them a hug and tell them my story. Communications with the staff must be at an all time low too. They need the nurse we had who counselled us throughout and I will always be grateful to her. (We went on to have another daughter 2 years later who gave us the will to carry on living!!)

Thanks for the new thread.

This really is a perfect storm isn't it. Ties in with rampaging social media, Trumpism, mistrust/dismissal of science and 'experts', alternative facts, upsurge of extreme right wing on both sides of the Atlantic, conspiracy loons and on and on.

And in the middle of it one desperately ill little boy.

callmeadoctor thank you, and all the other parents on these threads who have shared their stories.

I've worked in ITU (a long time ago now, and adults, not children). I have no doubt that this will be affecting every one of the staff there, from consultants to cleaners. They have no redress to the constant vilification and threats from the keyboard army and their ill-informed venom. I'm going to email GOSH with a message of support. Not much, but better than nothing.

I stand by the post of mine that Margaret quoted: I think Connie Yates has completely lost touch with reality, most specifically the reality of her son's condition. I have empathy for why that might be, and for her generally, although it is definitely tempered by serious concern about what that has caused.

I do think that posts about sunglasses, facial expressions, etc. are out of line. People have been convicted of actual crimes largely because their grief reactions, in a complex and hugely difficult situation, don't match up with what armchair psychologists who have never experienced these things think they "should" be. Life still goes on when you have a very ill child; you have to eat, take breaks, maybe even wear sunglasses because when you dare to go outside, the sun might be in your eyes. (Or perhaps your eyes are sore and sensitive from crying and sleeplessness.)

I don't think Chris and Connie's actions are above criticism; as has been rightly pointed out, parents tragically have to make these decisions every day, and it is rare, very rare, for it to end up in this kind of situation. But it should be informed, and as much as possible, empathetic criticism.

Bore I just sent them a message of support and had a lovely reply. As you say, it's not much. But anything we can do to help boost their morale is worth it. They must be feeling desperately maligned and misunderstood, it's madness.

Thank you Bore (Have reposted on new thread as this has closed). The paediatric nurses are amazing.

Callme thank you for sharing. I'm truly sorry for your loss.