Charlie gard case thread 2

[Fancythat69]

The last thread is full, Not sure if another has been started.

Theres a CA rally at GOSH planned for tomorrow. What are these people on?

I was just searching for that post by @unweavedrainbow, thank you, it was excellent.

Just lost a huge post. Was trying to translate a detailed article for you ... Not sure why I was looking as most people on this thread have made their mind up

That's a shame; I was looking forward to reading it - perhaps you could link to whatever the site was as I have friends who speak a number of languages and might be able to help?

And Elvira why would you say, in effect, "I don't know why I'm bothering"? After all, many of the posters here have been only too willing to look at information from any number of sources, so why would this one be different?

Unless of course you were somehow mistaken about the existence of this foreign article ... ?

When ever I look at photos of Charlie, I think of this one. He has looked completely dead behind the eyes for the vast majority of his life. Even in this picture when they thought he was 'perfectly normal' he doesn't look like he's there anymore. You can see the suffering that he was probably already going though at that point.

They will never be able to get back the baby they had for such a short period of time. They are just condemning their child to a life you'd be hard pressed to find any adult wanting to live.

Thank you Darth. A good idea to repost that here.

That's a shame; I was looking forward to reading it - perhaps you could link to whatever the site was as I have friends who speak a number of languages and might be able to help?

You may be overlooking the fact @Elvira that MN is a global site, and so for many MNetters, English is not their first language.

Do post this document as it stands, I'd love to read it.

unweavedainbow's post is indeed excellent and sets out the issues with great clarity.

On a slight tangent, a lot of posts refer to Charlie showing signs of organ failure/multiple-organ failure. We have no way of knowing whether or not this is the case. The GOSH clinicians have, quite rightly, made no mention of his clinical condition other than what was included in the original judgement in (I think) April.

From the latest photos Charlie is undoubtedly a very very ill little boy. The fact that he is being tube-fed means he is receiving calories but, as he can't move and hasn't done for months, whatever muscle mass he had will have atrophied and any excess calories will be converted to body fat. In addition, positive-pressure ventilation itself causes a degree of oedema (fluid retention), particularly if high pressures are required to increase blood oxygenation.

I'm not saying he isn't developing organ failure, I'm saying we can't judge that from the published pictures alone. At least I can't, and I've looked after many, many patients with varying degrees of organ failure.

Presumably, the GOSH clinicians will update the judge at tomorrow's hearing.

Just got back after volunteering all weekend with no signal and my news tells me Charlie is going to become American so he can go to America.
Ive5had 9 hrs sleep since Thursday - someone kindly update me?

As I said on the other thread, it's perfectly possible to feel a huge sense of sympathy and sadness for Charlie's parents whilst still having concerns about the manner in which their campaign is being conducted.

Their situation does not make them impervious to criticism, especially when the manner of the campaign is becoming increasingly hostile and negative towards GOSH, the staff treating their son and frankly, anyone who has an alternative view or has sought to correct some of the many mis-conceptions or untruths being expressed on social media, on sites controlled by the family.

As posters on this and other threads can testify, the CA Facebook page is heavily censored and posts that do not fit the narrative that Charlie can and will get better with treatment are routinely removed. At the same time, posts with incorrect information, posts blatantly slandering GOSH and the medical team and horrifically posts in response to parents who have been in similar situations calling them murderers who obviously wanted their child to die, are all allowed to stand.

Due to patient confidentiality, quite rightly GOSH are not able to challenge or refute many of the outlandish and inaccurate statements being made. As such the narrative being played out is increasingly biased and unchecked by reality.

To be clear, I fully support the parents rights to go to court. It's proper and right that were there is a profound disagreement in a case such as this that there is a mechanism for all the evidence to be independently checked, verified and a determination made.

What I'm disturbed by, is that having exhausted the legal process the response has been the highly charged negative campaign against the very people providing Charlie's care - with no thought to the impact this would have on the reputation of a world class institution and parents of other children being treated there.

I'm not a medical expert, but having read all the information in the public domain it seems clear that even if treatment (which is experimental and has never been used on anyone with his condition) is successful, it cannot possibly undo the brain damage Charlie has already suffered. As such the application of intensive therapies and treatments does not represent an opportunity to improve his quality of life, only to (potentially) prolong it.

sitting thr making postrs for a protest is jut so wrong

you are not charlie thats the whole point

Bore this from GOSH's website: www.gosh.nhs.uk/news/latest-press-releases/gosh-response-charlie-gard-high-court-ruling-today

In Charlie’s case, his brain, muscle and ability to breathe are all severely affected. In addition, he has congenital deafness and a severe epilepsy disorder. His heart, liver and kidneys are also affected but not severely.

The date on this is May, so almost two months ago.

Looking at those latest pictures, I don't think that poor boy is going anywhere.

I'm not sure why you are so unconcerned and dismissive of the ethics of this, Elvira.

Ethics are surely at the very heart of this, and it is for very sound ethical reasons that we don't conduct medical experiments on babies, no matter how ill they are.

www.thetimes.co.uk/article/charlie-gard-xn9wwsz0m

Sunday Times article.

Here you go MomaGee. www.dailymail.co.uk/news/article-4678532/We-ll-make-Charlie-Gard-American-save-life.html

It's just two ultra-right wing, pro-life, Republican congressmen who want him to be given resident status in the US. While they are hell-bent on destroying the Affordable Care Act, thus denying healthcare to many many US citizens.

I am just so sad that the relationship between the doctors and the parents broke down so badly that they couldn't agree on a treatment plan between them. How did this happen? Does it happen often? Obviously not in such a public way, but it must happen.

I can imagine I might find myself unable to think rationally in such a situation but I would hope my mum or my brother or the hospital chaplain or someone would sit me down in a quiet corner and help me figure it out.

It seems that these poor parents have no-one who can do that for them and that is really sad.

I'm so torn on this issue. I agree wholeheartedly that the child can't be allowed to suffer needlessly, and if there's no chance of improvement, the ethical and kind path would be to stop intervention and just keep him comfortable.

However, DS was diagnosed with catastrophic brain damage at birth. The cord was compressed during labour, stopping his oxygen supply, and at some stage the lack of oxygen made his heart stop. He was completely blue and lifeless at birth, and it was another 12 minutes before his heart was started again. It was 4 hours before he was stable enough for us to see him. For the next 24 hours he had constant seizures and was on a ventilator. His blood pressure didn't stabilise for a week.

When he was 10 days old, we were told he had sustained massive brain damage and we'd have to look at rearranging our lives to care for him, if he manged to get home. He had no reflexes, no muscle tone - he was like a ragdoll. He had to be tube fed because he didn't suck.

4 days later, inexplicably, he started to improve. He got better and better every day; the hospital called him a medical mystery and their miracle baby. Students were brought in to have tutorials beside his cot and papers were written about him. No-one knew what had happened, and to this day, we don't know why he recovered so well. He's 5 now and he's absolutely perfect, a bright and capable little boy with no issues.

If the proposed treatment has any chance of working, I'm not sure it should be written off because of brain damage. Brain damage seems to be difficult to conclusively assess. If there's even a slim chance of improvement, shouldn't he be given that chance?

The parents say he is not in pain. I don't agree, sadly.

Edema, also spelled œdema, is an abnormal accumulation of fluid in the interstitium, located beneath the skin and in the cavities of the body, which can cause severe pain. Clinically, edema manifests as swelling.

en.wikipedia.org/wiki/Edema

glad it all workd out puffin u must b so happy

but its really not comparable to months of brain damage and a rare disease

Thanks MissHavisham, I'd missed that.

If tomorrow GOSH clinicians confirm that the organs are now failing, I hope even more that the judge will move to ensure that life-support is withdrawn as soon as possible.

And thank you smilingmind for the link.

Is it time for some regulation of internet fundraising? I don't know how it could work, but it seems that currently anyone can set up a fundraising page with no check on who they are, what they are collecting for, and how that money will be spent. It seems wide open to scam artists preying on credulous people.

Not suggesting that the fundraisers in this case are scammers, of course, but
there does seen to be a lack of clarity about what the money is for and how it's going to be spent. And this is coming after the Baby Dax case, where there was a similar lack of transparency.

I'm not saying he isn't developing organ failure, I'm saying we can't judge that from the published pictures alone. At least I can't, and I've looked after many, many patients with varying degrees of organ failure.*

Thanks for sharing this info. From the sequence of pics of Charlie, though, it does look like he has experienced swelling quite suddenly and recently, which would suggest oedema rather than fat, wouldn't it? Would it be common for a patient to suddenly begin experiencing oedema related to ventilation after some time on it?

I can't help but notice a lot of pro-CA media outlets are choosing to use the earlier pictures of a younger, healthier-looking baby Charlie rather than the more recent one where his body is clearly swollen.

It must be so distressing to have no hope.

I assume that is what has lead to the breakdown in communication between Charlie's parents and the HCPs, the parents are unable to accept there is no hope.

It's unusual, the staff are so good at giving difficult news. I feel for them, I really do. Caring for a baby you know is suffering must be horrific.

While no one looking at that picture can say conclusively 'that indicates organ failure' (thanks for your informed take Bore) I can't think of any instance where a person swelling up and looking bloated is a sign of improving health. All I can think of are examples where something (else) is wrong.