Charlie Gard case

[LovelyBath77]

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

sorry total i disagree their not medics how could thy possibly know just sitting with him

You're just as entitled to your opinions as I am mine.

I've seen people in intensive care watching like a hawk. If they're there morning, noon, and night, they become more tuned in. They see any differences between shift changes or from one day to the next. Staff come, do what they need to do, and then exit to the next task, before returning to rinse and repeat.

Plus, he is their flesh and blood and there is nothing more powerful than that.

Charlie isn't "fighting" though, is he? His cells are dying and he's being kept alive by a ventilator, tube (presumably gastrostomy feeds) and intensive medical/nursing care.

He can't breathe for himself and he can't orally feed and he's suffered extensive cerebral damage. How is existing through machines "fighting"?

Am I missing something or has the daily fail just pulled all stories on this case from their online front page? Wonder why?

A self-proclaimed "army" versus a world renowned and highly respected hospital specialising in the treatment of sick children?
I know whose side I'm on. For the great majority of normal, rational people, there is no other side to pick.

KnitFast the story seems to have gone on all the obvious online papers. Hopefully that's as the result of a sensible legal move too.

KnitFastDieWarm

The story is still there but has dropped down the page considerably.

It's presented as "Doctors bowed to global pressure to give the desperately ill baby another chance"

They do, however, give quite a good explanation of the "new evidence".

The ‘fresh evidence’ which has sent the case back to court involves a debate about whether the therapy can successfully reach Charlie’s brain.
Called nucleoside bypass therapy, the treatment involves a drug that replaces deoxynucleosides, which are naturally produced in healthy people, to repair DNA. But for it to work, the drug would need to penetrate a biological membrane known as the ‘blood brain barrier’.
This barrier separates blood circulating the body from the brain’s fluids. For the medication to fix cells in the brain – as well in the rest of the body – it needs to cross the barrier.
The High Court was told there was ‘no evidence’ the therapy could cross the blood brain barrier, and the judge adopted this position in his ruling.
But the new evidence challenges this. In their letter, the seven experts said there was ‘substantial direct and indirect evidence clearly demonstrating’ that the drug can cross the barrier.
If it can, experts believe there is a small chance it could make Charlie better. The US doctor did tell the court in March he believed his experimental drug could cross the blood brain barrier – but his was a lone voice.
If the judge had heard all seven voices saying the same, it raises the question of whether he would have ruled there was ‘no evidence’ the drug would work on

Although "make Charlie better" is, I think, misleading.

I'm very much hoping that's the case and there's been some behind the scenes legal/media wrangling to try and give this poor child a bit of dignity and privacy

Sorry, chopped off the last tew words there "... someone with Charlie's condition ”

This was in conclusion from the European court human rights

It said: “The domestic courts had concluded, on the basis of extensive, high-quality expert evidence, that it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”

puzzled, the dad was running the online Charlie's Army blog, I haven't checked it recently to see whether he has been posting.
He was also interviewed on LBC yesterday.

KnitFast I didn't look miles down, I was obviously wrong - but one would hope that some conversations have been had at the top about Charlie's privacy.

Been lurking on this thread and others similar. Obviously v sad for parents but wish they could let him go.
Does anyone know if the judge rules with GOSH next week can the parents challenge it at Supreme Court, ECHR, etc .And continues this circus for longer? With this poor mite suffering for another month or so.

Just seen this on the FB page:
Good Morning All. Just to make you aware we are currently receiving thousands of posts for the page. We are currently focusing on specific posts the family would like us to put out there with a few supportive messages being approved. This is also so that the 9 admins can keep an eye on the comments for your and the family's protection legally.

So, am I right in thinking they are editing the page so that only selected supportive messages are posted? And any justifiable queries about the campaign are deleted/hidden?

So what if they are ? Do you think the family want to read anything unsupportive when they are in such a hellish situation ?

Yes, they censor everything on the pages, it has to be admin approved. They remove and block people if they don't agree.

There is an agreement that you have to agree with before they will let you join.

Someone posted it earlier, a set of bullet points about being supportive, sharing frequenting and using hashtags.

Sorry Total but I disagree.

Charlie's mum doesn't know that Charlie is not in pain. He cannot move, wince or cry. She must cling to a belief that he is not, because the thought of him being in pain, as it would for any parent, would be too hard to bear.

Medical staff on the other hand, know he is most likely to be in pain and discomfort because of all the treatment and medical equipment and intervention, as adults who have had these things done - intubation etc tell that it is painful and uncomfortable.

As for medical staff changing shifts and she being there all the time? I disagree. Those staff will be watching him like a hawk, observing all the signs and readings that they have been trained to do. They will be regularly consulting and sharing observations. They will know him and his condition better that they know themselves.

I think one of the judgments mentioned that the monitors show he is having a number of seizures which aren't visible because he can't move. That in itself will cause pain. The mother must surely know this is happening and she is really deceiving herself if she believes this will not cause stress and further brain damage to him.

@Maudlinmaud

Does anyone know what the mothers occupation is/was?

I believe she is a care assistant.

Maudlinmaud if I remember correctly she is a care assistant for disabled children.

Which is I suspect, what has kicked this whole thing off from the very beginning.

Won't his heart rate indicate if he's in pain or having seizures?

I'm feeling cautiously hopeful that come Monday, this will all be dealt with in a firm and final way (as it needs to be now) and that Charlie can go on his way in peace. I'm not even reading the CA or family stuff, frankly I think they are in a very weird parallel universe of delusion and stupidity, so I'm not raising my blood pressure by reading their crap. Because it is crap. At the heart of this is a very poorly little boy who no one can do the right thing for and that's making me feel very sick today

He was born on the edge of life, and will become a case study for medical ethics the world over. It's such a very sad epitaph for a terrible situation for a person to be in.

Mum I'm sure I read somewhere in one of the court papers, it's only possible to see the seizures when he's on an eeg as his muscles no longer work well enough to show spasm. However the seizure activity on the eeg was pretty severe and frequent. As Charlie's heart is failing and is probably being chemically supported I have no idea whether he would be able to show an increase in heart rate in response to discomfort or stress.

However the ventilator, cannulas, his heart failing, kidneys failing, liver failing, frequent suction etc would be awful in terms of discomfort for an adult to be aware of, never mind a ten month old baby. There is a very helpful comment further up the thread from someone with a medical background discussing that managing pain relief and sedation for someone this critically ill is very difficult as you have to balance toxicity and affecting other meds/other functions.

If multiple medics who have spent their working lives caring for children in ICUs say they think the probability is very high that a child is suffering and that the degree of suffering is likely to be severe, they're likely to know what they're talking about.

Words fail me at the comment up thread to the effect of 'well if he's already suffering this much why worry about a little more suffering from this experimental medication? (which has already been judged to possibly involved pain if not actual mutation)'.

FFS the ready dismissal of this child's perception of what's happening to him is horrifying.

That is interesting, surely as a care worker she has some understanding of the situation her son is in. It just makes things even unclearer for me. I have heard her say the treatment will give Charlie a chance at having a normal life and that his brain damage is not as severe as the public have been led to believe. I trust a mothers instinct but I really think something is very off with Connie.

It is the pain he is likely to be in, beyond anything else which is upsetting me. I remember towards the end of my last (very long) labour being in so much pain that I honestly wanted to die, it was just too much for me to cope with. I was very vocal about it too, and at least able to try and shift position to try to help.
Imagine being in pain but not being able to do anything about it or ask for help!

Are the 'give him a chance' posters here actually reading anything the info being given by posters with medical training? Details about his condition, the difficulty with his care and his likely discomfort ...

I know the majority of the really informative posts here are quite long - is that putting them off? They're not full of jargon, they're easy to read.

HOW can anyone be reading them and then still trot out all this mumbo jumbo about 'nothing stronger than flesh and blood', and mothers knows best? It's utter fantasy. Peddling dangerous twaddle.

The poor mum is indulging in this fantasy as she is surrounded by it now and the truth is too hard for her to bare. What's the excuse for total strangers?