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?

sauvignon my son has a rare chromosome disorder known as 16p13.11microdeletion syndrome so i get being an expert in your childs condition most Drs haven,t heard of it thankfully my son doesn,t have any of the physical symptons of his disorder which can include epilepsy and hypermobility and he is very physicaly healthy but the geneticist think it maybe the underlying cause of his autism and learning disanbillities and i feel i know a hell of lot more about my sons chromosome disorder then most DR,s

What I don't understand is that, in the original judgement, Connie and Chris agreed that Charlie's current quality of life isn't acceptable but now it is. He hasn't improved in that time, he's deteriorated. I do think that they are actually deluded. I can't blame them for that as I haven't been in their situation so don't know how I'd react.
I agree that they are being manipulated and that those doing the manipulating will lose interest as soon as Charlie dies and move on to their next project. I genuinely worry what will happen to them then.

sauvignon
My ds gf spent last summer at ucl interviewing parents of children with rare disorders and putting together a database of symptoms etc so that doctors and parents will have better accessability to more information.

Sos it's in the court judgment, the hospital ethics committee looked at doing a tracheostomy but decided it wasn't in his best interests, i think because he was so unwell there would be no prospect of him going home or moving so why take the risk of a surgical procedure.

I thought the Today interview was a good one because she was asked specifically to state her thoughts about potential of treatment and Charlie's suffering. It's always better for the interviewee to make themselves look deluded rather than being goaded or rubbished by the interviewer.

Sorry but no lay person can be an expert on a medical condition. They may know how it has affected themselves or someone close to them, they may even have read a book or some papers. That does not make them an expert. Doctors study and train for many many years. I have cancer and it astonishes me how some people on forums think they know better than doctors what treatment they should have.

My GC had a major OP at days old. This was at a specialist childrens hospital (not GOSH). At the time there was some negative publicity going round about the hospital.
As relatives what we found intrusive was TV camera's turning up. We have complete trust in the hospital - the media less so.

bruffin
That's a positive step in making treatment of rare conditions a more joined up affair. However, even within one condition the range of symptoms can vary greatly and I think this is what makes the treatment so difficult.
Charlie clearly has a severe form of his condition, whilst other children with this may live with the condition for some years before being affected.

Awful unballanced interview on LBC.

Nick f is now keeps saying another girl was exactly the same and then a year after this medication she was riding a bike.

Then an older person called in saying the NHS is wasting money on this and it should be used to "treat old people that have worked hard all their life".

It's all just horrible

I just hope he is made a ward of court and thats it, Gosh cannot win whatever happens because if he dies on the flight they will be moaning, if he dies having the treatment, its because it took too long, if he does after the treatment they will find something else, I feel that everything has gone to far, they are creating too much,they need to do whats best for Charlie now and thats letting him pas away peacefully, I personally think they are cruel.

its complete delusion and denial now isnt it

how can he be looking at an ipad he cant see how can she think thats correct

i find it uncomfrotable that shes doing all the rounds on tv instead of being with her son

I should add to that story about A&E though that my nephew's consultant was furious when he found out the next morning (despite explicit instructions on the notes to page him for any admission at all, they hadn't done so because he wasn't in general call that night) and urged my sister in law to put in a complaint. You definitely become an expert in your child and their condition but you also have to trust that the real specialists are doing their very best, including consulting with colleagues elsewhere, to treat your child, and that on big 'medical' decisions about quality of life that it's less about how your child got to that point and more about what is best for them at that stage.

I refuse to link it here. But here's a part of the signatory statement

It is not the purview of the state or the hospital to make these decisions for his parents

I don't understand this insistence that parents' decisions must come first every time. Would they take that view in relation to, for instance, Tracey Connelly, Karen Matthews or Fred and Rosemary West?

Even if it is decided that there could, possibly, be a tiny chance that this treatment could make some kind of small improvement, or slow the deterioration or whatever, just look at the boy. How on earth could he cope with a transatlantic flight in his condition (notwithstanding the fact that he'd presumably bypass the usual airport routines).
And what happens afterwards? He's had the 'medicine.' Maybe there's a small difference, maybe not. Where does he continue his treatment? Stay in the US once funding's run out? Or come back to GOSH, and try to pretend they had faith in them all along?

I find it uncomfortable that she's doing all the rounds on tv instead of being with her son

She may come to regret this if the judgement doesn't go their way.

I meant that Connie is plausible because she says things like "I am his mother and I would know if he was in pain I don't believe he is. Any mother would not like to see her child in pain and if I thought he was then I wouldn't be fighting for him." So every single parent in the land can sympathize with the fact that on the whole parents do know their children better than anybody else and if you thought your child was in pain you would do whatever it took to make it stop. But as I said nobody is referring to the judgement where actual medical experts believe that he is in pain so as far as the general public knows the boy's not in pain and that treatment will help him to be a typical child because the only person who is talking is his mother and she can say whatever she likes and the hospital cannot speak on Charlies behalf because of patient confidentiality. I doubt that anyone in Charlie's army has actually read the judgement or they wouldn't be in the army in the first place.

Nick Ferrari is Daily Mail lite. It really does not surprise me that he has chosen - and it will be a deliberate choice - to misrepresent the facts in order to take what he perceives to be a populist line on this.

I agree with you Ceto and totally disagree that, as CA supporters often say "parents know best" when it comes to medical treatment.

The one positive of all the interviews imo is that both gosh and the parents will have to say to the judge, there is NO agreement on the baby's condition or prospects. The last court decisions were made on the basis that the parents and the treating team agreed the child's quality of life was unacceptable. Clearly that wasn't true, or isn't any more. I have no idea what will be in the court's remit but the judgment has to be made on the basis of honesty otherwise it is unworkable, as we clearly see this week.

If he goes to the states and does not 'get better' (whatever's that may be), they will blame gosh for not allowing him to go sooner. They can't win.

I can't listen to the interviews anymore they wind me up too much. The parents are in denial, the slagging off of GOSH is abhorrent. Nothing GOSH do now is going to be right.

If the little bike riding girl is the one they keep posting photos of, in the 'before' photo, she looks about 3 and she has her eyes open so she's obviously not as severely affected as Charlie.

I remember reading about a case in the US where a girl died due to diabetes because her parents prayed rather than take her to a doctor when she became very unwell. I wonder what the CA 'parental rights!' lot would make of that. Parents don't always make the best decisions for their children.

Mshoolies that's what I'm failing to understand. Why admit to the court that his current quality of life was not acceptable (which was brave of them) but then seemingly change their statements once the hearing is over? They now seem to be implying that they don't really believe what the doctors say about his quality of life at all...and also that they are happy for him to continue in this is state for at least another 3 months if they were allowed to trial the drug. They say this morning in thier Instagram 'Chris gard has confirmed he (Charlie) doesn't have catastrophic brain damage'. How has he confirmed this?

The saddest thing in all this is the frenzy and interference from people on the Internet which has lead to Pope ect becoming involved. I truly believe this has been the most damaging thing for the family and for Charlie. I'm humbled to hear all the posters stories who have been in similar scenarios and the brave and incredibly painful choices they faced. Would the parents have been allowed to peacefully come round to facing the reality of their situation if they hadn't been hijacked by religious fundamentalists, presidents who want to use them to make political points, and general weirdos who want to live through others dramas as well as their own? I can't help but wonder. I lost my father in an unexpected and shocking way as a teen (I'm not comparing this to losing a child in any way) but for months I was convinced someone had made an error, I would look for him in crowds or on the street, that I would see him walking around and it would all be ok again. This is what shock and grief can do to people. If I'd had 100,000 people online plus the pope and president backing up my delusions I certainly wouldn't have come to terms with accepting reality...

I suspect GOSH will present compelling medical evidence why Charlie cannot go to the US, probably the same ones that would not allow him to go home the other week.

So has the little girl with the bike the same condition as Charlie?

Connie Yates brings her up in her interviews a lot.

ChardonnaysPrettySister, she is a milder case, apparently there has been 16 cases of the severe strain that charlie has and they have all died.