Charle Gard 21

[11122aa]

While discussion is almost over I have set up this thread incase anyone wants to post any comments to posts in the previous thread.

There's a Wiki page about Charlie. It's umm interesting to say the least. Of course now you've got folk spouting off that if you want to know the facts then to read that.

I do wish that the papers would stop repeating that they took home a healthy baby, they didn't.

Agree he was never healthy despite the way he initially appeared. I am still so angry about all of this. It does seem as though it is going to run and run.

Charlie appeared healthy to his parents. They then could not accept that he was born apparently healthy but he wasn't. I really do think the parents were offered support but they were driven in their belief that a life saving treatment was out there and their child would become normal and healthy. I don't think anyone ever managed to persuade them otherwise.

I don't see class has much to do with it. They have had as much access to care and advice as anyone else. They had fantastic access to the courts. I would like to think they have access to child bereavement charities that offer excellent counselling.

However, they chose a different route to the majority of parents who find themselves in this position and I think it will not be a quiet future, especially when another baby comes along via the options available to them. I don't think it helped that Connie is a nursery nurse and is surrounded by babies and children in her job. I wish them well in the future, but a peaceful one, without the media would be welcome I would have thought. Not holding my breath though.

I think that when a couple gets together and decide to start a family compulsory genetic screening should be done so that tragedies like this do not occur, or if a rogue gene is discovered at least all involved will be aware of what to expect so treatment, if any can be given from birth.

The misconception that irritates me is 'the brain scan was normal', as proof of C&G's contention that Charlie wasn't as brain damaged as GOSH said. It was his muscles that were the problem. Reporters always miss out the fact that his EEG was highly abnormal, meaning that his brain was unable to function. The prolonged series of severe epileptic fits were part of the condition.

I think C&G knew this. They didn't want Charlie to have the EEG that GOSH was proposing until they heard that Hirano had requested it.

Also, the Wiki article keeps saying that babies with Charlie's condition 'usually' die in infancy. 'Usually'? Afik, no baby with the same condition has survived.

Who is going to pay for genetic screening for every couple? This was a vanishingly rare condition and both parents had to have the faulty gene. How do you screen every couple on the tiny chance there is a problem? One surfaced in mine which no-one knew about and, like C and C, both parents had to be affected. Again, it is a very, very rare condition that affects few people. How can anyone screen for this if you don't remotely suspect both the parents may have the faulty gene?

Maryz, I so agree with you on that.
I feel pretty angry about the heavy censorship of the CG threads at the behest of the reporting crew.

I was on the Dax threads and raised the issue of fund raising for that when there was free accommodation and treatment was covered.
Apparently that was unsupportive to parents and the thread was deleted.

I thought Connie was a carer not a nursery nurse?

Sadly I think it unlikely they will have another child. I doubt very much they will stay together.

It all just seems to build on the awful hysteria about experts that started with Brexit. For some people just the fact that GOSH is a large, public institution is enough for them to think that they are wrong. Unfortunately the people with the loudest voices are often the most ill informed and, dare I say it, uneducated.

I think that the anonymous article in the Guardian only covers the tip of the iceberg of what really happened i those months.

I also believe in human fallibility and every single worker in that hospital and every other hospital will admit that sometimes they get it wrong. However, the other side are also human and also at risk of getting it wrong.

Misinformation then. I read she was a nursery nurse elsewhere.

I too have a concern about censorship. Supporting parents is laudable but it cannot be at the expense of reasoned and informed debate. If we only support parents, we go against the spirit of the Children's Act which plainly is there to give children a voice and this may be against the wishes of the parents, as in the Gard case. There are cases when parents are not the best judges and, whilst deserving understanding, they do not deserve unquestioning support.

Beautifully put, Bubbles

The suggestion by the 'GOSH medic' that they suffered as much as the parents is disgusting

Derxa you've already been asked at least once to link where this was implied ... just wondering if you've managed to find it yet?

The correct quote is: "the spanner in the works has been a parent-driven exploration of all alternatives internationally" - it's the search for what the hospital viewed as futile treatment that is the problem, not the parents themselves

And well done for pointing this out, Mary ... another case, surely, of a remark being twisted to suit a particular narrative then spouted endlessly as "the truth". Sadly, it happens all to often

Sorry about the emoti, auto correct failure.

This is so intrusive. It reminds me of a flock of ravens picking over the remains of some unfortunate carrion.

(And before anyone pipes up, I have every right to read and comment.)

We live in a post-truth world.

Somebody's, nay, anybody's opinion stands as just as valid and valuable as somebody else's, even if better qualified.
And opinion seems to counts as much as fact.
And a heart-rending or emotional opinion counts the most

I agree, it's intrusive to continue pouring over details of this tragic case, but lessons must be learnt as sadly situations that are ethically difficult will happen again.

GOSH had considered the ethics of ventilating Charlie in November 2016

I last posted on thread 8. Since the court case, I've found this thread and its predecessors a difficult combination of thoughtful commentary and really unpleasant, prurient speculation. What business is it of anyone here if Charlie's parents split? Why would you even bring it up for discussion, knowing that they've had an appalling loss? Some posters here should be ashamed of giving voice to their own worst instincts.

nina2b it's okay, I know you sit there hunched over your keyboard reporting everything on these threads.

As has been noted before though, you contribute nothing other than a direct criticism of the threads existing and try to deliberately cause trouble

whereismyparachute

I am actually using an iPhone. Hunched? No. Reading - yes, as is my right. Reporting? No - I think it's important that your contributions stand and that others are able to read them.
People should judge for themselves. And they do.

Today 12:52 HerculesMulligan

I last posted on thread 8. Since the court case, I've found this thread and its predecessors a difficult combination of thoughtful commentary and really unpleasant, prurient speculation. What business is it of anyone here if Charlie's parents split? Why would you even bring it up for discussion, knowing that they've had an appalling loss? Some posters here should be ashamed of giving voice to their own worst instincts.

Agreed.

If some of you wish to ally yourselves to the work of The Daily Mail, then words really fail me.

There were some thoughtful and decent contributions when the baby was alive. Then, the discussion - under this title - was pertinent. Now it leaves a bad taste, particularly regarding how the parents' future might pan out. It is none of your business.