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?

She is clearly not as stupid as some have made out. Great interview from Justin.

I too keep feeling that I am too involved, but also feel it is really important to have the medical ethics debate and also the parents rights verses responsibilities debate.
Connie Gard is so plausible when she speaks. Even though I know she is talking from a place of blinkered grief, I find myself wavering. I know people on here are loosing sympathy for the parents and I can truly understand that. However I look at them and see trapped individuals. They are trapped by their own overwhelming grief, which refuses to allow them to hear and accept the truth. The metaphorical 'double padlocks' have been put on by CA. All that 'support' crying that 'anyone who stops life support murders Charlie' and 'you are only a real mum if you fight', means even if Connie and Chris do decide to end this now, they have the baying mob to deal with. And a whole layer of additional perceived guilt - 'look at all the people we have let down.'
Out of interest does anyone know who's decision it was to go public with this legal action? Presumably the parents ? In the long run I think that will be a big emotional mistake for them, whatever the outcome

Connie will also be on BBC Breakfast 'shortly' .

On LBC between 8 and 9.

who's decision it was to go public with this legal action?
It wouldn't have been the hospital. They have a duty of confidentiality to their patients of whatever age.

I think they've realised that the rabid criticism of GOSH, the vicious name calling of doctors and nurses as 'murderers' and 'cunts' by their supporters and it being permitted unchecked on their FB page is affecting their level of public support.
In the last couple of interviews I've heard, they seem to be trying to make an effort to not criticise the hospital on one hand, although on the other hand they are still getting the digs in.

I don't know if she's stupid but she's deluded if she honestly thinks that he enjoys watching things on the ipad and the only reason that he has a ventilator rather than a tracheotomy is that GOSH has some weird need to trap him in his hospital bed.

I suspect they'd be delighted if they could move him to another hospital

Connie was on bbc breakfast just now and she really is very very persuasive. I can see how so many people have been sucked in to the narrative.

she's deluded if she honestly thinks that he enjoys watching things on the ipad
I thought that too jiggly, the court judgement said he can no longer open his eyes.

I found Connie very persuasive in how she speaks. I have enormous compassion for them and they have found hope in very small things. I can't say I wouldn't do the same myself. On the other hand, as so movingly set out by 3littleoctopuses, I don't know how I could leave my child at this point for more than the time necessary for his own care. So I guess I prove the point that none of knows how we'd react. To be honest the whole situation is beyond imagining for those of us who haven't had to experience it, isn't it?

But her points were sometimes disingenuous (GOSH may not have a specialist in the specific mitochondrial disease but consulted heavily with those who did for example, and the fact that the other children treated have a different sort of depletion syndrome matters enormously as they 'only' have muscle weakness and not brain damage) and sometimes worrying, if the interference of Trump and the Pope really has made a difference to an ECHR judgment.

It was hard listening.

Jiggly were those things said on the Today interview? I haven't heard that one.

The thing is she says in every interview that she doesn't believe charlies in pain. I have yet to see an interviewer refer to the judgement where numerous experts confirmed they believe he is. So each interview leaves us with the impression of a beleaguered mother who is just doing the best for her son who the hospital are deliberately withholding treatment for for no good reason. No balance at all.

He can't open his eyes and hasn't been able to see for a very long time - it's absolutely clear in every single photograph. And he can't breathe unaided.

Yes they were, she said he enjoys watching things on an iPad and she doesn't understand why he doesn't have a tracheostomy, if he had one he could have been at home with them all this time (since November I think she said) rather than on a ventilator.
Again the court judgement explains why the choice was made to use a ventilator rather than fit a tracheostomy. He had been scheduled for one in January but deteriorated significantly with lots of seizures before that date.

Yes Gin

Alittlepot - yes, I thought that too. But it would be a bastard hard interviewer who put that point to Connie. Or indeed challenged her on those assertions she made that he enjoys life and watching telly.

RMC123, I agree with you. The parents are clinging onto every shred of hope. I've just read a previous statement of Connie's in which she says 'I'm not a doctor but I do feel like I'm an expert in this condition'. When your child is unwell, many parents research the condition, the progression and the outcomes in order to be better informed. Where you are dealing with a rare condition, this often puts you in the position of being better informed than the majority of the care team. Yes, the guy at the top might be an expert in your condition but those who are making the daily bedside visits, staffing the ward and doing the night shifts are not. They often ask for your opinion based on your contacts with the wider community of sufferers. I know this sounds strange but, sadly, there are so many rare conditions that the nursing team will never have heard of until you walk through that door.
Connie and chris are coming from this point of view and, having informed themselves about Charlie's illness, they will see themselves as guardians of this condition, they will have made life or death decisions around his care already and their profound grief will not allow them to walk away from this final decision or see it any differently.
It is an absolute tragedy for them all.

The thing is, they're happily releasing all these staged photos of Charlie, so if he really is "enjoying watching things on his iPad" why not release a video of him doing so and put all the doubters to rest?

Sauvignon I know my brother and wife often had to explain their son's condition to registrars on A&E admissions. They had to take him also to the A&E where their consultant was, which wasn't the closest one, as there was a file on him there at paeds A&E. They weren't always happy with the treatment there despite all that, and one registrar laughing and saying 'oh, I haven't done that sort of thing since chemistry A level' while my nephew was having seizures she wasn't stopping which ended up leading to a stroke. So I totally understand what you mean about rare diseases and feeling as a parent that you have that knowledge.

Thanks Jiggly, I've just put it on now. Will try to hear the beginning of the programme on catch up later.

I just don't know what they think all the media appearances will achieve. Due legal process is being followed. No one is going to ride in now and save them from the inevitable.

Can I ask why is there a media blitz from Charlie's mum? Public sympathy won't change a judicial decision. What is she hoping to gain?

I don't want to watch the interview (family of medics including my pediatric consultant sister who is raging) as we are on holiday but what I find strange is this. We spent 69 days in NICU/SCBU with DS2. Occasionally people disagreed with doctors over stuff but this is an unreal level of denial. How do you carry on with ordinary ward rounds in the face of this?

Second question: in court both parents admitted that this current quality of life was unsustainable (hence the plea for treatment). Have they changed their mind about that if they think he's a happy 'thriving' boy watching the iPad?

I don't think she's plausible at all. Every time I see her interviewed she comes out with things that are blatantly untrue.

As I've said before, last week when interviewed she was saying how they are never away from Charlie - when clearly she'd left the hospital to go to the GMB sofa, and then be interviewed with her husband outside the hospital for radio, and now she's off doing the rounds again today.

Sorry, but there is NO way on earth I would be away from my baby now. I'd find someone else to speak to the media if it was necessary.

Chattylion that was my thought too

Well maybe it might be best to allow Charlie's parents to take him to America. That way if anything happens to Charlie they only have themselves to blame is one way of looking at it but I still think the court must, and I know they will, put Charley's best interest first which is the top priority now. Just why he hasn't had a trachy put in rather than be ventilated is unclear but the doctors DO know best.

Like some other posters, I feel like I'm getting "too involved" in this story.
There are personal reasons affecting me and a number of family members that, I don't want to go into too much.
I've started reading through CA page and I see they are now taking up the stories of some other desperately sick babies/young children who have parents in opposition with medics over DNR's/life support. I can understand the poor parents grasping at straws, but the stupid, uninformed comments of CA are pretty vile, and they help no one.
These highly publicised cases could have such a corrosive effect on the relationships between medical staff and parents who, every day in hospitals up and down the county, have to work together to agree what's the best way forward for their very very unwell patient/relatives.