Charle Gard 21

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

It was one thing to repeat what their publicist had said about more children, quite another to speculate about whether they'd split up or not. The latter was completely inappropriate even if you think the former was fair comment.

The sun article headline "Charlie gards parents tell how they finally got to bring their baby home and their terror when they realized how few rights they had over his life "
Oh for gods sake what a gross headline, nobody has any rights over someone else's LIFE he's not an object to own. The sun should be ashamed.

Thymeout, I agree with you.
I am sad and upset that it would appear that from a detached medical point of view as far back as November 16 there were significant doubts as to the benefit of ongoing ventilation.

But I don't really want to rehash the whole timeline.

What happened is over for Charlie and C+C's pain is ongoing. I wish them nothing but strength and love and would love to believe that some kind of cosmic scale will decide in the interest of making up for the horror they have been through they are due some good luck.

What happened may have far reaching consequences for all sorts of critically unwell people (adults and children) and their families and that is what I think is worthwhile ongoing discussion.
I also think the behaviour of the press and SM merits ongoing scrutiny.

Just to clarify that at no point would there have been ethical committee 'approval' needed to ventilate Charlie initially. AFAIK he deteriorated rapidly and there was never any question about giving him the ventilatory support he required to save his life at that point.
It was only later done the line that further issues around the ethics of long term ventilatory support were looked at.

I just hope that going forward, the damage done by CA et al will not have a negative impact on medics faced with the same minute by minute decisions in future during an initial period of rapid deterioration.

PacificDogwod I found that very upsetting too, thinking that the Doctors already felt they weren't acting in Charlie's best interests back as far as November.
I think the Judge had it right about mediation, and I think there should be some degree of it being mandatory rather than optional. This sound very harsh but I also think that if parents aren't taking medical advice and are seen to be putting their own needs first, then a child should be made a ward of court much earlier in the process. I don't think that being a parent always means you are right, sadly.

i think its disgusting thyr still carryng on-im sorry for them but revealing his last moments is crass what thy going to d next have The sun round for tea at the wake

Perish the thought Gabs.

Updated post tweeted by Joshua Rosenberg

www.transparencyproject.org.uk/public-and-private-the-limits-of-transparency-in-charlie-gards-case-an-update/

Lelloteddy. The ethics committee was to decide on a tracheotomy which is different. I'm really not saying this to be rude or insulting to you personally but I'd like to point out that this is a perfect example of the general public not understanding Charlie's situation. And this misinformation was a big driver in the SM campaign. Even now log after the event, the internet is filling with incorrectly informed opinions.

Kanga I'm not sure what your point is? The reference made to ventilation/ethical approval earlier in the thread was exactly what I was clarifying. Charlie's initial ventilation did not require ethical approval because it was done in urgent response to his deteriorating clinical condition. The questions about ongoing ventilation/tracheostomy from an ethics committee point of view were raised later.
And presumably you set yourself apart from the general public and have insider knowledge?

Touché.

Oh I'm very sorry you took personal offence to my post. I was on point though that misunderstandings were a big driver in the CG media circus, and continue to be.

The ethics committee approval was regarding a tracheotomy. Nothing to do with the intensivist acute requirement for artificial ventilation (which you correctly point out didn't need approval. It would have been done as emergency medicine to keep him alive in the moment. I don't see the relevance of you pointing this out, no one is debating or ever did debate the ICU ventilator). The tracheotomy was requested by parents in November but declined by ethics committee.

I'm not looking to 'set myself apart' from anyone, that sort of thinking isn't in my stratosphere.

The tracheo request being turned down on ethical grounds makes sense of some later remarks on social media. The point I was trying to make was that an earlier post here referred to human error. Which is why you have a whole team, and why stuff has to go through an ethics review Procedure. I wish I understood more of the progress of Charlie's condition but with so few cases and possibly few others ventilated for so long, perhaps the late stages have not been seen before? And still no info on who the girl in the bike girl poster was . since her image was used for campaign purposes I would like to know what her story was, was her case accurately represented or not?

Kanga your posts still make no sense.

I was referring to Somedykes statement 'AFAIK putting him on a ventilation in the first place went to ethics' when I clarified that ( as Somedyke had already done) that wasn't actually the case. So STILL not sure what your point was.

SomeDyke her case was not represented fairly. She had much more residual mitochondrial activity and a different 'strain' if you like, of mitochondria disease. She started treatment much sooner and was never as poorly as poor CG. I can see why people would be so pulled by the profile picture with the four little pictures in it though 😞

Charlie's funeral is to be private for family and friends only.

www.facebook.com/connie.yates2

Very glad to hear that, Ellie ... let's hope the occasion goes as well as it can under the circumstances, and that Charlie gets the loving and dignified send off he deserves

Although we can probably expect a full blow by blow account from Alison Smith-Squire afterwards.

I'm glad to hear that. And I do hope that by private that means no AS-S and no publicity afterwards.

These threads have been a struggle for me, and I've avoided where I can. However, unlike most of you I've faced a similar situation to the Gard's and it was dealt with v.differently.

We knew something was wrong with DS when he was in utero. Told repeatedly by our cons that he would suffer & die soon after birth, labour would most likely kill him. There was an outright refusal to consult with anyone, anywhere else - even though babies with the same condition are treated in the U.S. (and here, we found afterward). Our son held on as long as he could. Normal brain, but several organs had been unable to grow properly.

The FMU did everything they could to persuade me to terminate (Inc emotional blackmail). They told me "we don't want you here. Go to X hospital". That hospital had no infant ICU facilities, and in the very unlikely event he was better than predicted, we wanted that available to him.

My cons tried to force me into a natural birth, despite DS' rigid abdomen measuring over 20 inches (from scans), and being told a vaginal labour would kill him. I was only permitted a CS when I asked for a MH assessment (which I never had), as I was, and still am broken by my experience.

I was turned away twice at appointments for an ELCS. I was told "we want to give the bed to a child who will be alive". I can see the logic, but it was harsh, especially in the light of treatment I now know could have given him a chance. We were promised palliative care to make him comfortable.

Eventually he arrived on Christmas Eve (my birthday). I would never wish a silent birth on anyone. Our son was put on a ventilator because he could not breathe alone. The MWs waited for a side room to be free and put us in there. Very soon after we took our son off life support and he died in my arms gasping for breath. He never opened his eyes. There was no palliative care. We were able to say goodbye to our beautiful boy, and not even an hour later DH had to leave until Boxing Day, 'cause hey, Christmas, and our eldest needed him.

Even now I am haunted by the thought I could have done more. He fought for every damned breath and I sat there and fucking let him slip away. For various reasons I could not terminate.

So please, before you judge the Gard's bear in mind you've not walked in their shoes, and if your kid was ill most of us would do anything, absolutely anything to give our precious babies a chance.

I gave up too easily, and now I have to live with that. I just pray my boy will forgive me, as I can't.

That should have been babies are treated successfully here & elsewhere.

Should say the staff on the day were amazing. It was so hard hearing him gasp, while on the other side of the wall families were cooing, popping corks, and singing to their new babies.

Karen sending you the biggest hug. I want to tell you not to question what you did then but I know from my own experience losing dd2 that it is impossible. I just hope one day you can be at peace with it, I've not got there myself yet.

Oh, Karen, your boy died surrounded by love.
I hope you find a way to forgive yourself - from where I am sitting, you have nothing to be forgiven for.

I have huge admiration for the Gards and how they fought for their child and I hope the funeral will give them the tiniest bit of solace.

Helium bloody balloon release. Again.

One of the bloody things brought down a light aircraft at a kent airshow. Lucky not to kill anyone, as the pilot managed to ditch in the sea.

Wish they'd ban it.

This'll probably get deleted but if it is such a private funeral, then why put an invite on Facebook?