Charlie Gard 7

[CaveMum]

Continuation of the discussion.

It looks highly unlikely that there will be a verdict today as GOSH have not yet been able to put their case across. The Gard family had their position heard this morning and currently an expert witness from the US is being questioned via video link.

ITS NOT ABOUT THE PARENTS

Sostenueto I haven't said it is. I am just saying it must be hard for them.

The case, and it's paramount importance is about Charlie.

Well, I think the whole CA thing feeding false hope can't have helped the parents, at all, feeding false hope and the pressure of all this 'fighting' talk. I wonder if they regret starting that.

Gin, you asked pages ago about the use of the title 'professor' in the US and the UK. Americans tend to call all their teachers and lecturers at university / medical school level 'professor'. In the UK the title is usually reserved for 'Chairs', ie people awarded it or promoted into it - it's often but not always linked to being head of a department.

So in the UK, I could be a Dr and a senior university lecturer, of some note, yet not be a 'professor'; but my junior colleague in the States who'd just got their PhD and started their first teaching job would be called 'professor'.

Just different systems.

I rather feel for the US doctor. It's not his fault the parents want to believe he can perform miracles; he can only state the facts as he sees them.

He was initially asked to give an opinion on what to him is a point of research. He had no idea it was going to end up part of such an emotive case the other side of the Atlantic with his every word being dissected by a judge and barristers and people worldwide with no scientific knowledge (in which I include myself) trying to interpret what he said.

It's probably not as easy as him just jumping on a plane and coming to London. He might have other patients, other commitments and responsibilities that he can't just drop at a moment's notice. And there'd have to be decisions about who would pay his expenses.

Assuming this is the same doctor, I believe he and the GOSH consultant were in contact by phone and email before the first hearing, initially I think when Connie first found him and later at the judge"s request, so he's not completely uninformed about Charlie. His information just isn't up to date.

Again, not trying the make excuses, but just trying to look at the overall picture.

The new dod didn;t have to get involved, though. It was his choice.

doc

It sounds a bit like the doc didn't quite realise what he was getting into. It is right that he realises the complexity of the case, before doing anything.

There is a very moving post below that FB link.

Well worth reading.

Sostenueto, again I agree, as we speak there will be someone in the same postion.

DarthMaiden, can you copy?

In my experience hospitals are generally exceptionally good and making sure parents are involved and as aware as possible every step of the way. Where there is any level of choice parents views are listened to.

The issue here appears to be that, understandably at first, the parents didn't want to accept the views of the medical team and wanted to cling to hope. The issue is rather than being logical about it they have now "allowed" it to become a media frenzy, relationships and therefore trust have completely broken down which has left them in an even harder situation.

@muckypup73

I attached a screen shot(s) - it wouldn't let me copy the content.

Again, not trying the make excuses, but just trying to look at the overall picture. Precisely what I am trying to do too Lovely.

Sirzy, agree.

DarthMaiden, what a shame.

I rather feel for the US doctor

Not least since the information that the 10% figure came via the White House was revealed.

Aside from all other considerations I am leaving room that he is feeling some pressure from areas he never expected to swoop into his sphere.

I don't want to speculate too much it could have been him who contacted the White House rather than the other way around, but there seems to be a lot of unexpected fingers in his pie. Which might colour how he feels he has to cut it.

That FB/BBC post has made me weep.

Something that struck me about Charlie's parents.... I remember when DD was tiny, and very poorly, it was tough. Really tough, and people constantly told me and DH what a fantastic job we were doing. It was lovely of them, and they just wanted to encourage us, I know. But there was a downside which was that it became really hard to ask for help, when we felt we weren't able to be all that fantastic. We had been cast firmly in the role of 'amazing parents', but amazing parents don't ask for help - they are too amazing to need it! Amazing parents carry on being amazing while we all cheer them on in their amazingness. And there was a subtle fear that if we did ask for help, we would be somehow letting everyone pdown.

When we started to use respite carers so we could sleep, or just be us for a bit, reactions were mixed! Most people got it, but we got some 'but you're doing such a great job! Don't let them tell you you can't look after her yourselves!'

I wonder if this is what in a way has happened to Charlie's parents. They have been firmly cast (by themselves to begin with, but subsequently by people who don't even know them and come across, frankly, as a bit deranged) in the role of 'fighting for Charlie' and to step away from that now will be terrifying. I think they probably feel quite trapped.

VERY rare posting on the CA page by a man. Fits right in though

i would like to say a very good luck today for chris and connie for the second part of there court hearing and i hope the judges pulls his finger out of his ass and lets charlie gard go to usa for treatment or if not to allow the usa to bring the drugs over so it can be tested on charlie to see if it improves everyone is allowed a second chance come on let him get the treatment he really needs 'WHO AGREES WITH ME'

If the parents continue the way they are and the verdict stands and a date set up they are in danger if being banned from Charlie's side when the time comes. Do the parents want that? They have got to get themselves in control for Charlie's sake.

Tried again and managed to copy the post:

--

I have never quite 'recovered' from the death of my four and a half year old daughter in 1991 who was very much like Rose. Diagnosed as microcephallic,her brain never able to develop properly, she was blind, had cerebral palsy and epilepsy,was ultimately tube fed, unable to crawl, sit or stand. Her problems resulted, among other things, in frequent seizures, during which she was clearly in considerable pain, until and unless she became unconscious, and struggled to breathe.
We too - I particularly - experienced the occasional joy of smiles and a depth of love which is quite indescribable, and yet I think we were fortunate, and she was fortunate, in her dying when she did. I was able to hold her in my arms at the last, detached from all the tubes and buzzers and other detritus, and was able to tell her that it was okay for her to go if she wanted to, much as we wanted her to stay.
I will miss her until the day I die. I will love her until the day I die. But I know there is a point at which life becomes something which is persisted in only because science enables it, and not because it has any value to the person who is 'living' it.
Those of us who have travelled this journey are accustomed to being judged, often harshly, by people who really have no idea of what the journey entails - the three and our hour tube feeds vomited back in a matter of seconds, the visits to hospitals and time spent with staff who sometimes genuinely have no idea of what is really wrong, the reams of 'free' (and therefore valueless) advice, the 'prayers' of well-meaning folks who never actually lift a finger, the dread of the time when you, the parent, can no longer cope with the physical labour involved when you know there is really no-one else who will do it, the fear of what will happen to that child, that child who is your all and to whom you are their all, if you happen to pre-decease them and leave them to the 'support' of a society that cannot even adequately meet the needs of 'average', 'ordinary' children.
Be careful how you judge.

But I know there is a point at which life becomes something which is persisted in only because science enables it, and not because it has any value to the person who is 'living' it. This is the crux....

DarthMaiden, that is so so sad.

A comment from under that BBC article shared to FB and linked to above.

"I have never quite 'recovered' from the death of my four and a half year old daughter in 1991 who was very much like Rose. Diagnosed as microcephallic, her brain never able to develop properly, she was blind, had cerebral palsy and epilepsy,was ultimately tube fed, unable to crawl, sit or stand. Her problems resulted, among other things, in frequent seizures, during which she was clearly in considerable pain, until and unless she became unconscious, and struggled to breathe.
We too - I particularly - experienced the occasional joy of smiles and a depth of love which is quite indescribable, and yet I think we were fortunate, and she was fortunate, in her dying when she did. I was able to hold her in my arms at the last, detached from all the tubes and buzzers and other detritus, and was able to tell her that it was okay for her to go if she wanted to, much as we wanted her to stay.
I will miss her until the day I die. I will love her until the day I die. But I know there is a point at which life becomes something which is persisted in only because science enables it, and not because it has any value to the person who is 'living' it.
Those of us who have travelled this journey are accustomed to being judged, often harshly, by people who really have no idea of what the journey entails - the three and our hour tube feeds vomited back in a matter of seconds, the visits to hospitals and time spent with staff who sometimes genuinely have no idea of what is really wrong, the reams of 'free' (and therefore valueless) advice, the 'prayers' of well-meaning folks who never actually lift a finger, the dread of the time when you, the parent, can no longer cope with the physical labour involved when you know there is really no-one else who will do it, the fear of what will happen to that child, that child who is your all and to whom you are their all, if you happen to pre-decease them and leave them to the 'support' of a society that cannot even adequately meet the needs of 'average', 'ordinary' children.
Be careful how you judge."