Charlie Gard

Menopaws what a very moving and heartfelt post.?
For anyone in a similar position, this case (Charlie) must be so tragic, do you switch the machine off and let him die naturally or keep on hoping for a miracle.
My view is to let him go, he is not aware of life or death, and parents have always to do what is right for their child and not themselves.Life ( at all costs) is not always the best outcome.

Yes he has had them before - that's why one now would be useful for seeing any changes.

Can't believe he's not had one before now. It seems such an obvious thing to do.

An MRI will show the degree of brain shrinkage which would confirm what the experts have been saying, it will be definitive proof and probably not what the parents want to hear.

Just habit Ceesan

Anniebach completely off thread, but to you HAVE to keep calling the Queen "queenie"? Sorry, but it really irritates me. Apologies if you have given a reason previously, I know that you have been asked this before.

The judge on Friday was very firm with the parents about deciding about the MRI - what he basically said was CG is not the only patient in GOSH other children need access to the MRI and staff have to plan to meet everyone's needs not just his so you have to make your mind up today. Of course that position may have changed

I feel really hopeful about this doctor - he is coming from outside and will not have all the inevitable emotional baggage that must be present between GOSH and the parents. Also he's a researcher and so will I assume come at the issues in that more objective way - he's not a treating doctor and their attitudes are necessarily different. All he will care about quite properly is is CG a suitable 'subject' for the treatment or to be exact the 'experiment' because that is what it will be. If he decides yes, then that is only the beginning - ethical approval will gave to be given before the treatment happens - although I guess they could convene the ethics committee pretty quickly. Of course, this would give CA another group of people to hate and threaten.

As a Granny of a grandchild who is under the care of GOSH , I would just like to say how awful & unhelpful the public involvement is for the good name, judgement & dedication of the Drs , Nurses &staff of GOSH. IT is so very very sad for this family, no one in the right mind would not feel for the pain they are going through. But the current bandwagon is very sad to see, with all & sundries adding their pennies worth.Surley the dear parents need support & acceptance to come to terms with this heartbreak..... Trump ! The Pope, really ??

I am so impressed by this thread, from a truly awful situation has come words from the hearts of people who have no doubt all been through or are going through personal crisis. People who share emotions bound together by family ties, love and life experience. A sensible and honest yet respectful discussion without bitching or slagging off, no sense of a know it all attitude or self importance, just words of support while trying to get our heads round such a hard situation for all the people involved.

I don't envy this doctor actually. I'm not sure how the parents (and their supporters!) will react if he says he feels the chances are too small and he decides against offering the treatment.

I didn't know the parents had refused an MRI Rigby and I agree that sounds worrying.

I really don't know what I would do. In these awful circumstances - although I think I probably would not have allowed it to go on so long - however if this doctor is willing to fly from US have they given any reason for not agreeing to an MRI scan? They don't hurt but might give vital information either way.

I think CA are making the whole situation much much worse - they are now planning his birthday celebrations ( in between still calling GOSH staff liars and murderers). There's a sense in which I wonder if the influence of this enormous group could impact negatively on the parents if they ever thought about coming round to accepting there was no hope. I think it's impossible now to disentangle the army from the family and it's a major source of fund raising for them and selling the CG merchandise. The difference of opinion based on evidence given in court is between the NY doctor and a huge range of other factors not just at GOSH but throughout the country. Clearly the visit of this doctor is of huge importance but I do think it's concerning that the parents are refusing to have an MRI carried out to provide information for him.

I agree about their supporters who have their own agenda - they're not really helping the situation imo but I try to leave them aside and concentrate on the parents who I don't think have done anything wrong.

I think the parents have challenged the statement that there is no brain activity. Again I stress I'm not sure where I sit on this but I think we have to be very careful of thinking we know the facts when we don't. Only the judge and those in court have heard all the evidence, and there is clearly some difference of opinion between different doctors. On top of this there is the way the story is reported by different media sources and our own personal bias. I don't say that in a critical way but we all filter what we read and come up with our own interpretation.

Because he was born with the condition, that's why I said he only 'appeared' healthy - it was just a matter of how long before the condition manifested itself. The situation everyone is in now is truly terrible and I have huge contempt for the likes of Trymp and Pence who are exploiting the situation for their own evil ends. As for Charlie's Army ?

I read that he was born normally but within the first month his muscles got weaker and weaker until his brain activity shrank to nothing Neither am I critising the parents Anniebach anyone with a drop off human blood would pray for a recovery but by that time with no brain activity, the doctors and hospital seemed to know it was irreversible, Now some years back that would have been where the baby was made comfortable to die and my post was to say I believe at that point that may have been the best action instead of which he was placed on machines to live for him Obviously from then on the situation has grown dimmer and the hope grown brighter we now have the dreadful situation that is ensuing and I feel it is damaging everyone the parents, the baby, the hospital, and the nurses and doctors

He was not healthy for several months - in fact he only 'appeared ' healthy for I think two months. GOSH had to treat him until they felt there was nothing further to do because of what they believe is the irreversible brain damage caused by 17 days of continuous fitting.

Celebrity- the state of being well known

That 'll do me

Then bluebell, it was the hospital who first gave the parents hope by not letting him die when he was first diagnosed , I am not criticising them but cannot critcise the parents either . They had a healthy baby for several months then all this happened

Trump a celebrity? If you think so

The Pope, not a celebrity unless you consider queenie a celebrity

I'd forgotten that dreadful preacher

I think if a baby, a child or an older person is extensively brain damaged which they said this baby was after the first month of life, then yes they shouldn't be artificially kept alive if the doctors don't believe a reasonable life can be expected in the little GN run A very hard call for everyone involved the doctors the parents and the extended family but the professionals have been fighting for the baby to die with dignity for many months now
I m afraid I counted the Trump and the Pope and the preacher in my celebrities remark perhaps I should have been clearer and called them people of important world status ? Although many would disagree with that too

Trump and the Pope?

So bluebell, the doctors made a wrong judgement in not letting the child die? Surely hope must have started for the parents then.

I haven't heard any so called celebrities supporting the parents