Charlie Gard

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 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.

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 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 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 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 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.

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 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.

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

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.

Just habit Ceesan

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.

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

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

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.

This is a heart rending situation and I feel for the parents, but I wonder how other parents are feeling who have gone through, or going through a similar situation (not unknown in my experience) without the high profile media attention.

I would think they're breathing great sighs of relief! Who on earth would want all that glaring publicity?

I think the impact on other parents both in GOSH and elsewhere is one of the elephants in the room- parents wondering if they fought hard enough, if they can trust the medical staff? Feeling guilty - did anyone hear the heart rendering phone call at the end of Any Answers today? No matter how sympathetic we might feel for CG's parents, society has a responsibility to all its sick children and their parents not just this family as sad as it all is. Imagine being a parent with a child in PICU at GOSH at the moment. Imagine being the staff there, the lawyers - imagine hearing the family's spokesman speaking of Charlie being held a prisoner by rage state. I'm not criticising the parents but I am saying there are many others to feel sympathy for and their ( the others) lives are being made harder than they need be if we just cast our thoughts and sympathy in one direction.

Not rage but the - sorry

As a friend of GOSH I assure you all the children have our thoughts and sympathy

lim not talking about the friends of GOSH obviously but the overall media coverage and emphasis on this one case to the excludion of all others.

This case is receiving such attention because of the court case , because the media roll it out around the clock , some choose to watch and read all they can google, others do not, some come down on one side some on the other side, again others do not, I cannot see how this case is affecting the treatment of the children in the hospital

I heard Any Answers Rigby, that final call was heart rending and for me, put all the complex issues involved simply. I also agree with your comments about the implications of this case and the constant publicity on staff and other families at GOSH
It's too simplistic to say it won't affect clinical treatment imo.
I'm sure staff continue to work professionally but they, their patients and patients families must be affected. It's tough enough to be in their shoes under any circumstances but to have to go into work, or into the hospital to be with a sick child where you may also be involved in significant treatment decisions with medics at present must be even more difficult.

I didn't hear Any Answers Rigby and Iam but your observations mirror what I was thinking. Whilst obviously "experts" in any chosen field do not have all the answers, they seem to be disparaged by public and media alike in the present climate.