Charlie Gard

I think that only those who have been in this situation can even begin to to know what these parents are going through. And all the time "helped" by the media circus. I simply don't know what I would do if faced with this set of circumstances but I just hope that the parents can get all the information they need from a disinterested source instead of the "interference" from well meaning people who are not informed. God help them, this is indeed a nightmare.

As a sister of a handicapped child my thoughts are that I would not have hesitated but to have switched off months ago. No I am not walking in the parents shoes but if he did survive, who bathes and feeds the body of a twelve stone man, where is the twenty four hour care coming from? There are too many people already in the world, we are the pollution, I do not want my taxes provided for children who should not live. This is an over sentimentalisation and over romanticising of a tragic genetic fault. In medicine it used to be said, we should not officiously strive to prolong life, this is what is being done. No my heart does not go out to them, neither would it have gone out to myself in the same situation better that you cry for a month than the rest of your and Charlie's life.

Parents should be only ones able/ allowed to make a decision on there child's life.I agree with jalima.

I believe that the parents have been told that the treatment in America would not improve Charlie's situation. I have very mixed feelings about this case, and really cannot comment about the rights and wrongs. I feel very sorry for the parents.

The BBC news has just reported again that seven prominent doctors have now said Charlie might be helped by the treatment.

People are talking about the media circus. Firstly my guess is that a large part of the noisy protesters/supporters are from pro-life organisations and might be seen to be promoting their own objectives.

Secondly, when I have listened to the parents being interviewed, they don't strike me as being over emotional, but come across as determined and informed. They are probably amongst the most informed about what the treatment can and cannot do. They have a group of advisers supporting them and I don't think the parents should be dismissed as being unable to be objective about their son.

I agree the question about why the US doctors don't come to the UK to treat him is unanswered, but I suspect there are legal hurdles to be overcome. At the weekend I read that the US FDA would have to approve the treatment for use on Charlie in the US. This information was part of an article about Trump's offer.

Are they really seven 'prominent' doctors? I'm afraid the parents do not come across on social media as reasonable and they have posted or said nothing to the members of the 'army' who have posted the most vile things about the staff at GOSH.

Having worked with families of children and adults with this type of problem, and I agree with Carolpaint's view. Except perhaps her last sentence. It seems to me they've been caught up in the mess that the media have made of their very private situation.

Who are they going to blame if all it does is leaves him in the position he is in. No improvement but no deterioration? What then?

Rigby I can't answer your question, although I have just looked at Facebook to comment on the second part of your post and the letter from the Children's Research Hospital in Italy looks 'prominent' enough to me. I doubt very much if the parents are in full control of the Facebook page right now. Anything posted by the family will have been approved by their legal team, etc. and probably posted by them too. I'm not in the least surprised the parents don't engage with individual posters.

I don't really have anything else to say about the situation because everything I know comes from what I hear on the news and read in the media. Only those close to the situation will really know what's going on and I don't see the point in continual speculation.

carolpaint knows what she's talking about. Her comment echoes mine. Little babies are one thing big men with physical and mental disabilities are quite another.

After a lifetime of nursing and seeing people suffer,I think this little boy should be allowed to die. The ventilation and tube feeding are an artificial intervention and could be argued that they are against the will of God.

Thank you Jane 10, I frequently feel the baddie on this type of issue. Will say no more. ??
Wilma made an astute observation tho.

To all of those, including the ghastly American Pastor speaking on Radio 4 about parents having the ultimate right to decide on their children's treatment as 'parents know best' well no, actually they don't always and that is why children can be made wards of court. A parent who denies their child a transfusion due to parental religious belief ( Jehovah's witness for example) or who insists on their daughter having FGM is not acting in that child's best interests. Not the same situation of course, but a point of law and philosophy. It is also useful to know that the ghastly American pastor is a member of a far right Christian sect which is campaigning to end funding for Planned Parenthood and while we are at it his holiness the Pope and the Catholic Church have spoken out against the 'three parent babies' which is a treatment recently pioneered to avoid parents having children with these dreadful mitochondrial deficiency genetic disorders. As to Trump, I care not a jot what he thinks. I am fast losing sympathy for this child's parents, they are not putting him first any more. It was said today that he is now receiving morphine as nursing staff cannot be certain that he cannot feel pain as he has no way at all of indicating this, not a cry, not a flinch, not a grimace. Poor little boy, no longer a child, now a cause, another stick to hit 'the establishment' whatever that is. Disgusting.

The media is reporting the Court gave the parents 24 hours to provide evidence to support their request to take their baby to the US or Italy for treatment. It seems to me that GOSH and the Court are doing their best in this terrible situation. The Judge said he'd need extensive and persuasive evidence to change his oroiginal ruling. I stress, I don't say the parents aren't doing their best.

I don't agree with the view that only the people who should be able to make decisions for their children. This tragic situation shows why the Courts become involved. Charlie will be represented independently of his parents by a Children's Guardian and a legal team. This is not as cold and clinical as it may sound. My heart goes out to everyone involved, especially the baby at the centre

Gillt57, I cross posted with you. We seem to be broadly in agreement

The greatest love is letting go

The idea of parents having the last word on their child's treatment seems completely right until you remember Jehovah's Witnesses and mothers wanting FGM for their daughters, or the parents who want to use alternative treatments rather than chemotherapy.

The judge may decide to let the treatment go ahead but I'm not expecting the miracle some of the papers have been talking about.

He is severely brain damaged. I wish they would just let his precious soul fly free xxx

This is a heartbreaking situation for little Charlie's parents to be in. But I think perhaps they are allowing their heart (their obvious love for their child) to rule their head.

Life, but at what price? Are we talking about a near normal little boy with a slight disability who will grow up to be a valued member of society or are we talking about a profoundly mentally and physical disabled little boy with very little quality of life who could grow up to be a profoundly mentally and physically handicapped man with no quality of life? From what I have read and heard it would seem to be the latter (although happy to learn otherwise) in which case the parents must be so traumatized that they are probably not thinking straight and (although I hate to say it) they are thinking about themselves and their own grief of letting him go, before they are thinking about a very poorly little baby boy, who for all we know could be in the most horrific pain. Poor little lamb.

Who said the child was receiving morphine? Was it said in court?

when I look at poor Charlie with that clip over his nose I think it must be extremely uncomfortable to spend unending time with such a thing on your face.
My niece who is a midwife spent the last weeks of her pregnancies in fear her babies would not make it to 39 weeks because she knew that the premature babies had a lot to suffer with their sensitive skina and all their tubes etc.

As to Charlie let him go and send this awful priest home.
If Lord Winston thinks Charlie has no future then that convinces me.

Annie, it's been reported in the media - apparently the doctors aren't sure Charlie isn't in pain (how could they be?).

There is a big difference between parents who are Jehovah's witnesses wanting to withhold proven life saving treatment from their children, parents wanting FGM (which is mutilation and illegal, and not medical treatment of any kind) for their daughters, and parents who want to be allowed to try experimental treatment which has been used in other countries and appears to have some limited success.

I stress that I don't really know my own feelings on this; I'm glad I'm not the one who will be involved in making the final decision. But I can't criticise the parents, I can't demonise them either. Whenever I have heard them speak they come across as rational, loving, devoted parents who are very clear about what they want for Charlie and also the limits on this. I think it is most unfair to accuse them of using social media, enjoying the publicity, losing sight of their baby's best interests. What right do we have to sit in judgement of them when they are in a situation most of us thankfully cannot even bear to imagine?

I think that in their shoes I too would use all the publicity I could muster, including social media, if I genuinely felt there was a treatment that could help my child and that he was being sentenced to death when all avenues had not been fully exhausted.

I am very aware that none of us (I assume) have been privy to the lengthy court proceedings and have not had the benefit of hearing all the evidence in this case. I honestly believe that the judgements made will have been made in good faith and with full consideration of the evidence provided. But that doesn't mean that the chances of this treatment helping have been assessed correctly, given that it is so new and has not been fully tested. The treatment denied to Ashya King in this country is now to be provided on the NHS from next year, and he is well thanks to the fact that his parents were willing to break the law. We can speculate all we like about Charlie's quality of life but we really don't know and I would venture to suggest that no one really knows, including the doctors. It makes me uneasy that he could be removed from life support if there is any chance at all that in a few years time we might see this treatment being used successfully on children with his condition.

I agree there is a difference between JW and this case but there is still the basic underpinning principle of the parents' right to decide. is it an absolute or not? And if not, which is probably the case, how does society decide when parents can choose or not? My understanding is that no child at all with the same severe condition as Charlie has been treated, successfully or otherwise. The King case is very different.

Thank you Ana, it is so wrong this medical information was released, it could only have come from the hospital, no matter how much they want to do what they think is best for the child releasing information about his medication is breaking patient confidentiality which is ilegal, I think