Charlie Gard

The greatest love is letting go

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

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

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.

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

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.

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.

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.

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?

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.

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.

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.

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.

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

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.

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.

Good point, sweetcakes, though no doubt they would argue that they need specialist equipment.

Annie I was actually hoping you would share some info about these doctors but never mind, I will look at the BBC.

Devongirl, like everyone posting here, all info about this little one and his parents I hear on the news

If the American doctors are so convinced that they can help Charlie or even cure him why are they not over here with their knowledge and their cure for him it would better for the boy not to be moved and they could prove to the BMA that they can do this. Genetics can be difficult to cure I have a genetic illness I will have for the rest of my life and they can mutate.
So get those doctors over here from America and prove what they are saying can be done share there knowledge.

My wonderful mother who I lost last year always disagreed with the Biblical quote of "Faith Hope and Love and the greatest of these is Love"
She always said that hope was the greatest.
You can have all of the love in the world -and Charlie's parents so obviously do- but if they have no hope what good is love.
And where there is life there is hope. Keep going - keep fighting - keep praying for a good outcome.

Unless you can walk on their shoes. The parents shouldn't be judged. Who said "where there is life there is hope" doctors have been wrong before and will be wrong again.

I don't think so Ana in fact I think I got it wrong I think she was referring to a child in Spain not America. But I'm not sure of the child's exact condition.

I'd be desperate not to turn off the life support but I hope I'd have the strength to do it. Do they realise what their lives will be like if he never improves? Since he makes no sound, how can they know if he is in pain. The media circus will make it even harder, with some criticising them whichever path they take.

So many signing the petition etc, supporting the parents, overlook that the child has rights himself. Where a person of any age cannot consent etc, the courts will evaluate all of the available information and make a decision on his/her behalf.

last year a friend of mine gave birth to a lovely little boy. he really was beautiful and she and her partner loved him very much - and it showed in all the photos.
however at three months it was discovered that he had a tumour on his brain and underwent a long operation but they could only remove about two thirds.
they spent time in hospital with him and learned how to give him all the medicines he needed and he went home [he also went to scotland to meet his grandparents].
however a few months later it was discovered that the tumour had grown and he also had secondary tumours [although i can't now remember where they were] and it was inoperable.
my friend and her partner got married at their son's bedside as he couldn't leave the hospital.
all her friends were given the message that his life support would be turned off the following wednesday which gave people chance to go and say their goodbyes on the monday and tuesday.
his life support was turned off and they were with him when he took his last breath. everyone who either knew him in person or by photo [i was the latter as i couldn't travel to see him] were devastated.
it is now time for charlie's life support to be turned off - i can't hear to think that he's going to be suffering for much longer. i know it's going to be hard for the parents but they should think of charlie now - he's never, ever going to get better and they should be saying goodbye now.