Charlie Gard

IMO it is time to let Charlie slip away. All this slowing down of the inevitable needs to to come to an end.

It worries me that all this time and effort in maintaining his life, is taking the nurses and doctors away from other children and babies who could benefit from their care.

"but I think their treatment of the parents was unpleasant, all was well until the parents questioned the treatment . This is not tolerated in this country , doctors are Gods."

It is of course not about doctors being gods. It is about using their professional judgement (in the current state of medical science) to make very difficult decisions about patients. What were these doctors to do? - in their opinion (which has been backed up by others) this child has no chance of survival without being on permanent ventilation and tube feeding; and there was real evidence that he is in pain.

I worked with 2 adults in that situation, totally dependent on such life-maintaining technology, and they lived relatively happy lives; but the difference is that they were sentient and able to enjoy the things they could do, to communicate and form social relationships; and that they were free of pain.

This case encompasses some very basic philosophical dilemmas: what is a human being? What level of consciousness constitutes a human being or a meaningful life? Meaningful to whom? etc. It is very very difficult stuff and the doctors can only do heir best to act honourably.

The medical consensus is that this poor child cannot live any meaningful pain-free life. They felt strongly enough about his level of distress that they went to court to act in his best interests.

In the natural course of things this child would have been dead long ago; that was the natural outcome of his condition. The fact that he is still alive is not courtesy of nature or god; but of human intervention.

Thank you for the explanation Iam, that really helps to understand what has been happening. Listening to broadcasts I thought the solicitor was the court appointed Children's Guardian but the fact that it is a Social Worker makes more sense as they will be able to instruct the solicitor.

Thank you too Penstemmon for the clarification of the position of Alison Smith-Squire. I think we need all the light we can shine on the reporting of this sad situation.

Just thought I'd mention the comments section below the Independent article link posted by annodomini at 19.20. The first comment is from a parent of a sick child who was seen by consultants at GOSH and Guys. According to the parent, the consultant at GOSH refused to answer any questions at all and stopped the parents when they tried. In comparison, the consultant at Guys was open to questions and the parent makes the point that GOSH is not the only specialist children's centre in the UK.

This week Charlie's parents tried to put together a specialist team to support their request to take him home, but no consultant stepped forward by yesterday's deadline. However, the specialist nursing staff who did offer to help were GOSH staff who were prepared to take leave to support the family. I think this speaks volumes.

I understand the US doctor was first approached by the parents before the brain damage occurred. The truth is we will never know if Charlie could have been helped if the experimental treatment was given before the brain damage. This condition is too rare for there to be many experts, but Dr Hirano is a specialist in Charlie's condition, unlike the GOSH doctors. The GOSH doctors did subsequently contact Dr Hirano before the brain damage, so he is respected in his field. I think his reputation may have been unfairly damaged by the media coverage of this case.

This might not be a popular stance, but I would have done the same as the parents if I thought it would save my child and I don't blame them for anything they've done. I'm just glad I've never walked in their shoes.

I never said that having another, hopefully healthy child, would ever take the place of one who has died.

Every child is unique

That's a very helpful post WilmaKnickersfit, thank you.

I know you didn't say that Jalima and I nderstand what you mean. These poor parents deserve to go on to have a healthy baby into which they can pour all the love they obviously have in their hearts.

The whole of the UK and not one consultant willing to help this child and his parents ?

Wonder if the baby will die today or over the weekend, doubt the hospital will have a problem handing his little body back to the parents, unless they want to do a PM to have his brain.

It's over, for the hospital, the courts, the parents critics, it will never be over for the parents. I may be wrong but I think their only way of coping with their grief and the bullying will be to work for the foundation they want to set up, this will mean books, articles, interviews

I understand poor little Charlie needs more than one consultant because his problems are multiple. I very much doubt that it is a case of "not one consultant willing to help" but that they have heavy caseloads and can't drop all the other children they are treating to come together as a team at a hospice, when Charlie already has his team at GOSH.

Anniebach my heart goes out to you because I can see from reading all these posts that little Charlie's case has triggered so many painful and dreadful feelings for you..... and for anyone else who has suffered similar.

I am still confused about the reasons why Charlie is being taken to a hospice to have his life support removed as it sounds as though this is going to happen almost immediately. The parents would surely be provided with the support and privacy they need at GOSH?

Another baby will never replace a baby that has died & I do not think anyone has said that. They are saying that other children can help ease the constant ache of loss and provide a new focus in parents' lives. I have good friends who have lost young children but whose subsequent children have brought joy after terrible pain. There is a very good article by Ian Kennedy in The Guardian today. Worth a read.

merlotgran the parents have asked for him to be taken to a hospice as their second choice when they couldn't take him home.

I can't understand him being removed to a hospice either. I think it may have originally been because the parents thought it would buy them more time with Charlie but as the judge has ruled that life support has to end quickly I don't really see any benefit in it for anyone. Maybe I'm missing something.

Yes. I know that, Sparklefizz but their request for another week with him was denied for understandable reasons.

Why move him just to remove his life support?

As I understand it the parents of this poor little boy don't want him to die in the hospital that they blame for his position. Also hospices are not geared up to accomodate the intensive care that Charlie needs to keep him alive for the "few days" (weeks?) that his parents want. Sadly this has become what the parents want, and not what is best for a baby.

I think they want him removed from GOSH because the relationship they had with GOSH has broken down and they don't want him to die there. All we can hope for is that Charlie will not suffer with the move and the parents will have that time alone with him. I do hope, once it is all over, their personal experience does not lead them and their agents to vilify GOSH and our courts to the extent that we get the emotive public backlash to two of our most precious institutions - a free NHS and independent courts.

I have been following this thread and would just like to say how wonderful it's been to hear all the differing opinions, the knowledge and reasoned discussions without the slagging off and nastiness which other threads, generally the political ones, degenerate into.

I started by feeling only that Charlie should have been allowed to die and was unable to understand why he hadn't been and thought his parents selfish in the extreme. Now I can see the other points of view and the complexities. Poor Charlie. Poor parents.

I don't think that will happen Devorgilla. Sadly I think people are already bored with the story and ready to move on to something else. This weeks news, next weeks fish and chip paper. How quickly was the Ashya King story forgotten, when the parents in that case were actually arrested for breaching a court order? That could certainly have led to litigation and backlash but it doesn't seem to have done so.

For the parents of course it will never be over.

I think going to the hospice is ill advised but the parents are determined to have the last word. I too believe that maybe they thought the hospice would allow the baby to remain indefinitely.
With a condition like this there is a possibility of further children being affected so I do hope they spend the money on research into this genetic condition.

I never thought the parents were selfish, just unrealistic and latterly misguided by others who jumped on the bandwagon regardless of the effects and the inevitable outcome.

I think the parents have the intelligence to think for themselves.

I think their intelligence and reasoning and all sensible thought have now gone out of the window in the terrible situation they are now in and are facing in the next few days ( and weeks and months and years)

What is unrealistic to choose a peaceful hospice with deeply caring people for their child to die over a bustling hospital

I suspect that this poor baby will not know whether he is in a hospice or the hospital. But he might be traumatized by being moved about. There is no right answer to all this; but certainly apportioning blame for an act of nature is not appropriate. We have to trust that everyone (except the media) have tried to act in the best interests of the baby as they see it.

There is no reason to think that the doctors at GOSH have acted badly - what would they gain by this? Nothing.

These are parents in distress and looking for someone to blame. It is understandable; but we should not collude with that blame. Charlie's Army did that and simply prolonged the agony for all.

Annie, have you ever had a child at GOSH or even visited one there. I don't recognise the picture you are painting of this hospital from my own experience and unless you know otherwise I think you shouldn't be talking like this about a place you don't know.