Charlie Gard

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.

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.

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?

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.

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

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.

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?

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.

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 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.

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

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

Every child is unique

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.

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.

"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.

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.

Doctors are not sacred Anniebach but then neither necessarily is parenthood. Yes giving birth to a child is a huge event, but there are just as many if not more examples of parents who have not actually always had their child's best interests at heart, as there are instances of doctors being wrong. Charlie's parents may love him but let's not forget that it is the staff in GOSH who have cared for him and provided the support and treatment that have enabled him to live as long as he has. They are the ones who believe that he may experience pain but who have gone on maintaining him in a condition they would prefer to release him from, simply because the birth parents wanted them to. When Charlie is taken to the hospice to die the staff may feel a great sense of relief that he will finally be free of suffering, but I would imagine many of them will feel sorrow and loss just as the parents will.
The difference is that they will then go on to care for other ill babies, lets hope that there will be better outcomes and parents who will appreciate their work more and none of them are so upset by the abuse that have received that they decide to leave the hospital.

I understand too that Alison-Smith Squire, who has written extensively on this case in the Daily Mail, is not in fact a DM journalist but is the media agent and publicist acting on behalf of the parents. This is not acknowledged in the articles. She is a sort of Max Clifford. My reason for stating this is to show how these distressed parents and their situation are being manipulated and used by other 'players'.
For those defending the actions /decisions of these grieving parents I ask you to think how their actions/decisions may be impacting on other bereaved parents, in equal distress, but choosing privacy not publicity.

I don't want to seem to be lecturing but I want to say something about what has been called the child's defence team. This is not a criminal trial. The law in this country allowed was for the child to be separately represented from their parents and from the NHS/local authority. The Court in a situation like this appoints an independent social worker as Children's Guardian. The CG will usually be very experienced and will be selected by Cafcass as the person with the most relevant expertise for the child. The CG appoints a solicitor, again with the specific needs of the child in mind. The CG does see the baby, child or young person. They interview all relevant people, starting with the parents. They read every statement submitted, will discuss medical or other specialist reports with the author.
by criticising Charlie's Army, I do not criticise the parents.

A healthy child will not take the place of their first born.

Yes, AB, doctors can bury their mistakes but they will bury them a lot more easily when we get a private health system. The NHS has a better record than most of owning up to its mistakes, and paying out. All patients are entitled to a second opinion. It was sought in this case and found wanting. In court cases, by law, all sides have access to the information available. The defence counsel for the baby is there to protect the child's interest, , which is not always the parents' interest, and of course you cannot consult a child in that condition but you can consult all the evidence and draw an informed conclusion. Whose interests should the defence counsel put first then? The parents' over the child? At the end of the day the judge is there to make the difficult decision on behalf of the child and no doubt take the flak.

This is not a condition for which there is any cure at this time. Perhaps in the future, after more research, babies could even have treatment in the womb.

Perhaps, after all this and a period of mourning, these poor parents may be offered PGD and have a healthy child.

In this case Anniebach the doctors are right, the condition that Charlie has would never allow him to get better he could only deteriorate. Would you really have this poor child on a ventilator forever ?

The so called army hasn't made the slightest difference to ne, what has distressed me very much is the disregard of the parents from some posters, even they should have more children.

For me doctors words are not sacred, there have been too many people hurt by some, and as is said - doctors can bury their mistakes. I am not saying this happened with this baby 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.

The parents had no choice, no control over their own child, and the more they fought the tighter they were reined in. Never , ever take on the establishment .

I was also amazed the baby's defence council was respected as only having the baby's interests to the fore, did she consult with the baby ? Or the hospital?

So the parents had to fight the hospital team , the child's defence team, a judge who I never thought for one second would go against the hospital.

Blaming the demonstrators is a distraction.

Sorry this will annoy many but I think the whole matter was handled badly

I don't dismiss the influence or input from Charlie's Army Iam I simply refuse to allow their behaviour to influence my view of the parents' actions. There have been some very critical posts on here and comments elsewhere that horrify me with their lack of empathy or even sympathy. This is not and never has been about Charlie's Army, but about moral and ethical decisions taken in the NHS every day, about the power of the state and the rights of parents, but above all about the suffering of Charlie and his parents.