Baby in Great Ormond Street

Only the lawyers winning here. I have no idea how I would cope, my instinct is to let them try, some thing may be learned and their hearts may be eased.

en.wikipedia.org/wiki/Mitochondrial_DNA_depletion_syndrome

I have just had a quick look at that awful genetic mitrocondial disease. For heavens sake let the poor child go peacefully.
I do not feel it will help anyone parents or child to drag this very sick child off to the USA. GOSH is an extremely good hospital which deals with these very rare diseases. I doubt if the USA can do any better. Poor parents.

But so easy to say better for the child when it isn't our child or to say it with hindsight, . I hold the belief, better sleep than suffer , but have no idea if I would think the same if it was my child

Heartbreaking.

As someone who professionally understands what happens in these situations it is completely heartbreaking and distressing.

It is more complex than anyone understands. The Drs at GOSH will have already spoken to the Drs offering this experimental treatment. The Drs at GOSH are respected world experts the baby could not be having better care.

Drs take the vow to do no harm even if that means the patient should be allowed to die in dignity. The vow does not say Drs will do what ever parents want. The baby is entitled to be able to have a dignified death.

This baby would need a team of experienced medical personnel including expert Drs and nurses to get to America and they would be absent from their PICU's for at least 4/5 days, who will replace and pay their costs.

The baby will most likely die on transfer or shortly after arrival on without his parents there. The Drs know that they are going to miss out on being able to say goodbye, extended family will not be able to say goodbye. The parents won't be able to spend time with their baby after death and the baby will then have to be repatriated.

The baby will essentially be withering is away and the American team have said he would not improve from current condition so would never get off the ventilator.

Drs and Nurses always try and work so hard to maintain a partnership in care with parents but they are still responsible for having to tell parents their babies/children are not going to get better and you never forget those anguished cries. Therefore everything will be tried and sometimes more than should be tried to get babies/children well. So when these decisions are made they really are the right decision.

This case should never have been allowed in the media.

This is such a sad story, but I honestly think that Charlie's parents should now be telling him how much he is loved, but that he can now "let go". Of course they want to do everything possible for him, which they have done, but to artificially prolong his life is heartbreaking. I know that this is the thought of a stranger, but I wish them well, whatever the future now holds. God bless Charlie and his family.

GRANNYSUE You only done what you thought was best during a time of tremendous stress

As a parent if they haven't explored every possible option would they live with guilt.. Logically, yes, let little Charlie slip away, but as parents I can understand them clutching at straws when they are desperate and fighting for their child's life in their opinion.

I understand the child has no sight or hearing and it is the machines that are keeping him breathing, I think it is time for the parents to consider whether he has any quality of life and to listen to the experts.

I agree Mollie and others. My heart goes out to Charlie's parents but I can't help thinking somewhere along the way their sadness at letting go has overtaken what is best for the child.
I understood also that the American doctor had not realised the extent of Charlie's disabilities.
It's a decision no parent would ever want to make.

I also think it's the best option and I say that as a bereaved parent. Loss is always devastating but sometimes it's kinder to let go. I hope the parents find the strength and peace very soon.

The treatment planned is highly speculative, as I understand it has yet to be tried on patients. What is more even the doctor offering the treatment has said that when he offered it, he did not realise quite how severely handicapped this little boy is.
If this child receives the treatment and it works, it still will not reverse the severe brain damage he suffers from, nor remedy any other of his exiting disabilities. The kindest outcome is that he should die.

I do not write indifferently. 25 years ago my (adult) sister received severe head injuries in an accident, the doctors operated twice, but told our DPs that if she survived she would be profoundly disabled. My mother said that she never thought she would ever pray for the death of one of her children, but when the doctors told her of the level of disability that was the best that could be expected, as a loving mother, she knew that the best outcome for my sister was that she died of her injuries, so that is what she prayed for. My sister died and my mother always believed, painful though it was, that that was the best outcome.

Sadly I believe this would be the best outcome in this case as well.

mollie like you I haven't read the details of this case, but I imagine if the baby is that seriously ill, it is difficult to imagine how he could be transported to America without medical help?

Parents do not have rights when it comes to decisions for their children, family courts can order children taken away from parents, nothing the parents can do,

I do feel for these parents but I don't understand (I've not read much about the case) why, if they've raised the money, they can't discharge Charley from GOSH and take him to the USA? Do they need the NHS to provide care between here and the treatment centre in the US?

I do feel for these parents but I don't understand (I've not read much about the case) why, if they've raised the money, they can't discharge Charley from GOSH and take him to the USA? Do they need the NHS to provide care between here and the treatment centre in the US?

grannysue I think all of us who have lost children feel we didn't do enough ,when we lose babies we think thats its something we've done that caused it ,it doesn't matter how many times we're told thats not the case we will always feel guilty....I know I do after 40 years .I also think this couple must be allowed to try their last resort treatment otherwise they'll feel they failed as parents for the rest of their lives .If it hasn't happened to you you wont understand it,they have to know they've done everything in their power before they can let him go

Exactly please don't beat yourself up about it x

grannysue you can only ever do what you think is right at the time. Xxx

grannysue05 So sorry for you. I don't know if it will be any comfort but a friend had a baby who was treated in Great Ormond Street in the 70s. Her baby survived but she found out later that the treatment he received had been tried unsuccessfully before and he was one of the first babies to live. Your sorrow won't disappear but perhaps your daughter enabled other babies to survive. You shouldn't feel guilty for trying everything to keep her alive.

grannysue05, you did what you thought was best at the time. Be kind to yourself.

I think that parents really have to try everything but there is a terrible downside. We had a young daughter in the 1970s who was desparately ill. We asked the doctors to try every (painful) treatment there was at the time. It was awful to watch the suffering, and in the end she died. I have been wracked with guilt all these years wishing I had let her slip into a peaceful death. Oh my, I have never said this to anyone before now. Feel today will be hard.

I agree but having looked after patients whose family were desperate for a cure or something the families need to feel that they have done everything they can otherwise they just feel cheated - and when the inevitable happens they then consoke themselves with the fact that they tried
I don't think j little Charlie's parents have got there yet

The child is severely brain damaged. He can never have a life without medical care. I can understand the feelings of the parents, but it is a fact that people, and children, die.
Eking out the last few days isn't going to help Charlie. And it isn't going to help the parents on the long term.

Good post Janet.I entirely agree