Charlie Gard

38 years ago my daughter was born 12 weeks early weighing 2lbs 12oz. Initially she was well but after a few days developed many infections as well as severe jaundice and she stopped breathing numerous times. At 4 weeks she was extremely ill and we were told by the paediatricIan that there was nothing more they could do for her and all we could do was pray if we believed in God. He said that if she survived she would be a vegetable. Well we prayed that she would come through it even with that prognosis and we had a priest come in to give her Confirmation as she was baptised straight after her birth and babies arent given the Sacrament of the sick. That baby girl is now mum to two strapping teenagers and has a university degree. She works 2 jobs and volunteers for various charities. So the doctors were wrong with their prognosis. Without allowing Charlie the possibility to go to the USA how do we know that he is not being denied the chance of life? When you have a baby you can't help but fight for its right to life. Money has been raised to send Charlie to America. It will cost the NHS nothing to let him go there. If the treatment has only a 5% chance of helping him then let him get the treatment in the US. If it doesn't work then Charlie's mum and dad and other family members will know they tried everything and can grieve for their darling boy without the horrendous guilt they will live with forever if they don't get the opportunity to try. Nobody has the right to say how his parents should act or what they can say as believe me, if you haven't had to face that same kind of situation then you have no right to comment negatively as you have no idea what hell they are going through. On a similar note I have many friends who are disabled some from birth and others due to accident or illness. The ones born with disabilities all agree that it's easier for them as they have never known a life without being disabled. The same will apply to Charlie. This is the only life he knows he doesn't have a former life to compare with the life he has now so if he does get any better but is still severely disabled he will be happy. I've never heard one disabled person say they wish they had been left to die at birth. Life is full of hope and where there is life there is hope. As my daughter proves every day x

And these staff are also looking after other seriously ill babies and children. I feel sorry for everyone concerned but the staff at the hospital should not have to work under this sort of pressure. Is it wrong of me to be curious about the background to the case eg have the parents been trying for years for a child without success; do they have strong religious beliefs etc?It's just that I'm trying to get my head around how and why this has come about.

The staff are not just doing the job they are paid to do paddyann or the life support machine would already be turned off. They are going beyond that and trying desperately to accommodate the parents but looking after a child they think may be suffering. They work all the time with such children, but not under such circumstances, and as I said they are carrying the burden. The parents may be on a journey but they should also remember that there are people caring for Charlie as well. There may also be other children who will not have a place in intensive care because Charlie is there. I wouldn't expect the parents to consider that but the staff must certainly wonder about it. The staff have said that they don't know how much he is suffering, the parents choose to believe he isn't. So arguably the staff will be more affected by the things they have to do than the parents.

dont feel sorrier for the staff,they're doing the job they are paid to do,the parents are on a journey they haven't travelled bfore with an oUtcome they cant imagine.They have to do what THEY think in this case otherwise they will live their whole lives with guilt.I believe this will come to its natural close very soon

We know of a family whose daughter began presenting problems as a toddler. Continuous deterioration. At one point in early teens endless fits. By now having to live in specialist home for 24 hour care. This poor soul knows nothing, is blind deaf, recognises no one. Despite doc's saying years ago to parents we should stop drugs and let nature take its course. Mum refused. That child is now in early thirties. Effectively dead but being kept alive. Absolute madness as in poor Charlie Gard's case. If it were an animal you would be prosecuted for prolonging suffering IMHO.

It does seem that the doctors have done everything they can to accommodate the parents' wishes, eventually deciding that Charlie's best interests were not being met by them and so the matter came to court. I think we have to remember that every day whilst the parents attend court and present petitions there are staff at GOSH who are caring for this baby, checking his tubes, cleaning him and keeping him alive. I feel sorry for the parents but even sorrier for the staff who carry this burden.

Predictive text grrr, I wouldn't like her......

I should add to my previous post that I think the whole situation is unbearable for everyone concerned. I feel sorry for the hospital staff, the parents, the poor little baby, and indeed the judge. It is indeed the most difficult of cases. Whatever happens, all these people will live with outcome for the rest of their lives. My daughter is a doctor, I would have for her to be caught up in such a case, but ultimately my sympathy is with Charlie's parents who will live with the consequences daily forever. I hope they find some peace whatever the outcome.

We can only hope that the fact that the final decision is down to the courts takes responsibility away from GOSH, who seem to be completely in a no-win situation now despite doing their best in the interests of the baby.

nightowl and anniebach both good posts in my opinion. Many people have criticised the parents, indeed even demonised them, but unfortunately whenever desperate parents involve the media this seems to be the effect, the parents of Maddy McCann (obviously a very different case) were subjected to the most vile accusations and treatment by some people.
Female genital mutilation is not a treatment of any kind and parents subjecting their children to this disgusting procedure are committing child abuse. It cannot be compared to what Charlie Gard's parents wish to do.
Asher King had a very different condition, I don't know why the authorities acted in the way they did in that case, but as the treatment he eventually received was already being used successfully in some other countries, it seems that the authorities in his case were wrong. There is a very valid question as to why those parents were vilified and criminalified by their actions which has not been addressed by the authorities. Equally I believe only one case of FGM has been prosecuted, why? This is the background to where we are with baby Charlie Gard. Maybe it throws some light on the behaviour of his parents.

This has ever been a win or lose Court situation, it's beyond "the best interests" of the child. The Court has to analyse the new medical evidence that will be presented by Charlie's parents and reach a judgement on the least worse course of action for this baby. The doctors who say ChArlie may be helped by treatment will have read his medical notes so I'm not sure it's essential they examine this little one.
The family Courts have been criticised for being confidential, or to quote the DM, being secret courts. Charlie's situation is a real life example of the pros and cons of publicity. I don't believe it would be possible, or right, to have an order preventing the parents publicising what's happening.

I asked this yesterday we are not asking for a team of doctors from the states to see Charlie just one doctor who knows what he is doing to come over and give a opinion. In other words Put up or shut up

A photo in the DT today with his parents and the preacher seem to portray a child who looks so different from previous ones. He looks much bigger and actually bloated by either meds or his condition.
Poor,poor child.

Charleygirl I don't think you can put a price on a child's life and I know if I were in baby Charlie's parents place I would do anything to give him a chance of improvement.
There is nothing worse than losing a child, I know because I've lost two.
I think the decision should be for Charlie's parents and nobody else. After all, doctors are not gods and they do make mistakes.

It is a mess Merlotgran and I do think the parents have courted this, although of course they are just fighting for their little lad but I think they aren't looking at it at all rationally I don't mean that as a blame thing just a fact... you know sometimes in kiss and tell cases the courts keep it all from the public and don't name people I think this should have been one of those cases where none of this information should have been released to the media there should have been a black out on news The protesters, the paster, Trump and all them need to disappear I think the lad should probably have the treatment just to prove to the parents and then it can all go away
Brain damage which is listed as severe isn't going to ever recover what ever they do to him, you can't rebuild a brain poor little chap thank God he's not old enough or in a state to know what's happening to him ( I presume) poor little thing and his poor family but sometimes you have to overrule emotions and think what is best and keeping him in a vegative state with a very poor prognosis is cruel

I agree GOSH can't win whatever happens now. No one can can they?

I don't see it as washing their hands though.

GOSH have tried to act in Charlie's best interests so if the courts insist they are right and life support is withdrawn they'll still be seen as the guilty party.

It's a mess.

I feel sorry for the Judge!

But merlot the courts have to act in the best interests of Charlie - they can't just wash their hands of him. The judge is considering the 'new' evidence and will then decide

Thanks to Annodomini for the information in the Guardian article.
What is the damage to Charlie?

(This is the most comprehensive information I have seen.)

Charlie is in intensive care at Great Ormond Street hospital in London, the leading children’s hospital in the UK. Life support machines are keeping him alive. The hospital says that he has severe brain damage, cannot move or breathe by himself, is deaf and has epilepsy. It says his heart, liver and kidneys are also affected. His eyelids cannot stay open and because of the weakness of the muscles, his eyes point in different directions and the damage to the brain will not allow his sight to develop.

This in a nutshell is what this poor child is up against. A genetic failure that causes a wide range of extremely serious health issues which at its worst affects almost every cell in the body.
Poor lad and poor parents but the appearence and behaviour of what has been called by protesters "Charlies Army" is totally disgraceful.

Did the parents exploit social media ? They did run a campaign to raise the money to take their child to America, I hadn't heard of it, I knew nothing until the hospital decided to go to the courts for the right to allow the child to die, since then the parents quite naturally put their side of this deeply sad case

I don't think they are putting themselves before their child, obviously they carried out seeking information on the Internet and doing this have been given a glimmer of hope, I still cannot come down on one side or the other because I don't know if I would do the same or accept the hospitals decision,

I don't think the court will change the decision to allow the child to die here, I do think if they did overturn the ruling it will cause many problems for the hospital , there could be other parents who may question the diagnosis given by the hospital.

As they are giving the little one morphine I think they were mistaken to delay ending his life

Surely the only answer to this awful tragedy is for the court to allow GOSH to release Charlie to the care of wherever it is the parents decide to take him?

The parents have raised the money and they are determined to keep trying so GOSH are on a hiding to nothing.

If/when the poor little boy dies at least it won't be on their watch. They've done all they can.

This is terrible for the dedicated team at GOSH.

ann the staff are already being called murderers and worst online by CA - however most of them are archetypal key board warriors although it would only take a handful to behave badly I agree. The hospital will not win whatever now - even if the treatment happens and almost surely fails, it will be said that if only he could have had it sooner etc etc.

Plus a team of American doctors coming here could cost the lives of American children.