Charlie Gard

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

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

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.

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.

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

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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

Tegan, what difference does it make if they had been trying for years to have a baby? If they hadn't does this mean they just say - let's have another child?

I lost two babies and we had two healthy little girls, didn't make the pain less

Nonna lovely post, and thank God your daughter has recovered so well.
We can never be sure.
At the other end of the age range - husband's father had a stroke and was in a veg. state for many weeks. Husband insisted that he should continue to be suported and he recovered almost completely and lived another 2 years.

Nonna I am so pleased to hear the happy outcome for your daughter, and I'm sure other GNers have not dissimilar stories.

However, your daughter was not comparable to this baby who has horrendous diabilities so I don't feel this is a fair comparison.

Each case of a seriously damaged/sick child will be different. We can all find stories where, against the odds, a child pulls through and that is a joyous situation. No-one knows this better than paediatric consultants whose life is working with very sick children.
It seems this little chap is already dead but is kept breathing by machines. These poor , desperate parents need some good & true friends to help them accept this awful situation and not the rent a mob baying for doctors blood!
I am not a person with faith and I find it hard when those who do have a faith want all sorts of artificial interventions to keep a body breathing. This child needs to be allowed to die with some dignity. For those who believe he will go to a better place.

Annie; I'm just trying to get into the mindset of the parents to understand why they are making these decisions. My mum lost many babies before she had me when she was in her late 30's [miscarrying again several times afterwards, too]. I know it seems wrong and nosy of me to want to know, but I'm just trying to understand what is happening. I also know that the press will contact vulnerable people to get a story out of tragic events such as this, and this is worrying me also .

The child must be a ward of court or whatever you call it nowadays. All the power here is in the hands of the courts. GOSH has a lot of input and the courts want to work with them.

Regarding release of confidential medical details, I am sure this is the best thing to do now.
There are so many people out there demanding solutions and getting angry when they have no real comprehension of the severity of the child's physical condition.

If there is no proper accurate information the public or the press is more ikely to speculate and and create stories of their own, intentionally or accidentally. That could be so much worse for all parties.
Let the poor child rest.

Our beloved brave 7 year old grandson had a very rare disease and was treated over 15 months at Great Ormond Street hospital. He received excellent care and kindness from all the doctors and nurses but after all the pioneering treatment he received and with our hopes raised, very sadly he died in June 2016. We so feel for Charlie and his parents in all their endeavours and pray for a miracle.

How sad, Herbie

To be honest if he s not in pain, and he won't be, as he's on morphine Charlie will be the least to feel sorry about, as he will know nothing about this dreadful situation he has no congnitive skills to think ' I want to live', he has no experiences to think, 'I want to be out playing not lying here', he has no movement so he won't feel restricted, he has no sight or hearing so he is alive in name only he is doing nothing, thinking nothing, and being nothing. He is already dead apart from a machine
His parents deserve and are mainly being given huge empathy but they are in a 'fight' bubble which has got so strong they have forgotten that what they are fighting for even with a 5 or 10% improvement there is only the expectation of a delay in his death
The media, the celebrities, the protesters seem to be involved to gain kudos or for mischief
There are no winners especially Charlie, If you are a believer then Charlie should be at peace with his God,