Charlie Gard

Apparently his case is one of the most severe ever - only 16 cases worldwide. No wonder no one has all or any of the the answers. I find it terrible the way DT and the pope have intervened. How dare DT say anything about health care for babies when he is going to remove health insurance from millions. As for this pastor who has turned up - he's a very controversial figure in the States and virulently anti-abortion. He campaigns to defund Planned Parenthood and is using Charlie for his own controversial ends. Apparently staff at GOSH are finding the whole thing absolutely dreadful in every way imaginable. The petition today was ridiculous - the hospital cannot override the court judgement. Why can't the treatment ( I believe it's oral medicine) just be flown over and administered here? At least that way there wouldn't be the issue of the flight.

Do you really think parents should always be allowed to have the last word in the medical care of their children? What about Jehovah's Witnesses?

The father of the child who had the treatment is very vocal in his support for Charlie's parents. His child is profoundly disabled but he feels he has a worthwhile life. Who are we to judge quality of life for another human being? I share the concerns that Charlie is so profoundly disabled that it would be better for his sake to let him go. But medicine is an imperfect science, and while there are differences of opinion who is to say who is right and who is wrong? The proton beam therapy used on Ashya King was in common use in other countries but not here, and maybe we have to accept that we are not necessarily world leaders in research in all areas.

I am just thinking aloud really, I'm not sure what I feel should happen but at the same time there is a large part of me that feels the state should not remove parents' rights unless the parents are shown to be harmful or abusive. It feels draconian to me that Charlie's parents were not even to be allowed to take him home to die after they lost the last appeal. So what I really feel it comes down to is 'whose child is he?' And what would be the demonstrable harm in allowing this treatment to take place, if only to give the parents peace of mind knowing they had tried everything for their son.

It's all just so sad.

I know what you mean nightowlabout thinking aloud. My take on their taking him home was that it was maybe about the suffering and pain he may have endured - no one knows. There really is no where in the world that has treated someone like Charlie - there is no comparison with the proton beam therapy that had been used elsewhere. I've seen the video of the other child ( who was not as serious a case) - one could ask what right has a parent to condemn a child to such a life? And to decide its worthwhile? It's the other side of the same coin isn't it?

Yes it is really really sad and the whole social media circus is making sensible debate impossible. I still don't see why the treatment can't take place here

Yes I do - there must be issues about medical accountability so far asGOSH is concerned. They could only administer the treatment if they thought it was in his best interests

I feel the media coverage is so diststeful and I hope that i would have had the courage to let him die in peace rather than live with no brain and maybe have regular seizures.

Let the money be spent on the thousands of still healthy children who need more care and have hope of living useful lives.

Many people loose a first baby, but are well advised to get pregnant again and have a healthy child.The couple in the limelight are making a lot of trouble for themselves and getting used to being on TV is not going to make their future easier.

Looking after a severely disabled child is hard but nothing like as hard as when he would become a severely disabled adult. Its hard to see how he or they could have any sort of life quality.
Sometimes life is just plain cruel.

There are some very moving posts on MN from parents who 'let their children go' because they loved them so much not despite the fact they loved them so much.

In the 'old' days, he would probably have died at or shortly after birth, maybe sadly that would have been kinder all round.

Day6; 'I really feel that they have exploited social media however. This story is typical of the times in which we live when everything going on has to be for public consumption.'
..I agree with this. Also, with the fact that the media exploits vulnerable people in situations like this because it makes for good 'copy'[if that is the right term]. I'm saying this because of something I was told recently but don't wish to expand upon, but it was something that shocked me.

I cannot agree with children who 'still have healthy lives and have hope of living useful,lives having the money spent on them' and as for the media circus, it was how the parents raised over one million pounds to take their child to America,I don't believe these parents love more or less than parents who let their children go.

If it was me I hope my faith would be strong enough to let him die but I don't know so cannot add to the let him live or let him die judgement .

I pray God gives them the strength and courage to face what lies ahead for them

I don't think it's a question of whether they love him more or less, it's that there is more than one way of behaving when you love your child - many of the members of 'Charlie's Army' think that loving only means fighting to keep alive. I agree about the media exploiting them - and they'll turn on the parents when that makes 'good copy'. Wait for the 'what's happened to all the money?' stories in a few months time

I read an article by a paediatrician who has been involved in many tragic cases and he said that so often the parents' desire to give the child a chance of life really means that they just extend the process of dying.

The doctor behind this treatment is only talking about a 3 or 4% improvement. This is not going to turn Charlie into anything like a normal child. The parents are upset because they had promised him he could come home. No 8 month old baby would have much idea of what that meant. They are building up a fantasy child and eventually they will have to face reality. I hope that doesn't mean finding themselves halfway across the Atlantic with a dead baby.

Like all the posters here I totally agree the baby should be allowed to die naturally however as they would be completely funding themselves why not let them take him to US for the treatment then they will be satisfied they ve done everything possible and not be able to lay the blame at anyone's feet ...... I can't see that he would be any worse off there than here, the poor little mite doesn't have a chance either way I m sure he would be flying with a nurse or doctor and with whatever machinery needed and if it didn't work and he died over there he wouldn't know the difference but they could rest knowing theyd fought for him to the end Why deny them that ....if it was NHS money I wouldn't be saying that but it isn't they ve raised the money

So sad, but I think it's getting uncomfortable now for everyone.

I don't think people really understand how difficult it is to transport a patient across the world whilst on life support. The parents are not the ones who would be responsible for the medical care and what if he died mid Atlantic ? Blame and court cases and never ending heartache.

The way I see it, if the baby makes only a slight recovery he is only going to have half a life. He could outlive his parents and spend the rest of his sad life in an institution. I think the time has come to let go.

It's time this whole media circus around poor little Charlie was stopped. So many people who should know better exploiting both the grief of the parents and Charlie himself. There is no way of reversing the damage which has been done and he has barely any quality of life. As others have said as an adult if he survived, life would be so limited and painful.
I would not want to be faced with the decision the parents have to make but think they have got caught up in the fight to save him without thought of the consequences. Words cannot express the sadness I feel for the little family

Why does only perfect health equal a happy life ?

of course, we all feel for this baby and his parents but I do believe his interests are being lost in what has become a campaign to keep him alive at any cost. He is a very sick baby and without wishing to sound heartless, it seems to me that the medical options have been fully considered and the least worst solution for this baby reached.
The staff at GOSH and the parents of other very sick children seem to be having to walk the gauntlet of the so called Charlie's Army. I read this morning that a pastor from the US is complaining that he wasn't allowed to pray at Charlie's bedside. Those who believe in the power of prayer will also believe prayer doesn't need to happen in the immediate vicinity of the people being prayed for.
It is totally out of control.

Forgotten the name if the family who were arrested for taking their child to another country for treatment, the NHS is now going to treat the same illness that child suffered from.

Do you think his life is happy Annie? Or that of his parents? He is very seriously I'll and severely disabled child who will need hospital care and probably life support forever.
Just because we can doesn't mean we should.

I don't know annsixty,