Baby Charlie Gard

[Gemini]

I'm sure you all know the details of this little baby. Now 11 months old, Charlie was born with a rare genetic condition. which makes it highly unlikely that he would live beyond babyhood. While he does live, he can't swallow, breath unaided, see, hear, move unaided or experience much at all, as far as we are told. We cannot know if he can experience pain and discomfort, and that for me is the hard part. If this baby merely exists and all he knows is pain, it is difficult to see how anyone apart from for religious reasons, would wish for him to stay alive.
Drs at Great Ormonde Street say he is terminally ill, and that there is no hope and to allow him to die would be the kindest and right course of action.

The controversy comes from that fact that Charlie's parents disagree with the medical experts and campaign to be allowed to keep their son alive. Lately the pope and even Trump have had their say on this case.
None of us , all parents and grandparents, can help but feel for the parents and the agony they are going through, and who know how we would react were it our child or grandchild? I can fully understand clinging on to every crumb of hope, and wanting to keep your precious baby alive.

New evidence from abroad has suggested there may be other treatments, so far untested. The medical opinion however is that Charlie's brain is so damaged that treatments may not make any difference, just prolong things.
My thoughts (and as I say, I may not say that if the baby was a member of my family) are that he needs to be allowed to go with dignity. He is being kept alive, with no quality of life and no hope of cure, and is possibly suffering.

We all respect each others opinions on here, and all views are valid and respected, so feel free to air your opinion.

[Elisi]

This has touched all our hearts collectively. We long for a cure for this dear baby.

His parents have said the doctors have assured them he is not suffering. My thoughts are why not give him a chance then? Miracles can happen. Often they don't, as is the nature of the world, but just now and then???

As long as he is in no pain, and his little life is unknowing of the trauma, then surely he could be taken to the USA or the Vatican City and given the treatment which has a minuscule chance of helping him.

Yes, if he was a member of my family I would be fighting for this chance.

Strange thoughts about this sad state of affairs has come forth for me. Whilst people scream for the right to abortion, at any stage, there is one small family holding out for a baby's survival.

Time to think on this and possibly get our priorities as a human race sorted out?

[Nanto2girls]

I've been following this story for some time. I have read several articles about Charlie.
I can understand the parents wanting to keep him alive, but if he was my baby, i'm not sure that i would.
Fortunately, i've never been put in such a position.
To be honest, i just don't know what i would do.

[Plantaholic]

Very sad, I don't know what I would decide if I were the parents but the fact that they can keep him alive with life support gives the family hope.

[Clover]

I can fully understand both sides of this awful dilemma My heart tells me to grasp any straw,however flimsy but my head says to let him go peacefully. So sad.

[Oma]

Mmmm a difficult one this , I can understand they want to hold on to him but I think they are prolonging the inevitable , even if they can give him medical treatment what quality of life will he have ? he has no way of supporting his own life or communication his brain is so badly damaged . my opinion is they are keeping this baby alive for their own purpose and I can see why , no one wants to see their child die , but this baby needs to be allowed to die with dignity , as for Trump and the Pope well I wont say what I think of them two ,
Any treatment is experimental and he's being used as a guinea pig poor little lamb ,
They say he's not suffering but how do they really know , my heart aches for his parents but enough is enough time to let go ,
look how poor little Bradley Lowery suffered thankfully that little boy is at rest now .

[Enfys]

Such a hard thing for this family to be going through. I really can understand them wanting to keep him with them but at what cost to him. The doctors say he isn't suffering, but if he cannot even cry how do they know? A baby cries to tell us how they are feeling, hungry, hurting, etc, this poor little boy can not even do that. Such a terrible dilemma, to try and keep him alive....but with what quality of life, or to let him go peacefully. I honestly don't know what I would do, one minute I think one way, the next the other.

[Qwerty]

So sad I too don't know what I would do it's a very rare disease only 19 people in the world had it and none survived what a dilemma for the family 😢

[ZIZI]

This has touched all our hearts collectively. We long for a cure for this dear baby.

His parents have said the doctors have assured them he is not suffering. My thoughts are why not give him a chance then? Miracles can happen. Often they don't, as is the nature of the world, but just now and then???

As long as he is in no pain, and his little life is unknowing of the trauma, then surely he could be taken to the USA or the Vatican City and given the treatment which has a minuscule chance of helping him.

Yes, if he was a member of my family I would be fighting for this chance.

Strange thoughts about this sad state of affairs has come forth for me. Whilst people scream for the right to abortion, at any stage, there is one small family holding out for a baby's survival.

Time to think on this and possibly get our priorities as a human race sorted out?

The doctors do not say he is not suffering, they say he cannot hear, see, smell, breathe independently or feel that is not "not sufffering". There is a 10% chance of a treatment vaguely changing things. No mending of brain damage, no promise of independent living without a tube down his throat and the ability to make decisions. What kind of life is that? The parents say he is not suffering because that is what they want to believe. His parents live only a couple of miles from me and it is a daily update wherever you go around here. My own grandson has had several "this might be it" moments and as hard as it is you have to trust that the people who are trained, such as the GOSH team who have saved my grandsons life more than once, know what they are doing.

Baby Charlie will not survive other than to have what he has now. I know this to be a fact but cannot divulge how. It is terrible and I admire his mummy and daddy for their perseverance, but they are, in my opinion only of course, holding onto clouds.

I know this is my first post for ages but I feel terribly strongly about this........

[Oma]

I so agree Zizi , and its so sad for them

[Plantaholic]

I agree too Ziz, Nice to hear from you.

[Daisy]

It's a heart-breaking situation to be in for everyone concerned, little Charlie's parents and wider family, and also the experienced and caring team at GOSH. I can understand Charlie's parents wanting to save their baby, but I do wonder at what cost to Charlie himself. I haven't read any medical details of the treatment on offer in America, but it seems to be aimed at extending his life, but not necessarily improving it to any great degree.

I worry that the poor little soul is in pain, but can't express it.

What I hope will happen is that his mummy and daddy can reach the decision to let him go peacefully without feeling they've been coerced into that decision, and they can mourn for him without bitterness. At the moment they feel that things are out of their hands, which is heaping even more agony on them.

Zizi - you have sadly been in the awful position of having a very seriously ill grandson who you adore, and it must be especially heart-breaking for you to watch this play out in the media. xx

[Elisi]

There's no easy answer is there. Quite often we are coloured by our own personal experiences when commenting on this and any other sad and difficult situation. I come personally from a place where I deeply understand what Charlie's parents are doing. I lost a little boy in 1980, partly the fault of a very neglectful GP, partly just bad luck., and who knows what else. Thereafter I was very lucky to have my only surviving child, a daughter and was told "no more". I know I would have done absolutely ANYTHING to keep my child alive. It may not have been sensible, or logical or rational. I wasn't any of those three and I had very little support from my ex husband who couldn't deal with the situation and so went back to his "mummy" for a while!!!

So, in a roundabout way, and not to the horrendous extent of Charlie's parents, I have been there, and it lives with me daily. This October, my lad, Ross would have been 37 years old.

[Glammanana]

We will never know how this awful situation would affect any of us as we have never been through it ourselves,we can all imagine how traumatic it must be for mummy & daddy but never know first hand from looking at the recent pictures of this lovely little chap I can see he is a bonny baby and from previous pictures he looks to be thriving even though he is being tube fed,I personally would not wish him a life with no quality to it at all but I also think where there is just a glimmer of hope that hope should be explored to the very last I pray for strength for his parents to cope through what will be a very tough time for them and their families.

[Daisy]

Elisi, I can only imagine your sadness about losing your son. It's a truly heartbreaking cruelty, and I honestly don't know how I would feel or act. I know there is at least one other mum here who has had a similar experience, and my heart goes out to both of you.

I think it's right that they are taking time to look at the options on offer. I just hope poor little Charlie is peaceful and not suffering.