Charlie Gard case

[LovelyBath77]

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

Badgers xxxx

The sun have an article saying the parents have been left out of the hospital meetings this week, or when they have been asked to attend they are given no time to arrange legal representation. The word ambushed was used. I feel sad about this if it istrue, but perhaps the relationship has completely broken down. I know from my own experience we never really had meetings as such, just a quick word with a doctor or consultant. But we where alwaya kept informed and it was the nurse in ICU we had the most dealings with as she was always in the room. We still keep in touch with her.

Badgers and hippo I'm so sorry for your loss. May your beautiful babies rest in peace xx

Oh badgers

I'm so sorry for your loss badgers

I'm so sorry for your loss badgers

Yes, I read a similar account in the Henry Marsh book Do no Harm, about a girl who he'd operated on for a brain tumour twice, and then wanted to pursue a treatment offered which he knew wouldn't help, and required him to do a further op. he mentioned sometimes it's so difficult as he knew it wouldn't help, she was too ill and might even make it worse (causing some kind of fungus or breakdown of the skull, sounded horrible) but he did it, and she finally seemed to come to terms with her death being imminent.

I have also seen it with my condition, people with extensive adhesions post surgery, which cause bowel obstructions going abroad for some stuff - gel to spray int he tummy to stop them coming back. It doesn;t seem to work and my surgeon said it didn't. Mose surgery usually means more scar tissue. But people are desperate. It means either living with this risk and obstructions, and people are in a lot of pain.

It makes me angry at the clinics and people profiting from this, too.

So sorry to hear of the loss of posters on this thread.

Yes I just saw that Maud- it said they hadn't been updated on his future treatment and plans. But I suppose they only have one thing to discuss now which is his turning off of the machines, which the parent;s won;t agree to. So it must be difficult.

Maudlinmaud Yeah I read that. Hopefully not as true as made out and it's the Sun so does lack credibility. What feel may also break down the relationship is articles like these and speaking to the media. Their entitled to say their bit and at the same time can't blame them but same time..

I also rad (not sure if henry march book or another) about how challenging it is to be a surgeon with children or a paediatrician, sometimes they have these awful things, and the parents never forget and forgive- sometimes they even get hate messages in the post, or often they try and sue, just out of anger really. I mean there is no negligence here on the part of GOSH. It's not that they missed his diagnosis, and he' s left injured from their care. It's due to the genetic mitochondrial disease. So not sure what further action they could take really.

read, sorry for typo

As far as I know they relay heavily on donations and some of the main sponsors have threatened to withdraw the support over this.*

There is £1.8million available to them to assist with the long term financial implications and expenses of having a poorly child in hospital long term.

Charlie is not having nucleoside therapy now. And if by some absolute Landmark setting aside of a High Court verdict, the USA have already offered to do Charlie's treatment free of charge.

They are unarguably financially solvent enough to be okay, even if a few people did stop sponsoring them, which still seems very unlikely as there is nothing about it online?

logical people are referring to GOSH's sponsors, not Charlie's parents' supporters.

I think there will be another legal case in the future regarding why Charlie wasn't able to have treatment before he deteriorated. I hope I'm wrong.

It's just a hideous situation all round. I personally feel, as someone with no emotional involvement with the case, that that poor Charlie should be allowed to slip away and be free of pain. The Doctors at GOSH are not going to have made this decision lightly or without appropriate expertise and the Courts haven't supported it for no reason. However as a mother, I do understand why his parents are fighting like they are. I would too, rightly or wrongly. They must be so so desperate and the thought of being in their position makes my blood run cold.

chupsmelad Oh dear I totally misread the comment comment retracted, I thought it was being rumoured that people are withdrawing funding for Charlie, my mistake. Apologies.

the thought of being in their position makes my blood run cold.

This.

That lovely bright-eyed little baby in the early photos. To see your child go downhill like that... there are no words.

Have been lurking. thought this was pretty spot on

www.theguardian.com/commentisfree/2017/jul/06/charlie-gard-heartbreaking-society-cant-shun-experts

I can believe at this point they can't involve the parents in meetings or discussions - the court decision has been made, it's currently binding and by sharing information they're simply handing the parents and their legal team ammunition they will use to stall this and impede it even further. Not least that it will immediately be released to CA and the Daily Mail in video form.

The ECHR judgement mentions the difficulty for medics in having to act against their ethics and the child's best interests day after day while this goes on. And unfortunately the parents, however distressed, do have to take some responsibility for creating and actively fuelling a situation that has forced GOSH to limit their communication and choices.

I feel for the parents, they must be in unimaginable pain, but I don't think they are putting the child first. My DD had a brain tumour as a small child, she had treatment then relapsed and we didn't know for a long time how it would go. She's grown up now but recently has been referred back because she has some signs all is not well. It looks like it isn't tumour, but when the alarm went up although I was devastated because I don't know how I'd go through all that again, or how I'd do without her now, my main reaction was that I couldn't bear it for her, the thought of my beautiful girl having to go through illness and pain and trauma is just unbearable. I really thought that when these parents were given a little more time, and they asked for privacy (?) to say goodbye, that they had accepted what was in Charlie's best interests and were going to work with the hospital to bring that about. The situation now is heartbreaking.

to all those who have lost dear children, I hope for strength and peace for you.

I've never mentioned this here before. In fact I rarely even talk about it in rl anymore.

Several years ago I gave birth to a little boy. He was born prematurely, but not dangerously so - 30'weeks. Within a few weeks it was obvious that there was something very wrong as he failed to thrive, had problems breathing and seemed unresponsive to everything. His father and I were at a loss about what to do and eventually ended up under the care of GOSH. We were young parents, not even out of our teenage years and were incapable of understanding what was wrong with our child. No one had any answers and there was no hope. He stopped breathing suddenly one day and was put on a ventilator, however it was made clear to us that that was just a temporary measure and that we would soon have to make a difficult decision. We didn't feel rushed or pressured, but we were made aware that there was no hope and our baby was going to die. We decided to switch off the life support and told them that we wanted it done as soon as possible because we didn't want our child to suffer and didn't want to suffer ourselves. Our son died quickly and peacefully in our arms. We never knew why he died, but I suspect a genetic cause and could potentially look into it, but decided not to.

A few months later my partner died himself, a suicide in which his grief reaction towards our baby's death contributed to his own death. But I survived and a year later was diagnosed with cancer and was told that the chances of me having children were low. I went on to marry another man and we had our miracle children - a surprise conception and birth both times and ridiculously healthy. But that doesn't mean I don't remember my first baby and grieve for him and the man he would be now. It is especially difficult because his dad is dead.

Thank you for sharing Zee. You have been through such a lot.

Zeezeek, I wish I knew what to say.

It baffles me why people think that GOSH aren't doing the best for this baby. If treatment was an option, or in his best interests, he'd have been given it

Not always the case unfortunately. Money is also a factor. Maybe treatment is just way too expensive.