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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Charlie Gard case

999 replies

LovelyBath77 · 06/07/2017 09:41

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.

OP posts:
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stopfuckingshoutingatme · 06/07/2017 21:35

Oh zee. Thanks for sharing that

53rdWay · 06/07/2017 21:36

Flowers so sorry that you went through such a terrible time, zeezeek. I am sure you made the right decisions for your son.

zeezeek · 06/07/2017 21:36

Thank lovely. It is a long time ago and my girls are such a comfort to me so I got my happy ending, but saying goodbye to my little boy and then losing his Dad a few months later is the hardest thing I've ever done.

I do think that due to that I'm not as good a parent to the girls as I should be - I feel as if I, always holding something back and can't love them to the extent that I loved my son because I can't go through the pain of losing them.

Losing a child is something that you never recover from.

PacificDogwod · 06/07/2017 21:38

Zeezeek, I too have no words Thanks

Independent article giving a measured view on Charlie's tragic circumstances.

Ceto · 06/07/2017 21:39

I fear that these parents are almost being trapped by Charlie's Army. It's got to a point where they have to keep feeding their supporters' emotions, and they daren't change their minds and decide that it's time to go for fear that they'll become murderers too in the stupid eyes of CA.

Sluttybartfast · 06/07/2017 21:44

dullmoment, money is not and never has been the restrictive factor here. That is explicitly stated in the court judgements. Charlie could have had nucleoside therapy in the UK - the reason he didn't had nothing to do with costs and everything to do with the fact that it was ethically judged to be not in his interests.

LetsGoFlyAKiteee · 06/07/2017 21:44

I'd be so worried over the hype and the emotions of these people. They'll probably have end up having to comfort some or something daft. Or the people will drift ..I can't see so much support when things are done with

ARumWithAView · 06/07/2017 21:44

I don't remamber where I have heard about sponsors threatening to withdraw support but I think it was to do with catholics being upset after Pope got involved.

As far as I can see, the only reference to GOSH losing any funding is that it will lose 10% of its research budget by 2020, due to Brexit, unless alternative revenue sources can be found. GOSH has received £25 million in EU funding since 2010. It has 44 active EU-funded research projects, with six at clinical trial stage for new treatments.

GOSH's day-to-day running costs are funded by the NHS, but it also raises £90 million a year for research, equipment, patient support and other projects. Unfortunately, I can't cite a source for this, but it's estimated that tuppence ha'penny of this sum comes from the kind of fuckwits who join internet mobs and defame doctors.

I'm speculating..why else are they prolonging it?? If Charlie is in pain as they claim then it's just inhumane. If they aren't sure they should let the parents make the decisions.

You don't respond to anything anyone else has written about the likelihood of his pain, or appear to have read or understood anything medical professionals have said. You're speculating? You think it might be inhumane to prolong this?

Why do you think this came to court? What goes through your head?

But, hey: if you and the rest of your witless army don't personally feel convinced by the multiple medical sources and court cases, then let's work on the assumption a small non-communicative non-mobile terminally-ill infant isn't in pain, because that suits our narrative better. That's obviously the reasonable approach. Let's steam ahead and congratulate ourselves on how fucking heroic we are. As CA keep asking, what's the loss?

And Flowers seems so inadequate to the parents who are sharing their stories here, but I don't know what else to say. What you have been through, and your willingness to share it amidst such an upsetting debate, is beyond words. I'm so sorry.

DorotheaBeale · 06/07/2017 21:47

Maybe treatment is just way too expensive.

Referring again to the court judgment, which is available online for everyone to read, it was stated that cost was never an issue; if GOSH believed there was any treatment that would benefit Charlie, they would fund it.

neveradullmoment99 · 06/07/2017 21:50

I have no idea the ins and outs of this situation with regards to Charlies case. However, funding is always an issue imo regardless of what anyone says. In the case of charlie, I agree, it isnt about funding now. It may well have been at the beginning of his treatment. It is my opinion.

flatbreads · 06/07/2017 21:52

zeezeek I honestly just do not know what to say... most of us have absolutely no understanding of what many people go through, the utter heartache of losing not just one person that they love but two.. ? I am so glad that you have found happiness with your girls now Flowers xxx

neveradullmoment99 · 06/07/2017 21:52

and in my opinion, it is now becoming political.

DorotheaBeale · 06/07/2017 21:52

And flowers seems so inadequate to the parents who are sharing their stories here, but I don't know what else to say. What you have been through, and your willingness to share it amidst such an upsetting debate, is beyond words. I'm so sorry.

I was searching for words to say something like this, but ARum has said it better than I could.

zeezeek · 06/07/2017 21:53

It is really insulting to GOSH for those people to insinuate that there are financial issues with Charlie's care. Whilst that is obviously a consideration for the NHS (and even in Charlies Army beloved USA someone has to pay ), our dreadful socialised medicine isn't going to present the parents with a massive bill when their baby does die.

Charlie is, to all intents and purposes, already gone. The kindest thing to do is to let him go.

Summerswallow · 06/07/2017 21:55

zee so sad to hear your story, must be hard to tell it, as you say, as the person also connected to him is dead. Hugs to you.

Badgers what a very moving statement and what tremendous love for your child.

misshoolies I can relate to this, sometimes you don't feel you are doing enough or are 'exciting' enough, but you have to remember that loving someone every day they have left on this planet is a special thing. I try to remember that.

Ceto · 06/07/2017 21:55

Neveradullmoment, funding is a matter of fact, not opinion.

If funding were at the only concern, don't you think GOSH would happily have let him be taken to the US as soon as his parents raised the money? There comes a time when ethics have to come first.

QuackPorridgeBacon · 06/07/2017 21:55

When has funding ever been an issue?

I have a child that ended up with a heart transplant. She has cost the NHS probably millions and money or funding has never been an issue.

We even got flown over (and still do for appointments) for free, accommodation for free, obviously all her treatment for free she even cost 50,000 on pumps for her Berlin heart due to small clots that they couldn't risk shooting off into her so had to chop the pump off, twice at 25,000 each.

She still has a feeding tube and pump and all the relative syringes are supplied, for free.

Her humidivents that she had on the end of her tracheostomy averaged at £7 each and she got through three a day, sometimes more if she chucked them off while outside and needed a fresh one.

Why do people think funding is an issue? The NHS understands treating patients will cost a heck of a lot of money, that's why they have donations and charities working with them to help support all the costs.

QuackPorridgeBacon · 06/07/2017 21:57

Zee your story is heartbreaking, and I am so sorry for your loss but glad that you have found happiness.

JaneEyre70 · 06/07/2017 21:58

Ceto that's a very good point.

LetsGoFlyAKiteee · 06/07/2017 22:02

Ceto ah but didn't you know? They can't go to America now as it'll prove that GOSH were wrong all along....

Someone going about how they should sue if his life support gets turned off..Sue for what?? Another about a free lawyer..right and another how people should kidnapp him cause be that easy..just dont get it.

Sluttybartfast · 06/07/2017 22:06

What the NHS does do, through NICE, is weigh the cost of a treatment against its efficacy and its potential to improve or extend lives. Which is a hell of a job, and I'm very glad not to have to make the judgements they do. But when a treatment is genuinely beneficial, even if it's expensive? They fund it.

Feel free to research the system and the basis for the decisions, dullmoment. The information is freely available. The decision-makers on an individual level are the doctors, and I know from my long acquaintance with NHS medics that a) they don't have to sign budgets and b) they don't give a shit about budgets if they have a patient they think they can help.

zeezeek · 06/07/2017 22:06

Thank you to everyone for your hugs and flowers. It is appreciated because when I see some of the things about Charlie there is a part of me that wonders did we fight enough for our Sam? Should we have waited one more day to turn the machines off? If we'd waited would we have had our miracle?

I know that it is not the case and my son was destined to die when he did - and probably would have even now, but the furore around this case and these parents do open up wounds for people like me and I cannot help but judge Charlie's parents however much I don't want to. Sam died before social media even existed and I only have one photo of the three of us together and in it we both look half dead ourselves.

My girls know about their brother and as they get older (they are 10 and 8) they are learning more about what happened to him. They talk about him because my husband and I do and they have seen the few photos I have of him. I like to think that a part of him lives on through them.

I really hope that Connie and Chris find peace for themselves because I don't think that they are bad people, just parents who are living a nightmare and trying to navigate waters that they never even imagined existed.

flatbreads · 06/07/2017 22:07

Have none of those selfish twats never had to seek treatment on the NHS themselves? It beggars believe to talk about suing them?? Dear god this is all just becoming utterly ludicrous.

sparechange · 06/07/2017 22:08

How are these idiots explaining away that the US doctor who originally offered to treat him withdrew that offer long ago when it became clear how complex the case was?

There is no treatment to go to. There is no doctor waiting in the wings.

There are probably a few quacks and charlatans who will take the million quid off them in exchange for something, anything (probably involving vitamins, coffee enemas and cannabis oil judging by the idiotic articles that I see pop up on facebook from time to time)

But the original treatment they raised the money for isn't an option, and hasn't been an option for a long time.

flatbreads · 06/07/2017 22:10

Oh zeezeek, I think that you must have made absolutely the right decision for your son at the time. I cannot imagine how dreadful it must have been for you but you would have done what was totally in his best interest and that is the most important thing. This case must be bringing back some dreadful memories and feelings - more hugs to you xx