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Charlie Gard 20

999 replies

CremeFresh · 27/07/2017 20:49

Don't know if anyone else has started a new thread .

OP posts:
ChattyLion · 29/07/2017 20:17

I can't square the hypocrisy of pro life people arguing for this apparent absolute parental 'right' of determination over their children, with the lack of rights that the very same would impose over other mothers and fathers who only ask for autonomy over their own bodies, or to make different choices about how and when (or if at all) they become parents. The cognitive dissonance must be awful.

Btw- i am not saying that being prolife is a view shared by all Christians, or all religious people- far from it.

Stoprightnowplease · 29/07/2017 20:25

GOSH still getting abuse on FB I see. This campaign against them is so disturbing, I lost dd3 there ten years ago and I feel so angry at the comments against them.

So irrationally angry and furious.

Ellie56 · 29/07/2017 20:28

I hope there will be no further lawsuits against GOSH. Does anybody think there is any basis for further legal action with regard to them leaving it until it was "too late for the treatment"?

affectionincoldclimate · 29/07/2017 20:33

I must say I appreciated these threads hugely and followed them keenly as the discussion was incredibly balanced with fact, analysis, personal stories, input from HCPs and sensitive moderation to ensure compassion and understanding was always at the forefront.

I also believe that these threads were directly responsible for a lot of support going GOSH's way - I know that I wrote to GOSH and donated out as a result of a request from a Mumsnetter and requested people in my network do the same. Some were not even aware of the GOSH being under such an onslaught as mainstream media reporting was so poor!

Talking of which.... the media reporting on this case was and remains APPALLING (it needed capitals).
From emotive headlines through DM/Sun reporting it as if GOSH had to be convinced rather than the court, to omitting key milestones in the timeline making it look like GOSH never considered the treatment (they did) to never holding Charlie's Army Facebook page to account properly when there was plenty of evidence on threats to GOSH made there, prioritising the emotion over fact. In most articles the balance of reporting of what parents said versus readily available facts from court rulings and GOSH statements was skewed to reporting for the parents including what they looked like and how they sounded for added ghoulish drama. In essence, instead of reporting what was a complex case of law applied to protect the rights of the baby as an individual human being became a story of plucky parents fighting "the system". If you read some of the comments on CA a lot of them were linking to newspaper articles which were then used as a fool proof evidence of their version of "truth" because a paper reported it so it must be true even though the facts verified by scrutiny of a complex court case were readily available. At best it's lazy journalism, at best it's exploitation of a tragic situation.

Interestingly, the Aysha King case was being quoted constantly by people in various discussions and what transpired every single time is how utterly misunderstood that case was by those quoting it, usually as a case to prove how doctors get it wrong or how NHS is somehow intransigent. What most people took away from it was that the boy was about to die and NHS refused treatment leaving him to die, where in fact NHS was desperate to treat the boy and parents disagreed with the type of treatment which actually has the same success rate as the treatment administered in Prague. The reason for contacting police was that the hospital feared that delay may be fatal. And the fact that parents brought the boy from Spain where they initially pursued alternative treatments (quacks) which made the situation worse and NHS was sorting it out with urgency.

I fear in the years to come Charlie's case will be remembered in the same way. Just the headlines, none of the nuance. There will be special kind of hagiography reserved for the parents, especially Connie who is now painted as a saintly figure as she fits into the Madonna narrative - saw some memes doing rounds to that effect.

P.S. I'm on holiday in Poland at the moment and Charlie was headline news here too. Poland is quite religious by Western standards and I saw Catholic magazines/newspapers using Charlie's story to further pro life agenda even urging readers to sign the petition! Yet just today I watched a discussion programme on the more liberal channel and those discussing it were acknowledging that decisions like this were best taken out of the hands of parents who may be blinded by grief. There was a progressive theologian on the panel too and I expected him to be quite conservative. He actually clarified the Christian position on this as not employing "extraordinary measures to prolong life" and that nature (God) were to be respected too even if modern medicine allows to keep people alive beyond what nature would allow.

I do hope the parents get some peace through channeling their efforts into Charlie's charitable foundation. Lot of the campaign was based on such negativity and blame that if something constructive comes of it, it may actually help the healing.

Toddlerteaplease · 29/07/2017 20:36

The comments that have really stood out for me today have been from those who are really shocked about how quickly Charlie died, and about how sad they are that he didn't start to breath on his own. The complete and utter denial /ignorance about how sick this little boy really was is shocking. I wonder if there is a single person who previously advocated Charlie being taken to the USA to be essentially experimented on, who now realises that to even ATTEMPT to transfer such a critically ill ventilator dependant child would have been madness.

/

This. Exactly what I've been saying for ages

minxthemanx · 29/07/2017 20:53

Haven't read whole thread but wanted to post. As someone who has sat in gosh intensive care, not knowing if their child was going to survive each night, I know exactly what it has felt like for the parents. My heart goes out to them. But I also know that the doctors at gosh would NEVER give up on a patient without exploring every single avenue. The welfare of the child is their top priority at all times. Gosh prides itself on taking risks/ pushing through boundaries of medicine to give their very sick patients a chance. Whilst I feel desperately sad for Charlie's parents, I'm also sad that outstanding doctors and nurses have been dragged through this. Not to mention the other babies and children in Gosh intensive care every day, every night. There are parents living this experience tonight, and tomorrow and always will be. Charlie Gard's case was unusual. But it isn't unique.

derxa · 29/07/2017 20:59

minx Well said.

Ellie56 · 29/07/2017 21:04

minx which is why GOSH is a world renowned children' hospital.

I imagine the families of other sick children are finding it more peaceful there now.

Dustbunny1900 · 29/07/2017 21:06

as an American I'm not offended died by the anti American sentiment in here because..well, our system sucks. Theres a lot of (justified) mistrust and anger with the healthcare system, judicial system, education system etc here so as an American it was easy for me to believe in the corruption CA was trying to "uncover" or whatever. And at first I thought we were raising money because they couldn't afford to keep his life support on. That's how it was couched on the gofund me, and what I assumed it was, as an American. I was at first very ignorant and took it at face value and I'm pretty ashamed. I was taught critical thinking and there's no excuse, it's just so emotive.

There's great healthcare for the super rich, decent health care for the VERY poor but none for lower middle class. That's what I'm struggling with, I want to go back to work but my babies need access to healthcare that would be ripped away.

Anyways question, Charlie has his own rights like right to privacy so is it ok that parents expose their children to SM and bare their medical history to the general public, since it isn't their medical records or info?

Stoprightnowplease · 29/07/2017 21:22

Me too minxthemanx I feel so upset about them being called murders.

Stoprightnowplease · 29/07/2017 21:22

.*murderers

Lelloteddy · 29/07/2017 21:28

Dust bunny I hope that Charlie's case will set a precedent for future court proceedings and from very early on, ALL parties will have restrictions placed on the medical information that can be shared.

borntobequiet · 29/07/2017 21:30

As an aside to the experimentation/testing topic - if you want to make your Saturday evening that little bit less happy, Google "unethical medical testing in developing countries" or similar.

TinselTwins · 29/07/2017 21:52

Anyways question, Charlie has his own rights like right to privacy so is it ok that parents expose their children to SM and bare their medical history to the general public, since it isn't their medical records or info?

There isn't set of rules, parents make choices for their kids all the time.

MumIsRunningAMarathon · 29/07/2017 21:56

How are the CA bunch taking things?

PanickedMum · 29/07/2017 21:58

I feel the same Minx. I haven't felt up to joining the discussion really as my daughter has been very ill whilst all this has been going on. She's grown up now but unexpectedly found herself facing the consequences of a childhood brain tumour. She had outstanding treatment then, and now again. Whilst I fully understand and empathise with anyone facing the agony of losing a child, I am also desperately sad about the way the dedicated people who were caring for Charlie have been treated. And yes, all those parents who are living through hell right now, peace be with them. It's been horrible, and deeply affecting.

GuiltyPleasure · 29/07/2017 22:09

@MumIsRunningAMarathon; CA are being very supportive. Over 4.5k messages of condolence & I've seen no accusations against GOSH or the court. Thankfully they've pulled together in exactly the right way at this sad time

Stoprightnowplease · 29/07/2017 22:21

I don't think that I am allowed to C&P but there are lots of awful comments about GOSH and the judge.

Ellie56 · 29/07/2017 22:34

"there are lots of awful comments about GOSH and the judge."

All the comments seem to have been taken off the GOSH page. Hardly surprising.

MumIsRunningAMarathon · 29/07/2017 22:34

Oh.... conflicting stories there then!!

I can't view it as I couldn't 'sit on my hands' like. Good MNer, oh no, I tried to reason with them and got myself banned!!Hmm

Starlight2345 · 29/07/2017 22:35

minx I have sat and thought about all those parents sat in PICU at GOSH ,
Wishing the best of health to them all

TinselTwins · 29/07/2017 22:37

There are some awful posts on CA UK from American posters who think they "shouldn't have looked a gift horse in the mouth" re the "citizenship" and "shoulda taken him to the US when they could" and one poster calling Charlie a "lab rat just wanted for dissection" etc

They've not all been supportive since Charlie's passing Sad

Ellie56 · 29/07/2017 22:38

MumIsRunningAMarathon you can't reason with the ignorant and stupid.

PanickedMum · 29/07/2017 22:41

All the comments seem to have been taken off the GOSH page. Hardly surprising

I reported half a dozen this morning. It was disgusting.

lazycrazyhazy · 29/07/2017 22:41

Blueneighbourhood: what a lovely idea about giving a present to the GOSH nurses.

I don't think they'd be allowed to accept. My nurse DD was asked by a patient's parent what she was doing on her day off. She mentioned she'd really like to have a haircut but couldn't afford to (she was NOT hinting) and the parents left money and a card for her at the nurses' station for her hair cut. She couldn't keep it (NHS rules, quite right) and she agreed with them to give it to charity.

They do get lots of ward and individual thank you letters which mean a lot; if anything the volume has increased lately she says, but then on her ward they've had a sad spell so lots of parents saying goodbye to staff they may have known for years. She also said there's been lots of bonding and feeling of unity within the hospital.

When I warned her that I'd read on here about a potential protest group outside she said she thought I was dramatising.

Just to clarify she has had nothing to do with the Charlie case.

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