Charlie Gard Case 5

[LovelyBath77]

A new thread to follow on from the others about this case.

Midnight - has anyone asked them for their medical qualifications in being able to assertian all of that?

Sluttybartfast

Jennifer Worth, the writer of the Call the Midwife books worked in end of life care after leaving midwifery and wrote an interesting book about her experience of caring for people at the end of life. She criticised the idea of life at any cost, I think at least partly because of what she had seen.

After her death from cancer, her daughters wrote that she had firm ideas about how she was going to die and what was going to happen because of what she had witnessed.

Medicine is marvellous and making great strides all the time but I think people don't see death like they used to and they are bewildered when sometimes medicine can't help.

Sirzy of course not. You don't need medical qualifications on CA! Every member is an armchair medical professional. Apparently.

I know a little bit about head circumference. So my son was born v prematurely and while he was lucky and had a short NICU/SCBU stay he did have a Grade 1 IVH or intraventricular haemorrhage. Also known as a brain bleed. When he was younger his head was noticeably bigger than the rest of him and they kept a close watch on head circumference because one that is growing too fast could indicate hydrocephalus. So his head circumference was measured twice a week. It is for this reason that I know that a head circumference growth of 2 cm in a week would be beyond alarming.
So either his head hasn't grown which is concerning for different reasons or it has grown far too rapidly which then presents a different set of concerns.

As any NICU/PICU parent will know the parents will have access to all this basic information every day during the ward rounds. They will know what medication he is on, how much he weighs, his head circumference and anything else that is being planned. There is no need for any guesswork in this regard.

Tartan That is shameful.

I seem to recall the CA looking into other people's backgrounds and shaming them (such as Gollop having defended euthanasia) so I definitely support people contacting S's employers and pointing out such comments. Well done!

Puzzled I read the post at 00.08 and thought saying it was posted by a 'neuroscientist was cynicism*

Ah, I see - looks like that one went straight over my head

Yamayo I also take your point about there probably being no evidence. It seems to that there can't be, since this supposed wonder drug has never been tested on living beings, never mind one with Charlie's condition. I'm no expert - certainly no lawyer - but I can't see how "believing" that something "might work" constitutes evidence ... and that's without the issue around whether it's new or not

"This dump of a hospital needs closing down" the stupidly of CA I mean really! GOSH is helping and saving so many children every day and they have to put up with this utter nonsense.

I'm sorry but poor Charlie is living on a machine and most adults get to say no I don't want that. I think his parents are too very sad people who cannot say goodbye and i feel so sorry for them but the storm they have created at GOSH it's disgusting.

WornOut On a previous thread I said that I'm expecting similar hysteria over poor Charlie's passing from the morons as was seen with Diana so this does not surprise me

Just jumping on to say I have a lovely friend working at GOSH (mainly in picu) and they are being forwarded all the lovely messages from FB...they are making a difference in what is a fucking shit time for them...many members of staff in the hospital who have "works at GOSH" on FB have been sent some awful messages by CA members and have been verbally abused leaving work...please send them, they are making a difference

I think I posted on a different thread but I have seen 3 babies on ventilators where their parents made the agonising decision to turn those ventilators off. What will always stay with me is the enormous DIGNITY of those parents in the face of the inevitable. All of them did ask if anything else could be done (and one of them had, slightly, been failed by the midwifery team leading to a v complicated delivery for one of the twins and eventually his death...but she too knew that it wasn't a mistake per se)...and the doctors and nurses did EVERYTHING they could for them. Bent over backwards to accede to any last requests they may have had. I found one doctor praying with the family. One nurse stayed well beyond her shift to help them through the last hours. In another instance I remember this utterly utterly tired junior doctor who had to go home and bake her daughter's birthday cake, not going home but instead sitting next to the incubator of the baby, just with her hand on the mother's back.

There will be sicker and equally desperate parents in GOSH today. People being given devastating news. What has happened this month is a real travesty and I hope there is some excellent counselling available for the staff involved.

Great light glad that ICO was helpful.
They have a public page for data breach concerns www.ico.org.uk/concerns
If my email address was included in a pro life petition making me a signatory without my consent I would be livid, great you are reporting it.
The anti choice guys seem to be surprisingly comfortable taking the moral low ground in their tactics.

TartanDMs. Thanks so much for reporting the NHS employee on the CA.

Please those who can, check the profiles of these posters, if any of them have affiliations with a named NHS organisation please please report with screenshots.

Also thanks for the C&P Times article.

And another thing I almost feel sorry for the Daily Mail. They don't know how to pitch their articles - I feel that they would love to run much more NHS hate, David and Goliath type pieces. But the comments are overwhelmingly supportive of GOSH and our systems. Some of the comments are very good indeed and similar to what is being posted on here.

Of course they feel rushed in having to provide the new evidence by today. Because there isn't any. There never was. All they had were rehashed commentaries on old research that has no real validity in Charlie's situation. They knew that, they were just hoping to buy themselves another fortnight to continue to stoke the hysterical fires around Trump and the Pope and to try and come up with ever less likely rescue plans. They know they don't have hard evidence. If they did they would have submitted it on Monday. They would have memorised it and be speaking it verbatim to every news outlet in the country. So would their lawyer. Their lawyer, GOSH's lawyer, Charlie's lawyer and the Judge all know this is pointless. The Judge will uphold the original ruling tomorrow not just because the law requires him to but because it is the kindest thing to do for that poor baby now and I hope GOSH action his decision quickly, for Charlie's sake. And I really really hope someone somewhere in their circus starts to cut through the lies that are doing so much damage and begins to prepare his parents for the reality they will have to face.

Bloody Gove and his 'had enough of experts' comments. I think the NYT summed it up well with their cartoon.

Among all the other misinformation being bandied about in this situation, is the misrepresentation of the Christian position. The fundamentalist American pastor is not representative. The classic, mainstream Christian ethical view is that life should not be maintained at all costs. It is wrong to cling to the last shreds of life or to insist on treatment which is only burdensome to the patient.

I have seen this view in action in relation to my father. He was a theologian in a very conservative denomination and personally his faith was his whole life.
At the end of his life he developed a type of dementia which often affects physically functioning more rapidly than cognitive functioning. He was in a nursing home as his physical disabilities were too severe for my mother to cope with at home. Although he did have considerable cognitive impairment, he always knew people and could carry on a conversation. His liver, heart etc were functioning well and he could eat reasonably well too.

He then developed a chest infection and after a day or two became unable to swallow oral antibiotics. There was an option to transfer him to hospital for more aggressive treatment. I don't know what his chance of survival was but I am fairly sure it was greater than 10%. My mother decided that she was not going to put him through that and he died gently in the next few days. For her the comfort of believing that he was in heaven and that she would see him in time was very great although she did also grieve deeply- this happened weeks before their golden wedding.
I read the Pope's tweet as being generally supportive and sympathetic but not agreeing with further treatment regardless.
Unfortunately the parents will probably not be able to find comfort now from the chaplaincy team at GOSH or elsewhere having been fed the extremist view.

Can I just add thinking. of you lonely mummy.

Surely the best thing to do would be to get through tomorrow, decide a date when the poor little mite's machines are removed and allow his parents to sit with him quietly. Without announcing it? I shouldn't imagine the parents would be able to not mention it though. They seem determined to keep him suffering. ( As I do believe he is)

Ugh, sorry. The caption has been cut off rendering the whole cartoon useless. Trying again.

good post vnus i agree was just stalling for time

Great article. Thanks for posting @goodbyestranger

I feel certain that the pastor and his lawyer were behind the threat of judicial review to GOSH.

It's backfired spectacularly, GOSH and Mr Justice Francis have played a blinder.

Were they trying to get to his first birthday? My birthday is the same day but it is still weeks away, too long to keep him suffering.

Last point. My son spent 8 hours on a ventilator. He was just over 900 gms when he was placed on it. He dislodged it three times in theatre because he hated it so much and self extubated 8 hours later. I don't understand at all how she can argue he is not in any pain. My children are in pain when they have a sore throat/fever/chickenpox. I have had to hold my baby down while they cannulated him and he has gone red with pain and has had tears streaming down his tiny face. This is an actually sick kid on a ventilator subject to various invasive procedures. I don't understand why they think he isn't in pain.

The parents wont be able to just sit there quietly. They new supporters will encourage them to never give up. Therefore it is possible the ventilator will have to be switched off while they are prevented from entering the room.

I imagine it's all too easy to kid yourself than an immobile baby unable to express himself is serenely resting rather than potentially in pain they are unable to communicate, especially when it is your child.

I just reported two posts, one saying that Gollop should be hit in the face and the other saying yes, with a hammer.

Reported as threats of violence.