Charlie Gard 17 re started

[muckypup73]

Ok guys, we have been very lucky to discuss this, please lets not give anyone anything to complain about, Mhq have been more than accomodating.

I'd add that it's no more brutal than for any other parent who requests a palliative transfer for their child's vent to be withdrawn at home or hospice rather than at hospital. The transfer is for the extubation to happen, not for settled care at a new location. That's the heart of this misunderstanding.

Would any team even want to do the transfer and extubation if they thought the parents might try to prevent it?

It would be hugely distressing for the team if they had to go ahead against a background of protest and distress.

I do think ideas if what us reasonable / possible change over time.
It must be remembered that pushing boundaries if what is possible, asking why not often results in changes of practice which can benefit many people.

I remember taking my baby home. I had to provide a level of care that was unheard of, and not allowed. In fact it was felt to be impossible to such an extent that it was not possible to have the consumables via primary care.

Well I did it. I will be forever grateful for being allowed but I so could have been there in the high court.

I think it's important to have these conversations.

Just been over to check out the pistonheads thread and they are analysing our MN discussion! I haven't read every comment but I think they generally approve.

To be fair, most professionals would avoid this case, it could be like walking into a lions den.

Sadly, the supporters will hear the narrative thus:

'Had a chance to be cured and be a normal boy but evil GOSH denied them, then dragged them through the courts till it was too late'

'Evil GOSH denied the poor parents their last wish to take Charlie home to die. How heartless'

They will not read the details or educate themselves as so many are doing on these excellent threads.

Such a very, very sad case, in every possible way. Nothing I can do except set up a regular donation to GOSH to thank the for the incredible work that they do.

Why are the parents requesting 'a week'

Is the aim to pass Charlies birthday?

I really feel so sorry for his parents, they are clearly desperate to have Charlie home so that they can have some precious time with him in familiar surroundings (to them), but it's just not going to happen. I can't imagine how difficult it must be to accept that, when it's the thing they've clung on to all along.

I know that they have wanted to involve the media, but I am finding it increasingly uncomfortable to witness their ongoing and deepening distress and devastation.

I hope that they are able to accept whatever decision is made tomorrow, and that they can find peace in due course, and most of all I hope that Charlie's passing is peaceful, calm and surrounded by love, wherever it happens to be. He's a beautiful little boy and it's so very sad that his short life is coming to an end.

Am signing off for tonight folks, I hope this thread continues to be well-reasoned, calm and measured. Thank you so much to those involved in this type of medical care for all the information provided, and to those parents who have been in similar situations having lost a child, thank you so much for sharing your experiences, I am sure it has helped many of us understand the many complex issues.

The parents are being very very badly admised in this. It is clear they have had no discussion at all with GOSH staff about the practicalities of the various proposed plans.

I strongly suspect that the American tweeting pro-life lawyer, Catherine Wotsit, is behind a lot of this. "No problem, we will just hire doctors and nurses, your parental rights must be respected!"

I also worry about what would happen if he does go to hospice and the time comes to extubate... C and C are not behaving rationally at the moment imo, which is understandable given their ongoing stress. I also worry about potential impact on other patients in the hospice.
In addition Paediatric hospice spaces are in really, really short supply, we can't allow another place being blocked for months on end while the parents come up with more arguments about why it's not time yet

I wrote at length on the previous thread about my experience at a hospice when a dearly loved close family member was in their care. I realised later that my post may have come across as being about me, I didn't intend it that way. I intended to make these points quoted here. The hospice was a peaceful haven for me and for my relative, and in addition to the points above I have concerns that if Charlie does go to a hospice this may lead to disruption for current patients and their families. Also for the hospice staff.
I don't know if the name of the hospice could be realistically kept out of the media and it would be awful for it to become part of this circus.

I remember taking my baby home. I had to provide a level of care that was unheard of, and not allowed.

But the problem is that Charlie's care can only be provided by intensive care professionals, his parents cannot do it.

How do you suggest him receiving ITU home at home can happen? Do you think that the NHS should fund 24/7 specialist ITU care and equipment to be based in their home for a week and also put those staff in an extremely vulnerable and potentially dangerous situation?

I agree that boundaries can be pushed, things should be questioned to instigate change etc but asking for and expecting an ITU scenario to be set up in someone's living room is just nonsense.

If Charlie is allowed to go to a hospice or even home with doctors that have volunteered to accompany them, who will decide the exact time to remove the life support ? I just can't see a doctor who is accepting payment from the parents, going against their wishes if they decide they need more time.

Writerwannabe, I think that the point about the brutality just indicates the extent to which Charlie's parents are now so trapped that they are lashing out almost at random: if relations have broken down so badly with the hospital, then a hospice team who they don't know would surely be better. It's absolutely tragic that they have fixated on the one option that was never going to be possible.

I cant blame them for wanting to at least see his first birthday. From a purely emotional point of view I can see why they would want to do that.

Unfortunately I just dont see how it can be done, or at least how it can be done if they insist on removing him from hospital.

I was thinking about the Fail reporting of the case and I wonder if its because their demographic tends to be readers who are older and from the more stoic "These things happen, its tragic but you have to make the best of it" generations.

Just catching up on this thread, missed most of the last one.

Does anybody know, were the parents originally expecting GOSH to provide staff at home with them for the week? They clearly requested they take him home, but now CY is appealing for doctors to help. Who did they think was going to do the care when they went into court to say they wanted it? Or had they not thought that far ahead? It just seems the height of chutzpah if they were expecting GOSH to do it (if I can say that without being deleted!)

Chris Gard has just posted a screen shot in CA. It's images of some hate mail they have received. It's pretty shocking.

DH has just pointed out very bluntly that it is much more likely to be the hospital as it is easier for the police to attend and get access is necessary.

I've not posted often but follow all threads.
The mix of ITU and palliative care which would allow Charlie a peaceful and managed death cannot be achieved at home, given his current level of interventions, drugs and care. Once there's tubes, there's trouble and anyone who's experienced this will realise what it means.
Extubating is distressing for all involved, and that's not considering the next logical steps. I'd want the best anaesthetic consultant available when that happens, and to be able to call on them with a moments notice either way. That can't happen realistically in a home setting. Anaesthetists pretty much run most ICUs, something I learned the hard way. BUT for good reason. Most patients are intubated and sedated, and the anaesthetist is in charge of some pretty hardcore drugs. Apologies if I'm preaching to the converted but it's worth mentioning given the request to move Charlie to a home setting.

I hope his parents take up the offer of the hospice bed, and can manage to make some positive memories away from GOSH with him, before it's too late.
I am in awe of the judge, his humanity, legalese and kindness all wrapped up in a bubble of frustration and patience.

This is such a sad story, but I think of all the families out there tonight who will be having their last days with their DCs and there will be no special requests. I would like think the medical teams know best in these circumstances.

Can someone pm me the link to the pistonhead thing that is mentioned.

I think (and perhaps understandably) they want to experience what they never had... a normal life with their normal little boy, living a quiet life and doing everyday things. Sadly, he was born with mitochondrial disease and none of that was ever going to happen - experimental treatment or not.

I think his birthday is significant and might be driving some of the delays. But if he were to come home and live out his birthday (and I don't think it could possibly happen), will there be more delays, more 'experts', court cases and doctors willing to treat him? And for what, ultimately?

Who did they think was going to do the care when they went into court to say they wanted it?

I don't think they'd thought about it all.

In GOSH's statement this afternoon following the Court proceedings I'm pretty sure they said that despite C&C requesting a week at home with Charlie they hadn't provided any answers or suggestions about how they thought it could be done. Or words to that effect.

I wouldnt be surprised if some of that hatemail is from previous supporters. Many of us commented on here that it wouldnt take much for the CA nutters to turn on C&C.......

Here's the pistonheads link. Not sure why we wouldn't be allowed to have it linked here? Delete if it's not ok.

www.pistonheads.com/gassing/topic.asp?h=0&f=205&t=1682383&p=21