Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

I don't know the psychological effects other than it must be devastating for the parents at this moment. And their grief is being hijacked by the media.

They surely must have been told that this was not their fault. How were they possibly to know?

Elendon I'm sure I read somewhere that one of the symptoms was he couldn't raise his head. My son was lifting his from birth (ah the joys of delivering at 42+3). I'm sure if Charlie had been a little further aling tge development path when be began to decline it would be easier for his family to see it but because poor wee Charlie never got to do what most babies do they can convince themselves he's not that ill if he had sat and rolled and cooed before he declined it might be harder to convince themselves that he was OK but they are comparing an 11 month old to a newborn and not seeing much difference but if he was a "normal little boy" they should be seeing huge changes.

With regards to transfer home for withdrawal of ventilation - it is possible to move sick kids home or to a local hospice if it's the parents wishes, it's something that I have been involved in and a lot of parents and families find comfort in being at home with their little one.

However, it does come with logistical challenges and all involved need to be in agreement with the plan of care, with acceptance from the parents that their child will die (usually quickly) after life support is removed. I suspect this is one of the biggest factors in this case - that parents still need to accept and agree with a plan for withdrawal and work with the MDT for Charlies benefit. Threats made against staff and the suggestion that HCPs won't be allowed into the house certainly do them no favours.

Transporting a sick child takes time and skill - most NICU and PICUs in the UK work with a neonatal or paediatric transport service. In London, this is CATS - a team that works independently of the local unit and aren't based at GOSH. The staff that make up the CATS team either work full-time for CATS or are PICU staff who rotate onto transport. The CATS team operate an acute (emergency) retrieval service and a non-urgent (repatriation) service - they are an incredibly busy team. They would need full compliance from the parents with regards to moving and a time-frame as they will have other jobs (as brutal as that sounds) to complete that day. Or they have to put on a specific team just for Charlie.

The equipment needed can be cumbersome - iirc, they live in a flat. If the flat does not have lift access, the logistics get more difficult. You cannot wheel the equipment straight into the house - you would have to hand ventilate Charlie and carry the extra bits needed.

Then there is the media frenzy and SM outpouring that could compromise the transfer - I wouldn't particularly want to transfer a baby surrounded by an audience shouting "justice for Charlie" and waving their blue balloons. His journey home would be closely watched, potentially requiring Police involvement - another logistic and extra resources needed.

I do wonder if the involvement of yet another party in withdrawal of care for Charlie adds to the legal complications regarding this case. There is strict paperwork and procedures to follow for the transfer for palliative care and plans for DNAR need to be watertight if he was to be moved elsewhere for withdrawal of care.

Most importantly is Charlie in all of this - what is best for him? All of the above can (and have been) overcome to allow him to return home, but until the parents fully accept and agree, it cannot progress forward.

elendon Grief and guilt aren't rational though, are they?

I read a comment online a few days ago that claimed they weren't allowed to take Charlie home originally as they refused to consent to a DNR. I don't know how true it is, but it would tie in to the link earlier in the thread where GOSH were seeking a clear order from the judge and the parents were threatening criminal proceedings.

GrumbleBumble I too know the 'joys' of late deliveries (plus 10 and 16 days). Can't say they lifted their heads. The plus 16 days slept through the night though. At 8 weeks, they are giving the first smile, an interaction you revel in. Plus by then the head is so much steadier. Legs and arms are filling out.

I'm sorry but it must be awful for the parents. I have no understanding of what they are going through right now.

I would be very worried that they would seem to agree to a plan in order to begin the move, then once they think there's no going back would rescind their consent to whatever aspects they didn't agree with. So whatever happens I guess from GOSH's point of view it would be safer if any plan gets 'signed off' by the court if possible.

I can only hope that what seems to be Connie's activity on FB, etc, is actually someone else posting on her behalf ... the idea that she might still be on there rather than giving all her attention to Charlie doesn't bear thinking about

And let's also hope that the reported event at the court this afternoon really is just "tidying up", sorting out costs and so on ...

Justice Francis is on the High Court schedule as holding an open hearing for CG at 2pm.

I suppose the worry is that if they allowed Charlie to go home his parents may act compliantly but then when the moment comes to turn off the ventilator who knows what might happen? They might start shouting, refusing, getting aggressive towards the medical staff who are there, you just never know, and who is there to protect the staff? At least in a hospital there is security on hand if needed.

writerwannabe - this is why I referred to Police needing to be present if he was transferred home. It's impossible to transfer him home without the parents being 100% compliant, accepting and so-operating with the staff.

twitter.com/SkyNewsBreak/status/889817337934884864

I am genuinely shocked by the conduct of Hirano in this whole case. It seems like he was offering totally false hope, without having read any of the notes on the poor child's case. The GOSH statement on his conduct is scathing.

inews.co.uk/essentials/news/health/charlie-gard-michio-hirano-anger-financial-interest-treatment/

Link here to the GOSH site, where there is a PDF of their position.

angel - and then it would hardly be a private affair would it. You'd like to think the media/public/CA would allow them space if Charlie was allowed to be taken home to die in peace but I can't see it happening.

As much as I can see why parents would want him at home I imagine it would be a much more private affair for them if his passing happened in the hospital where they could just be together as a family.

TheNightman absolutely agree with your comments on legal aid. Am also a solicitor.

I found it interesting that GOSH went back to court to request that the Judge's directions from April (i.e. that life sustaining treatment should be withdraw) should be made into an order, but actually at yesterday's hearing the judge simply re-confirmed his directions and explicitly stated that no order would be made.

Am still catching up on the thread but have just seen that Charlie's parents are going back to court to request permission that he be allowed to die at home. My heart breaks for them, it really does.

We all have a lot of empathy for the parents- it must be heartbreaking for them, they have had to be very brave. They are ultimately the only ones who are going to lose their previous baby boy & have to live with it for the rest of their life.
What we find difficult to understand though, is after what seemed like a kind of truce 'everyone agrees now that it's no longer in Charlie's best interest to be kept on life support ' & a what seemed like a genuine request for privacy as they spend their final days with their child, why are they back on SM/ media disagreeing with GOSH's statements & about scans in January etc- they will have lots of Time to do that later.
I also don't understand why CY had to read a 'final statement' in court. My understanding of court procedure is everyone gives statements,do a final plea/ position statement & judge has a last word. If parents decide to blame GOSH for 'inaction' in their final statement , I think GOSH have every right to provide their view in their final statement they released & both parties have to leave it at that- for now & try to concentrate on providing best care for that baby boy in the last hours of his life.
I am sure there's time for a court case later & they can dispute it then.

I fear that if he were to be taken home, whatever assurances the parents gave, it would become public knowledge and a circus would ensue.

A family member or 'supporter' would mention it online. The press are no doubt staking out the home, or if they are not, a neighbour would tip them off. A police escort would very likely be needed, to clear a way through traffic if nothing else, and that would be seen and followed.

Even if the judge ordered a media blackout, he couldn't order the parents not to tell family and 'friends' such as pastaman and his minions, and then they'd no doubt be in attendance..

I don't see how it could be done with dignity and privacy, or with any benefit to Charlie.

news.sky.com/story/charlie-gards-parents-head-back-to-court-10961299
Sky are confirming it is to do with taking charlie home to die.

Fuxake.

These threads are so incredibly helpful, they've really been a credit to MN with how mature the discussion has been. It's good that we can talk about medicine, law and psychology all on the same thread.

It's really made me think how logic is so needed in this society, someone said on a previous thread how we live in an age of emotions and instant gratification. I think as well, we're so far removed from death, it sounds so basic to say it like this, but it seems like from the rise of the internet people have literally been living in virtual reality. When nature intervenes, people can't cope with it - we live in a world where any information we want is available at the touch of a button, we expect medicine to always have an answer, and when it doesn't there is anger and disbelief, plus the shock of having to be brought back to 'the real world'.

It's made me talk to my son about critical thinking, I've talked to him about this case and he was shocked that parents don't have ultimate say over their children's treatment always. I explained in detail why though. And we talked about GOSH and how amazing it is. I can't how confusing it must have been for the children at the court yesterday hearing their mothers chanting that the NHS kills, that doctors are murderers and not to be trusted. What good can come of that??

Yesterday in court has made me angry - I don't understand why GOSH, or their lawyer actually, wasn't allowed to say anything. Does anyone know? Sorry if I've missed an explanation. The only thing I can imagine is that it would seem cruel to let Connie speak, and then come out with a load of "Yes but you're wrong there because...". But that's exactly what does need to happen at some point as there's a lot of false accusations flying around now that some people will believe!

I don't think anyone knows why the court case this afternoon is do they? We are presuming it's to do with where Charlie dies but we don't know.

Who is too say that they wont try and take Charlie to America?

Ah see I should have refreshed first.

this may sound very blunt, so forgive me: am I right in thniking that the minute ventilation is withdrawn he will die? on the basis that he's been on it for so long, has no muscle tone etc. in which case I do think the best option is to find a quiet room within GOSH and do it there, without the trauma to everyone (particularly Charlie) that would be involved in attempting a transfer.

Muckypup what would be the benefit of taking Charlie to the US? There is now no one there who would treat him?