Charlie gard case thread 2

[Fancythat69]

The last thread is full, Not sure if another has been started.

Theres a CA rally at GOSH planned for tomorrow. What are these people on?

Considering the wording of the ECHR judgement that certainly was focused on every day spent deliberating over this was a day of stress for the parents and more importantly another day of potentially unjustified suffering for Charlie, I hope very much that the judge deals with this today and without allowing the newly involved American pro lifers/lawyers to make this an even bigger circus. To let this run for another week isn't in anyone's interests.

The legal arguments about the rights of the child vs parental rights haven't changed, have they?

The only new thing the judge has to consider is this supposed new evidence about the effectiveness of the proposed treatment.

And even if he accepts evidence that the treatment might be effective, he also has to consider whether it would benefit Charlie at all, given the damage he has already suffered.

Agree with meddle, from what we can see and have been told, Charlie appears stable enough for transfer - he certainly doesn't have a lot of the additional support some ITU patients require to keep them alive (multiple drug lines, dialysis equipment, drains, tubes inserted into arteries to monitor heart and lung function etc). Regarding the ventilator - he doesn't necessarily need oxygen, it depends on the oxygen levels in his blood whether he just requires air or a mixture of oxygen and air. However, as meddle says, it still requires a mobile ITU and very careful planning.

If anyone wants to listen to the Radio 4 interview here's the link, strts around 1:49 mins in.
www.bbc.co.uk/programmes/b08x4rdv

Connie is absoluely convinced of her truth and is, therefore, very convincing. Anyone listening to her without having read the GOSH statements and Judgement would also probably believe her truth.

I actually came across my first CA person in RL today. They were adamant that the parents know best and GOSH are lying 'to the bed'
I was calm ( inside raging!) and asked did they really think GOSH would spend thousands of pounds, put the parents not to mention their own staff through the emotional upheaval of court etc and potentially risk damage to their own reputation if they didn't truly believe this was a hopeless case.
The person in question shrugged and said why would the parents lie! I was incredulous! When I replied that maybe their own love and unbelievable grief meant they wanted desperately to believe things were ok, they had no answer.
My own professional life had brought me regularly into contact with parents of children with extreme life limiting conditions. I have seen for myself how powerfully wanting something to be true makes people believe it is.

I'm so angry that this poor baby is still suffering and looks like he'll be suffering for at least another week.

Why wasn't he allowed to slip away peacefully the other week? Charlie looks so uncomfortable and his poor little swollen body looks so painful. At this rate, the poor little mite is going to slip away with his parents being interviewed outside the hospital... which of course will somehow be goshs fault.

Enough is enough. It's gone too far, nobody should be forced to live like that.

If, and I really don't believe it will happen, the court decides that Charlie is given the medication at GOSH, I wonder what the situation would be.
If the doctors there believe that it is not in Charlie's best interests then I do not see that they can be made to give it.

This case both infuriates and saddens me.

My heart ached for the parents initially, caught in a nightmare, trying to do everything possible for their precious baby.

But they've gone beyond rational now - not just blind optimism but manipulating the truth as set out in the judgements, and claiming untrue and potentially damaging things. They've played the public and the media like a fiddle and I believe they have totally lost sight of their child's needs.

I find it astounding that the first few court judgments reported that the parents agreed that Charlie had no quality of life and no chance of a normal life yet persisted with their claims that he shouldn't have his life support turned off. I can only imagine how difficult it must be for the doctors and nurses to be working with him, knowing that everything they do for him is causing him suffering and prolonging his non-life, yet being caught in this awful battle of wills with the parents, who are so utterly deluded and confrontational.

My DD was in NICU at the same time as Charlotte Wyatt - that was incredibly difficult for everyone involved and I can only imagine that this is a million times worse for the staff.

I can't imagine how hideous the outcome of this is going to be. Either way is a lose-lose situation - either Charlie's life support will be switched off against the wishes of his parents and they may even have to be removed from the room so they can't be there for his final moments. Or his condition will become so totally unsustainable his parents will HAVE to accept that nothing more can be done, which given their total refusal to accept how bad things are for him will be catastrophic for their mental health IMO and probably lead to a horrendous situation in the PICU. Not the quiet, dignified peaceful death that Charlie deserves.

That should have be 'lying to get the bed'

!!!!

The parents and the rest of CA do not seem to have grasped the fact that in law parents have responsibilities, not "rights", and no amount of banging on about their "rights" will make a shred of difference. Charlie has rights of his own, which the court will undoubtedly uphold.

As for being allowed to travel to America, there are probably strong medical reasons why that would not be possible - the same ones that prevented him from being allowed to go home the other week.

Meddie can you answer the question posed by deux re the logistics of air transfer?
I received an email from CitizenGo this morning claiming that it was their petition handed in at GOSH by the family. As far as I know the signatories could have come from anywhere and the 'facts' to persuade people to sign are not facts at all. They clearly believe that switching of a life support system is murder, whereas without the life support system the child would surely have died. They hope to increase to 500,000 signatures and will present the petition to Theresa May tomorrow.
Someone much earlier said that if Charlie's parents were people of faith, as has been suggested then wouldn't it be better to let him go to heaven. I wonder if the appeal to the Pope and the involvement of the pastor are not just an attempt to get an even higher authority (God) to give them what they want.
Unfortunately Christians (and I am one) have to accept what the Bible says 'Your ways are not my ways'. Sometimes we don't get what we want.
There is a prayer vigil today at the Royal Courts of Justice, presumably with the hope of the Court letting Charlie go to America.

I think it is telling that there are no recent pictures of the parents holding Charlie. Others here will know more than me about possible reasons why they can't hold him, but it seems to me to indicate a significant level of fragility.

There's a great post upthread that explains how an air transfer would work.

I really hate that it looks like he's going to be made to suffer for at least another week. He needs the right thing to be done now, for him to peacefully slip away in the arms of his parents. I can't imagine the pain they're going through, but there is no miracle cure- they need to accept the inevitable and focus their energy in their boy.

Charlie's parents' lawyers tried to claim to the ECHR that Charlie's best interests ... should not take precedence over his parents. They actually were ok with publically framing it in those terms. That's terrifying

I wasn't aware of this, and agree with you that the very idea is appalling; the precedent it would have set doesn't bear thinking about

While I realise lawyers have to present all kinds of arguments in their clients' interests, I admit I'm surprised they were prepared to go with that one

The point of 'he should have had the treatment in Jan'

The proposed treatment that is going to court today is different tonthat one (unless I'm now totally confused)

As GOSH said in their statement that is had only been sent to them in last couple of days. Either the way it's being done or the actual treatment.

So that's why it needs to go to court as it's different.

I am still not sure of the new court today is even discussing going to America. I think it's about bringing the treatment here? But maybe that's just my understanding.

I think it is possible to become more of an expert in certain aspects of your child's condition than most doctors.

I know more about the finer details of autism in girls than several of the paediatricians we have seen over the years and I've educated several on masking and anxiety to some extent.

However, that does not mean I know more about everything to do with my DD's health. I knew that disrupted sleep was a common symptom of autism but it took a paediatrician to point out the dangers of chronic sleep deprivation in children and to help me understand that medication was appropriate for her.

Charlie's mother may know more about his original condition than the general population of medics but she is lacking in understanding of other basics, like the need for a child to be using his vision in order for it to develop successfully.

Understanding lots of the facts about the mitochondrial depletion syndrome that is causing his deterioration does not mean that the parents understand more than the health care professionals about how he will deteriorate, what deterioration could be reversed if he suddenly started to produce healthy cells, how the structure of a baby's brain is determined in part by the stimulation it receives at certain times and a myriad other aspects of his care and treatment.

I think there's now a significant 'Michael Jackson' effect here as the parents surround themselves by people who validate their poor decision-making and reject those who would challenge them.

will present the petition to Theresa May tomorrow.

Theresa May can do nothing! A politician cannot interfere in the judicial process. And Theresa May certainly knows that.

In fact all MPs seem to be showing some sense on this issue, or their advisers are keeping them on a tight leash; other than TM's response in PMQs and JC's carefully worded statement, I don't think any MP has said anything, have they?

Also I'm so shocked by the 'enjoys watching an ipad'

He has been medically diagnosed as being blind and deaf.

Again I don't think those words are coming from Connie. I think she has upped her 'he isn't in pain or suffering' to 'he can make a full recovery / enjoys the iPad' in the last few days to get people inside. And probably comes via the pro life pastor idiots.

I remember reading a quote somewhere that said something like

"Art reflects life,and life reflects art, but the internet reflects the world and the world is beginning to reflect the internet"

which I think applies here.

It's very concerning that mob mentality with apparently no fear of consequence can say terrible, hurtful things about trained HCPs who themselves would undoubtedly love to wave a magic wand for ALL of their patients.

The medical ethics are quite interesting in terms of value of life lived and (if 'new evidence' to be believed) 10% chance is probably not so outlandish a chance a medication would not be given (for example clopidogrel and statin data on prevention of heart attacks, has a surprisingly low success rate in CV incidence) and this medicine has been given to humans just not with the specific variant.

That being said, Charlie is obviously very unwell and sometimes at end of life the most ethical thing to do is to discontinue some medications, start new ones to manage symptoms and allow the natural process of dying to happen in the least medicalised way possible.

I feel desperately sorry for Charlie and his parents. I can't imagine their pain and heartbreak. Grief has a way of blinding everything but hope sometimes. I really don't think it has helped that very powerful people have waded into this, it has undermined medical expertise and judicial process. It may have been kindly meant but was actually rather cruel and has prolonged suffering of Charlie and his parents too.

Very sad all round.

The really bewildering thing is that the High Court, Supreme Court and ECHR have all ruled that GOSH can withdraw life support and I am only assuming that hasn't actually happened as the parents haven't given consent. So in theory, at today's hearing the Judge can rule that the proposed treatment could happen at GOSH; Charlie can be moved elsewhere for treatment ie the US; or Charlie can have palliative care at GOSH and is made a ward of court for it to happen. I can't really see what other options are out there.

I don't think Charlie should ever have gone to America. Not least because the fact the doctor over there even said he would treat him suggests his ethics are not what they should be.

We don't make decisions on behalf of very vulnerable patients in this country so that other people can 'feel like they've done everything' or to get hospitals off the hook. The interests of the patient are the first and only principle. GOSH was prepared to go all the way on this case because they felt they had no other ethical choice. Charlie could and WOULD have had the treatment in the UK if it had been the right thing for him, but it wasn't. America really has nothing to do with this, other than having a profit-oriented culture where doctors can overtreat a lot more easily.

The evidence suggests that Charlie is too sick to go anywhere. Even moving him within GOSH would be difficult and quite possibly traumatic. Him going to America or even another hospital at this stage is just as much fantasy as the idea that he 'enjoys' watching the ipad.

I really do feel for Chris Gard and Connie Yates, despite the increasingly disturbing nature of the depths of their delusion. Do I hope I would act differently? ...Yes. But until I am tested (and I hope never to be tested like this), I have no idea if thats true, and no business sitting in judgement.

Some of the other people who have latched onto this case, though, have no such excuse, and I feel fine judging them.

Did I just read that right, Charlotte Wyatt's father has waded in to show support for Charlie's Army?!

He's got a fucking nerve. He fought to keep a profoundly disabled girl who was in constant pain alive, and then when she survived he gave her up to Foster Care.
How dare he jump on the bandwagon

You write a great deal of sense, Goldmantra

Something which gets forgotten in "who's an expert in mitochondrial diseases and who isn't" is that specialists don't train just in one specific field ... they first spend years in more widespread learning and then specialise

So as you rightly said, research into just one illness can never replace the skills of those who can understand all aspects of a patient's health

Lightlovelife. Any transfer of an ICU patient involves moving the ICU with them. Thats what the logistical considerations are. You have to be able to cover every eventuality in flight as you will only have what you take with you. Theres no running to a stock cupboard or getting another doctor if anything goes wrong. Also altitude and pressure effect oxygenation and patients condition so you need drugs and equipment to deal with any potential deterioration
So you need all the equipment they are already using plus a spare set in case of mechanical failure or the flight being delayed or prolonged. You need all the oxygen and air tanks they require, plus more
You need access to compatible power supplies, you basically have to imagine the worse case scenarios and have any equipment or drugs available to deal with it.

I also would like to see a video of Charlie "sat watching and enjoying his iPad".

Such compelling evidence would surely be in the public domain by now, given everything else that the family have willingly released.