Charlie Gard Case 4

[LovelyBath77]

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

I'm sad to say that there is enough tissue around the skull to create quite a lot of swelling: sometimes happens if a patient is really unwell or in significant head trauma.

As for scientific research, it'd be sooo good if peer review meant someone else tried to verify/repeat the experiment. I've done a bit of peer reviewing and it involved, well, reviewing the written paper. And providing a bit of opinion about it.

I'm so sad for everyone involved in this case. It's genuinely heartbreaking to read and hear about.

My understanding is that the parents have convinced themselves that he isn't actually that ill, that GOSH are exaggerating it all. And so that is why they don't want the machines turned off.

As he might get better, and the treatment in America (given here or there) will give him a 10% chance of a full recovery.

Anyone else who has read the fact from the hospital can't get their heads around how the conclusion of he isn't that ill could be arrived at. But I assume if you've enough people (CA, Pastors etc) saying to you, don't believe the doctors and then you feel that he is reacting to tickles and your voice and can actually open his eyes and see you this then adds to the theory he isn't that sick. And so that is why the parents seem to be on another planet to the reality.

They are fighting so hard as they don't think he is as ill, in pain or suffering as the facts clearly state. And the terrible thing for them is they really believe this, hence their current state of mind. Of not understanding how GOSH can behave like this.

Until they somehow get their heads around how ill he is and come out of that denial. From reading and thinking about it, I think that is how we've got here. Not that the parents are wanting to be cruel, or want him to suffer.

But if there is no one around them they trust telling them they are wrong and supporting them, I am not sure with all the crowing fromCA how that will happen until it is too late for them to spend their last moments with him :(

The parents have said that they want to take Charlie to the US because "that's where the experts in Charlie's condition are" and that it's purely because GOSH are not experts. Given that there are only 16 known cases in the entire world of Charlie's condition, they're unlikely to find anyone with more expertise than the GOSH mito experts.

I feel desperately sorry for them, but I really do think they have taken leave of their senses and are operating purely in an instinctive "lash out at any threat" way.

Rabbit can you screenshot it and send it to the Met Police? That is harassment.

Poor baby.

Anyone who thinks a child doesn't suffer in NICU/PICU is delusional.

My DS was in NICU for several months (very premature). It was awful to see him suffer. NG tubes forced down, scars from trying to get blood out for tests, infected lines, etc - I wouldn't wish it on anyone.

Why any loving parent would choose to prolong his suffering is beyond me - his parents have sadly lost all perspective & rational thought.

I don't think CA have grasped the concept that the courts have been appointed to act in Charlie's interests. In their minds, it's all parents v. doctors, David & Goliath.

Poor wee soul.

Someone on CA saying it's time to get the law involved. Wtf do they think this whole thing has been about?!

Does anyone know what this is alluding to (in the statement from GOSH)

It said staff had been forced to take steps contrary to Charlie’s welfare.

Maryz, I doubt it would get through the moderation process to be posted, and it would just be explained as an example of how GOSH have lied to everyone.

It was sad yesterday to see the confusion for some on CA when the family lawyer said the parents had not made the 10% claim.

I saw some footage of the parents last night and as other posters have said, Connie looks so thin and unwell. I do wonder how she will cope when the inevitable happens.

I have looked after children who have oedema as a result of their medical condition and they are all on pain medication because they tell us how uncomfortable and sore it is.

At University we had to do a module specifically on pain in children and one of the first lessons we were taught was just because a baby/infant can't verbalise they're in pain it obviously doesn't mean they aren't and the physiological 'clues' to pain were discussed. I.e facial expressions, grimaces, limb movements, response when handled, heart rates, respiratory rates and rhythms etc, all things which can't be assessed in Charlie's case because he is unable to move and the ventilator controls his breathing.

The thought of him lying in that bed, in pain but not being able to display it or communicate it in any way is heartbreaking so I was so, so relieved to read he was indeed on Morphine.

When the parents used to say they know he isn't in pain it just broke my heart.

Mind you, it's surprising how many parents I come across at work (Children's Nurse) who won't allow us to give even basic analgesia to their children when it's clear they need it.

If his organs are indeed failing then I don't see how Charlie can go on much longer as there is only so much the doctors can do.

What those poor staff and doctors must be going through is heartbreaking, they must feel absolutely worn down, upset and stressed. I bet they're scared to leave work of a night too due to all the death threats against them. The whole thing is just awful.

I actually feel frightened about the outcome of this and what the backlash will be when Charlie eventually dies. I can't see the parents or the CA moving on from it and I think all this hate and vitriol is just the lead up to something worse.

I hope GOSH know that they have a lot of supporters and I really hope there are no negative effects to them as a Trust as a result of being caught up in all this mess.

The mob is being treated with kid gloves. They and their deluded followers should be held in contempt of court for trying to influence the decisions of the court. Or incitement to hatred or something.

The judge is very dignified and compassionate. He needs the wisdom of Solomon for this case even without all the associated mayhem.

It has gone way too dangerous and sinister.

But maybe staying quiet is giving the mob enough rope or something.

I thought the 'steps contrary to Charlie's welfare' meant having to keep him going and not be able to enforce the court order.

My interpretation of the latest hearing is that GOSH applied for it to, in effect, call Charlie's parents bluff.

Effectively they said "We have new evidence, you can't switch off his life support." So GOSH have said "Ok, we'll ask the Judge to look at this evidence and let him decide what we should do."

They know full well that the evidence is either not new or, at best, unverified and therefore too risky (and unethical) to give to Charlie. But by taking it back to the Judge they cannot be accused of not considering the "evidence".

I think GOSH have played a blinder by taking this back to court.

I think they knew that this "new evidence" wasn't new evidence at all. They will have known about this all along, they'll have known about the chances, known the 10% doesn't exist, known that it's all been hot air.

Yesterday showed that the parent's lawyer was completely unprepared, they wanted an extra two weeks to gather the evidence they are supposed to already have. They showed that Charlie is in that much pain he's on Morphine when for months Connie has been saying he's in no pain.

It hasn't silenced all the the Huns but it made some people prick their ears up.

There is a lovely family event being held in Richmond this Saturday to raise funds for GOSH. Its a ticketed family event and looks like a lot fun, all in aid of GOSH.

PM me for details, I have a photo of the flyer that I can send, for clarity I am not part of the event in any way, I have seen it advertised locally and am thinking of going along to support GOSH.

the whole situation is tragic.
for Charlie, for GOSH hard working dedicated incredible staff
for the NHS (am surprised no-one's talking about the cost of this)

i don't blame the parents for holding onto every last shred of hope BUT in these instances they almost need saving from themselves.

Maryz, I dont think they want to listen to be honest.

The e-mail of the QC is published on the web site of her Chambers. I don't think it's a police matter publishing it but if people start bombarding her with e-mails it will be a bloody nuisance. Hopefully most will drop into spam.

It has all become a political battle imo over drug companies and opening the flood gates. If we cast our mind back to the child who was given little or no chance with his tumour and the parents 'kidnapped him' and took him for the proton therapy and he is now in remission and going to school. The people from the hospital told the parents it was pointless. They have now had to go back on their word and indeed are now bringing proton therapy to the UK. Science is very tied up with money and drug companies agenda. This i believe has now gone beyond the welfare of this little baby.

I seriously need to walk away from all this, I find myself getting so worked up over it and that is wrong.

writerannabe - I would like to personally thank-you and all staff who work on nicu. My Gc would not be alive today without the care they were given. All the staff went above and beyond the call of duty.
I am also very concerned for other patients and their families who are currently at GOSH, the additional stress this is putting on those families in truly horrifying.

I thought Ashya King was still not out of the woods yet. Someone posted on an earlier thread that he has jot been given the all clear.

That aside, it's a totally different case to that of Charlie Gard, as has been pointed out many times. Ashya was not terminally ill. It was not the case that he would die without the proton beam therapy, he had a 70-80% chance of surviving with regular radiotherapy.

Yes very smart move on GOSH's part. It was intetesting seeing some of the facts coming out and the reactions from CA etc. It started with a kind of 'get in there and show them your evidence' and then confusion when they didn't. Then criticism of the suggested time frame when they didn't realise it was the parents requesting it. They can't explain the discrepencies away so now they have gone for an even more aggressive stance against GOSH. There is a cover up, conspiracy etc and even the judge is in on it. Anything but the possibility they could be wrong or the parents view isn't accurate.

The principle is exactly the same. Parents striving for help. Had to resort to taking their child away by kidnapping him for the therapy against the authorities. The state knew best. My question is, did they really?