Charlie Gard

Felon · 25 Jul 2017 at 12:45

mmj_uk said:
How is it a fabrication? a medical condition such as this is always going to be time sensitive and you can't afford to dilly dally for 6mths.

The parents accepted it was better to let him die based on results the hospital presented in court only a few days ago, up until then both the parents and experts were basing it on old results which were much more promising.

I think if you look at the specifics, Charlie's case was always more advanced - not just because of delays, but the characteristics of the condition he has are far rarer and more severe, less than 100 instances of his particular type globally.

If you look at the evidence, GOSH investigated whether similar treatment being offered by the US doctor (nucleoside) would work, and everyone who looked at the case concluded that it wasn't worth doing, GOSH reached out to many people in many places for help and various opinions - they all came to the same conclusion, Chris Gard's own doctor came to the same conclusion back in April... The fact his parents felt that they and they alone spoke only for Charlie, and that he was beyond the opinions of the doctors or courts, only caused more harm in my opinion.

ubersonic · 25 Jul 2017 at 12:46

Minstadave said:
None of the people ever treated with the therapy had Charlie's specific condition or were as sick as Charlie was at the point the therapy was considered.

No but they had other subtype of the condition, and the idea that he was sicker than the others and would have been less responsive is the opinion of the GOSH doctors, the more experienced US doctors have said otherwise.

ubersonic · 25 Jul 2017 at 12:49

Screeeech said:
Chris Gard's own doctor came to the same conclusion back in April...

That has since been withdrawn as he was going off the reports by GOSH at the time and denied access to the actual medical records, after seeing the records the US doctors later said he would still have still been receptive to treatment at the time.

Felon · 25 Jul 2017 at 12:52

ubersonic said:
That has since been withdrawn as he was going off the reports by GOSH at the time and denied access to the actual medical records, after seeing the records the US doctors later said he would still have still been receptive to treatment at the time.

Receptive to treatment can mean anything in doctor speak, in the cases (again, none of which were as advanced as Charlie's) the best case expectation, is that the patients *might* be able to breathe for themselves without life support - that's it, that's basically the best outcome in around one out of ten cases, far less advanced..

Think about it logically;

You have a wrecked patient, no quality of life, catastrophic brain damage, no functioning senses, ventilated 24/7

You fly them around the world, or fly people to him - provide treatment, at hellish expense, financially, emotionally,

You now have a wrecked patient, no quality of life, catastrophic brain damage, no functioning senses, best case outcome - able to breathe unventilated

I ask again - what's the point?

Vonhelmet · 25 Jul 2017 at 12:58

ubersonic said:
Yes, that is what the post you quoted says

For certain values of "like his" and "good chance", sure...

ubersonic · 25 Jul 2017 at 13:00

Screeeech said:
I ask again - what's the point?

The point is that if he had been given the treatment 8 months ago when his parents asked then he may even have recovered by now as children in similar condition did. The experts say that even at the start of this month the MRI's were showing there was still chance for meaningful improvement, but alas his muscles have now deteriorated too much, far too much time was wasted by bureaucracy and red tape

Caged · 25 Jul 2017 at 13:05

Which expert said that the brain damage could be reversed at the start of July?

Spud21 · 25 Jul 2017 at 13:08

ubersonic said:
The point is that if he had been given the treatment 8 months ago when his parents asked then he may even have recovered by now as children in similar condition did. The experts say that even at the start of this month the MRI's were showing there was still chance for meaningful improvement, but alas his muscles have now deteriorated too much, far too much time was wasted by bureaucracy and red tape

Please stop making things up. There have been no children treated with a case similar to Charlies, there has been no treatment ever, for his variant of the condition.

Even then it's not the muscle weakness that is the issue (which is the only things that was successfully treated in other cases, still not the same variant of the condition) It was the brain damage that was the issue, for which there is absolutely no evidence this treatment could help.

Should we therefore start sending sick people to see any old nutter with some magic herbs when they claim it will cure them?

Felon · 25 Jul 2017 at 13:09

ubersonic said:
The point is that if he had been given the treatment 8 months ago when his parents asked then he may even have recovered by now as children in similar condition did. The experts say that even at the start of this month the MRI's were showing there was still chance for meaningful improvement, but alas his muscles have now deteriorated too much, far too much time was wasted by bureaucracy and red tape

If you look at the evidence and read the GOSH statement, they did all they could, spoke to everyone they needed to - everyone came to the same conclusions, not just GOSH doctors, but specialists from all over the place. It's not just a matter of time, the specific type of disease he has, is apparently far rarer and much more aggressive than what's normally seen, so I don't think it's the case that the simple matter of legal delays has condemned the child.

You're spinning it as though GOSH are a bunch of cretins who wouldn't dare take advice from some amazing US doctor who could simply cure him, if they'd only gotten to him in quick enough - as though GOSH were simply sitting there with their arms folded saying 'NOPE' because they didn't want to answer to some American.

Tunney · 25 Jul 2017 at 13:11

ubersonic said:
No but they had other subtype of the condition, and the idea that he was sicker than the others and would have been less responsive is the opinion of the GOSH doctors, the more experienced US doctors have said otherwise.

Where are you getting this information from? It simply isn't true.

The original US doctor changed his opinion the moment he understood the extent of Charlie's condition. He came to the same conclusion as the GOSH doctors.

Please go read the court judgements. They make it clear that there was never any chance for this poor boy.

ubersonic · 25 Jul 2017 at 13:14

Spud21 said:
Please stop making things up. There have been no children treated with a case similar to Charlies, there has been no treatment ever, for his variant of the condition.

You do realise that a variant of a condition is inherently both similar and yet different from other variants of the condition right?

Spud21 said:
Even then it's not the muscle weakness that is the issue (which is the only things that was successfully treated in other cases, still not the same variant of the condition) It was the brain damage that was the issue

As previously mentioned, the experts have now been able to access the medical records denied to them prior to the court case and have said that the MRI's and EEG's didn't actually show irreversible brain damage and that prior to the muscle deterioration his condition could have been improved by treatment (obviously it would have been improved a lot more during the past 8 months his parents were asking for it), the docs at GOSH simply got it wrong.

ubersonic · 25 Jul 2017 at 13:15

Tunney said:
The original US doctor changed his opinion the moment he understood the extent of Charlie's condition.

No he didn't, he made statements based on the reports he was given by GOSH, which he later retracted when he was able to review the actual medical files.

Tunney · 25 Jul 2017 at 13:20

ubersonic said:
No he didn't, he made statements based on the reports he was given by GOSH, which he later retracted when he was able to review the actual medical files.

Which doctor are you talking about?

ubersonic · 25 Jul 2017 at 13:22

Tunney said:
Which doctor are you talking about?

The US ones, they only finally got access to the medical records a couple of weeks ago:

Dr Hirano and Dr Bertini, together with other internationally renowned paediatric neurologists have now reviewed Charlie’s MRI’s and EEG’s which were performed in January and April respectively and they have confirmed that these MRI’s and EEG’s showed NO actual evidence of irreversible brain damage.

Unfortunately Professor Hirano did not have access to the raw data and he based what he said in April on reports. We did not have access to these second opinions before the initial trial, hence why we are where we are today. Had we had the opportunity to have raw data of the MRIs and EEGs independently reviewed, we are convinced Charlie would be on treatment now and improving all the time.

Vonhelmet · 25 Jul 2017 at 13:25

ubersonic said:
The point is that if he had been given the treatment 8 months ago when his parents asked then he may even have recovered by now as children in similar condition did. The experts say that even at the start of this month the MRI's were showing there was still chance for meaningful improvement, but alas his muscles have now deteriorated too much, far too much time was wasted by bureaucracy and red tape

Where are you getting 8 months from? They - together with the GOSH doctors - looked at the nucleoside treatment in January, which is 6 months ago. While making the applications for the treatment - together with the GOSH doctors - in February he suffered further seizures and the doctors decided it wasn't worth pursuing. That's when things went south legally, so that's 5 months ago, not 8.

Vonhelmet · 25 Jul 2017 at 13:28

Of course the US doctors will now say that he could have been treated, they have nothing to lose. No one is going to call their bluff on it any more so they could promise the earth now. If only he'd had the treatment! He could have been an astronaut! The president! The 100m sprint record holder!

Tunney · 25 Jul 2017 at 13:29

ubersonic said:
The US ones, they only finally got access to the medical records a couple of weeks ago:

They only got access to the records a couple of weeks ago because neither of these two doctors are the doctor who originally gave the parents hope.

See the original judgement. The original doctor is referenced as "Dr I".

In the Dr I's own words:

"Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely."

Caged · 25 Jul 2017 at 13:30

Guys I've seen the records now, I'm convinced I could have treated him but it's too late to have to prove that. Please put my name out there any pay me money for TV appearances.

Felon · 25 Jul 2017 at 13:31

ubersonic said:
As previously mentioned, the experts have now been able to access the medical records denied to them prior to the court case and have said that the MRI's and EEG's didn't actually show irreversible brain damage and that prior to the muscle deterioration his condition could have been improved by treatment (obviously it would have been improved a lot more during the past 8 months his parents were asking for it), the docs at GOSH simply got it wrong.

Sounds like they got it right to me;

(from court)

When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.

Sounds like a bit of a conflict of interest going on.

ubersonic · 25 Jul 2017 at 13:34

Vonhelmet said:
Where are you getting 8 months from?

That's when they first started requesting it.