Royal Gossip
August 19, 2017, 04:38:27 am *
Welcome, Guest. Please login or register.

Login with username, password and session length
 
   Home   Help Search Login Register  

Pages: 1 [2]   Go Down
  Print  
Author Topic: Charlie Gard and His Parent's Legal Battle to take him to the USA for Treatment  (Read 372 times)
0 Members and 1 Guest are viewing this topic.
marion
Duchess
*****
Offline Offline

Posts: 2259



« Reply #20 on: July 25, 2017, 06:14:47 pm »

The hospital has not held up treatment for a year as the first court case was in April 2017.

 In the UK children have rights independent of their parents. Almost all of the time parents make decisions about what is in the best interests of their children but  occasionally, however, they will not agree what this is. GOSH applied to give the treatment in January 2017, but then Charlie took a turn for the worse and a team of international doctors, including even Prof Hirano agreed treatment would not help. This case has been before several courts right up to the Court of Human Rights and every time the court’s decision is the same.  

Prof Hirano has not treated children with the same condition as Charlie, only similar and the drug he wanted to use hasn’t even been tested on mice with the same strain of mitochondrial disease from which Charlie suffers, let alone humans.

At the time Prof Hirano made his assertions that his treatment would be beneficial he had never seen or examined Charlie or read his notes, never consulted his medical team, and would have earned royalties from the sale of the drugs he proposed to prescribe, in which he has a direct financial interest.  
More than once the parents raised the prospect of criminal proceedings against the hospital and its staff and staff are receiving death threats. What kind of pressure does this put them under and possible to the detriment of their other patients and families.


https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=0ahUKEwiOxPb42qTVAhWDJcAKHf0nCP4QFgg4MAI&url=https%3A%2F%2Fwww.judiciary.gov.uk%2Fjudgments%2Fgreat-ormond-street-hospital-v-yates-and-gard-24-july-2017%2F&usg=AFQjCNGmu4-SRMir1ou033FX7LjshijcLw

https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-24072017.pdf

Logged
Val
Duchess
*****
Offline Offline

Posts: 4905


« Reply #21 on: July 25, 2017, 06:50:03 pm »

There are further disagreements now with the parents wanting to take him home to die and the hospital not agreeing.  The parents have offered to pay for the ventilator etc.  The trouble is the media haven't always got the full story re the medical and practical issues of doing this.
Logged
marion
Duchess
*****
Offline Offline

Posts: 2259



« Reply #22 on: July 25, 2017, 06:51:54 pm »

^The Judge made exactly that point.
 
The Judge also stated that as a hospital does not have the power in respect of a child that they have to make an application to the court, to an independent judge, for a determination of what is in that child’s best interests.  In circumstances where there is a dispute between parents and the hospital it is vital the child himself is independently represented so a guardian is appointed to represent the child, so there is someone who could independently report to the court as to what was in his best interests.


What  would happen if the parents took him home with a ventilator and the refused to turn it off?  

If this goes on much longer it wouldn't surprise me if he was made a ward of court
« Last Edit: July 25, 2017, 07:01:04 pm by marion » Logged
gingerboy24
Princess
*******
Offline Offline

Posts: 9478


« Reply #23 on: July 25, 2017, 07:08:30 pm »

I actually think the parents have lost the plot, it is one thing after another with them it would appear.  Why can´t they just let him go in peace now, he doesn´t know where he is, bless his little heart, and if he can "feel" somehow people who love him are around then why does he have to be taken home.  Just a thought, wonder if that is what they wanted by backing off frm the court case, take him home and keep him on life support indefinitely, who knows, they seem desperate enough to keep him to try anything now.  I am very sorry and sad for them, but they need to let the little guy go, as hard and painful as it is, it is his time to go.  I find it amazing they could even consider treatment that had not even been tested on mice yet, unbelievable.  I do hope GOSH do not allow him out of the hospital, and put a 24 hour watch on him, those two are so desperate I can see them trying anything. The child has no life, he is brain dead, they need to accept that, as hard as it is for them.  I am 100%b with GOSH on this one, I hope they do not let him out.
Logged
HRHOlya
Countess
****
Offline Offline

Posts: 1515



« Reply #24 on: July 25, 2017, 07:26:44 pm »

The case really is muddled and I don't think that most people know the whole truth, some like me who don't follow that closely and some who don't bother to read anything. The US doctor has been accused of selling "false hope" and he himself stated that Charlie's case is too severe. Charlie and the experminetal drugs would have turned out to be a medical experiment at best and it's a loss to the medical world that tests with drugs couldn't have been performed with Charlie.

I don't get the parents need to take Charlie "home". On a personal level I absolutely do, but the problem is transport and set-up and what if something goes remotely wrong, isn't it best to have medical staff on hand in a medical facility, ie a hospital?? Charlie's home has been the hospital anyway, it's what he's known best his whole life so far. If he's brain dead, it doesn't matter anyway. People who need to die home are usually people who've been home most of their life and like the comfort, but the only comfort truly needed is having loved ones there. So all Charlie needs is his parents when he goes, not a crib he's slept in for 8 or so weeks at the beginning of his life.

I know quite a bit more reading this thread and your informative posts and I have read up a bit more on it as well and think the parents are so clouded, they are not sound of mind anymore when it comes to their son. I'm a bit baffled that they don't make the best decision for the child, it comes almost off as if they don't even think 5 or 10 years ahead and don't think at all what it means for them and their child to be a bedbound case who can't see, hear, think or breathe on his own. And their refusal to see reality head on means that saying goodbye is even worse for them, because they are not at all preparing for the inevitable.
Logged
YooperModerator
Super Moderator
*****
Offline Offline

Posts: 12988



« Reply #25 on: July 25, 2017, 09:30:03 pm »

^^^^It takes a long time before anything ever appears before a court.  April may indeed be when the courts first published this but it was months before that the wrangling over who had the rights to determine treatment began.  Charlie was born in August 2016 and was diagnosed in October.  If he had had testing at birth, as he should have, he'd not be dying right now.

I actually took the time to talk to the scientists where I work (the Salk Institute) about this and they are, in unison, shocked at the lack of parental rights and lack of pre and post birth examination and treatment for this infant.  Their biggest beef?  Pre/postnatal testing.  In the US, DNA abnormalities are routinely done before birth and immediately after birth.  Any whiff of molecular disorder would have been dealt with swiftly.  They all believe and agree that in October, Charlie still had hope based on actual medical reports.  The parents, at that time, should have been well within their rights to rush to any treatment they desired.  Good hospital or no, that should be their right.

As for his death?  In the name of God, let at least this one thing be allowed to the parents own discretion.  I think the medical and legal system in the UK has already done enough.

^^^Well, somebody denied Charlie and his parents the right to leave and get treatment somewhere else.  If our goofball US Congress can agree on this 100%, that says everything.  Doctors, scientists, medical professionals all went before the President and Congress to state Charlie's case.  This isn't even close to being defensible.   If this had happened here?  Those parents would have the biggest, strongest, legal defense I've ever witnessed. 
Logged


\\\"I have sworn upon the altar of God, eternal hostility against every form of tyranny over the mind of man.\\\"  Thomas Jefferson
marion
Duchess
*****
Offline Offline

Posts: 2259



« Reply #26 on: July 25, 2017, 10:30:18 pm »

@Yooper . You stated the courts held treatment up for a year but the court only became involved in April 2017, approx 3 months ago. In January the hospital, in conjunction with other experts agreed no treatment would help Charlie. Even Prof Hirano agreed with this at that time. It was probably at this time that legal action wadcconsidered, 6 months ago.

@HRHO ITA reporting is a bit muddied at times..the media are not always known for accurate reporting. However the court transcripts are accurate and a reliable source for info.
« Last Edit: July 25, 2017, 10:35:22 pm by marion » Logged
YooperModerator
Super Moderator
*****
Offline Offline

Posts: 12988



« Reply #27 on: July 25, 2017, 11:20:36 pm »

^Yes, I have already defended that.  It takes months and teams of filing and working with attorneys on each side before anything gets to a court of law.  The parents started before the end of 2016 in fact.  A lot of valuable time was wasted no matter how you slice it and it's heart breaking to see this. 

The bottom line is that this should never have gone to a court.  It never would have here so we have no tools to understand the interference from anyone.  And no scientist, doctor or specialist would have fought to get Charlie here if they thought there was no hope.  No monies would have been sent without severe review of the case.  So, for me, the system didn't work and I don't think everyone's allowing full disclosure of the health evaluation.  Every dr and scientist I talked to all saw the test results and none have any doubt that Charlie could have been treated if caught earlier.  Why would they lie?  Anyway, no one should have been allowed to let this drag on that far.

Now the parents will never know if intervention had happened either in October or at birth.  Even my kids, years ago, received automatic full spectrum testing including any abnormalities before and after birth.  It's standard.



Logged


\\\"I have sworn upon the altar of God, eternal hostility against every form of tyranny over the mind of man.\\\"  Thomas Jefferson
leogirl
Duchess
*****
Offline Offline

Posts: 3195


« Reply #28 on: July 26, 2017, 07:35:44 am »

Letting the hospitals and courts have authority instead of parents sets a really bad precedent. The parents were not abusing him, they just wanted to try a treatment that might have helped him. And even if it didn't work, the doctors doing the treatment could have learned from his case and used that knowledge to help someone else. Instead, Charlie was made to stay in the hospital for many months, deteriorating until it was too late to try the experimental treatment. Long court battles, money wasted on legal fees, no help for Charlie or research for anyone else who has or might have his condition in the future. The parents even got the money together for the travel. I cannot even imagine how the parents must feel right now, so helpless that they weren't even allowed to try to help their baby.  sob
Logged
marion
Duchess
*****
Offline Offline

Posts: 2259



« Reply #29 on: July 26, 2017, 09:38:34 am »

One problem is noone not directly involved has seen the medical notes. All we do know for sure us what is in the court transcripts.

There is no precedent being set here, in  the UK, whether we like it it not or whether we agree or not,  it is practice for an independant guardian to be appointed to represent a minor and for the issue to taken to court. It usually happens in cases where fir instance parents refuse to allow a minor  to be given life saving blood transfusions on  religious grounds.

There be a lot we will never know ...the parents are free to say whatever they want but GOSH's hands are tied by rules of confidentiality.

What I can't get my head round is  Prof Hirano agreeing in January with GOSH there was no benefit to be gained from treatment yet now he has changed his mind when Charlie's condition is even worse. Doctors at GOSH do not stand to benefit financially from their decisions  here whereas according to court transcripts, Prof Hirano does.  How can  he be so sure it would benefit Charlie when the drug he wanted to use hasn't even been tested on mice let alone given to a human yet

Hopefully the parents will be able to take Charlie to a hospice to end his life. Home doesn't seem to be an option and relations seem to be at an all timeiw at GOSH
« Last Edit: July 26, 2017, 09:42:24 am by marion » Logged
Alexandrine
Super Moderator
*****
Offline Offline

Posts: 13947



« Reply #30 on: July 26, 2017, 11:23:19 am »

I like the Uk system parents may not always do the best thing for their kids. And in UK there is no assisted dead so for the hospital to consider there was no options it meant nothing could be done for him.

I think the doctor in USA wanted to use him to improve his drugs I can understand the parents wanting to use any hope available but they were probably being used.

GOSH even mentions that the doctor did not even visit him until court ordered. Meanwhile his usual doctor is an expert on this disease and consulted other specialised doctors in other countries.

It is sad but I still do not understand what the parents wanted.
Logged



“Three things are to be looked to in a building: that it stand on the right spot, that it be securely founded, that it be successfully executed.” ~ Johann Wolfgang von Goethe
YooperModerator
Super Moderator
*****
Offline Offline

Posts: 12988



« Reply #31 on: July 26, 2017, 02:30:03 pm »

What I try to do is follow logic.  And all signs point to the medical staff everywhere doing their absolute best to make this work.  What does not add up is the behavior of the hospital administration and the, usually, arrogant board that they serve. 

I draw the line, however, with this hospital maligning Dr. Hirano.  Unless Dr. "The Saint" (that's actually his nickname) Hirano has completely lost his mind, in no way does it add up that he would risk losing his license not to mention funding for Columbia and his research to do anything that would fall out of line with medical ethics, the Hippocratic oath, and his tireless efforts at Columbia.  What this hospital administration has said, in print, accuses Dr. Hirano of malpractice.  That does not pass the sniff test and says more about the hospital administration bureaucracy and red tape than it does about such a highly regarded and dedicated research scientist and physician.  This only points to major pr-driven behavior at a fine doctor's expense. 

If they had a problem with Dr. Hirano, that should have stayed within the medical community, not to disparage him in the court of public opinion which seems to be for their own benefit.

For him to have to make a rebuttal is so insulting: 

http://news.sky.com/story/us-doctor-dr-michio-hirano-speaks-out-in-charlie-gard-case-10962056

The US doctor at the heart of legal arguments over Charlie Gard has spoken publicly for the first time since the case ended.

Charlie's parents Connie Yates and Chris Gard ended their court fight to take him to the US for experimental treatment on Monday.

But Dr Michio Hirano, a neurology expert from New York's Columbia Medical Center, was criticised by Great Ormond Street Hospital for giving the family false hope that the treatment could help Charlie.

Dr Hirano has released a statement, saying: "I became involved in Charlie's case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether and experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie's condition.

"As I disclosed in court on 13 July, I have relinquished and have no financial interest in the treatment being developed for Charlie's condition.


"Unfortunately, a MRI scan of Charlie's muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment."

Quote
But among those defending the American doctor was Art Estopinan, whose son has a similar condition to Charlie and has been receiving the experimental treatment.

Mr Estopinan described Dr Hirano as "an angel" and "a saint".
Logged


\\\"I have sworn upon the altar of God, eternal hostility against every form of tyranny over the mind of man.\\\"  Thomas Jefferson
marion
Duchess
*****
Offline Offline

Posts: 2259



« Reply #32 on: July 26, 2017, 03:51:59 pm »


I think the doctor in USA wanted to use him to improve his drugs I can understand the parents wanting to use any hope available but they were probably being used.


I think the Judge  came to the same conclusion and  giving evidence this afternoon Dr Louise Terry, associate professor and reader in law and ethics at London South Bank University, said that the “saddest” aspect of the case was the “raising of false hope, particularly by a doctor who had not examined him.”

As all evidence needs to be put before the Court of Law GOSH had no option but to say that Prof Hirano hasn't examined Charlie etc. It was factually correct and in the UK court transcripts are open documents available to the public.  The parents have been able to say whatever they like in public and to the media, making allegations against GOSH and staff but the latter are unable to defend themselves as this would go against rules of confidentiality.

« Last Edit: July 26, 2017, 03:54:03 pm by marion » Logged
leogirl
Duchess
*****
Offline Offline

Posts: 3195


« Reply #33 on: July 27, 2017, 09:06:31 pm »

I don't think the hospital and staff are bad people. Of course they wanted to/tried to help Charlie. They helped him for many months, and he would have died months ago if they did not take care of him.

I just think parents should be the decision makers when it comes to their child. I don't think it's appropriate for a hospital to take a family to court. The exception being in extreme cases, like when CPS has to get involved because the home is abusive or unsafe (parents beating their child, drug/alcohol abuse, etc). Or maybe if the parents don't agree, the hospital can weigh in to help the judge decide on which parent to side with.

The decision making should be left to the lowest possible level: the family, with the courts/state only getting involved if absolutely necessary.

If Charlie's parents wanted him to try a treatment, that should have been allowed. I don't think there was "false hope" because they knew it was experimental and might not work. The experiment's results could have also been used to help someone else in the future, so it would not have been wasted, even if it did not work as they hoped and he ended up dying anyway.

If they did not want Charlie to try the treatment, and wanted their son to die a natural death (take off support that prolongs his life but does not improve his condition), they should not have been forced to try the treatment against their will, either.

 dontknow
Logged
Pages: 1 [2]   Go Up
  Print  
 
Jump to:  


Powered by MySQL Powered by PHP Powered by SMF 1.1.16 | SMF © 2011, Simple Machines | Imprint Valid XHTML 1.0! Valid CSS!