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OverSword

Death Panel Rules Baby Must Die

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Imagine discovering your infant is one of only sixteen people ever to be diagnosed with a fatal genetic affliction for which the only shred of hope would entail a flight abroad for experimental treatment; but — rather than simply making the albeit complicated and costly trip — the highest court in the land rules your child must die.

This dystopian nightmare might sound like a cinematic creation, yet it’s reality for parents Chris Gard and Connie Yates, whose nine-month-old son, Charlie, suffers from mitochondrial DNA depletion syndrome — a genetic condition affecting cells’ ‘powerhouses’ — inherited when both parents unknowingly carried the faulty gene.

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Heartbreaking.  As the tsunami of baby boomers become ever more decrepit we are going to be faced with situations where care is rationed.  Palliative care will be all that is offered to those whose treatments will have little chance to extend their lives.  It's just the reality we will have to face.  I just pray that we become more sane about providing end of life options and have a willingness to allow these people some pain relief as their conditions fail.

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Posted (edited)

I must be having a dense morning...why exactly does the couple need the Supreme Court's blessing to take their child to the US?

 

Edit to add--

I opened the link and saw the picture of baby Charlie, then

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The court had earlier heard how Charlie could not could see, hear, move, cry or swallow.

Ms Gollop added: "He is on a machine which causes his lungs to move up and down because his lungs cannot go up and down.

Oh my God. That was very hard to process...:mellow:

Edited by Dark_Grey
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Just put it out of it's misery . I don't understand who appealed to the court in the first case. 

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One thing I noticed in the OP... The quote "ruling there would be no trip, as prospective treatment could not possibly guarantee improvement."

Absolutely NO medical procedure can GUARANTEE improvement!  While this statement is probably true in this case it is a terrible TERRIBLE legal precedent to set...

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Charlie, suffers from mitochondrial DNA depletion syndrome — a genetic condition affecting cells’ ‘powerhouses’ — inherited when both parents unknowingly carried the faulty gene.

Like what? Mitochondria come only from the mother, the father has them too but he doesn't pass them on. If there is a problem with the mitochondria, it's coming from the mother. She probably had both the healthy and unhealthy version in her cell, but only passed the unhealthy one to her son.

I wonder what else they got wrong in the article. -__-

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I read a few more articles about the case and all of them are pretty much same and only new information I learned that the case is between doctors and parents, doctors arguing that the treatment is experimental and might not work. I didn't get who approached court or how can doctors dictate where and what treatment I can receive. 

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The BBC have been covering this, I think they're more up to date with the situation.

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Terminally-ill baby Charlie Gard must continue to receive life-support treatment until Tuesday, the European Court of Human Rights has said.

His parents, Chris Gard and Connie Yates, have launched a final legal challenge at the European court after their Supreme Court challenge failed.

They want the 10-month old to undergo a trial in the US, but London specialists believe he has no chance of survival.

The European court wants until Tuesday to consider the case.

http://www.bbc.co.uk/news/uk-england-40225132

Poor wee soul, my heart goes out to him and his parents. They're trying so hard to give him a chance but they're clutching at straws I feel, it's so terribly sad.

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Update -

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Charlie Gard  given six day reprieve as European Court of Human Rights says doctors must keep sick baby alive

http://www.telegraph.co.uk/news/2017/06/13/charlie-gard-given-six-day-reprieve-european-court-human-rights/

 

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On Friday, June 09, 2017 at 0:48 PM, OverSword said:

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Any opinion on this? Or is it just a post-and-run?

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1 hour ago, Gary Meadows said:

Any opinion on this? Or is it just a post-and-run?

Sure.  My opinion is that the judges should not be allowed to forbid them to travel to the USA and pay for whatever treatment they care to spend their money on.

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The wee soul is still hanging on.

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Doctors have been told to continue providing life-support treatment to a terminally ill baby at the centre of a high-profile legal battle for another three weeks to give judges in the European Court of Human Rights time to analyse the case.

Supreme Court justices in London say Great Ormond Street specialists should keep providing life-support treatment until midnight on July 10.

http://www.telegraph.co.uk/news/2017/06/19/charlie-gard-doctors-must-continue-provide-treatment-allow-european/

 

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Doctors actually called authorities to stop this couple from doing what they obviously have a full right to do. It's not like they have a better option, or even an option at all. This is medical tyranny.

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I don't know how it works in other countries but here in the U.K. An infant or children under the age of majority can be made 'wards of court', which legally makes the government their guardian.  This is usually invoked when it is deemed the child is in physical or psychological danger.  Religious groups like the JW for instance might try to prevent a life saving medical procedure on a child which is against their beliefs (blood transfusions etc) and the child will be made ward of court so the parents lose parental control and judges decide.  It is done in the interests of the child's safety and welfare.  I suspect this is what has happened here.  I believe the medics believe the long trip to America and the subsequent treatment will cause suffering above and beyond what he is experiencing now, and ultimately produce no noticeable improvement.  I am not commenting on whether this experimental therapy will help or not, as I don't know, but the above explains the authorities involvement in this case.

i am still at a loss to understand why any parent would want to inflict a lifetime of however short on a child with such a low level, if any, of life experience or awareness.  I couldn't do that if it was my own child in these exact circumstances with this genetic damage.  I would let nature take its course, mourn and grieve and be thankful I could release them from their suffering.

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On 6/9/2017 at 11:38 AM, Dark_Grey said:

I must be having a dense morning...why exactly does the couple need the Supreme Court's blessing to take their child to the US?

 

Edit to add--

I opened the link and saw the picture of baby Charlie, then

Oh my God. That was very hard to process...:mellow:

That's the way I felt when I saw the video of Otto Warmbier crying like a child while he was on the stand in NK.  He was an adult of 21 when he was going through the torture but my heart was breaking for him when I saw the way he was so totally broken, emotionally.  The two stone-faced guards, I would cheerfully knee-cap.  THEN I'd get serious about inflicting some misery on them.  Cruel b*******.  

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6 hours ago, and then said:

That's the way I felt when I saw the video of Otto Warmbier crying like a child while he was on the stand in NK.  He was an adult of 21 when he was going through the torture but my heart was breaking for him when I saw the way he was so totally broken, emotionally.  The two stone-faced guards, I would cheerfully knee-cap.  THEN I'd get serious about inflicting some misery on them.  Cruel b*******.  

The way he couldn't stop squeezing his eyes shut? I felt for him as well. I can't imagine what Otto's parents must think after all the appeals they made to the American Government...

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Crazy thread title, designed to get us clicking!

"Death panel"- no, panel of expert legal and medical opinion (including opinion from the doctors who are proposed to be treating).

"must die"- no, must be allowed peaceful death as patient has no (as in NO) quality or even awareness of life.

All terribly tragic, but read Susanc241:This case is extremely sad, and I have had children myself, but I understand this baby cannot see, hear, swallow or feel, or even breathe without a ventilator.  Even the expert in the States has been quoted as saying he doesn't think they can do much for him.  My question is, why would anyone want to keep a child alive forcibly to endure such an existence, an existence it appears he is not even aware of?  If anyone can answer me that, I would be grateful. 

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On 6/9/2017 at 5:30 PM, Susanc241 said:

My question is, why would anyone want to keep a child alive forcibly to endure such an existence, an existence it appears he is not even aware of?  If anyone can answer me that, I would be grateful. 

Because he's their son and they can't find it in themselves to let him go. As heartbreaking as it is his parents are being ruled by their hearts instead of their heads.

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The European court have made their decision -

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The European court of human rights has rejected an appeal by the parents of a critically ill baby that he should be allowed to undergo experimental treatment in the US.

The decision by the Strasbourg court closes off the last legal avenue of appeal for the family of Charlie Gard and follows a similar ruling by the UK’s supreme court.

The judgment also lifts a court order under which doctors at Great Ormond Street hospital in London had been required to maintain life support treatment for the 10-month-old child who has brain damage and a rare genetic condition. 

https://www.theguardian.com/law/2017/jun/27/charlie-gard-european-court-rejects-plea-to-intervene-in-life-support-fight

 

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I only read some of it, it is too sad to read.  If it was my child, I get the not wanting to let go, but I would also look at the quality of life.  He has none.  And the cost of keeping him alive must be astronomical.  When so many people need medical attention, is one life more important than every other child who needs medical attention?  Or a bed in a hospital which is being taken up?  

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18 hours ago, glorybebe said:

I only read some of it, it is too sad to read.  If it was my child, I get the not wanting to let go, but I would also look at the quality of life.  He has none.  And the cost of keeping him alive must be astronomical. 

His parents had put all their hopes in taking Charlie to America for treatment. They weren't expecting a miracle cure, they just thought the doctors there might be able to improve his quality of life. They'd even raised the funds to pay for the treatment.

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Gard and Yates, who are in their 30s, have launched a fundraising appeal to help pay for doctors’ bills in the US. It reached a £1.2m target before the initial high court trial. That figure has now topped £1.3m, consisting of more than 83,000 donations.

But now since the court ruling Charlie's parents are planning to donate the money raised to charity.

Quote

Charlie Gard's parents 'hope to use donations to set up charity'

http://www.bbc.co.uk/news/uk-england-london-40430188

 

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The most heartbreaking experience I've ever had was the time a precious little one told me she wanted to die. Surgeries and chemo had taken their toll, and the constant, excruciating pain was unbearable. Even more painful, by her own admission, was seeing how sad her parents were and how hard they were trying to make her well.

She knew she was dying, but was trying to hang on, not for herself but for her family.

She was just six years old.

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The Pope is now quoted as saying it is 'never right to end a human life' but this baby would be dead already if he wasn't being kept artificially alive on a ventilator.  In my opinion he is being forced to live unaturally.  I sometimes think we cause more anguish by offering hope where there is none.  I still think this is a sad, tragic case.

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1 hour ago, Susanc241 said:

The Pope is now quoted as saying it is 'never right to end a human life' but this baby would be dead already if he wasn't being kept artificially alive on a ventilator.  In my opinion he is being forced to live unaturally.  I sometimes think we cause more anguish by offering hope where there is none.  I still think this is a sad, tragic case.

A great many people are kept alive 'unnaturally' whilst efforts are made to heal them. Indeed, one could take your line of reasoning even further and argue that any medical treatment or intervention is 'unnatural'. But I understand the point you are making, and why.

I happen to agree with your overall belief that in this case the child should not be made to suffer any more than it already has. But at the same time, I can understand why the parents are doing what they are. I may not agree with it, but I understand.

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