Charlie Gard.
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04-07-2017, 07:07 PM
RE: Charlie Gard.
(04-07-2017 06:56 PM)Dom Wrote:  Not going to look for a source now, but I read someplace that the brain damage is permanent even if he lives, and the US hospital mostly wants him to study and experiment on.

His docs are resisting that notion and it's considered unnecessary cruelty. They are convinced he cannot be fixed and don't want him to be a Guinea pig.

I respect the wishes of the family, but if it were my kid I'd consider it his legacy that he was able to aid in the better treatment of future cases.

If you gotta go out anyway, do as much good as you can along the way. Let the kid mean something bigger than he can on his own dime. As long as it doesn't mean unnecessary harm to him.

Then again, as stated, I respect whatever the family feels is the right thing to do.

But now I have come to believe that the whole world is an enigma, a harmless enigma that is made terrible by our own mad attempt to interpret it as though it had an underlying truth.

~ Umberto Eco
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07-07-2017, 02:27 PM
RE: Charlie Gard.
(03-07-2017 07:33 PM)Fatbaldhobbit Wrote:  To preface, I'm posting this in Casual, since it seems to cover multiple genres: political, medical, morals & ethics. I'm sure the mods (Thumbsup ) will move it if they feel the need.

So. I was wondering if anyone else has seen the stories regarding Charlie Gard. He's a terminally ill infant who's life support will be turned off on Friday.

BBC video

CNN story 1

CNN story 2

Quote:Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. Caused by a genetic mutation, it leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients.

Charlie's condition has deteriorated since birth. The doctors treating him have determined that further treatment will only prolong the inevitable. The child is dying, painfully, and the most humane thing is to allow him to die.

The parents disagree and have appealed to the courts.

The UK Supreme Court considered the case and sided with the doctors. (Twice.)

The European Union Supreme Court also sided with the doctors:

Quote:The court said the decision was meticulous, noting that they spoke with Charlie's health care providers, independent experts, experts recommended by the family, and Charlie's parents to inform the ruling. In the end, the press released said they determined, "it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm."

The parents had wanted to bring the child to the US for an experimental treatment that doctors say will not work.

Quote:According to bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics, the experimental therapy offers a very small chance of some improvement. In fact, it has never been used to treat this form of mitochondrial DNA depletion syndrome, according to the British ruling, though it has proved beneficial to patients with a different form of the disease.

Of course, the Pope had to weigh in:
Quote:On Sunday, Pope Francis called for the parents of the baby, who is in a hospital in London, to be allowed to "accompany and treat their child until the end."

I note that while the pontiff offered prayers, no offer of financial assistance was mentioned, nor any other real help, such as a papal jet or airline tickets, etc. Go figure.

And, surprisingly Trump felt the need to become involved. Because, you know, using a dying infant for political gains is perfectly acceptable in Donny-Land.

Quote:If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.

No matter how you look at it, the whole episode sucks.

It sucks for the parents, who have to watch their child die, desperately clinging to any hope they can.

It sucks for the doctors who are unable to treat him.

It sucks that world leaders will exploit the pain and suffering of the vulnerable.


Most of all, it sucks for Charlie, who never had a chance.

Unfortunately, this is typical of what has happened to a lot of people in the UK where children are being taken away from parents at birth.

The UK social services will routinely write to women who are pregnant and who have a history of, for instance, drug or alcohol abuse and warn them that they are going to intervene at the birth of their child. They will go to court and get an order appointing themselves as legal guardians of the child prior to birth and attend at the birth.

In this case it appears that they decided that the parents were not acting in the child's best interests so they had the parents rights taken away. Presumably they thought it was in Charlie's best interests to die without any further treatment, even if the parents could afford the treatment. The order of the court would then kick in to prevent the parents from removing the child from the jurisdiction of the court without the permission of the legal guardians, ie., the social services.

This is a product of political correctness gone mad. The UK has adopted policies over the last 20 years or so which have turned the place into a neo-fascist police state run by bureaucrats who act like demagogues and completely disregard the feelings or human rights of the parents.
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07-07-2017, 02:35 PM
RE: Charlie Gard.
DB do you have any braincells at all? Besides the ones that let you type? FFS Facepalm

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If you're perfect -- Alanis Morissette
(06-02-2014 03:47 PM)Momsurroundedbyboys Wrote:  And I'm giving myself a conclusion again from all the facepalming.
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07-07-2017, 03:34 PM
RE: Charlie Gard.
(04-07-2017 07:07 PM)evenheathen Wrote:  
(04-07-2017 06:56 PM)Dom Wrote:  Not going to look for a source now, but I read someplace that the brain damage is permanent even if he lives, and the US hospital mostly wants him to study and experiment on.

His docs are resisting that notion and it's considered unnecessary cruelty. They are convinced he cannot be fixed and don't want him to be a Guinea pig.

I respect the wishes of the family, but if it were my kid I'd consider it his legacy that he was able to aid in the better treatment of future cases.

If you gotta go out anyway, do as much good as you can along the way. Let the kid mean something bigger than he can on his own dime. As long as it doesn't mean unnecessary harm to him.

Then again, as stated, I respect whatever the family feels is the right thing to do.

With irreversible brain damage, you can't tell what harm you are inflicting or pain you are causing. That baby is totally helpless. Not being able to express emotions doesn't disable the central nervous system. You can be totally paralyzed and expressionless and in excruciating pain.

Reminds me of that story about a veterinarian who kept a comatose dog, given to him to put down, alive for years as blood donor.

I didn't think that was right, and I don't think it's right to subject a severely brain damaged baby to experiments.

Not allowing the baby to die at home makes no sense to me at all, unless they fear the parents will go and subject it to these experiments without permission.

[Image: dobie.png]Science is the process we've designed to be responsible for generating our best guess as to what the fuck is going on. Girly Man
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07-07-2017, 04:08 PM
RE: Charlie Gard.
The doctors here in the us just want to experiment on this infant and keep bleeding the family dry until they can't afford shit.

Of course trump is on that side.


But as if to knock me down, reality came around
And without so much as a mere touch, cut me into little pieces

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07-07-2017, 06:53 PM
RE: Charlie Gard.
(07-07-2017 03:34 PM)Dom Wrote:  
(04-07-2017 07:07 PM)evenheathen Wrote:  I respect the wishes of the family, but if it were my kid I'd consider it his legacy that he was able to aid in the better treatment of future cases.

If you gotta go out anyway, do as much good as you can along the way. Let the kid mean something bigger than he can on his own dime. As long as it doesn't mean unnecessary harm to him.

Then again, as stated, I respect whatever the family feels is the right thing to do.

With irreversible brain damage, you can't tell what harm you are inflicting or pain you are causing. That baby is totally helpless. Not being able to express emotions doesn't disable the central nervous system. You can be totally paralyzed and expressionless and in excruciating pain.

Reminds me of that story about a veterinarian who kept a comatose dog, given to him to put down, alive for years as blood donor.

I didn't think that was right, and I don't think it's right to subject a severely brain damaged baby to experiments.

Not allowing the baby to die at home makes no sense to me at all, unless they fear the parents will go and subject it to these experiments without permission.

Agreed. Like I said, as long as there was no unnecessary harm, and I'd want to take great lengths to make sure of it.

Thinking about it again, I suppose it's really not a good idea, and I can't say what I'd do in that position.

But now I have come to believe that the whole world is an enigma, a harmless enigma that is made terrible by our own mad attempt to interpret it as though it had an underlying truth.

~ Umberto Eco
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07-07-2017, 07:31 PM
RE: Charlie Gard.
(07-07-2017 04:08 PM)Momsurroundedbyboys Wrote:  The doctors here in the us just want to experiment on this infant and keep bleeding the family dry until they can't afford shit.

Of course trump is on that side.

Oof. I hadn't thought of it that way, but kind of see your point. My take is let to the poor tyke die. When I had a job, we had a name for an effort that required a bunch of money but was unlikely to produce real world results. If a manager called it a "science project", the effort was killed. But I've worked on efforts that provided rich results (I'm talking billions), after the first manager denied the money with that tactic.
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08-07-2017, 09:23 AM
RE: Charlie Gard.
(07-07-2017 02:27 PM)Deltabravo Wrote:  The UK social services will routinely write to women who are pregnant and who have a history of, for instance, drug or alcohol abuse and warn them that they are going to intervene at the birth of their child. They will go to court and get an order appointing themselves as legal guardians of the child prior to birth and attend at the birth...

Citation please.


Confused

I'm a creationist... I believe that man created God.
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08-07-2017, 09:46 AM
RE: Charlie Gard.
New developments:

Washington Times

Quote:Great Ormond Street Hospital in London has applied for a new court hearing to determine the fate of Charlie Gard, saying it has received “new evidence” that may affect the terminally ill infant’s case.

“Great Ormond Street Hospital for Children has today applied to the High Court for a fresh hearing in the case of Charlie Gard in light of claims of new evidence relating to potential treatment for his condition,” the hospital said in a statement Friday.

The European Court of Human Rights upheld a lower court decision last month saying it was in Charlie’s “best interests” to be allowed to “die with dignity” against the wishes of his parents.

But the hospital said it received “fresh evidence” from researchers at international hospitals in the last 24 hours concerning potential treatments for Charlie.

“Great Ormond Street Hospital is therefore giving the High Court the opportunity to objectively assess the claims of fresh evidence,” the hospital said. “It will be for the High Court to make its judgment on the facts.”

No indication on what the new evidence is or what hospitals submitted it.

Help for the living. Hope for the dead. ~ R.G. Ingersoll

Freedom offers opportunity. Opportunity confers responsibility. Responsibility to use the freedom we enjoy wisely, honestly and humanely. ~ Noam Chomsky
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08-07-2017, 09:59 AM
RE: Charlie Gard.
Daily Mail UK

Some more information:

One letter was submitted to the court and it was signed by seven medical professionals.

Quote:The seven specialists include the American doctor offering to treat Charlie, and a colleague, neither of whom can be named for legal reasons. Two others are from the papal children's hospital in Rome, two are from the Vall d'Hebron research institute in Barcelona, and the seventh is an award-winning clinical geneticist at Cambridge University.


The letter was sent to the Great Ormond Street Hospital from the pope's childrens hospital and was submitted by GOSH to the courts. The case could be heard as early as monday.

Help for the living. Hope for the dead. ~ R.G. Ingersoll

Freedom offers opportunity. Opportunity confers responsibility. Responsibility to use the freedom we enjoy wisely, honestly and humanely. ~ Noam Chomsky
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