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Charlie Gard

unsungunsung I stopped by on March 7 2024. First time in many years, had to update payment info. Hope all is well. Politicians suck. Bye. Posts: 9,487
in A Moving Train
This is the future of the medical system in the US, where a family can raise the funds for treatment but a court can sentence the child to death.

http://www.bbc.com/news/uk-england-40206045
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Comments

  • unsungunsung I stopped by on March 7 2024. First time in many years, had to update payment info. Hope all is well. Politicians suck. Bye. Posts: 9,487
  • oftenreadingoftenreading Victoria, BC Posts: 12,845
    A horribly sad situation but the legal outcome has absolutely nothing to do with "socialized medicine".
    my small self... like a book amongst the many on a shelf
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    "My brain's a good brain!"
  • oftenreadingoftenreading Victoria, BC Posts: 12,845
    unsung said:
    Socialized medicine doesn't say that baby should die; unfortunately, biology says that baby is going to die. He has a genetic abnormality incompatible with life. 
    my small self... like a book amongst the many on a shelf
  • rgambsrgambs Posts: 13,576
    :dizzy:
    Monkey Driven, Call this Living?
  • unsungunsung I stopped by on March 7 2024. First time in many years, had to update payment info. Hope all is well. Politicians suck. Bye. Posts: 9,487
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    unsung said:
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
    Not true.

    Some parents are completely unfit to parent.
    "My brain's a good brain!"
  • rgambsrgambs Posts: 13,576
    unsung said:
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
    It's not "some bureaucrat", it's the child's doctors and hospital staff.
    Quite a distinction.
    Monkey Driven, Call this Living?
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    unsung said:
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
    i work with an orthopedic surgeon and i can tell you from experience that in most cases parents have no fucking clue what is best for their child. medical science knows best.

    you think a parent knows best?

    try having a conversation with a parent of a child with a severe staph infection in the leg. or a severely comminuted fracture of both bones. in those cases there is no saving the limb. amputation is what is needed to save the child's life. many parents refuse because of the disability that the child will have later. we are talking about saving a life. in some cases, the limb has to go. that is why there are prosthetics that cost $100,000.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    Why does a prosthetic have to cost $100,000?
    "My brain's a good brain!"
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    Thirty Bills Unpaid said:
    Why does a prosthetic have to cost $100,000?
    because they have joints in them and they move like a normal extremity. they somehow hook up to nerves and get impulses from the brain to have them move like a normal limb. they look real and move like a normal extremity moves. this is what they are giving to some of the wounded vets.

    where I work they are developing prosthetics made from 3D printers that will make them ten times less expensive. with the printers they can make them any color so they can stand out. the kids that have these particular hand prosthetics love them. Those are for hands though. Our practice is lower extremity with an occasional shoulder here and there. 
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • unsungunsung I stopped by on March 7 2024. First time in many years, had to update payment info. Hope all is well. Politicians suck. Bye. Posts: 9,487
    rgambs said:
    unsung said:
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
    It's not "some bureaucrat", it's the child's doctors and hospital staff.
    Quite a distinction.
    People get second opinions all of the time.  People also go to places that are willing to treat conditions that others places will not.
  • unsungunsung I stopped by on March 7 2024. First time in many years, had to update payment info. Hope all is well. Politicians suck. Bye. Posts: 9,487
    Thirty Bills Unpaid said:
    unsung said:
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
    Not true.

    Some parents are completely unfit to parent.
    Some are, but not in this case.
  • oftenreadingoftenreading Victoria, BC Posts: 12,845
    unsung said:
    rgambs said:
    unsung said:
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
    It's not "some bureaucrat", it's the child's doctors and hospital staff.
    Quite a distinction.
    People get second opinions all of the time.  People also go to places that are willing to treat conditions that others places will not.
    If you think that this child has not had a second opinion, and more likely half a dozen or more second opinions, then you don't know much about how the medical and the legal systems operate. 
    my small self... like a book amongst the many on a shelf
  • unsungunsung I stopped by on March 7 2024. First time in many years, had to update payment info. Hope all is well. Politicians suck. Bye. Posts: 9,487
    I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.


  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    unsung said:
    Thirty Bills Unpaid said:
    unsung said:
    Thirty Bills Unpaid said:
    Yah Unsung... I'm struggling to find your spin on this situation as well.
    There is no spin.  I am being upfront.

    These parents raised the money to have their child treated in the States, but a government goon is telling them the better option is death.  This is exactly the Death Trials or whatever that idiot Sarah Palin was talking about.

    Parents know what is best for their children, not some bureaucrat. 
    Not true.

    Some parents are completely unfit to parent.
    Some are, but not in this case.
    Maybe not, but you made a blanket statement I responded to.

    I get why... but in this case... we have parents clinging to hope where there is none.
    "My brain's a good brain!"
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    gimmesometruth27 said:
    Thirty Bills Unpaid said:
    Why does a prosthetic have to cost $100,000?
    because they have joints in them and they move like a normal extremity. they somehow hook up to nerves and get impulses from the brain to have them move like a normal limb. they look real and move like a normal extremity moves. this is what they are giving to some of the wounded vets.

    where I work they are developing prosthetics made from 3D printers that will make them ten times less expensive. with the printers they can make them any color so they can stand out. the kids that have these particular hand prosthetics love them. Those are for hands though. Our practice is lower extremity with an occasional shoulder here and there. 
    The nerve connection is impressive. Such advancement is mind numbing. What that tells me is there are way smarter people than me.
    "My brain's a good brain!"
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    unsung said:
    I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.


    damn government. always has to get involved.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    sorry unsung. the kid has a genetic mitochondrial disorder. this is fatal. he has been in intensive care for 9 months. i guarantee he has racked up a medical bill greater than the money they have raised. at what point is this a waste of resources knowing the kid is never going to thrive?
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    the kid would probably not even survive the flight to the us without extensive treatment on the plane. he is on life support.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    from the article.

    "It is also hugely difficult for any clinically-trained professional to be asked to treat a child who has no chance of survival or even improvement in his quality of life", the hospital added.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    unsung said:
    I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.


    If it's not costing the government anything and the financial burden rests solely on the parents... I would agree with this.

    If it was my child... I'd go to the ends of the universe before throwing in the towel. And I'd be prepared to live with the aftermath as well (financial ruin being one of them).
    "My brain's a good brain!"
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    to the people angry about this, where did you stand on terri schiavo?
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    gimmesometruth27 said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    "My brain's a good brain!"
  • rgambsrgambs Posts: 13,576
    Thirty Bills Unpaid said:
    gimmesometruth27 said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Monkey Driven, Call this Living?
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    Thirty Bills Unpaid said:
    gimmesometruth27 said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    the courts did not decide to pull the plug. they upheld the opinion of the doctors that that treatment is experimental and most likely would not help. there is no saving this child and there is no hope for improvement. this is a mitochondrial disorder. this is not fake news. this is reality.

    to me, unsung's intent was to say that this is what is going to happen in america if we adopt a single payer system. what happened in this case is rare, even by european standards. this is the exception and not the rule.

    as it is here now in america, insurance is the one that decides on care. doctors want to try things and insurance companies deny things as experimental. this is my career. i deal with this shit on a daily basis. in america it is not the government getting in between patients and doctors. it is the insurance company doctors doing that. 
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    rgambs said:
    Thirty Bills Unpaid said:
    gimmesometruth27 said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Fair enough. I guess I keep looking at it from the parents' perspective.
    "My brain's a good brain!"
  • gimmesometruth27gimmesometruth27 St. Fuckin Louis Posts: 23,303
    the parents need to accept the reality of their situation. there would be more dignity in it. 

    if that makes me sound cold, i am sorry. but this is the reality they are in.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • Thirty Bills UnpaidThirty Bills Unpaid Posts: 16,881
    gimmesometruth27 said:
    the parents need to accept the reality of their situation. there would be more dignity in it. 

    if that makes me sound cold, i am sorry. but this is the reality they are in.
    We are on the sidelines though.

    The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.
    "My brain's a good brain!"
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