Baby Charlie Gard's life

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Lorac

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So sad but it was clearly the only decision left. I hope that Charlie and his parents are afforded privacy and peace as he is moved to palliative care and they can say goodbye peacefully. I do worry that some of the families supporters are reacting too emotionally to this decision and that GOSH and their staff and patients are allowed to carry on doing the amazing work they do without any repercussions from this decision.
 

VGThuy

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I think we're just getting started. Gard's parents will forever blame their doctors, the UK system, and the courts for this (directed anger and grief) and people will fan the flames to make it about single-payer healthcare and death panels.
 

Vash01

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I think we're just getting started. Gard's parents will forever blame their doctors, the UK system, and the courts for this (directed anger and grief) and people will fan the flames to make it about single-payer healthcare and death panels.

It's a very accurate description but I am hoping that some day they will be able to move on with their lives.

I hope that it won't come to this, after the grieving process allows them some perspective.

For their sake I hope they will find that perspective and find peace.
 

judiz

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The hardest decision anyone will ever have to make is to allow a loved one to die with dignity whether it be a child, sibling, parent or pet. My mom made that decision in 2009 when she allowed my dad's life support to be turned off knowing he did not want to spend his life being kept alive by machines. I imagine Charlie's parents will live with "what if" for quite a long time. I pray they eventually find peace within themselves.
 

becca

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Well, she voted for a politician who is using the life of this child to further his own administration's agenda, so......
I never voted for Trump. I voted third party as in Not Trump. It is not my fault Hillary could not convince people to vote for her. It thought the fact that people like me were disgusted enough to vote third party meant for sure she would win.

However she managed to annoy some of her own most natural supporters. It's also not my fault that the Democrats have done their darndest to ignore Middle America.

And in general I think I said if I were Charlie's parents I believe I would have listened to the doctors.
 
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once_upon

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Unfortunately these parents will have a hard time with Charlie's life and death for the length of their lifetimes. Every time a similarly case arises, every time the U.S. politicians decry universal care, every anniversary of rulings, the anniversary of his birth, the anniversary of his death.. people won't leave them alone to mourn.
 

StitchMonkey

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Without actual statements from parents, I can only make an assumption that perhaps these parents now know they are both carriers of this genetic disorder and may feel that Charlie is their only chance a child. That makes it a million times harder.

It may not be. I have seen this referred to as a mitochondrial issue... and there are some really cool treatments in that area. They can basically use donor mitochondria and create a child with arguably three parents. I don't know if it is an option in their case, but it is possible.
 

misskarne

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Here is the story from The Guardian

This is exactly what I was concerned about. That no matter what, it will always somehow be the hospital's fault. The parents do not at all seem able to comprehend that Charlie was going to die anyway. And there seem to be an awful lot of people around them who seem keen to encourage them to think that way.

I notice people like @AxelAnnie have not acknowledged the key piece of information that the American doctor, one he actually examined Charlie, admitted that his treatment was not going to work...which meant that the UK doctors were right all along.
 

Vash01

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This is exactly what I was concerned about. That no matter what, it will always somehow be the hospital's fault. The parents do not at all seem able to comprehend that Charlie was going to die anyway. And there seem to be an awful lot of people around them who seem keen to encourage them to think that way.

I notice people like @AxelAnnie have not acknowledged the key piece of information that the American doctor, one he actually examined Charlie, admitted that his treatment was not going to work...which meant that the UK doctors were right all along.

It is sad that the couple was given false hopes by people who had no vested interest in the case (or may be they did?). It has gone down so deep in their minds that they may feel victimized for the rest of their lives. I hope that doesn't happen to them.
 

oleada

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It may not be. I have seen this referred to as a mitochondrial issue... and there are some really cool treatments in that area. They can basically use donor mitochondria and create a child with arguably three parents. I don't know if it is an option in their case, but it is possible.

I imagine it's possible to do genetic testing (amnio, CVS) and test for this mutation in future pregnancies. Of course, if the testing then says the fetus is affected, they must proceed with the decision to terminate, or not. Either one is excruciating.

Here is GOSH's statement based on the last ruling:
http://www.gosh.nhs.uk/file/23731/download?token=TWJkSxZu

I am not particularly impressed with the Columbia specialist, as it appears he was invited to see Charlie back in January, but did not until recently. He also made statements without fully examining Charlie's medical records, scans, or even the judge's previous rulings. Furthermore:

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

It just seems like a very unethical thing to do to this family.
 

Willin

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It is sad that the couple was given false hopes by people who had no vested interest in the case (or may be they did?).
I am not particularly impressed with the Columbia specialist, as it appears he was invited to see Charlie back in January, but did not until recently. He also made statements without fully examining Charlie's medical records, scans, or even the judge's previous rulings. Furthermore:
It just seems like a very unethical thing to do to this family.

From what I understand, the Doctor has a patent on the therapy he was promoting to this family. Because rare diseases are so rare, there are special rules about the cost and patents of these drugs that serves to make them very expensive. Therefore, if he could have this therapy work for more than one rare disease, he would stand to haul in a lot of $$$. For that reason, the doctor is also very supportive of a special kind of "right to try" - that is, the idea that for rare disease drugs, families should be allowed to choose to try the therapy without the therapy being vetted for actual human trials fist. (Personally, I support "Right to Try" as long as the therapy has passed the animal model and Stage I trials to ensure plausible efficacy and reasonable safety for humans)

I think what he did was highly unethical even without that provision - no doctor should give a family any hope unless/until a) they have physically examined the patient and b) they have some relevant and compelling evidence that the therapy would be effective. Otherwise, they are just manipulating vulnerable individuals, which I find highly unethical.
 

becca

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That's incredibly unethical of the doctor. Look, I want to make it clear, from the beginning I was very much I think the doctors are right. But can you imagine your a parent and you have a doctor from Columbia saying your little one could get treatment, would you want to give up? Horribleness.
 

once_upon

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I imagine it's possible to do genetic testing (amnio, CVS) and test for this mutation in future pregnancies. Of course, if the testing then says the fetus is affected, they must proceed with the decision to terminate, or not. Either one is excruciating.

Here is GOSH's statement based on the last ruling:
http://www.gosh.nhs.uk/file/23731/download?token=TWJkSxZu

I am not particularly impressed with the Columbia specialist, as it appears he was invited to see Charlie back in January, but did not until recently. He also made statements without fully examining Charlie's medical records, scans, or even the judge's previous rulings. Furthermore:



It just seems like a very unethical thing to do to this family.

From what I understand, the Doctor has a patent on the therapy he was promoting to this family. Because rare diseases are so rare, there are special rules about the cost and patents of these drugs that serves to make them very expensive. Therefore, if he could have this therapy work for more than one rare disease, he would stand to haul in a lot of $$$. For that reason, the doctor is also very supportive of a special kind of "right to try" - that is, the idea that for rare disease drugs, families should be allowed to choose to try the therapy without the therapy being vetted for actual human trials fist. (Personally, I support "Right to Try" as long as the therapy has passed the animal model and Stage I trials to ensure plausible efficacy and reasonable safety for humans)

I think what he did was highly unethical even without that provision - no doctor should give a family any hope unless/until a) they have physically examined the patient and b) they have some relevant and compelling evidence that the therapy would be effective. Otherwise, they are just manipulating vulnerable individuals, which I find highly unethical.

Ding, ding, ding. What have I been saying about what this "doctor" stands to gain for this.
 

misskarne

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I am not particularly impressed with the Columbia specialist, as it appears he was invited to see Charlie back in January, but did not until recently. He also made statements without fully examining Charlie's medical records, scans, or even the judge's previous rulings. Furthermore:



It just seems like a very unethical thing to do to this family.

From what I understand, the Doctor has a patent on the therapy he was promoting to this family. Because rare diseases are so rare, there are special rules about the cost and patents of these drugs that serves to make them very expensive. Therefore, if he could have this therapy work for more than one rare disease, he would stand to haul in a lot of $$$. For that reason, the doctor is also very supportive of a special kind of "right to try" - that is, the idea that for rare disease drugs, families should be allowed to choose to try the therapy without the therapy being vetted for actual human trials fist. (Personally, I support "Right to Try" as long as the therapy has passed the animal model and Stage I trials to ensure plausible efficacy and reasonable safety for humans)

I think what he did was highly unethical even without that provision - no doctor should give a family any hope unless/until a) they have physically examined the patient and b) they have some relevant and compelling evidence that the therapy would be effective. Otherwise, they are just manipulating vulnerable individuals, which I find highly unethical.

So! The corrupt American doctor in the screwed up US health system wanted to use Charlie as a guinea pig to line his own pockets, while the GOSH doctors in the UK system wanted to protect Charlie's rights and do what was right be him. What have you to say to this, @AxelAnnie ? @Tinami Amori ? Any here who were trying to act like this was some kind of fault in the UK system?
 

Lorac

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I am furious that the US Dr could have come over in January and given an opinion in this case. But would it have benefited him as there wouldn't have been all this publicity then as there is now. Publicity he can use to further his research to help line his pockets. It sounds like unethical behaviour to me especially as he clearly gave the parents false hope.

GOSH has always cared about Charlie first and foremost and have taken a lot of abuse for doing just that. I am sorry that Charlie's parents even in their grief are pointing fingers at GOSH. They need people around them now who care about them as people not as a way to further a cause.

Heratbreaking and sad. :(
 

Lorac

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Incredibly restrained statement from GOSH. You can read in between the lines about the U.S. doctor. :blah:

All GOSH want to do is help sick children and it does so with expertise 2nd to none. They have taken so much abuse online and in print in regards to this case but still maintained an amazing amount of dignity and compassion throughout as did their legal team.

The US Dr does indeed 'have much upon which to reflect ' but I doubt he will. I strongly suspect he knew back in January that his experimental procedures were of no use to Charlie but couldn't resist looking like some kind of white knight riding to the rescue when he knew there was none.

Charlie's parents need to grieve at the moment but hopefully they can come through it together and set up a foundation as they have said they would with the money donated to help Charlie.
 

misskarne

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GOSH's statement is so dignified and powerful and it makes me want to find this American doctor, punch him in the face, and then do something incredibly painful to him.
 

hanca

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It is sad that the couple was given false hopes by people who had no vested interest in the case (or may be they did?). It has gone down so deep in their minds that they may feel victimized for the rest of their lives. I hope that doesn't happen to them.
The US doctor has vested interests. I read that he is financially invested in the drug he wanted to experiment with.
 

AxelAnnie

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The US doctor has vested interests. I read that he is financially invested in the drug he wanted to experiment with.
That does not make him suspect. I fact, it could be the opposite. He has his money where his mouth is. Maybe he was trying to help. Maybe helping Charlie would help to pave a break though with this horrible disease.
 
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