Trump and Pope trying to save baby

[Sparko]

Prolonging a child's suffering is child abuse.

In your example, I have options, a variety of experiences, an end to the pain, and the potential for a relatively normal lifespan. From what the doctors have said, the child has none of that. We have real world examples of terminally ill adults who could have gone on longer with their suffering but chose not to, and those were people with normal brain functioning and agency. I just don't see how it's unreasonable that it may be preferable for an infant who has no agency, significant brain damage, and unable to experience much except for suffering to be euthanized instead of undergo untested procedures to extend its life for a few weeks.

But you don't know any of that regarding the kid. My original point is that it is up to the parents to decide. Not you, not me, not the doctors, not the government.

I don't want the government deciding for me when I have "had enough" and pull the plug. that decision is not even for the doctors. It is for me and my family. I have a health living will set up, where if I am incapacitated and can't make my own decisions, that a family member will make the decisions for me. Not the government, not the doctors.

The parents should be able to listen to the doctor's advice and then make their own decision.

What the heck is with you liberals and killing babies? And claiming it is for their own good on top of it. It's like it is a sport or something.

[EvoUK]

If I told you that you were going to die but I could give you an extra few weeks, and not only that but instead of dying unconscious in a coma, you could be awake but there might be some pain, would that be mistreating you? Would you turn it down?

Thats nothing like this situation- it's a heavily brain damaged baby with no chance of anything other than prolonging the inevitable, and even that is a tiny chance, the tiny chance also coming with a larger chance of increased pain he currently has no capability of feeling.

I stated in my first post but I'll say it again- I feel so sorry for the parents to be in this position and I do not have any doubts that they have the best intentions. I've heard them interviewed on the radio and it's heart wrenching. However, this isn't a solution. There isn't one.

I still need to find the statement from the judge.

I do want to find out why they can't take him home to die in their house though.

[Sparko]

so now apparently the doctors are saying different, and appealing to get the baby treatment. (same hospital that first wanted to let him die)


Hope for Charlie Gard as Great Ormond Street seeks to 'explore new evidence' in fresh court hearing

Great Ormond Street Hospital has said it has applied to the High Court for a fresh hearing in the case of terminally-ill baby Charlie Gard "in light of claims of new evidence relating to potential treatment for his condition".

A GOSH spokesman said "we believe, in common with Charlie's parents, it is right to explore this evidence".
http://www.telegraph.co.uk/news/2017...-new-evidence/

[Psychic Missile]

But you don't know any of that regarding the kid. My original point is that it is up to the parents to decide. Not you, not me, not the doctors, not the government.

I don't want the government deciding for me when I have "had enough" and pull the plug. that decision is not even for the doctors. It is for me and my family. I have a health living will set up, where if I am incapacitated and can't make my own decisions, that a family member will make the decisions for me. Not the government, not the doctors.

The parents should be able to listen to the doctor's advice and then make their own decision.

What the heck is with you liberals and killing babies? And claiming it is for their own good on top of it. It's like it is a sport or something.

Parents are not allowed to do whatever they like with their children. If the parents' decision results in their child suffering, that is child abuse and should be stopped by the government. As an adult, you are able to make informed decisions about how you and your body are treated in terminal circumstances. An infant is not able to do this, so they need an advocate. It's no different from parents refusing cancer treatment in favor of prayer or natural remedies.

I don't think it's appropriate to joke about murdering infants when we are having a serious discussion about euthanasia.

[EvoUK]

Found a link:

...

It seemed, at the outset of this hearing, that there might have been a lone voice in the USA that was offering what has been described in some reports as “pioneering treatment”. Understandably, Charlie’s parents have grasped that possibility, they have done all that they could possibly have done, they have very publicly raised funds. What parents would not do the same? But I have to say, having heard the evidence, that this case has never been about affordability, but about whether there is anything to be done for Charlie. At one stage GOSH got as far as deciding to apply for ethical permission to attempt nucleoside therapy, a treatment that has never been used on patients with this form of MDDS. But by the time that decision had been made, Charlie’s condition had greatly worsened and the view of all here was that his epileptic encephalopathy was such that his brain damage was severe and irreversible, that treatment was potentially painful but incapable of achieving anything positive for him.

I was aware that I was to hear evidence from the doctor in the USA who was,reportedly, offering what had been referred to as pioneering treatment. Before he gave evidence, I encouraged the treating consultant at GOSH to speak with him,which she was able and willing to do. I am truly grateful to these experts for the time that they have given to this case. The outcome of that discussion is illuminating and the doctor in the USA said the following:

“Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encelopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.”

However, the US doctor made it clear that, were Charlie in the US, he would treat him if the parents so desired and could pay for it. As I have already said, funding in this case is not in issue. The US doctor also confirmed during this telephone conversation that he had never treated with nucleoside therapy anyone who had encephalopathy, therefore he was unable to indicate from any scientific basis whether a patient with encephalopathy would respond positively.

Charlie suffers from the RRM2B mutation of MDDS. No one in the world has ever treated this form of MDDS with nucleoside therapy, although patients with a different strain, TK2, have received nucleoside therapy, with some recorded benefit.In mouse models the benefit to TK2 patients was put at 4% of life expectancy. There is no evidence that nucleoside therapy can cross the blood/brain barrier, which it must do to treat RRM2B, although the US doctor expressed the hope that it might do so. There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage. I dare say that medical science may benefit, objectively, from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.

The GOSH team believe that Charlie can probably experience pain, but is unable to react to it in a meaningful way. Their evidence was that being ventilated, being suctioned, living as Charlie does, are all capable of causing pain. Transporting Charlie to the USA would be problematic, but possible. Subjecting him to nucleoside therapy is unknown territory, for it has never even been tested even on mouse models, but it may (or may not) subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all agree,then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?

It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity. I want to thank the team of experts and carers at GOSH, and others who cannot be named, for the extraordinary care that they have provide to this family. Most importantly of all, I want to thank Charlie’s parents for their brave and dignified campaign on his behalf, but more than anything to pay tribute to their absolute dedication to their wonderful boy, from the day that he was born.

link

[Sparko]

Parents are not allowed to do whatever they like with their children. If the parents' decision results in their child suffering, that is child abuse and should be stopped by the government. As an adult, you are able to make informed decisions about how you and your body are treated in terminal circumstances. An infant is not able to do this, so they need an advocate. It's no different from parents refusing cancer treatment in favor of prayer or natural remedies.

I don't think it's appropriate to joke about murdering infants when we are having a serious discussion about euthanasia.

as a person in a coma I would not be able to make decisions about how I am treated in terminal circumstances. that was the whole point of the example.

Yes parents can make decisions for their children's healthcare and it is not child abuse. It's the law here in the USA. In cases like Christian Scientists, they can even withhold medical care for their children. It is their right. Here we have parents WANTING to give healthcare to their child and the government saying "no" - completely backwards.

Also they say he is too brain damaged to have any quality of life. So it is pretty doubtful that he has any pain, since the doctors are not giving him anything for any pain. It should be up to the parents to decide. Also as I posted above, NOW the doctors are saying that he should get treatment. Only the government is trying to stop it.

[Psychic Missile]

as a person in a coma I would not be able to make decisions about how I am treated in terminal circumstances. that was the whole point of the example.

Yes parents can make decisions for their children's healthcare and it is not child abuse. It's the law here in the USA. In cases like Christian Scientists, they can even withhold medical care for their children. It is their right. Here we have parents WANTING to give healthcare to their child and the government saying "no" - completely backwards.

Also they say he is too brain damaged to have any quality of life. So it is pretty doubtful that he has any pain, since the doctors are not giving him anything for any pain. It should be up to the parents to decide. Also as I posted above, NOW the doctors are saying that he should get treatment. Only the government is trying to stop it.

You would have an advance directive if you were in a coma. We have no idea what the child would want because it is not communicative. People have gone to jail in the USA because they refused treatment for their children. I would hope that a government will prevent parents from increasing the suffering in a child's life. I have no idea about the specifics of the child's medical condition. I trust a board of doctors to judge a child's potential for treatment more than parents, so whatever they think is right I'm inclined to agree.

[Teallaura]

http://www.lifenews.com/2017/07/07/c...back-to-court/

So, the short version is that there is 'new' evidence that there may be a possibility of treatment. The hospital is siding with the parents to request the court reconsider.

The rest of my post is opinion:

I suspect what happened is that medical experts outside the EU weren't backing the hospital and that the political heat was getting much too high.

As to why the hospital refused to let the baby go home, that is not clear in any report I've read. But it's not rocket science, either. Once out of the hospital, nothing stops the family from hopping a plane - or at least that risk was too great for the hospital's taste at the time. Forget humanitarianism - having that baby successfully treated at that point would have made them look stupid - and cruel.

So why the 180? My guess is they are doing PR, not medicine. The US President, The Pope and the Italian government were all bringing a white hot spotlight - which got it off the local papers and social media and hit the international news in a very scary way.

The hospital's board is invested in the untreatable/not in best interest theme - it looks like it got enough attention that medical experts worldwide were beginning to question the decision. It's either to their credit that they are rethinking the whole thing or that they realized they were on the losing end of both the PR and medical fights.

[Catholicity]

Thats nothing like this situation- it's a heavily brain damaged baby with no chance of anything other than prolonging the inevitable, and even that is a tiny chance, the tiny chance also coming with a larger chance of increased pain he currently has no capability of feeling.

I stated in my first post but I'll say it again- I feel so sorry for the parents to be in this position and I do not have any doubts that they have the best intentions. I've heard them interviewed on the radio and it's heart wrenching. However, this isn't a solution. There isn't one.

I still need to find the statement from the judge.

I do want to find out why they can't take him home to die in their house though.

The Parents SHOULD have the right to a 2nd opinion, and THEY should havve the right to tke the baby home and provide all comfort measures given to anyone on hospice.

[Teallaura]

But that's the point. There is no chance he can live. The untested 'treatment' will not cure anything, it will simply extend the life by a few weeks or months in the unlikely & unproven chance it even works. The doctor offering the 'treatment' has come out and said this.

Also, restoring any brain function merely increases the likelihood that the child will experience the pain of its current existence. If the pain would mean it'll survive & get better one could argue it would be worth it. As this isn't the case there is no medical or moral argument to do so.

Except, this is not necessarily true - and the hospital is now siding with the parents for reconsideration in light of 'new' evidence.

Now, either there has been a major medical breakthrough in the last 48 hours or the hospital's board hadn't considered all the possible evidence to begin with. Which is understandable - no one or group can be expert at absolutely everything. The problem, of course, is the hospital made absolute pronouncements about the child's condition that are now very much in question.

Medical science is not omniscient nor does it have a crystal ball which gives 100% reliable predictions of outcomes. Courts are even less omniscient - which is why having a lopsided system is an extremely bad idea.

[demi-conservative]

The Parents SHOULD have the right to a 2nd opinion, and THEY should havve the right to tke the baby home and provide all comfort measures given to anyone on hospice.

Libtards' big government-Daddy says no!!!

[demi-conservative]

Except, this is not necessarily true - and the hospital is now siding with the parents for reconsideration in light of 'new' evidence.

Backpedal of theirs was fast

[EvoUK]

http://www.lifenews.com/2017/07/07/c...back-to-court/

So, the short version is that there is 'new' evidence that there may be a possibility of treatment. The hospital is siding with the parents to request the court reconsider.

Yes, my understanding is that given the increased world wide reading of this case, medical scientists also working on this type of therapy have come forward since the initial court ruling.

Given their claims (still not of a cure, but of an increased likelihood of the 'treatment' passing through the blood/brain barrier), the hospital has quite rightly asked the court to look into it.

link

The rest of my post is opinion:

I suspect what happened is that medical experts outside the EU weren't backing the hospital and that the political heat was getting much too high.

As to why the hospital refused to let the baby go home, that is not clear in any report I've read. But it's not rocket science, either. Once out of the hospital, nothing stops the family from hopping a plane - or at least that risk was too great for the hospital's taste at the time. Forget humanitarianism - having that baby successfully treated at that point would have made them look stupid - and cruel.

So why the 180? My guess is they are doing PR, not medicine. The US President, The Pope and the Italian government were all bringing a white hot spotlight - which got it off the local papers and social media and hit the international news in a very scary way.

The hospital's board is invested in the untreatable/not in best interest theme - it looks like it got enough attention that medical experts worldwide were beginning to question the decision. It's either to their credit that they are rethinking the whole thing or that they realized they were on the losing end of both the PR and medical fights.

I would say that is a highly uncharitable viewpoint, and I do not see the reason yet why it would be justified.

[EvoUK]

The Parents SHOULD have the right to a 2nd opinion

They did. Hence the existence of this now famous court case.

and THEY should havve the right to tke the baby home and provide all comfort measures given to anyone on hospice.

I initially agree, I cannot find an explicit reason why he is being kept in the hospital- switching off the machines keeping him alive is hardly the best way to go, but given the law the doctors have little other choice.

[EvoUK]

Except, this is not necessarily true - and the hospital is now siding with the parents for reconsideration in light of 'new' evidence.

Sort of- since the case has become more widely known other medical researchers have come forward, and the hospital is taking the correct course in looking into their claims.

From what I've seen of them it doesn't look much different to the one already put forward, however I'll wait to hear what the decision is.

Now, either there has been a major medical breakthrough in the last 48 hours or the hospital's board hadn't considered all the possible evidence to begin with. Which is understandable - no one or group can be expert at absolutely everything. The problem, of course, is the hospital made absolute pronouncements about the child's condition that are now very much in question.

Not really. The hospital made absolute pronouncements on the damage caused to his brain, and how the treatment put forward will not cure this, nor has it been proven it would do anything- it is still an untested procedure, not proven to work on his disease even in mice.

Unsurprisingly several medical researchers are working on forms of this drug individually and seperayely, and given the widespread knowledge of this case have come forward, and the hospital is looking into their claims.

I wait to hear what the decision is, and I hope it is a good one, however the information I have seen thus far doesn't seem significantly different to the initial drug- i.e. Unproven and will not cure anything, so I am not holding my breath unfortunately.