Baby Charlie Gard's life

[Willin]

@VIETgrlTerifa Part of the reason that argument exists is because of cases like this - where a doctor tries (against all evidence available at the moment) to recruit patients by using extraordinary claims or misleading patients who otherwise has no hope. They don't want doctors and researchers exploiting the feelings of patients and their families when all it would likely cause the patient is harm and the Doctor/Researcher knows it.

 

[AxelAnnie]

In all these posts about this baby's pain No one has been able to provide a link to a single medical source showing Charlie is in pain.

 

[once_upon]

You cannot compare a parent trying to keep their child alive with medical treatment, to a parent sexually abusing their child. I am sorry it's not the same thing all.

This little one cannot speak or say something. So we don't know really what he wants. I am not saying there aren't problems with keeping someone alive no matter what.

But what I am saying is I would give more latitude towards parents in this type of situation. I am saying I am uncomfortable with the courts mandating a parent must allow their child to die. And I actually DID go back and forth on this.

I am extremely, extremely uncomfortable with the parents keeping this child and this case alive without considering the harm they are doing to the child.

Just because medical procedures like ventilators, feeding tubes, antibiotics for infections, IVs, hyperalimentaion (specific nutritional support IV), IV medications, etc DOES NOT make it the right or do no harm premise.

If you have no experience in administering these medical therapies, you have zero concept if it is or is not causing harm.

Put down that nasogastric tube, insert that endotrachial tube, start that IV after 12 attempts because you can't find a freaking vein, place the child under anaesthesia to insert that central vendors catheter or infusaport, position the baby for the fifty xray, clean the excoriated bottom from the GI formula intolerance and bleeding from the gut and the thousands of other things this precious baby is undergoing.

Have any of you experienced having an N/G, ET, gastronomy button tube inserted? Does, did that make you comfortable? I'm guessing 100% say no and it was awful. So times that by every single day that these parents are doing because they don't accept the diagnosis and prognosis. How many of you have had multiple number daily IV and or phlebotomy sticks, it's its separate hell.

Courts DO NOT take these types of cases lightly. They are debated from all standpoint. I firmly believe it has been ruled on the first do no harm underlying rule.

As a parent whose baby died in utero with as many chromosomal studies done post mortem, I can relate to wanting a child to live, wanting an answer, wanting things to be different. But it wasn't for my precious baby girl nor will it be for Charlie. This is not taking away from the parents anything that was not already taken. He isn't and would never be a normal chromosomal intact child.

Let me repeat that...his DNA is not compatible with life. Even with modern medicine compatible with life. Not, despite what quackery hope this researcher might be presenting. Not compatible with life.

 

[VGThuy]

In all these posts about this baby's pain No one has been able to provide a link to a single medical source showing Charlie is in pain.

I'm pretty sure people have posted links throughout these pages. Anyway, here's the full opinion by the European Court of Human Rights with all the facts presented including relevant passages of the medical reports given to the Court as evidence:

http://www.marinacastellaneta.it/bl.../06/GARD-AND-OTHERS-v.-THE-UNITED-KINGDOM.pdf

Most (all) of us don't have access to the full medical reports on either side probably for privacy reasons. You would think the various courts who made these rulings carefully considered the numerous reports given to them on both sides. Of course, some have chosen to latch on to one report from one doctor from New York but even then we don't have a full medical report either. Just partial information that reporters, who also have limited access, have given us.

 

[once_upon]

I believe that the results of diagnostic testing and responses to painful stimuli are part of the court documents. In the U.S. you would find that HIPPA regulations would restrict and or make it illegal for doctors and hospital and probably courts to release those documents. I assume some semblance of those regulations exist in Europe.

The "articles" on the lack of response to painful stimuli is based upon the parents statements and not substantiated by any diagnostic testing.

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.

 

[VGThuy]

Update on the case:

http://www.telegraph.co.uk/news/201...-back-high-court-judge-analyses-new-evidence/

 

[once_upon]

I hate typing on my tablet and autocorrect/grammatical errors or certain word placements (of, this, etc ) are evident in my posts.

 

[Japanfan]

In all these posts about this baby's pain No one has been able to provide a link to a single medical source showing Charlie is in pain.

http://www.marinacastellaneta.it/bl.../06/GARD-AND-OTHERS-v.-THE-UNITED-KINGDOM.pdf

Dr B, Consultant Paediatric Intensivist at GOSH, gave evidence that CG was so damaged. . . He stated that CG can probably experience pain, but is not able 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.

The judge concluded that subjecting CG to nucleoside treatment would be to enter unknown territory and could possibly subject him to pain,

I can only hope that in time they will come to accept that the only course now in Charlie's best interests is to let him slip away peacefully and not put him through more pain and suffering”.

 

[icie]

It's simple - the Courts are acting on behalf of the child, because that's what they do in civilized countries where children have rights. Maybe those rights aren't always recognized in the US, but they are in Britain where Charlie lives.

Now a days many Politian's in the US, love the fetus but hate the child. What is going to happen if Charlie survives the experiments done on him in the US, but his health status stays the same or deteriorates? Who's paying for the health care for this new US citizen?

 

[VGThuy]

Now a days many Politian's in the US, love the fetus but hate the child. What is going to happen if Charlie survives the experiments done on him in the US, but his health status stays the same or deteriorates? Who's paying for the health care for this new US citizen?

A retort I most remember is about how it's about the sanctity of life, not about the right to have a good life. Seriously.

 

[AxelAnnie]

http://www.marinacastellaneta.it/bl.../06/GARD-AND-OTHERS-v.-THE-UNITED-KINGDOM.pdf

Sorry...no where does anyone say the baby feels pain. No one knows what he feels. The Court and hospital officials say they don't want to inflict more pain.....something which is not measurable....by allowing the parents to take him out of the country.

 

[VGThuy]

Sorry...no where does anyone say the baby feels pain. No one knows what he feels. The Court and hospital officials say they don't want to inflict more pain.....something which is not measurable....by allowing the parents to take him out of the country.

The word "more" means you're admitting that Charlie is experiencing pain, which contradicts your first sentence and most likely not what you wanted to say. In this 26 page opinion, there are fourteen mentions of the word "pain" with about eleven of those talking about Charlie and the other mentions are about the legal standard and legal tests used to make a decision.

They arrived at this conclusion on reviewing the decision of the High Court which considered extensive, expert evidence and heard from all concerned with CG’s daily care, who concluded, unanimously that it was likely he was being exposed to continued pain, suffering and distress

Dr B, Consultant Paediatric Intensivist at GOSH, gave evidence that CG was so damaged that there was no longer any movement (noting that there was no evidence of a sleep/wake cycle). He said that there were no further treatments available to CG which could improve him from his current situation and that this was the opinion of the entire treatment team, including those from whom a second opinion had been obtained. He stated that CG can probably experience pain, but was unable to react to it in a meaningful way

When medical professionals use the word "probably" it means "probable" and it does not mean "maybe" the way lay people use the word "probably".

The judge concluded that subjecting CG to nucleoside treatment would be to enter unknown territory and could possibly subject him to pain, accepting the evidence that: “22...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.”

GOSH and CG’s guardian underlined that in accordance with domestic and international law, the best interests of the child were of paramount importance. They repeated their arguments that taking Charlie to America for experimental treatment was not in his best interests. CG’s guardian underlined that even if the proposed “significant harm” test were GARD AND OTHERS v. THE UNITED KINGDOM DECISION 9 applied, the applicant’s claim would still fail because as stated by the Court of Appeal, continuing to maintain his life and taking him to America would be likely to expose him to continued pain, suffering and distress

Even if you don't want to believe despite statements to the contrary by the medical experts who have been treating Charlie this whole time that he's currently experiencing pain, the fact that the treatment is capable of causing pain is also a crucial issue.

As the Judge whose sad duty it is to have to make this decision, I know that this is the darkest day for Charlie’s parents who have done everything that they possibly can for him and my heart goes out to them as I know does the heart of every person who has listened to this tragic case during the course of the past week or so. I can only hope that in time they will come to accept that the only course now in Charlie’s best interests is to let him slip away peacefully and not put him through more pain and suffering”.

The court said: “114... it is plain that the [High Court] judge was not invited to consider the law in the way that is now put before this court let alone to consider the existence of “category 2” cases with the need to establish a threshold for significant harm. I have made extensive reference to the evidence as recorded by the judge regarding Charlie’s current state. It is clear, in my view, that if the judge had been invited to form a conclusion on whether Charlie was or was not suffering significant harm currently, that finding would have been made. At paragraph 49 the judge records the evidence of the doctors, the medical staff who have knowledge of the current state of Charlie’s life in the hospital and each of the other experts as follows: “In some parts of the media this has been referred to as “pioneering treatment”. In fact, this type of treatment has not even reached the experimental stage on mice let alone been tried on humans with this particular strain of MDDS. It is the view of all those who have treated and been consulted in relation to Charlie in this country and also in Barcelona that such treatment would be futile, by which I mean would be of no effect but may well cause pain, suffering and distress to Charlie. This is the principal issue with which I have to grapple in this case [emphasis added]”.

In any event, the Court does not consider this question to be decisive in the circumstances of the case. That is because even if the test suggested by the applicants is the appropriate one, the Court of Appeal and Supreme Court concluded that there was a risk of “significant harm” to CG (see paragraphs 30 and 36). They arrived at this conclusion on reviewing the decision of the High Court which considered extensive, expert evidence and heard from all concerned with CG’s daily care, who concluded, unanimously that it was likely he was being exposed to continued pain, suffering and distress.

The above paragraphs talk about finding Charlie to be suffering pain and will suffer more pain with the experimental treatment that has not even reached the experimental stage on mice let alone been tried on humans with this particular strain of MDDS. This goes back to the point about ethics and who can say a child who cannot give express or even implicit consent to pre-experimental treatment. That's a very serious issue in of itself and should not be pushed away.

With regard about whether pain is measurable, well that's a question that multiple medical experts considered and there's a reason they thought it would be in Charlie's best interest to not continue treatment. You can think or feel how you want, but your feelings don't have the same weight of credibility.

 

[becca]

Once again, me saying I am uncomfortable with the what the courts deciding. D oesn't mean I think the parents are making the right decision.

 

[Japanfan]

Once again, me saying I am uncomfortable with the what the courts deciding. D oesn't mean I think the parents are making the right decision.

You're contradicting yourself, unless you mean that parents should be entitled to make 'wrong' decisions that harm their child. To give parents such an entitlement could be tantamount to endorsing abuse and neglect.

What do you think about parents who would deny a child a life-saving blood transfusion because it is against their religious beliefs?

In this case the court ruled that an infant should receive a blood transfusion:
http://www.theblaze.com/news/2014/0...sfusion-against-parents-religious-objections/

 

[allezfred]

This little one cannot speak or say something. So we don't know really what he wants. I am not saying there aren't problems with keeping someone alive no matter what.

Well I guess we wait until Charlie says "I am in pain. Let me die" then.

 

[antmanb]

This being one of the shortcomings of a Single Payer Health Care system.

What does that have to do with the law in the UK. Can you really be this stupid or are you just trolling?

 

[misskarne]

This little one cannot speak or say something. So we don't know really what he wants. I am not saying there aren't problems with keeping someone alive no matter what.

And Charlie will never speak or say something. He will never hear his parents talk to him. He will never see his parents. He will never be able to eat on his own, breathe on his own, go to the toilet on his own, function on his own. He will never walk, never talk, never even smile at his parents. But he can feel pain.

If this was a dog, many of the self-righteous prats here would be disgusted and demanding that the owner allow the dog to die with dignity. Why do we not allow the same for a human being? Nothing will be achieved by dragging this on. Nothing. And certainly not anything that is good for Charlie.

 

[Angelskates]

And Charlie will never speak or say something. He will never hear his parents talk to him. He will never see his parents. He will never be able to eat on his own, breathe on his own, go to the toilet on his own, function on his own. He will never walk, never talk, never even smile at his parents. But he can feel pain.

If this was a dog, many of the self-righteous prats here would be disgusted and demanding that the owner allow the dog to die with dignity. Why do we not allow the same for a human being? Nothing will be achieved by dragging this on. Nothing. And certainly not anything that is good for Charlie.

Actually what is being proposed is not like euthanising a pet, it's "better"/"worse" depending on your view - it's more natural, I guess is the best way to say it. Though I am totally for euthanising pets when deemed necessary, I am not for euthanising children (I am pro-euthanasia, though, but think like the death penalty it's one of those incredibly difficult things to make law because humans make mistakes and do the wrong thing etc.). No one is saying Charlie should be euthanised, but that he should be allowed to die naturally without being a guinea pig. If those Christians/others believe God wants him alive, take him off the machines, and let him be naturally, if he lives, it's God's will, if he dies, it's God's will. God does not take pleasure in pain and believers believe Charlie will go to a better place anyway. I don't understand the argument for those who are not Charlie's parents, who understandably do want to cling to any kind of hope. I think the US doctor has up talked and misled them.

There is no way to spare Charlie's suffering. He will be in pain until he dies. Keeping him alive artificially without hope of improvement is not in his best interests and it will now be the US taxpayers who will foot the bill if he is allowed to. Who is paying for the experimental treatment? Is that doctor working pro bono? The funds the parents have raised won't go far.

 

[allezfred]

What does that have to do with the law in the UK. Can you really be this stupid or are you just trolling?

Well, she voted for a politician who is using the life of this child to further his own administration's agenda, so......

 

[rfisher]

"Surrogate decision-makers" is a term I have never before heard, and certainly something that is not in play in the US. As far as I know the court can intervene if the parents withhold care (i.e. a transfusion). But not the other way around.

You are incorrect. Parents are considered the surrogate for a minor child or even an adult child over whom they have guardianship. Surrogate is what every consent form has listed. I've signed many of them. The courts can intervene to treat or to not treat as the case may be.

 

[skatesindreams]

There is no way to spare Charlie's suffering. He will be in pain until he dies. Keeping him alive artificially without hope of improvement is not in his best interests and it will now be the US taxpayers who will foot the bill if he is allowed to. Who is paying for the experimental treatment? Is that doctor working pro bono? The funds the parents have raised won't go far.

Even should the "experimenting" doctor be offering his services "pro bono", the cost of caring for and supporting Charlie is astronomical; another million dollars every few weeks, at least.

Who is paying for this?
Should the bill(s) be sent directly to Donald Trump; so that they won't fall to the "taxpayers"? (that means all of us)

 

[once_upon]

You are incorrect. Parents are considered the surrogate for a minor child or even an adult child over whom they have guardianship. Surrogate is what every consent form has listed. I've signed many of them. The courts can intervene to treat or to not treat as the case may be.

I'm reminded of the baby in the NICU where I worked years ago, approximately 37 years ago. The premature infant's mother was 14. She was the one who signed consents for procedures/surgery for the premie yet her mother needed to sign for the mother's medical care. IIRC - the hospital requested court assigned guardians for both to look for the good of both.

 

[kittyjake5]

I just got a news blurb from Fox News that Charlie's parents have withdrawn their request to bring the baby to the US. Sorry no link I am on the train and can't link

 

[CassAgain]

Here is the story from The Guardian

 

[skatesindreams]

It's very sad; yet, given the circumstances. the best decision, IMO.
Peace, to Charlie and his parents.

 

[rfisher]

I'm reminded of the baby in the NICU where I worked years ago, approximately 37 years ago. The premature infant's mother was 14. She was the one who signed consents for procedures/surgery for the premie yet her mother needed to sign for the mother's medical care. IIRC - the hospital requested court assigned guardians for both to look for the good of both.

There was a similar situation at ARK Children's Hospital when Micah was there, except the mother was 12. She was signing critical consent for her very ill preemie and couldn't sign anything for herself. Moreover, the child had no clue what she was signing. Neither did her mother. The hospital essentially had to make all decisions for everything. The hospital administration was appointed as temporary guardian. So, being a "parent" doesn't mean anything in regard to minor's healthcare needs.

I feel for the parents and the child in the case in question. These parents may survive this, but they will never heal or get over this. It will scar them for the rest of their lives. It would be nice to say maybe they can heal, but that's a falsehood. I hope they can compartmentalize enough to live with the events surrounding their child's very short life.

 

[snoopy]

I don't think this was mentioned before but the US doctor said his therapy was no longer a viable option.

The decision was taken after a multidisciplinary meeting, following further MRI and EEG scans. Charlie was also examined by Dr Michia Hirano, a US professor of neurology, who had said the nucleoside bypass therapy had a minimum 10% chance of bringing about significant improvement in Charlie’s condition.

However, after flying over from the US to examine him in person for the first time, after being asked to do so by the judge, and assessing the scans he concluded that the NBT therapy was no longer a viable option.

 

[skatesindreams]

I feel for the parents and the child in the case in question. These parents may survive this, but they will never heal or get over this. It will scar them for the rest of their lives. It would be nice to say maybe they can heal, but that's a falsehood. I hope they can compartmentalize enough to live with the events surrounding their child's very short life.

This speaks for me, as well.

 

[Vash01]

I am extremely, extremely uncomfortable with the parents keeping this child and this case alive without considering the harm they are doing to the child.

Just because medical procedures like ventilators, feeding tubes, antibiotics for infections, IVs, hyperalimentaion (specific nutritional support IV), IV medications, etc DOES NOT make it the right or do no harm premise.

If you have no experience in administering these medical therapies, you have zero concept if it is or is not causing harm.

Put down that nasogastric tube, insert that endotrachial tube, start that IV after 12 attempts because you can't find a freaking vein, place the child under anaesthesia to insert that central vendors catheter or infusaport, position the baby for the fifty xray, clean the excoriated bottom from the GI formula intolerance and bleeding from the gut and the thousands of other things this precious baby is undergoing.

Have any of you experienced having an N/G, ET, gastronomy button tube inserted? Does, did that make you comfortable? I'm guessing 100% say no and it was awful. So times that by every single day that these parents are doing because they don't accept the diagnosis and prognosis. How many of you have had multiple number daily IV and or phlebotomy sticks, it's its separate hell.

Courts DO NOT take these types of cases lightly. They are debated from all standpoint. I firmly believe it has been ruled on the first do no harm underlying rule.

As a parent whose baby died in utero with as many chromosomal studies done post mortem, I can relate to wanting a child to live, wanting an answer, wanting things to be different. But it wasn't for my precious baby girl nor will it be for Charlie. This is not taking away from the parents anything that was not already taken. He isn't and would never be a normal chromosomal intact child.

Let me repeat that...his DNA is not compatible with life. Even with modern medicine compatible with life. Not, despite what quackery hope this researcher might be presenting. Not compatible with life.

(((Once-Upon))). Sorry for your loss.

 

[Vash01]

Here is the story from The Guardian

I am in tears reading this but I am glad that the parents have accepted the inevitable. However, I am not sure that their claim that the 5 month delay due to the court cases denied Charlie a chance for life is right, though their feelings are very understandable.. We will never know the answer.

I wish them all peace.