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Against his parents’ wishes, terminally ill infant will be allowed to die

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Metroxed

Member
Don't get why people are against the parents. As long as they're able to afford it, they should be able to keep their kid alive.

No one else has the right to make this decision other than the parents.

The Government actually does. The rights of the parents do not trump the rights of the children, and this child has the right not to suffer and to a dignified death. When there is a conflict between individuals and their rights, the Government acts through courts and the judicial system.
 

Cheezus

Member
One of those sad stories where I sympathize with all sides. I think the right decision was made, but I can only say that as someone detached from the situation. If I was in their shoes I might react the same way. It sucks.
 

Kenstar

Member
We know that sensory deprivation is very effective method of torture. The human brain requires input, without it for any extended period of time is not pleasant.

yeah but what if like the kids sensory receptors are BACKWAYS and he actually thrives on it? Checkmate murderous post birth abortionists
 
That's ridiculous. Doctors measure quality of life. Also we know what a brain in a peaceful dream state looks like. You aren't aware of technology that measure brainwave activity?

I am not aware how measuring that brainwave activity tells us how it actually feels to be in that state.

If it is in some kind of "dream" state then I don't know what it would be dreaming about. His brain has nothing from the real world to draw from to form the dreams. I guess it could be dreaming of being in the womb still, but I can't imagine that being an awesome thing to dream about for your entire life.

This is a very good point and one I would absolutely consider if this were my child.

We know that sensory deprivation is very effective method of torture. The human brain requires input, without it for any extended period of time is not pleasant.

Another very good point and ultimately I do agree with letting go in this situation. I just can't help but interject my life experience with my son over the last 10 years into this scenario.
 

Andrin

Member
Why does everyone bring this up, assuming everyone that is for trying the procedure is thinking in terms of emotion? Are you blind to the choices and how there is literally a chance at survival in one? Regardless of emotion of the situation. It infuriates me to no end. I'm not even thinking about it emotionally, I'm thinking in terms of:

There are two choices:
a) definitely let the child die
b) a slim chance at survival if they try an experimental procedure

What makes more sense to you? Obviously A. To me, it's B. And I've been arguing that until this thread started. My big sticking point is, regardless of the choice, it's in my opinion that it is 100% not the decision that should be made by the doctors at the particular hospital, but the parents of the child.

In my mind, it makes complete sense for the parents to want to go with option B, and I think it's unethical for the courts and doctor's at the particular hospital to make a call that blocks them from doing that, as it's not their decision. If the parents wanted to allow the child to die, I'd respect that as well. But they want to fight, and they are allowed to try (notice I didn't say "should be", because the power over life and death are not something that should yield to appeals to authority).

It's not nearly as simple as you're making it out to be. First of all, the procedure would be beyond experimental, as it hasn't even begun animal trials yet. Trying it on humans at this point is so far beyond the realm of medical ethics I'm surprised it was even considered in the first place. Second, if it was even successful it would only solve a miniscule part of the problem. To use a somewhat crass analogy it would be like using bug spray to kill the termites in a house that has already collapsed. Restoring the function of the mitochondriae in his cells would only allow the cells that are still alive to produce their own energy. It would do absolutely nothing to the tissue that's already dead. From what I understand of this case his brain is so damaged that it can't even uphold the most critical life support systems on its own. He would never even be able to breathe by himself, let alone actually being able to form his own cognition.

And you've severely misunderstood just how the field of medicine works. Patients and doctors are not equal in the decision-making process. We hold patient autonomy extremely highly, but at the end of the day we are the experts. You have the absolute right to deny treatment (as long as you're not mentally compromised by way of psychosis or similar), and in many countries you also have the absolute right to demand medical aid. What you don't have is the right to demand any and every treatment you can think of. Contrary to what you may believe most doctors genuinely only want what's best for their patients, and in some cases that includes making the medically informed decision to end treatment, even if that means that the patient dies. We only do this if there's genuinely nothing else that can feasibly be done, or when it's judged that the suffering of the patient far outweigh any potential benefits.

Medical ethics are complex and often heartwrenching. And we have to live with the decisions we make every day, so I'd appreciate it if you didn't reduce us to some shadowy demonic cabal out to kill children in front of their parents.
 

Hoo-doo

Banned
Don't get why people are against the parents. As long as they're able to afford it, they should be able to keep their kid alive.

No one else has the right to make this decision other than the parents.

This is just nonsense. Think it through.

It's no longer the parents who carry sole responsibility for this child. It partly falls on the physicians, nurses, judges and ethics boards, which are currently the only reason why this boy is still technically kept 'alive' through machines. No-one is going to support these parents in the decision to needlessly extend a child's suffering when any kind of recovery or functional state is simply not among the possibilities.

Look, I feel the deepest of sympathies for these parents. No parent should ever have to bury their child. But we've simply reached the very limits of what medicine can do in this situation. It's time for them to let go.
 

Loxley

Member
Don't get why people are against the parents. As long as they're able to afford it, they should be able to keep their kid alive.

No one else has the right to make this decision other than the parents.

That's the question here. At some point, does treating your child's horrible illness cross a line to where it becomes inhumane to keep putting them through the treatment process when they're just not getting any better? I don't think there is a right or wrong answer here, it depends entirely on the situation.

For example, a couple I know have a five year-old boy who was diagnosed with Rhabdomyosarcoma - a very rare cancer of the skeletal muscles. For the last four years straight, the kid has been receiving intensive radiation and chemotherapy. Just last week he had to have a brain tumor removed, and he's only five. His mom posts updates on his condition on their Facebook page - and lately she has absolutely been pondering if it's worth continuing to put her son through more torturous rounds of chemo and radiation if there's no guarantee he'll get any better (which there isn't). He's a little guy and all of this has taken a tole on him, mentally, physically, emotionally, etc. It's a decision no parent should ever have to make, but like I said, at some point you have to wonder if the more humane thing to do is to just let the child go.
 

Zelias

Banned
Terrible situation, but the facts of the case seem clear. I don't blame the parents for fighting, but it's time Charlie was allowed to rest.
 

JoeBoy101

Member
I'd say there's a lot of empathy in this thread, but it's for the baby in perpetual pain with irreversible brain damage, not the people who want to pointlessly prolong his suffering

Kinda proving his point what that post there.


Cheezus said:
One of those sad stories where I sympathize with all sides. I think the right decision was made, but I can only say that as someone detached from the situation. If I was in their shoes I might react the same way. It sucks.

Agreed with this. Feels like the right decision, but glad I didn't have to make it.
 

Timeaisis

Member
It's not nearly as simple as you're making it out to be. First of all, the procedure would be beyond experimental, as it hasn't even begun animal trials yet. Trying it on humans at this point is so far beyond the realm of medical ethics I'm surprised it was even considered in the first place. Second, if it was even successful it would only solve a miniscule part of the problem. To use a somewhat crass analogy it would be like using bug spray to kill the termites in a house that has already collapsed. Restoring the function of the mitochondriae in his cells would only allow the cells that are still alive to produce their own energy. It would do absolutely nothing to the tissue that's already dead. From what I understand of this case his brain is so damaged that it can't even uphold the most critical life support systems on its own. He would never even be able to breathe by himself, let alone actually being able to form his own cognition.

And you've severely misunderstood just how the field of medicine works. Patients and doctors are not equal in the decision-making process. We hold patient autonomy extremely highly, but at the end of the day we are the experts. You have the absolute right to deny treatment (as long as you're not mentally compromised by way of psychosis or similar), and in many countries you also have the absolute right to demand medical aid. What you don't have is the right to demand any and every treatment you can think of. Contrary to what you may believe most doctors genuinely only want what's best for their patients, and in some cases that includes making the medically informed decision to end treatment, even if that means that the patient dies. We only do this if there's genuinely nothing else that can feasibly be done, or when it's judged that the suffering of the patient far outweigh any potential benefits.

Medical ethics are complex and often heartwrenching. And we have to live with the decisions we make every day, so I'd appreciate it if you didn't reduce us to some shadowy demonic cabal out to kill children in front of their parents.

I'm not reducing doctors to anything. I think they are doing their job and making a call they believe to be the right one. That's fine. At the end of the day, though, I don't think the final decision lies in their hands because of the chance, however slim, that the child has at the opinion of another doctor. I've made that abundantly clear from the beginning.
 

diaspora

Member
Why does everyone bring this up, assuming everyone that is for trying the procedure is thinking in terms of emotion? Are you blind to the choices and how there is literally a chance at survival in one? Regardless of emotion of the situation. It infuriates me to no end. I'm not even thinking about it emotionally, I'm thinking in terms of:

There are two choices:
a) definitely let the child die
b) a slim chance at survival if they try an experimental procedure

What makes more sense to you? Obviously A. To me, it's B. And I've been arguing that until this thread started. My big sticking point is, regardless of the choice, it's in my opinion that it is 100% not the decision that should be made by the doctors at the particular hospital, but the parents of the child.

In my mind, it makes complete sense for the parents to want to go with option B, and I think it's unethical for the courts and doctor's at the particular hospital to make a call that blocks them from doing that, as it's not their decision. If the parents wanted to allow the child to die, I'd respect that as well. But they want to fight, and they are allowed to try (notice I didn't say "should be", because the power over life and death are not something that should yield to appeals to authority).
There is no chance of survival with the procedure that hadn't even been tested on humans yet.
 
I'm not reducing doctors to anything. I think they are doing their job and making a call they believe to be the right one. That's fine. At the end of the day, though, I don't think the final decision lies in their hands because of the chance, however slim, that the child has at the opinion of another doctor. I've made that abundantly clear from the beginning.
Would you feed the kid a diet of raw eggs on the chance he gets cured? That also has a greater than zero chance of working.
 

IrishNinja

Member
One of those sad stories where I sympathize with all sides. I think the right decision was made, but I can only say that as someone detached from the situation. If I was in their shoes I might react the same way. It sucks.

Agreed with this. Feels like the right decision, but glad I didn't have to make it.

i'm a huge proponent of euthanasia...but yeah, i echo these posts. i can't imagine making the call if it was my own.
 
It's pretty awful, this whole thing.

But I can't help being extra disgusted by the American right on this one, as they bend over backwards to try and save one little white kid from the UK who is overwhelmingly likely to die no matter what while simultaneously working to strip health care from millions of people here.
 

groansey

Member
A persons opinion on this issue is basically an IQ test.
It's fairies versus reality.

The US would offer treatment because they'd make $$$.
The same motivation as the right wing media involvement. It's shameful, exploitative and only making the eventual outcome for the parents worse.
 
It's pretty awful, this whole thing.

But I can't help being extra disgusted by the American right on this one, as they bend over backwards to try and save one little white kid from the UK who is overwhelmingly likely to die no matter what while simultaneously working to strip health care from millions of people here.

Pretty sure the family has raised over £300k so far, that's probably what they are interested in.
 

Z3M0G

Member
Was definitely the right call. I can't imagine putting a child through "life" like that. What a parent wants is not always right, and a parent shouldn't have the right to get whatever they want.
 

Blue Lou

Member
http://www.gosh.nhs.uk/news/latest-...man-great-ormond-street-hospital-22-july-2017

tatement from Mary MacLeod, Chairman of Great Ormond Street Hospital.
Mary MacLeod, Chairman of Great Ormond Street Hospital said:

"Great Ormond Street Hospital cares for many thousands of seriously unwell children every year, providing outstanding treatment for those who need it most.

Charlie Gard's case is a heart-breaking one. We fully understand that there is intense public interest, and that emotions run high.

We recognise the tireless advocacy of Charlie's loving parents and the natural sympathy people feel with his situation.

However, in recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance. Staff have received abuse both in the street and online. Thousands of abusive messages have been sent to doctors and nurses whose life's work is to care for sick children. Many of these messages are menacing, including death threats. Families have been harassed and discomforted while visiting their children, and we have received complaints of unacceptable behaviour even within the hospital itself.

Whatever the strong emotions raised by this case, there can be no excuse for patients and families to have their privacy and peace disturbed as they deal with their own often very stressful situations or for dedicated doctors and nurses to suffer this kind of abuse.

Great Ormond Street Hospital is in close contact with the Metropolitan Police and we will do everything possible to hold to account anybody who involved in this kind of deplorable behaviour.”

Also - The Guardian had an article about how the case has been hijacked for political causes.


Also II, apparently Charlie Gard was given U.S. citzenship
 
The doctor offering that treatment seems to be there only for the profits and publicity, and the harassment of hospital staff is apalling.
The kid getting US citizenship is unsurprising, this is a fight between medical ethics and extreme right "muh freedom" insanity.
The kid was in hands of the hospital and subject to EU law, and the hospital and ECHR decided not to hand him over to doctor overseas because they deemed it would only harm the kid. This is the same as ignoring the wishes of insane religious parents who reject blood transfusions. I get the parents are not insane here, but the patient's parents do not make the calls since they are not experts.
Ffs the kid's brain was as good as a scrambled egg, damaged beyond any repair.
 
http://www.gosh.nhs.uk/news/latest-...man-great-ormond-street-hospital-22-july-2017

However, in recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance. Staff have received abuse both in the street and online. Thousands of abusive messages have been sent to doctors and nurses whose life's work is to care for sick children. Many of these messages are menacing, including death threats. Families have been harassed and discomforted while visiting their children, and we have received complaints of unacceptable behaviour even within the hospital itself.

F*** people.
 

GKnight

Banned
If there is a hundred percent chance I am going to die and there is a cure with 0.1% chance of during me or 99.9% chance of killing me I would still try it.
 
If there is a hundred percent chance I am going to die and there is a cure with 0.1% chance of during me or 99.9% chance of killing me I would still try it.

That's you, deciding about yourself.

Other people would prefer not to be subjected to torture.
Other people would prefer not to have a child subjected to torture.

And, this conversation has been had numerous times in the past 350+ posts and the past 3+ weeks.
 
If there is a hundred percent chance I am going to die and there is a cure with 0.1% chance of during me or 99.9% chance of killing me I would still try it.

Absolute best case scenario, the treatment isn't a cure. It doesn't really even offer any meaningful improvement. If everything goes perfectly, it might briefly prolong the kid's life, such as it is, and suffering.
 
Such a horrible situation all round.

I can also understand the doctors and judge point of view that the child has suffered enough and its best to stop prolonging his life.

I can understand where the parents are coming from. I would probably fight tooth a nail for a slim change for my child too.




Its messed up. Its a clash of the purely logical and the purely emotional.
 

EGM1966

Member
The poor child is beyond level of any kind of meaningful help. Realistically he's at the point where it's about enabling the most dignified and painless death possible. Medically that's where he's objectively at hence the correct intent to enable a managed end to his suffering.

It's so sad it's become needlessly political and his clearly frazzled patents put into a position making it even harder for them to make the right - but horrifically tough for them - decision.

I just hope it's all over soon before they end up even more fucked up psychologically and the poor kid has to suffer on much further.
 

Orbis

Member
If there is a hundred percent chance I am going to die and there is a cure with 0.1% chance of during me or 99.9% chance of killing me I would still try it.
What if there was 0% chance of cure and 100% chance of simply prolonging existing suffering?
 

Armaros

Member
I'm not reducing doctors to anything. I think they are doing their job and making a call they believe to be the right one. That's fine. At the end of the day, though, I don't think the final decision lies in their hands because of the chance, however slim, that the child has at the opinion of another doctor. I've made that abundantly clear from the beginning.

The other doctor already stated that it would just prevent future damage and would not repair any damage already done,

AKA he would be extremely brain damaged beyond the point of self-survival.
 

hokahey

Member
If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.
 
If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.

There is not a cure for what this child has.

Just read the thread, this argument has happened already.

And I'm fed of up people saying you can't have empathy or understand simply because you don't have a child. Were you a complete psychopath before you had a child or something? And the ability to care about other human beings only appeared then?
 

Lois_Lane

Member
If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.

Did you read anything about the case before typing this post?
 

Mr Swine

Banned
It sickens me that people still rage on and say that Gosh is the devil, that they only care for money and that all doctors there are hacks. Jesus Christ, what is wrong with those people?
 

hokahey

Member
And I'm fed of up people saying you can't have empathy or understand simply because you don't have a child. Were you a complete psychopath before you had a child or something? And the ability to care about other human beings only appeared then?

I seem to recall a lot of posts and threads here that contain similar verbiage of "you can't understand unless..." that many agree with.

And no. I wasn't a complete psychopath. But there is a change to your internal workings when you become a parent. If there isn't, you're probably not a very good one.
 

Pesmerga00

Member
If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.


Yeah a .000000001% chance of living, while not being able to move, see, eat, or even breath on their own
 

kirblar

Member
I seem to recall a lot of posts and threads here that contain similar verbiage of "you can't understand unless..." that many agree with.

And no. I wasn't a complete psychopath. But there is a change to your internal workings when you become a parent. If there isn't, you're probably not a very good one.
Yes, your testosterone level drops if you're a man.

The idea that people cease all rational function and have some sort of singular instinct take over when they become parents is ridiculous.
 

gamz

Member
If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.

That's insane. It's time to go. Period.

Parents should do what's best for their child and quality of life. If you weren't a child and your quality of life will be a complete vegetable wouldn't you want to move on?
 

Ponn

Banned
I seem to recall a lot of posts and threads here that contain similar verbiage of "you can't understand unless..." that many agree with.

And no. I wasn't a complete psychopath. But there is a change to your internal workings when you become a parent. If there isn't, you're probably not a very good one.

Do you lose the ability to read a thread before posting when you have a child?
 

EmiPrime

Member
For the posters tempted to make "if you don't have a child you just don't understand" drivebys:

What is his condition?
Charlie's condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as ”MDDS". Charlie suffers specifically from the RRM2B mutation of MDDS.1

Charlie's brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie's heart, liver and kidneys are also affected.1

Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.1

Charlie's eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie's retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you're born with, it develops over time.2

Why is there no treatment available at GOSH?
There is no cure for Charlie's condition which is terminal. GOSH explored various treatment options, including nucleoside therapy, the experimental treatment that one hospital in the US has agreed to offer now that the parents have the funds to cover the cost of such treatment. GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie's quality of life.

How did GOSH come to this decision about his treatment?
GOSH's clinicians had to balance whether this experimental treatment was in his best interests or not.

One of the factors that influenced this decision was that Charlie's brain was shown to be extensively damaged at a cellular level. The clinician in the US who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.

The entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents all agreed that further treatment would be futile – meaning it would be pointless or of no effective benefit.1
 

EmiPrime

Member
I have three kids and it would be a easy decision. Let the kid go.

Yep he has suffered enough. The longer this goes on the less sympathy I have for the parents as they're making nuisances of themselves and putting an unnecessary burden on GOSH in terms of resources and the harassment that staff are having to endure.
 

EGM1966

Member
If you don't have a child, you can't understand.

If it was my child, and there was a .000000001% chance at a cure, by a licensed medical professional, and the government wouldn't let me take my child to try it...heads would roll.
How odd. I have two children and would let either of them go if they were in Gard's position. The kid isn't getting cured. People really need to assimilate the context. There's no cure. He's horribly brain damaged already and his on going quality of life is basically zero. He's being kept alive for no good reason nor purpose despite this because his parents are faltering to make what is undoubtably the toughest choice you could face as a parent (and hopefully would never have to) even though it's the only choice that affords him an end to suffering.

It's a shame his parents can't let him go but they're not making the best or right choices on his behalf.

As for the threats - both to staff and the patents - that's just stupid idiots who have no actually say nor should have any say in the matter. How I'd love them to trace some down and charge and convict them.
 

Raguel

Member
http://www.gosh.nhs.uk/news/latest-...man-great-ormond-street-hospital-22-july-2017



Also - The Guardian had an article about how the case has been hijacked for political causes.


Also II, apparently Charlie Gard was given U.S. citzenship
You've got to be fucking kidding me. These stupid fucking people.

And it seems like there's still idiots in this very thread who refuses to be educated about the situation. Just pure fucking ignorance when the facts are right there. Right in front of you. It takes all of five minutes to be informed about this and yet here we are with the "if you don't have a kid you wouldn't understand" or the "if there is a chance of survival I'd take it" bullshit. Fucking read. It's not hard people.
 

gamz

Member
How odd. I have two children and would let either of them go if they were in Gard's position. The kid isn't getting cured. People really need to assimilate the context. There's no cure. He's horribly brain damaged already and his on going quality of life is basically zero. He's being kept alive for no good reason nor purpose despite this because his parents are faltering to make what is undoubtably the toughest choice you could face as a parent (and hopefully would never have to) even though it's the only choice that affords him an end to suffering.

It's a shame his parents can't let him go but they're not making the best or right choices on his behalf.

As for the threats - both to staff and the patents - that's just stupid idiots who have no actually say nor should have any say in the matter. How I'd love them to trace some down and charge and convict them.

All of this. Yup.
 

EmiPrime

Member
http://www.bbc.co.uk/news/uk-england-london-40685461

Charlie Gard's parents reacted angrily in court when medical information was revealed about their son which they had not previously been told about.

The High Court was told a scan of the baby's brain made for "sad reading". His mother responded: "We have not even read it" and her husband walked out.

On hearing the hospital lawyer's assessment of the scan, Charlie's mother Connie Yates broke down in tears and his father Chris Gard shouted "evil" at the lawyer before walking out of court earlier.

Is it any surprise that dickheads are sending death threats when the parents are screaming abuse in court and denying the evidence of the brain damage?
 
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