How far should a parent go to keep their kid alive?

[Buffalo]

yup. most orthodox jews (who are more likely to carry the gene because of minimal conversions and intermarriages) go through genetic testing before marriage. in some circles, it's a requirement.

Yup, also if the matchmaker knew that both persons are carriers for Tay-Sachs, she won't match those two.

Also Tay-Sachs is not limited to Jewish people.

More on this. Tay-Sachs, the `Jewish disease,' almost eradicated - Haaretz Daily Newspaper | Israel News

 

[TheOracle]

Nope, it's not...and it looks like we've taken care of it! Now if we can continue genetic testing and stop marrying non-Jews, we may just be in the clear.

 

[faire_jour]

Wirelessly posted

my husband and i came very close to facing this very decision. The doctors told us that in 3 days, if miss kat's condition did not improve, we would need to turn off her life support. We had discussions about what caring for her with profound brain damage, about whether or not we would continue life support, how long, what procedures and what was over the line. We had decided if things continued the way we expected, we would terminate life support, because she was in pain. But i would never ever decide that my decision was right in another persons case.

 

[deafdyke]

This family understood that they child may not have a lot of time left ... they've already lost a child to this devastating condition. They also know that dying by slowly suffocating to death - which is what would happen if the Canadian doctors at the hospital got their way- is a HORRIBLE way to die. (I really don't give a crap about people who try to justify it by saying things like "oh they're in a PVS, it won't hurt if they slowly suffocate"... that's a hideously thing to do to ANYTHING, let alone a child, YOUR child)

These parent's just want to be able to spend a bit more time with their child. Create a few more memories, take more pictures and videos, allow family and friends to say goodbye in a more "normal" setting. They want to make sure that child's final months, weeks, days, hours, mins and seconds are filled with love and that when they do pass, it's as quickly and painlessly as possible.

Anji, on the other hand, there is a HUGE difference between a profound physical disabilty and an extreme profound mental disabilty. Heck there's a HUGE difference between an extreme profound mental disabilty and a "just profound" mental disabilty.
Anji, you're also missing that the doctors in Canada said he was in a PVS and deteriorating. When you're deteriorating in a PVS, you're dying.
I know that the parents tried to get other opinons from other places in Canada....so apparently this case isn't one of those ambigious cases , where one doc would say that they're stable....Joseph is actively dying.

 

[deafdyke]

We had discussions about what caring for her with profound brain damage, about whether or not we would continue life support, how long, what procedures and what was over the line. We had decided if things continued the way we expected, we would terminate life support, because she was in pain. But i would never ever decide that my decision was right in another persons case.

Yes, but faire joure....was it PVS style profound brain damage? I definitly agree that it's a VERY VERY tough decision....and definitly very indidvdual. But on the other hand, the report from the doctors said that the baby was in a PVS and deteoriatiing rapidly.....it wasn't like the baby had been dx with something and the docs had refused intervention. The baby is at a very critical stage.....not to mention that a lot of the syndromes that cause PVS also cause the kid to be very medically fragile.

 

[Anij]

Anji, on the other hand, there is a HUGE difference between a profound physical disabilty and an extreme profound mental disabilty. Heck there's a HUGE difference between an extreme profound mental disabilty and a "just profound" mental disabilty.
Anji, you're also missing that the doctors in Canada said he was in a PVS and deteriorating. When you're deteriorating in a PVS, you're dying.
I know that the parents tried to get other opinons from other places in Canada....so apparently this case isn't one of those ambigious cases , where one doc would say that they're stable....Joseph is actively dying.

I don't mean to be argumentative here, but ... no, I'm not "missing" anything. Honest.

In fact, I'm well aware of the many details (and many of the specifics, perhaps more than most people as I have immediate friends who actually know this family very well... keep in mind that not everything is made public). I also personally know dozens of parents who've had to make the choice on when to "let go" and how to do that (after their SMA child has a heart attack, or some other trauma where there is brain damage etc).
At this moment there is a mum of a little boy both of whom I care deeply for and are part of my "family" who's may quite soon be facing a similar "if there's profound brain damage, what do we do".... this isn't "hypothetical" for me, in the way that it is for many people reading about it. Over the past 9 years I've lost more than 20 beautiful, adorable, amazing infants and children who are part of my "extended family" ... this is part of my "life" not "just" a new story.



The family simply wanted to be able to trach their child, so they could bring them home for the weeks or months that might be left. The doctors refused because because our healthcare is government funded - so the family didn't even have the option of PAYING out using their own money to have the procedure done as it's not an option in Canada.

The parent's aren't deluded, they just want their child's death to be as loving as it can be and at home... something that isn't asking a lot.

Anyone who's ever been intubated for specifically for breathing difficulties (profound pneumonia, CF, lung disease etc) can tell you that having a breathing tube removed without then being placed on some other form of support (CPAP, BiPAP, NIV Vent etc) is almost akin to slowly drowning ... you're GASPING for every breath, your body panic responses kick in (even if you're in PVS) it is a traumatizing, slow agonizing and PAINFUL death which no one would wish upon anyone, let alone their child.

The situation for this child, the way he would die if the Canadian hospitals had their way is a different situation than removing a vent/life support from someone who is completely and totally "brain dead" or paralyzed in a way in which without the vent they are unable to take a single breath (or more than 3) in which case the individual literally dies within moments (ie a single breath) - even in cases where those who are "completely brain dead" (which is very different than PVS) when "withdrawing life support" measures are taken to 100% prevent any consciousness/pain etc if ANY possibility that the person might be even a tiny bit "there" exists.

This was a money decision not an ethical one.

In fact I know multiple cases in Canadian hospitals very similar to this, where I DO know first hand, the children & families. Families I exchange emails,and Christmas cards, occasional gifts etc (where the child IS mentally PERFECTLY FINE), who's parents have been told by the hospital that they are (the hospital) refusing to do "x" or "y" needed to treat the child (who has pneumonia, or some other treatable condition) simply because in a medical textbook from the 80s it says that "this child will only leave a few more months anyway, you're just prolonging the inevitable" ... it happens far more often than people think - it just doesn't hit the media all the time. BTW, many of those "prolonging the inevitable" kids are now in elementary school. These are the same kids that one or more hospitals refused to treat. This isn't happening because the child is in PVS & deteriorating... the sad scary fact is that more often than people might want to think, these decisions are based on money and money alone.

This family just wants to have this child trached so that WHEN they die (which they KNOW will be soon), it will be peaceful, instead of terrifying (for the child, and the parents who have to stand there watching their child gasps for breath, as their little body panics, while the last thoughts of whatever is "left" of this child's mind is "mommy, dadddy - help"

They're NOT trying to "extend" this child's life, as much as they are frightening DESPERATELY to ensure a peaceful death for their child - knowing all too well what that death CAN and SHOULD be allowed to be.

 

[deafdyke]

Anji, JW is the baby in the "high functioning" end of the Glasgow coma scale? Do you know what the degenerative disorder is that Joseph has?
I do strongly believe that if a patient is stable, they have the right to adaqute medical care. If he is stable, and doesn't have conditions that could make it dangerous to put him under, then yes, do the trach.
The thing that set me off, was the report from the doctors that said he was in PVS and deteriorating. The media made it sound like he was actively dying.

 

[Anij]

Anji, JW is the baby in the "high functioning" end of the Glasgow coma scale? Do you know what the degenerative disorder is that Joseph has?
I do strongly believe that if a patient is stable, they have the right to adaqute medical care. If he is stable, and doesn't have conditions that could make it dangerous to put him under, then yes, do the trach.
The thing that set me off, was the report from the doctors that said he was in PVS and deteriorating. The media made it sound like he was actively dying.

I need to double check what's been made "public" to answer the first 2 questions.

For the Second part ... If someone is already intubated, and sedated then it's typically a quick, simple procedure to make the incision for the trach - I believe my friends trach took about 15mins total to do once she was "under".
There's no "medical reason" making it unsafe etc for this little boy to be trached.


Yes - the boy is "deteriorating" ... he has a degenerating condition, however people need to be extremely careful about forming connections between "deteriorating" and "withdrawing care".
It's a very short and dangerous step between what's happening with this child, and paving the way for doctors and family members to decide that an elderly relative, or someone who requires full time assistance etc (regardless of their mental faculties) isn't "worth" keeping alive.


We're ALL "actively dying" ... with each breath we take we step closer to death. The hope is that when we draw our final breath and leave this world - it's done as peacefully as possible.



The real question in the case of this little boy is:

There is a simple (cost effective) medical procedure that will allow this boy to have a "better life" - whatever remains of it. Perhaps more importantly, this procedure will allow this child a "better death"- whenever death comes. Why shouldn't he be allowed this simple procedure so that when he does leave this earth, it's as comfortably and peacefully as possible.

This little boy deserves a good life (no matter how short it it), and he certainly deserves a "good death" ... the Trach will help ensure that happens.

What "benefit" do we gain in denying this child a simple procedure?

 

[deafdyke]

es - the boy is "deteriorating" ... he has a degenerating condition, however people need to be extremely careful about forming connections between "deteriorating" and "withdrawing care".
It's a very short and dangerous step between what's happening with this child, and paving the way for doctors and family members to decide that an elderly relative, or someone who requires full time assistance etc (regardless of their mental faculties) isn't "worth" keeping alive.


We're ALL "actively dying" ... with each breath we take we step closer to death. The hope is that when we draw our final breath and leave this world - it's done as peacefully as possible.



The real question in the case of this little boy is:

There is a simple (cost effective) medical procedure that will allow this boy to have a "better life" - whatever remains of it. Perhaps more importantly, this procedure will allow this child a "better death"- whenever death comes. Why shouldn't he be allowed this simple procedure so that when he does leave this earth, it's as comfortably and peacefully as possible.

granted I do agree that he deserves a good death....that is a good way of putting it. And yes, we do need to be careful about the diffy between "no hope" and deciding to turn off the machines or just having hospice/pallatative care and " Grandma's a useless eater."
You do have to admit that his condition is extreme profound. Not say.....anacephely.
But it IS very profound. There's no easy answers here.

 

[Anij]

There's no easy answers here.

Honestly (and I don't mean this to sound condescending) - doing a 15-30mins procedure and sending this child home with mommy and daddy to die in peace seems a fairly 'easy answer' to me.

People can make it more complicated if they want to by involving other aspects such as brain function etc - but really there are two options:

1) A 15-30mins procedure would make this child more comfortable & allow him to go home and have a GOOD death - which is what the family wants.

or

2) Extubating this child and then watching him slowly, painfully suffocate to death on his own secretions - which is what the Canadian hospital "wanted".

In what strange universe is option "2" better?
In what world is it "easier" to watch a child slowly drown when there's a simply way to prevent it?


Leave brain function out of it for a minute ... what way would YOU want someone you loved to die ... which way would YOU want to die??

1) surrounded by loved ones at home, peacefully passing from this earth as your brain simply painlessly shuts down - effectively passing as if in a dream

OR

2) Gasping for breath as you slowly drown in your own secretions (spit)


"severe brain damage", "PVS", "deteriorating" ... none of these things should condemn a little child to a painful death, when a simple & more peaceful option is available ...

It's not really about extending time (which is what the media and "people" seem to be locked on) - it's about being able to grant this beautiful innocent child a good death. Because we CAN.



P.S. This hits even closer to home because Tuesday evening we lost the little boy who I mentioned previously ...
Being able to grant a dying child (and their family) a "good death" is one of the final acts of love we have - not only because it carries that child from this world... but because it's the final memory WE carry with us as the bearers of their legacy.

 

[CSign]

How sad. Give this child a trach and let him go home.

 

[MidnightSun]

How far

even if they are in a persistant vegetative state?
Canadian boy moved to US over end-of-life dispute - Yahoo! News
Quite frankly I am HORRIFED at this case. Keeping a kid in a PERSISTANT VEGETATIVE state ALIVE artifically? From what I understand, the kid has a really profound degenerative condition. He cannot even interact with the world, a la someone who has profound intellectucal disabilties. (ie on the level of a baby) I know this is a controversial topic.....but on the other hand, its almost like the parents are severely in denial, about how extremely profoundly disabled this kid is.

Wow! this touches me deeply having just myself been in what you refer to as a vegitative state...I mean..you say he is on the level of a baby...can not interact. well, I have to tell you that there was I time that I could not walk, speak, open my eyes, move any part of my body and had a seizure at least once a day...I don;t think I was interacting with the world..Had 6 Brain Surgeries. I am profoundly deaf so could not and did not respond to sound , had to be fed, dressed all of that. I am here today...to say...even if this child can only intereact on the level of a baby...he is not brain dead...I ask you what Mother would allow someone to end the life of their "baby"..without a fight.? I believe as long as their is, Brain activity, we should not be so quick to deny that mother or father whatever time they can have, I think they will know when the time to let go comes...I must trust in that..Midnight♥

 

[Bebonang]

Wow! this touches me deeply having just myself been in what you refer to as a vegitative state...I mean..you say he is on the level of a baby...can not interact. well, I have to tell you that there was I time that I could not walk, speak, open my eyes, move any part of my body and had a seizure at least once a day...I don;t think I was interacting with the world..Had 6 Brain Surgeries. I am profoundly deaf so could not and did not respond to sound , had to be fed, dressed all of that. I am here today...to say...even if this child can only intereact on the level of a baby...he is not brain dead...I ask you what Mother would allow someone to end the life of their "baby"..without a fight.? I believe as long as their is, Brain activity, we should not be so quick to deny that mother or father whatever time they can have, I think they will know when the time to let go comes...I must trust in that..Midnight♥

I have read all the threads here about "How far should a parent go to keep their kid alive? I can understand their situations of having to let their child go. It just not easy at all, but the child suffer with no mental activity and acting like a baby. The child was not aware of his surrounding and not responding. The child's parents do love the child very much but they know the child had to go if needed to go at the proper time.

I am shock that the hospitals would not use "trach" to help the child to die peacefully and not to be in pain. I think the hospital should do that if the parents request for it. I don't know why hospital refuse just because of the government rules. That is mind boggling. I would go for the parents to take the child home and let him die peacefully and comfortably. It is like there is no hope anyway. Not with this all kinds of conditions that the child have. It is really rare. I have never experienced like this before, but I am learning about it. I am sad for the little boy who had to be stuck with machine for breathing as long as he lives even like 20, 30, 40, or even 50 years.

I remembered about a woman many years ago who was in a coma and never regain from it. She died about like 20 or 25 years later. So now I understand that the hospital just want to make money off from the parents or the patient who are in a coma.

As for you, MidnightSun, you are perfectly alert and able to know your surrounding. That is the best gift you have, but for the child that is a whole different story all together.

 

[deafdyke]

mean..you say he is on the level of a baby...can not interact. well, I have to tell you that there was I time that I could not walk, speak, open my eyes, move any part of my body and had a seizure at least once a day...I don;t think I was interacting with the world..Had 6 Brain Surgeries. I am profoundly deaf so could not and did not respond to sound , had to be fed, dressed all of that. I am here today...to say...even if this child can only intereact on the level of a baby...he is not brain dead...I ask you what Mother would allow someone to end the life of their "baby"..without a fight.

No. I stated he wasn't EVEN on the level of a baby. Look, I am not some "cull them all" monster.
I support intervention if the baby is stable. Even one in a persistent vegetative state.
But Anji, it does seem like you're letting your experiance with severely physically disabled kids color this case. Nothing wrong with that....but we're talking about profound MENTAL.No...wait correct that... We are talking about an extreme profound condition.
There's no easy answers....but deep PVS is really horrible. There's a body but no soul. You're arguing for a good death.....BUT isn't keeping his body(no mind just basic breathing and sleep/wake cycle) here artifically on a vent when it wants to rejoin the rest of his soul a cruel death?

 

[Aleser]

even if they are in a persistant vegetative state?
Canadian boy moved to US over end-of-life dispute - Yahoo! News
Quite frankly I am HORRIFED at this case. Keeping a kid in a PERSISTANT VEGETATIVE state ALIVE artifically? From what I understand, the kid has a really profound degenerative condition. He cannot even interact with the world, a la someone who has profound intellectucal disabilties. (ie on the level of a baby) I know this is a controversial topic.....but on the other hand, its almost like the parents are severely in denial, about how extremely profoundly disabled this kid is.

Stephen Hawking has a condition which for many sufferers will require a ventilator early in the disease, and for all (who do not die before then) later in the disease.

If Stephen Hawking developed a profound intellectual disability, would you advocate taking him out back and shooting him (or unplugging his oxygen source and leaving him to die, as it were) simply because he was no longer smart enough to deserve life?

Anybody would find it ridiculous now to euthanize Stephen Hawking, because he's a very smart guy and all. But if he were to become stupid, or even profoundly intellectually disabled, would his life - which has been fought for relentlessly thus far- magically become "no longer worth living"?

There is an incredible amount of ableism in end of life cases such as these. The worst of it is ableism on the part of the doctors who declare that a child is "better off dead" than profoundly disabled. A close second is the parents who believe this line and choose to kill children who fail to meet their expectations.

That is what you do when you disconnect the ventilator of someone who is not actually, clinically, brain dead. You kill a living person who can possibly if not probably feel fear and pain, maybe not on the level you can, because you don't think their life is "worth living", or because it has become too much work for you to take care of them.

And that seems much more horrifying than a parent trying to keep their child alive as long as is feasible, to me.

 

[deafdyke]

The worst of it is ableism on the part of the doctors who declare that a child is "better off dead" than profoundly disabled. A close second is the parents who believe this line and choose to kill children who fail to meet their expectations.

That is what you do when you disconnect the ventilator of someone who is not actually, clinically, brain dead. You kill a living person who can possibly if not probably feel fear and pain, maybe not on the level you can, because you don't think their life is "worth living", or because it has become too much work for you to take care of them.

And that seems much more horrifying than a parent trying to keep their child alive as long as is feasible, to me.

This is not ablelism. You have missed that the baby is extremely profoundly disabled. Not profoundly disabled. There is a GIANT difference between a child with an extreme profound disabilty and a profound disabilty. Heck....did you miss that the baby is pretty much actively dying? There's basicly no hope. Doctors do not basicly toss away human life....they treat babies/kids with all sorts of profound and even extreme profound conditions.

 

[Aleser]

This is not ablelism. You have missed that the baby is extremely profoundly disabled. Not profoundly disabled. There is a GIANT difference between a child with an extreme profound disabilty and a profound disabilty. Heck....did you miss that the baby is pretty much actively dying? There's basicly no hope. Doctors do not basicly toss away human life....they treat babies/kids with all sorts of profound and even extreme profound conditions.

Stephen Hawking is also actively dying. His condition is often fatal within years of diagnosis. Does that somehow negate his existing?

This kid is profoundly disabled, yes, but he is -not brain dead-. There is no reason to speculate that he would not feel pain or suffer from being disconnected from his ventilator.

 

[deafdyke]

Stephen Hawking is also actively dying. His condition is often fatal within years of diagnosis. Does that somehow negate his existing?

This kid is profoundly disabled, yes, but he is -not brain dead-. There is no reason to speculate that he would not feel pain or suffer from being disconnected from his ventilator.

Not at all. The difference is in degree of severity. Not to mention that the kid does not have a profound disabilty. He has an EXTREME profound disabilty. It's like the difference between being hoh and deep total profound loss. Stephen Hawking is dying yes....but it's a chronic terminal condition. He is still functional. Whereas this baby is in the stage before death. Just like in Tay Sachs or M1 or those other scary degenerative childhood diseases. Doctors aren't evil. Many of them treat people in PVS and other degenerative conditions regularly. I was actually reading pages of parents of Tay Sachs and related disorder kids....and there was a parent who was so relieved when her daughter finally died. It was sad yes.....but at the same time, she no longer had to suffer with a horrendous extreme profound health condition.

 

[Anij]

Not at all. The difference is in degree of severity. Not to mention that the kid does not have a profound disabilty. He has an EXTREME profound disabilty. It's like the difference between being hoh and deep total profound loss. Stephen Hawking is dying yes....but it's a chronic terminal condition. He is still functional. Whereas this baby is in the stage before death. Just like in Tay Sachs or M1 or those other scary degenerative childhood diseases. Doctors aren't evil. Many of them treat people in PVS and other degenerative conditions regularly. I was actually reading pages of parents of Tay Sachs and related disorder kids....and there was a parent who was so relieved when her daughter finally died. It was sad yes.....but at the same time, she no longer had to suffer with a horrendous extreme profound health condition.

Do you KNOW this child, this family - our are you making your constant references to "extreme profound disability" based on what you've read in the media has made into a popular news story ???

EVERYONE is "actively dying" ... it might take decades or moments, but we are ALL actively dying.

These parents WILL know when to let this child go - remember they've been here before, they KNOW the progress of this condition.


A lot of people would say that someone who's born D/B is in agony and shouldn't be "forced to live"... but those who actaully UNDERSTAND D/Bness first hand know BETTER.

Some people -even today- say that those with Downs Syndrome shouldn't live ... they abort them, or legally starve them to death saying its more humane.... but those of us who HAVE a family member with DS ... we KNOW better.

My point is that one cannot presume to be educated enough to say what this family should do - unless they've walked in their footsteps. Unless you've watched a beautiful go through this or a similar condition - you cannot KNOW what is "left" of that child.

You know the story the media spins ... which is a very very dangerous and unreliable way to decide what you'd do, what is "right" or "wrong" ... because you're seeing only what has been carefully constructed FOR you to see.

Parents DO know when it's time ... until then their child has the right to live out their days in as much comfort as possible.

No one should have to suffer -even a moment, if there is a reasonable way to make them more comfortable - in this case not only is it reasonable, it's more cost effective, and more humane.

Be careful forming judgments based on what the media shows you ... because you're seeing a fraction of the puzzle... and from a very limited viewpoint.

 

[deafdyke]

our are you making your constant references to "extreme profound disability" based on what you've read in the media has made into a popular news story ???

EVERYONE is "actively dying" ... it might take decades or moments, but we are ALL actively dying.

These parents WILL know when to let this child go - remember they've been here before, they KNOW the progress of this condition.

Anji, FYI I DO know how the media can distort things, when it comes to disabilty...Like do you remember that Ashley Treatment fallout? The media was describing her as being in a PVS, when she could interact and respond to music. That's more profound disabilty.....and Joseph does have an extreme profound disabilty. He is in a pvs. Granted the media hasn't said what level of PVS he is in or if he is stable or whatever. But the fact of the matter is that he is in a PVS and cannot interact with the world. It is a VERY profound condition, and to compare it with something like Down's is rediclous.
But the question is why didn't the parents opt for a trach a lot sooner? You really don't seem to understand that doctors deal with this sort of stuff ALL the time. They treat all kinds of people in PVS as well as profoundly mentally handicapped children and babies.
Joseph is essentially two inches away from death.....if there was any hope, then how come the parents didn't go to other doctors in Canada for another opinon? How come only ONE hospital in the US accepted him?