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

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deafdyke

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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.
 
deafdyke said:
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.
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Some people can't bear to let go of their loved ones, especially parent's children. If it happened to you, you might feel differently. Just sayin..
 
It's going to be costly to have him looked after in an American hospital.

Can't judge parents for wanting to keep their child alive for a bit longer.
 
Glenn said:
Reminds me of Terry Schiavo.
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Yes, I remember that story very well....It's heart-breaking for any parent when they are in a position to "play God"....to let their child go, and still questioning themselves if they did the right thing.
 
deafdyke, I used to think the same way as you do until I felt my twins moving for the first time and I will move Heaven and Hell to make sure my babies are with me, at all costs.
 
First of all Congrats Mrs. Bucket. I did not know!! :) Guess I have been away from AD too long.

Secondly... I will not keep my child in a vegative state and the only thing is keeping the child alive are the machines. I would have them unplug it, and let my child go. As heartbreaking it is to let a child go. It would be even more heartbreaking watching the child waste away on a machine. That is how I feel.
 
Because they keep their another child alive after those parents lost their older child eight years ago...
 
Mrs Bucket said:
deafdyke, I used to think the same way as you do until I felt my twins moving for the first time and I will move Heaven and Hell to make sure my babies are with me, at all costs.
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Yep, my views changed overnight when I had my first baby. Amazing how our own children really can impact us.

As for me...I wouldnt know what to do if I was in the situation because I have never experienced it. How can I know what I would do if I have never experienced it? Hard to say.
 
Secondly... I will not keep my child in a vegative state and the only thing is keeping the child alive are the machines. I would have them unplug it, and let my child go. As heartbreaking it is to let a child go. It would be even more heartbreaking watching the child waste away on a machine. That is how I feel.
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Thank you Babyblue!!!
Thing is, I can and do understand fighting to keep a baby/kid alive who might have "just" profound disabilties. (ie they are at the level of a baby mentally) I have friends who have kids with profound intellectucal disabilty. The gross majority of kids/people with profound intellectucal disabilty can interact with caregivers etc.
And I do believe that as long as someone with a degenerative disorder is functional and aware, they have the right to quality medical care and interventions.
But the question is......when the worst has happened, and they've reached the end of the road and are in a persistant vegetative state as a result of a degenerative disorder....that's a really tough call. Not to mention that a lot of times the childhood nereodegenerative stuff (like Tay Sachs, Battens Disease, the leukeodysphopies) can be accompied by extreme medical fragility and stuff like seizures. On the other hand, thank GOD that this sort of thing is very rare.
 
there's a difference between pvs and being cognitively disabled. i mean, with PVS, you're assuming that there's no sense of self/others/awareness. even babies have awareness. and my former mute autistic children certainly had emotions.

anyway...my living will clearly states that UNDER NO TERMS shall i remain hooked to machine if significant brain damage has occured. (the "signifiant" is detailed).
 
I had cousin that I never met. He was diving off a cliff with some friends and his head hit a rock . His friends rolled him on wooden barrel to get the water out his lungs not knowing how badly he was hurt. My cousin was paralysis from the accident and this was over 60 years ago and there was no hope for him to recover. His parents had the doctors very quietly end their son life.
They did not want their son to be helpless . But the father dies of a broken heart before his son dies. My uncle and aunt did not try to keep their son alive. There is no answers to how far a parents shoud go to keep therir child alive. And the court does have a say in this too, and that is where is get messy! Should the court be allowed to step in and tell the parents what they can and can't do?
My aunt and uncle would not had been able to do what they did today.
 
I would have to pull the plug.....but I won't judge anyone for not doing that
 
I was reading stories from families who had Tay-Sachs kids. (a nereological disorder which is prolly VERY simlair to this case) and one of the parents wrote about their affected kid.
" I was so relieved when she died. No more pain, no more suffering. I felt like her funeral was her party." Because the thing is, kids with extreme profound degenerative mental stuff, tend to be super complex and very medically fragile.
I don't think anyone really knows what they would do in a sitution like this.
 
deafdyke said:
I was reading stories from families who had Tay-Sachs kids. (a nereological disorder which is prolly VERY simlair to this case) and one of the parents wrote about their affected kid.
" I was so relieved when she died. No more pain, no more suffering. I felt like her funeral was her party." Because the thing is, kids with extreme profound degenerative mental stuff, tend to be super complex and very medically fragile.
I don't think anyone really knows what they would do in a sitution like this.
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Ooooh I was tested for the Tay-Sachs gene. That's like...I was just...*shudder* The thought of watching your child regress like that. :(
 
Ooooh I was tested for the Tay-Sachs gene. That's like...I was just...*shudder* The thought of watching your child regress like that
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Tell me about it. It's better then in the old days when there were wards FILLED with Tay Sachs kids. I believe I read somewhere that Tay Sachs is getting to be REALLY rare. Like I thought that Tay Sachs is now only about a hundred cases in the US. Which is good and all.....but I mean....One thing that I think would be a really good idea would be to offer optional (read optional) sterilization for couples who both carry Tay Sachs genes (or other extreme profound genetic diseases or disorders) The effect on the kids and the parents is just too heartbreaking.....nobody should have to go through that......and I do think that if parents underwent sterilization, they should be able to get a lot of major fees and stuff waived for adoption, so they could still have families.
 
most couples who have the gene are eastern european jews. it's dying out because of intermarriage and general geographic mingling. :) there are many orthodox couples who spend a lot to have IVF from jewish eggs because of the gene.
 
it's dying out because of intermarriage and general geographic mingling. there are many orthodox couples who spend a lot to have IVF from jewish eggs because of the gene.
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Thats awesome. On the site I was reading, it was lumped in with other disorders like Sandoff Disease, GM-1 and Canavan disease and the leukiodystrsophies...both prolly b/c they are so rare and b/c they manifest simlairlily.
 
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.
 
This is something that I literally deal with everyday ... I'm very involved with families with Spinal Muscular Atrophy. A condition that profoundly affects the BODY, but not the mind (my best friend has SMA and she's just finishing her Bachelors degree at University - and has graduated all grades since 'forever' on the honour role/with honours etc)

The issue with the family mentioned above is that they wanted to be able to have a SIMPLE procedure done (a trach placed) so that they could take their child home and care for them until they passed away AT HOME.

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.

It's easy for people to say what this family should do - because it's "a child", "a family" and a condition that most people don't understand..... but if it was your family, your child, you DID understand the condition - intimately and there was a SIMPLE way to take your child home to die more comfortably ... I'm almost certain you'd be doing exactly what this family is doing!

As a Canadian, I just wish our Canadian Government would empower this family take their baby home, to live and die in peace :(
 
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