Monday, 02 November 2009
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Difficult decisions
I ran across this article this morning. I am really torn by what I read.
A child in Britain was born with congenital myasthenic syndrome. It is a muscle weakness that limits his movements and his ability to breath on his own. He has been in the hospital on a vent since the day he was born.
The mother has agreed with the doctor's that the time has come to remove the child from the vent and allow him to die peacefully. The father disagrees. His standpoint is that the childs brain is not hampered in any manner. The child is aware of his surroundings, recognizes his mother and father, and can play with toys in a limited fashion. His thought is that it is not up to the doctor's to determine the quality of his child's life.
I am torn about how I feel. As the mother of a child that spent a month in the NICU, I know first hand the toll it takes on family. I can only imagine how difficult it has been this past year for both parents. However, the father makes a very valid point about the child's brain function. Admittedly, I have no idea the survival rate for this disease and I can't imagine spending ones lifetime in the hospital would make for a great life, but who am I to decide that?
As it stands now, the parents inability to agree on treatment puts the matter into the courts hands.
I look forward to your thoughts.
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Comments (23)
What a deep issue. I agree with both sides....I'm not a mother but I know watching my child suffer would be the hardest thing in the world to watch. But I also understand the father because the child is still there...that's a toughie. I...........I plead the 5th.
honestly? I think there are details missing. If the only life support was the ventilator, they probably would have made arrangements a long time ago to get him set up at home. so I say not enough information.
(I know, Im SO helpful!
)
@der_lila_Stern@xanga - LOL, I wondered about that myself. From my understanding, the muscle issue is a serious one. I am thinking there has to be issues with him supporting himself even in a sitting position, not to mention potential heart issues they didn't mention.
You are always oh so helpful.
yah i saw that it was sooo sad! i feel so bad for children like that! theres also a dad on here i read everyday who has 8 kids and this one lil baby has cancer nd he blogs everyday about how hes doing and oo hes so sweet it breaks my heart!! Eli is constantly in and out of the hospital and he wasnt born with it before he was a normal happy child now hes sooo sad and tubes and awwww makes me wanna cry.dedicated dad tho for sure!
I can't begin to say what I'd do, unless it was me in this situation. I don't know how the parents or the baby feels, and since babies cant talk it would be a difficult decision. I know what a toll an extended hospital stay of any family member can take on the rest of the family, and I wonder if the parents feel selfish or not?
I've told Tim several times my feelings on things like life support and the thought of suffering from that 'Locked In' syndrome...no, thanks. I go batshit stir crazy having to sit idle in the hospital for three days. I wouldn't want to live that way.
I really think having full mental function would be worse in this case. You're going to be bored and not be able to do a thing about. You'd be smart enough to know what you're missing and not be able to do anything about it. Medical bills and trips to the hospital and the general stress of having to care for a child that is 100% dependent upon you seems like it would bog down life for everyone. And, again, the kid's going to be smart enough to realize this himself at some point. Personally, I'd be with the mother on this one.
Though I can see the dad's point of view as well...there's always hope for a cure, I suppose. And where do you draw the line between 'worth living' and not? Is it breathing on your own? Or being able to scratch your own nose? Or...? I'd be interested to know what the courts return with...
Are the parents still together (as in still in a relationship)? I did not take the time to read the article yet, but I would have thought they would attempt to resolve this outside of the media attention before bringing it there. It's a really private matter (er, well it would have been had they not brought attention to themselves). As for me, I would never in a million years choose to end the life of my brain-functioning child. This is purely because I know that I may never have the chance to have a child, and were I to do be able to do so- no amount of hardship would be able to make me extinguish it. There is ALWAYS the possibility of a cure.
@XMyXAlterXEgoX@xanga - The parents are not together any longer. I was unclear if it was a result of the situation or if it was something prior to the birth of the child.
In that case I just don't know. Very Sad either way you look at it though.
I think that daddy is right. ♥
I agree that I think there is a lot of information that isn't provided... if the child is able to play with toys (even a little bit) then WHAT DOCTOR would say he's better off being taken off life support? I'm DNR. However, if my child was able to play with toys at all, and I was told that he's COMPLETELY aware of his surroundings and was able to interract... I'm not sure I would consider that being a "vegetable"... Which is when I think the "plug needs to be pulled".. Crazy topic.. as always! ;)
Not a mental vegetative state, I would say that we do not have the right to put to death, and we ought not to give up hope. But the persons affected by the child's care, need to be the one's to make the decision to remove outside intervention. Hopefully, this child can live, and like Stephen Hawkings find a role in life.
@AbsolutelyNormalChaos61308@xanga - LOL, you know me I like to stir it up.
Ooh wow. Yea that is hard to pick a side on. On one hand, who wants a life long stay at the hospital? On the other, who is to say that life in the hospital isn't better than no life at all? Thats got to be a hard position to be in, emotionally and financially. I don't know what I would do.
I understand both sides of the situation. But, I don't know because being in your hospital your whole life doesn't exactly sound great, does it? But, I don't know..
I believe the mother is right. It is not fair on the child to bring him into this world in that condition.
Having those limits would make me an unhappy person. In fact, I would rather be dead. However as much as it is best that the child dies now then spends the rest of his time tied to a machine, could you really look at your child in the eyes and pull a plug on him? Some things are easier said/reasoned out then done...
@vtvtlpbx@xanga - Yes, I think that is where I would have the problem, knowing my child was aware of what was going on. Thanks for stopping by.
I'd crush me to death, for sure. As it stands, I can't side with either parent. Baby life is going to be so precious to me...if I'm able to create it. Having possibly my only child suffer beyond all reason is unfathomable to me; having to choose whether that child lives or dies is even worse.
You can't fix the child. You can't give him a normal life. But still, he lives, and he is a shining star of life force in the universe. It's a hard choice.
If it was up to me I would want my baby alive no matter what.
I agree with the mother. And especially because the child's brain is fully functional, it can feel every bit of pain/suffering/discomfort inflicted upon its little body. It's worse than having a non-functional brain in my opinion.
I would need to read the medical chart and probably do some medical research before I would ever be comfortable giving my opinion on this child's situation. However, if a child was never going to be able to sit up or breath on his or her own I would think that machines should be withheld and nature should be allowed to take it's course. Such a heartbreaking situation.
There is no clear cut answer to this one. What you've got are people simply trying to make a "best case" decision in a worst case scenario with incomplete information. I mean, who's to say that the child is suffering? And if he is able to play with toys, even though it may be limited, there is joy in this child's life. And I agree with some of the other comments in that it would be near impossible for me to do anything that I knew would eventually end my child's life. Sheesh... I sympathize with the parents. That's rough.
I refuse to judge either parent in a case like this. So sad.