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I know some people that have a kid like that, its a complete vegetable that cannot walk, talk, or eat on its own. I think keeping children like this alive is actually kind of cruel, mom and dad may take care of it as long as they can, then they become a ward of the state cared for by minimum wage employees in dilapidated old hospitals.
You are so right.
For every one "Jax," there are at least 100- 1,000 kids like you describe.
Stories like this are borderline unethical as they give parent false hope. Both the mag and the parents are merely exploiting him.
Where is the story about the wards of the state drooling and in diapers at 15yo? I guess no one wants to see or talk about those realities.
This baby is missing most if not all of his brain. Look at the pictures. There is no hope for his 'brain' in this case, or any others like him.
It's not like he had a TBI or surgery to remove some of his previously intact brain. He has no brain, essentially, which is why it's amazing he's lived this long. The fact that he has defied odds, though, doesn't mean his QOL or prognosis is any better. Like I said, sad situation for sure. Difficult for the parents no matter how you spin it.
They didn't call it that in the article, but the pictures of this baby look like pictures I have seen of anencephaly. I just hope if I were in that situation I would consider the child, not just my own feelings, and let him go. I understand the heartbreak, but I think I would let him go.
I think this falls under the category of just because you can doesn't mean you should.
This is where those of us who have less of a sympathetic response to an obviously suffering living thing, can be an advantage.
When my father had collapsed from a heart arrythmia, and could not be rescusitated, the physician told us that he could be kept "alive", but has irrepairable brain damage that point, due to oxygen dep. the decision was painful but clear: do not keep "alive". I know his own thoughts on it from having the discussion with him in his living years: do not keep "alive". It was a painful, painful time for me, and I still miss him every day. Every, single, day. But being kind and watching his physical body go back to which it came, was a way to say goodbye.
this is such a sad story. i understand the parents holding onto the hope of keeping him alive as long as possible. it's got to be so tough for them. but man...this is sad.
That's the existentially Hamlet-esque question of the day, isn't it.
If the awareness of life is as limited as we assume this child's awareness to be, is it fair, just, or even logical to presume to define a life worth living by the measure of one we presume be cognizant of life's full possibilities. We I look at an ant, do I wonder if they wish they have never been born an ant? Do I believe that the ant's life is not worth living because it can't enjoy a Charlie Parker solo, a Ansel Adams photograph, or fully appreciate the dawn of a new day? I would have to say that I don't, because I have no conceivable measure of what makes an ant's life worthy of living. So by the same token, because I can not reasonably divine this child's measure of what constitutes a "good life," how can I, or anyone for that matter, answer the question?
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Do you think that kid will have ANY sort of a life EVER? No. It's the same with parents who choose to have conjoined twins. Totally selfish. Totally. I feel awful for those kids because of their selfish parents.
Again, this question goes to the heart what is "any sort of life" the child is alive so at the most basic level the child does indeed have some sort of life. Is it the quality of life that we would expect but then again is that a fair comparison.
As for the question of parental selfishness, the very act of conceiving a child is selfish. No child has ever been asked to be born, and as every parent knows, at some point that child will remind them of that fact. So when we bring a child into this world, it is no guarantee that they have a good life. We work from the assumption that they will whether that assumption is borne out is another matter. So the immediate reason that we have children is to innate desire to create this being that is ours to love, to hold, to cherish, to make ourselves fulfilled, at least until the destroy our favorite piece of clothing, wreck the car, or worse, much much worse. So, are these parents being selfish, yes they are, just as all parents are to one degree or another.
As for the question of parental selfishness, the very act of conceiving a child is selfish. No child has ever been asked to be born,
So the immediate reason that we have children is to innate desire to create this being that is ours to love, to hold, to cherish, to make ourselves fulfilled,
So, are these parents being selfish, yes they are, just as all parents are to one degree or another.
Anencephaly, no matter what other term you use is tragic. It's important to note that this child doesn't "know" he's alive. He has no functional cerebrum, so far as we know, he only "spinally" senses things like being moved around - and even then there is no actual conscious thought process. Once in a great while these babies live more than 24 hours. That's nothing new. But a year is very unusual. Unusually devout care must have been carried out.
The good news is that this is an accident of development, not genetic, and implies in no way that any subsequent pregnancies by this couple are in any way more likely to happen to them compared to any other pregnancy by anyone else.
The good news is that this is an accident of development, not genetic, and implies in no way that any subsequent pregnancies by this couple are in any way more likely to happen to them compared to any other pregnancy by anyone else.
This brings up another topic.
I would never try to have another child if something were so wrong with my first child. I do not understand why parents with special needs children keep trying. Why would you want to bring another suffering soul into the world?
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