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This child is anencephalic and yes is akin to a "vegetable" as far as neurological status.
Idiotic parents in denial, and even more disturbing is they have a fund-me thing that has recieved 50K+ in contributions so Mom can stay home with the kid who has NO AWARENESS of his surroundings due to the extent of his neurological impairment. So ridiculous.
I would have terminated the pregnancy posthaste, has it been me.
This child is anencephalic and yes is akin to a "vegetable" as far as neurological status.
Idiotic parents in denial, and even more disturbing is they have a fund-me thing that has recieved 50K+ in contributions so Mom can stay home with the kid who has NO AWARENESS of his surroundings due to the extent of his neurological impairment. So ridiculous.
I would have terminated the pregnancy posthaste, has it been me.
And posters here who don't seem to understand his condition.
And posters here who don't seem to understand his condition.
Yeah, I'm not an internet doctor like many folks here, but whats done is done; they can not reverse their decision, nor the babies condition. So, all this talk about 'I would have thrown him in garbage' is irrelevant to me. Not just too long ago, before ultrasound/modern medicine, this would just been nature taking its course.
And besides, I'm in position to be judging other peoples reproductive rights.
Yeah, I'm not an internet doctor like many folks here, but whats done is done; they can not reverse their decision, nor the babies condition. So, all this talk about 'I would have thrown him in garbage' is irrelevant to me. Not just too long ago, before ultrasound/modern medicine, this would just been nature taking its course.
And besides, I'm in position to be judging other peoples reproductive rights.
The abortion thing is obviously no longer relevant. They made the opposite choice. And that's fine. But some people don't seem to understand his condition. It doesn't take an internet doctor to know that this kid has little to no brain function or awareness. He has no QOL. He never will. If by some miracle he lives to adulthood, he will essentially be a vegetable. He opens his eyes, blinks, and maybe even smiles, but he has no awareness that he is doing any of it. This is how babies with his condition live.
His parents can hold onto hope as long as they want, but no one should be deluding themselves into thinking this can all be okay at some point and maybe he will be fine. He won't be. Look at him - he's missing his head, essentially. He has no brain.
And although his parents made the decision to let him live, it doesn't mean it wasn't irresponsible or even stupid, as some think, given his condition. Yeah they made a choice and there really is no "right" or "wrong" in general, only right or wrong for individuals and families, but let's not have hope here. This baby is hopeless regardless of the choice his parents made. And that's sad.
Sometimes I wish people would let nature take its course like we used to for some situations... Sometimes people today just try too hard when everyone knows nothing will come out of it except more heartache. I feel in this case nature hasn't exactly taken its course, as he clearly has many doctors and probably receives a lot of care to keep him alive. Most children like him die soon after birth, if they're not stillborn.
The abortion thing is obviously no longer relevant. They made the opposite choice. And that's fine. But some people don't seem to understand his condition. It doesn't take an internet doctor to know that this kid has little to no brain function or awareness. He has no QOL. He never will. If by some miracle he lives to adulthood, he will essentially be a vegetable. He opens his eyes, blinks, and maybe even smiles, but he has no awareness that he is doing any of it. This is how babies with his condition live.
His parents can hold onto hope as long as they want, but no one should be deluding themselves into thinking this can all be okay at some point and maybe he will be fine. He won't be. Look at him - he's missing his head, essentially. He has no brain.
And although his parents made the decision to let him live, it doesn't mean it wasn't irresponsible or even stupid, as some think, given his condition. Yeah they made a choice and there really is no "right" or "wrong" in general, only right or wrong for individuals and families, but let's not have hope here. This baby is hopeless regardless of the choice his parents made. And that's sad.
Sometimes I wish people would let nature take its course like we used to for some situations... Sometimes people today just try too hard when everyone knows nothing will come out of it except more heartache. I feel in this case nature hasn't exactly taken its course, as he clearly has many doctors and probably receives a lot of care to keep him alive. Most children like him die soon after birth, if they're not stillborn.
Exactly. In this case letting nature take its course involves an army of medical specialists, and I noted in the picture that the child was being fed via a g-tube.
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Quote:
Originally Posted by TwinbrookNine
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.
Jax does not have Anencephaly, he had been misdiagnosed before and after birth. It was later when they discovered he has Microhydranencephaly. While they are somewhat similar they are not the same.
He is not a vegetable. He recognizes things around him, he smiles when he's happy and he talks -- a lot. He also knows the difference between which parent is which, he calls his mom "mama" and calls his dad “Ah Ah†and “Addy†(both mean daddy).
Will he have a completely normal life compared to someone who is born healthy? No. But he is also not a drooling vegetable either.
A comment from the story linked in post #66..
"He added that Jaxon’s condition had been “completely misunderstood†by some who have read about him.
“There are cases of Microhydranencephaly children who have lived into their 30’s, have lived relatively normal lives, can learn to swim, and have and can use their senses, as well,†said Mr Buell."
Quote:
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.
Anencephaly is not genetic. Microhydranencephaly is genetic. His father was tested and found to carry the gene.
Those who say he is "adorable", would prob not say so if he were 14 or 24y/o not 1y/o. He is an infant and does look kinda cute in an alien way. IF he lived to adulthood (which he cannot) it would be not so cute I am sure.
I am not an MD.
However my master's is in medical genetics. I do wish an MD or geneticist (they have MDs or PhDs) would comment in here but I doubt one shall. They have busy full lives and are not on citydata unlike the rest of us bored losers, ME included.
Microhydranencephaly is a FORM OF anencephaly. Note that the entire word "anencephaly" is in there.
BOTH can occur secondary to genetic mutations OR with a normal karyotype.
These patients' brains are mostly brainstem.They are so neurologically primitive that a vegetative state is accurate as a description. Their brains are malformed to the degree that is incompatible with life, ABSENT major med intervention.
This is a case of the opposite of "nature taking its course" as some have said.
It is rather a case of keeping a doomed child alive at great expense and heartache for all.
I highly, highly doubt the PARENTS' description of the child's behavior (recognizes people, smiles) would align with his NEUROLOGIST's assessment.
His brain is lacking ALL the parts necessary for cognition of any type, and for emotion. Even a layperson can see there is very little brain mass there.
It is noteworthy that there are zero med professionals comments included in the article. I would bet my good jewelry that their statements would differ from these deluded moronic parents who are collecting MONEY from the public by tugging at heartstrings.
If one is foolish and selfish enough to keep such a kid alive, asking for financial help to do so is disgusting in my opinion.
YES any parent has the right to not terminate a pregnancy and to nurture a malformed child; inherent in that decision, should be the decision also to NOT ASK FOR MONEY from others to support the child.
Last edited by VexedAndSolitary; 09-29-2015 at 01:08 AM..
*sigh*
I am not an MD.
However my master's is in medical genetics. I do wish an MD or geneticist (they have MDs or PhDs) would comment in here but I doubt one shall. They have busy full lives and are not on citydata unlike the rest of us bored losers, ME included.
Microhydranencephaly is a FORM OF anencephaly. Note that the entire word "anencephaly" is in there.
BOTH can occur secondary to genetic mutations OR with a normal karyotype.
These patients' brains are mostly brainstem.They are so neurologically primitive that a vegetative state is accurate as a description. Their brains are malformed to the degree that is incompatible with life, ABSENT major med intervention.
This is a case of the opposite of "nature taking its course" as some have said.
It is rather a case of keeping a doomed child alive at great expense and heartache for all.
I highly, highly doubt the PARENTS' description of the child's behavior (recognizes people, smiles) would align with his NEUROLOGIST's assessment.
His brain is lacking ALL the parts necessary for cognition of any type, and for emotion. Even a layperson can see there is very little brain mass there.
It is noteworthy that there are zero med professionals comments included in the article. I would bet my good jewelry that their statements would differ from these deluded moronic parents who are collecting MONEY form the public by tugging at heartstrings.
If one is foolish and selfish enough to keep such a kid alive, asking for financial help to do so is disgusting in my opinion.
This is why I was asking what is being done to keep this child alive. I do think the parents are deluded, I don't think they are moronic, they're hopeful and ignorant. It's such a sad situation.
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