About the whole "she's high functioning and doesn't understand that my kid isn't toilet trained" bit

[conuly]

Well, kinda about that!

Aside from the truly hysterical irony of the whole thread, it reminded me of a conversation I had with my mom the same day I posted that CNN article about euthanasia. You know, the one which involved infants with, in one case, "severe spina bifida".

Me: What I don't get is the spina bifida thing. Isn't spina bifida, like, nonfatal?
Mommy: Yes, but the thing is...
Me: *eager anticipation*
Mommy: Well, it's a lack of proper development, so for instance a lot of them are incontinent...
Me: Um, yeah?
Mommy: ...and so they're in diapers their whole lives...
Me: *thinking about that autistics.org article* Yeah, and?
Mommy: ...and they walk strangely....
Me: ...
Me: You've got to be kidding me.

I'm still not sure if she meant that seriously or was just paraphrasing the ideas of people who worry about their poor crippled children, but I was *very* freaked out.

Comments

[atdelphi.livejournal.com]

*nods* My point was that in some rare cases of spina bifida (which I believe are called cranial bifida) the damage is much more severe than in the regular form of the birth defect. I believe what makes hydrocephalus so dangerous in these cases is that the bones of the skull aren't firm enough and the head becomes overlarge. So, in countries where euthanasia is legal, and in these rare cases where it's evident from birth that there will be no quality of life (i.e. if the brain is absent, or depending on which portion would need to be removed) I suppose it's up to the parents and medical professionals whether or not to keep the child alive through artificial means.

[celticess.livejournal.com]

Oh yes I've heard of that but didn't know the name for it. I thought in cases caught early enough they use a type of prothesis to help cause the bone to meld. But if their is actual brain deformity along with the skull bone itself I can see why that might be a case for euthenasia. In such cases I'd wonder if the CSF could really move at all and wouldn't on it's own cause issue over depletion. As it is high icp(intercranial pressure) is bad and I'd have to guess unusually low ICP would also be bad. I had to watch the monitor for my daughters icp and stuff after both her surgeries when she was in icu and later in the neuro ward.

Usually though I thought such babies with open crainums are more common in macroencephaly and gah can't remember the word... that illness where children have no brain only functional brain stem that gives them minimal body function. Those children here(canada) as far as I know have their parents told of the condition and are encouraged to either abort(if caught soon) or donate organs to help another child live(if they were caught later or parents chose to go to term).

I have heard though of some insistant parents carrying such babies to term despite knowing very early in the pregnancy their condition. They didn't donate organs and sought full buriel but before that were insistent their baby would be fine and wanted life support. I guess such parents are in some sort of denial or figure docs have it wrong... or perhaps think that maybe their babies brain will start to grow while on support or that maybe though the brain is small there is something in there. Probably adding to things is the fact some of those infants are fully developed other than the brain. So they look normal so parents can't wrap their minds around what the docs say. *shrug*

[wakasplat.livejournal.com]

Actually, I have read some things by parents who did that. And I know that I would do the same: I made that decision when thinking about whether to have children. If I decide to have a child, the only thing that would make me not have a child is if the pregnancy would kill me. If a child has anencephaly, then that does not make them any less of a person to me. I will do what I can to make sure that their life is as good as possible until they die, and I will use life support (they will die very early in life no matter what I do just based on the nature of anencephaly). Not denial. Just a radically different definition of human life than most people seem to have. Similar definition to the parents I've read who knowingly kept their anencephalic child to term. I will not let someone's alienness to me, even if it's as profound as lacking most of a brain, allow me to decide whether or not I will allow them to live. I made that decision after a lot of thought and research into anencephaly.

[celticess.livejournal.com]

Well I decided early into my trying to have kids that if they had issues and wouldn't survive I'd donate organs. Simply because they'd live on in a sense in another and give someone a chance at the life they never got. My daughter wanted to donate her organs when she died but the specialists told her no because of the chemo and possible cancer spread(beyond what they were aware).

I have lost a child but without chance to name it or do much of anything. I couldn't burry it. I was just in a state of shock. It was the one before my daughter(likely her unidentical). If I had a child with anacephalia I would of taken it to term. I would of given it a name and given it buriel. But I wouldn't of done life support. I would of cuddled it and spent what time I could with it. But I know some people would have greater problems with that and to them abortion as early as found is easier. So is perhaps some detachment from pain by not naming it. For others they swing the other way and can't accept it wont live and wont let it go. It still dies but then they are dealing with the pain of that and depending where you live burden of medical bills. Or again depending on where you live they've had serious dispute with the medical staff over their viability policy.

I have heard though that some with partial brains can live probably years but they are vegetative and don't really do much(the body can sustain itself but that is it). That must be a particularly hard experience.