The Implications of being Born Without a Brain

According to a Fox News story, a girl who while in utero was diagnosed with Hydranencephaly - a condition where the brain’s cerebral hemispheres are absent - has made it to six years old.

The condition means that the child only has a brain stem which controls the key functions that sustain life but she has no cerebral cortex. Needless to say, this is an untreatable condition.

From my vantage point, this case opens up several cans of worms relevant in many ethical discussions that all stem (pun unintended) from the basic philosophical question of - not what is life, but what is humanity?

I am pro choice. As such, I say that this child’s mother should have had the choice to carry her damaged fetus to term. But I would not have made the same choice, even if I knew that my baby would make it six years rather than the year or so that most infants with this condition last, because in my view, this child is no more human than my car.

That’s hyperbole. The baby has human DNA and human parts. I know that my car doesn’t. But both the child and my car lack humanity. My car is not alive yet it needs fuel to go, releases waste products after using the fuel. The baby is alive but really, what kind of life is that?

In my estimation, it’s savage and cruel if a person knowingly allows a child to be born who has a terminal condition which will cause the child nothing but agony for it’s short life. This is more complicated than that but it can be argued that the life that this baby has been forced to endure is at least as cruel.

This also impacts how we might examine end of life issues. I am reminded of the Terri Schiavo case because she actually suffered from the same malady - Hydrocephalus - which led doctors to declare her permanent vegetative state. It was a state that her husband demanded his wife never wanted to exist in, a state that many of us with living wills would hope that the plug would be pulled.

Many of us - including myself - didn’t view Schiavo as living. What was she? A car with the ignition turned on. It will run until it runs out of fuel or breaks down, but nobody says the car is alive.

But, to play the devil’s advocate - maybe this six year old without a brain is proof that what we think we know about humanity is faulty?

I cannot make that argument, though I welcome people who can. When I read in the story that the child’s mother says “She’s a survivor, and she survived for me for a real long time,” I see the same delusions that was in Terri Shiavo’s family, who swore that her random movements actually was Terri in there. They are delusions brought about by the noblest human emotion - love - but that doesn’t change the fact that they are delusions nonetheless.

These situations are tragic but we should not let our emotions cloud the truth. These people are alive, but they are not human. I would not want a child to live this way nor my spouse nor myself. And I find it somewhat indefensible that others would.

I think this is where you nail it. The mother is misguided (IMO, of course) when she uses the word “she” to describe her daughter. There is no “she” in that body - without cerebral hemispheres, the brain is, neuroanatomically speaking, pretty much like a lizard’s.

Isn’t a female lizard a “she”?

Incidentally, upon reading the article more closely, I noticed that the mother was not informed of the condition until only one week before delivery. This is even more tragic because even with what she knew, I don’t think abortion would have even been an option.

If it were me (and thank goodness it wasn’t) and my spouse has to have this baby, I do the same thing with it that I would do if my wife or child had the same prognosis: Remove the feeding tube and let it slip away.

This is consistent with my view that this isn’t life, it’s a parody of life. Just because it’s a tiny baby instead of a fully formed adult, just because it doesn’t have a past which loved ones can hang on to unlike the Terri Schiavo’s of the world, none of that really makes me want to be hypocritical. If I felt that the proper course for Schiavo was to remove the feeding tube and let her slip away with whatever dignity she had left, that has to be the proper course for this infant with the same condition… right?

The baby isn’t suffering. The baby doesn’t know anything. The only real victims are the parents, hanging on to a shell of a child.

John,

I agree with you. That and, not knowing that this was even a thing before looking it up, I am rather freaked out by it. I bet actually looking at one of those would be the most striking moment of uncanny valley possible.
I wonder though, about the opposite. If it were possible to create/grow in the womb and sustain only the cerebral hemispheres and that it was possible for it to perceive, think, communicate and affect its surroundings through artificial means, would that be closer to humanity? Would it be as much humanity as you and I?

I agree with the concensus here. To me, the life that matters is the consciousness/awareness. The rest is hardware.

But as far as solutions go, it’s tricky.

There’s no human life in that child, but to end her life raises difficult slippery-slope questions. I would be comfortable with a concensus opinion that allows her to be “terminated” at the parents’ request, but I’m also comfortable with that being a corner case where the general policy doesn’t allow anything to be done other than keeping her alive and as comfortable as possible.

BTW, I see nothing wrong with my use of “her”. I might use that term for a femal lizard, too. Here, I wouldn’t use “it” merely as a matter of respect. I’d be astonished for a parent to say “it”. That isn’t necessarily a dilusion. In any case, I don’t blame the parents for clinging to any scrap of humanity they can find.

It’s a tragedy, no matter what.

I had a friend (co-worker) who had a son who was extremely mentally disabled. At age 10 or 12, he couldn’t speak, and couldn’t stand, sit, or eat without assistance. But he was always happy, bright smile, laughed a lot, and brought a lot of joy into their lives (along with a lot of work and stress, of course). They loved him dearly and the last thing I’d ever do was in any way diminish him in their eyes. That’s humanity.

And, neither do I.

I was being hyperbolic to make the point - even when I was typing my post, I had to resist using “she” and “her”.

I do not blame or criticize the mother for calling her daughter “she”.

and (not to sound callous but) whoever is having to pay for it.

A friend’s niece gave birth to a girl she knew had no brain, just a bit of brain stem. This girl had autonomic functions but no senses. And in the absence of a cerebral cortex, no consciousness or awareness of any kind. My pal said he would look into her eyes and there was no one home.
The child lived to be 1.5 years old and then died. I have to wonder what the point was.

What’s the point of having any children? They’re all going to die eventually anyway.

As is so often the case I’m not certain what the debate is.

I am certain that it’s easier to say what one would do in this mother’s circumstances, but much harder to do it.

Anencephaly is a pretty clear-cut case–generally considered to be incompatible with life–but I’ve had a number of clients with loved ones (including many children) who were either brain injured at birth or suffered severe brain injury from one cause or another. They’ve all encountered people who say that because there’s only minimal response or a very low level of cognitive ability, the right/kind thing to do is to let go.

Again, that’s really simple from the outside looking in, but unless the child is in pain can we really say it’s kinder to cause death or let the child die? And from a practical standpoint there really is no moral or legal way to cause or even let the child die unless she is on life support.

I’m meandering a bit but what I mean is that (assuming there is life support to remove) letting this child die seems a fairly straightforward and moral choice, But when you start making judgments about what kind of life should continue where there is some level of consciousness (or even some level of hope that there may be in the future), it becomes much more difficult and I think fraught with peril.

If they can afford (either on their own or with donations given by fully informed people) to pay to keep her alive, I guess that’s their right. The baby/child/whatever isn’t suffering. I think it’s kinda dumb, but I understand. It’s a forgivable dumb.

Insurance or taxpayer money shouldn’t be spent on this. It’s a lost cause.

If the family was truly noble, they would let this baby go, donate the organs to save kids who have a chance, and move on. But very few people are truly noble when it comes down to it (although most people think they would be), so I don’t hold it against them. Very sad story all around.

A former coworker had a baby like that. I lost contact, but the last I heard the baby was alive and 7 years old. The baby caused the family to fall apart, and it was just a tragedy all around.

Back in college, in my Psychology 101 class, we learned that there were some people who were functioning adults, as normal as anyone else, whose cranium was replaced by spinal fluid. Apparently they were able to utilize it somehow.

This is hardly helpful.

There’s a family in my old town who had a child with hydranencephaly; the newspaper did a big story about them when she was about 7 years old. She had sleep and wake cycles, and was clearly not blind or deaf, but had no mobility or cognition (ability to learn). She was tube-fed, and they loved her enormously and took care of her at home, with some outside assistance, until her death about a year ago at the age of 12. As for who paid for it, they were low-income anyway and were qualified for Medicaid even if they hadn’t had her.

Many years ago, I knew a woman who I thought for a long time had polio because she wore leg braces and was old enough to have had it, but then I found out that she had cerebral palsy and a seizure disorder as a result of her premature birth; she was adopted and has reason to believe that it was an attempt at a self-induced abortion and her biomom was farther along than she thought she was. My acquaintance told me that her doctors couldn’t figure out how she had any mental ability, because her CAT scans looked like Swiss cheese. So, how did I know her? Through our local Mensa chapter; IDK what she’s doing now (last time I checked, she was still alive) but at the time, she was working as an attorney and also had a degree in city planning.

You wanna know what’s really depressing? Go on some of the many Facebook and other pages for hydranencephaly…it’s pretty damn horrifing…

And yes…What people don’t understand is that caretaking a profoundly disabled child takes SO much energy…and causes major burnout…meanwhile, the mother is usually saddled with EVERYTHING…Parenting a profoundly disabled child is parenting on steroids…

It seems like most people here have the opinion that if you put food, effort, time, love, water and more food into a baby and it doesn’t grow up to be a functioning human being, that this is somehow a waste of time, energy, money, food, and/or love.

I have never dealt with a mentally retarded individual on a day to day basis, and as others have mentioned I can only imagine that parenting a severely disabled person would be possibly the most difficult thing anyone could do. But I also imagine that a person could get a lot out of it, learn things, experiences things, and gain new perspectives about humanity and life itself by caring for a profoundly disabled person, such as someone with no cognitive abilities whatsoever. Hypothetically, someone could be as loving and devoted to a person like that as to anyone else, never expecting or desiring any love or affection returned, and be ok with that.

And what’s so wrong with that? What’s wrong with people wanting to dedicate their lives to a person who will never function, never know what’s going on or aware of their own existence? People do it because they want to do it, it is important to them, and it may even have a positive impact on them in ways that would be impossible for anyone to understand.

It may also split families apart, etc. But it might not always do that.

I don’t think that to be human you have to have a working brain. And I don’t think that you have to have a working brain to be able to be loved, cared for, and to contribute to society by your mere existence.

I am generally a pro-lifer. However, I can support abortion choice in cases of rape & incest up to the first trimester, and life/physical health of the mother & severe child deformity up to the last moment. If an anacephalic child makes it out alive, I don’t think I can ever support active euthanasia, tho I suspect some here would have little problem with that.