Baby Born without a Brain

[Chazemataz]

...and the mother's blog is the most depressing thing i have read in a good while.

The story of Faith Hope: 25 days old

I mean, I admire her bravery for wanting to keep the baby alive and loving her child. Both good things. However, the poor kid doesn't even have a brain. How on Earth is she supposed to live a happy, fufilled life? Does Faith even recognize she's alive?

 

[Jade Margery]

First off, 'it' is a she. Am reading blog and info on the condition--this is very interesting and I've never heard of it before. Shall no doubt post more later. Question though, what kind of ethical situation do you feel this applies to? What do you have in mind for the discussion?

Edit: Wow, that is... I don't even know what that is.

Reading this blog, and info about the disorder, I think I don't feel bad for the little girl actually. I feel sympathy, yes, but not a lot of sadness and it does not seem depressing to me. Apparently she can't feel pain and she's obviously very loved and well taken care of. True, she won't live a normal life, and maybe she won't live very much longer, but so long as her mother has no regrets I think things will be okay.

I wonder about her behavior--some research on the web leads me to think perhaps she is the only child with her anomaly to have lived so long. Clearly she does have some of a brain. Stroke victims who have lost portions of their brains often see other portions taking up the functions of the dead parts--perhaps with so much stimulation, something similar is going on for Faith? I hope so. Her mommy may hear her speak one day, if that is the case.

I guess I'm split-minded about things like this. I honestly don't know what I would do if I found out my child had that condition, but I admire the way Myah is living with her daughter, obviously treasuring every moment of it. More power to her.

Never thought I'd say this, but I'm rooting for Faith.

 

[Chazemataz]

First off, 'it' is a she. Am reading blog and info on the condition--this is very interesting and I've never heard of it before. Shall no doubt post more later. Question though, what kind of ethical situation do you feel this applies to? What do you have in mind for the discussion?

I figured it would make a good debate because it has to do with things like pro-life & abortion. the lady knew she would be born like that but she still had it anyway. Did she make the right decision? Or should she have had an abortion?

 

[Jade Margery]

Nah, I don't think anyone *should* have an abortion unless they want to have one. Obviously, Mom did not want. Do you mean some babies are better off dead than alive? Possibly... if they had very painful conditions or horrible living circumstances, but since Faith has neither, how would aborting her have been the right decision?

I admit that if I were in Myah's place I would probably abort (not sure though, pregnancy tends to release all kinds of 'love the baby' hormones to dissuade one), but I don't see it as a case of right or wrong. I think we have to trust women to decide whether the life they are creating will have a place in the world or not. Folks who think women aren't capable or worthy of making that decision.... ugh. Just ugh.

Myah decided to keep her baby and she seems happy with her choice. I know a girl who has gotten an abortion, and she seems pretty happy with her choice too. I'd say both of them made the right decision.

 

[lawtonfogle]

I figured it would make a good debate because it has to do with things like pro-life & abortion. the lady knew she would be born like that but she still had it anyway. Did she make the right decision? Or should she have had an abortion?

I think the key thing to note about the pro-choice side is that they are... for lack of a better way of putting it... pro-choice. If she wants to keep this kid for as long as she can, that is her choice. Is it the best thing for her mentality? I am not sure. Should she be kept under watch once the child's body stops functioning (can you really call it death)? Probably, since it seems she has become attached.

A better question is if this child is actually alive or not.

 

[Jade Margery]

Well, she does have part of a brain, she's breathing and eating and wiggling, so that seems like a pretty straight forward answer. Even people in vegetative states are technically alive, so I think this baby definitely is.

 

[LightHorseman]

The baby is definately alive. Whether or not the baby would particularly notice when she stops being alive is another matter entirely.

I remember a similar case a couple of years ago, and being shocked and saddened by it too.

I sincerely believe that Faith is probably the best off person in this situation, as she is almost certainly unaware of, well, anything, least of all her specific situation or what is wrong with her. The person I feel sorriest for is the mother, but its the same compassion I would feel for any parent with a child with a terminal condition. Sure, this baby doesn't have a brain, but then, most 25 day old neonates aren't exactly displaying a lot of brain function. At that age its far more about the bond the parent has with the child than anything that happens to the child. This kid is going to die, and this parent is going to be hit hard.

Some people would say "better to have loved and lost then never to have loved at all". I hope that the mum can feel this way when Hope passes on. Certainly worth a prayer or two that the situation resolves quickly, and it is a net positive for the mother and family.

 

[PassionFruit]

I figured it would make a good debate because it has to do with things like pro-life & abortion. the lady knew she would be born like that but she still had it anyway. Did she make the right decision? Or should she have had an abortion?

Well, being pro choice, I respect her for making a decision that she felt was right for her. I understand the child's condition, but I don't doubt the mother made an informed decision.

So to me, it doesn't really matter if I (or anyone else) believed she made the right choice or not. As long as she felt she made the right decision.

 

[flicka]

This is just sad, but it seems like the mom is doing her best to find some good in the situation and help her cope.

 

[lawtonfogle]

Well, she does have part of a brain, she's breathing and eating and wiggling, so that seems like a pretty straight forward answer. Even people in vegetative states are technically alive, so I think this baby definitely is.

Actually, I would say that it is not that clear cut.

Then again, it depends upon how we define death. If we are speaking of heart beats and breathing, then she is alive. But so to are those who have long since lost any and all mental function and still have machines doing it. Maybe it is a heart beat under your own power, but then are those with pace makers pseudo zombies?

If we instead were discussing information death, then she was never alive, because there was no higher brain to have information of the person to die, but then again, when does a normal child gain enough information to be alive?

I think it is easy to take a big brush and paint this picture, but when you start to stare at it for too long, you notice that the big brushes overlapped, and when you go and get a little brush to fix it, that is when you realize you haven't a clue what to do (at least I don't).

 

[Kharak]

Babies born with Anencephaly are not simply, "born": They are waiting to die. The tissue responsible for higher brain function never develops (an accident from fetal development). As a result, the fetus in question is actually incapable of reacting to stimuli or even utilization of all senses after a certain level of severity. The brain may develop partially at times, or may simply be absent entirely.

Attempting to argue that an infant suffering anencephaly is "alive" as any human is inaccurate, and I will be brutally honest. The infant will not live very long, and anyone suffering anencephaly will never live a normal live, or live much at all.

 

[rosenherman]

True, she won't live a normal life, and maybe she won't live very much longer, but so long as her mother has no regrets I think things will be okay.

I wonder about her behavior--some research on the web leads me to think perhaps she is the only child with her anomaly to have lived so long.

I saw a man in his twenties on TV a few years ago who was anencephalic. His mother taught him to swallow. That was all he could do. He uses diapers, he can't see or hear and can't even turn over by himself. I question her judgement in letting her live.

 

[wanderingone]

I figured it would make a good debate because it has to do with things like pro-life & abortion. the lady knew she would be born like that but she still had it anyway. Did she make the right decision? Or should she have had an abortion?

I'm pro-choice, that means CHOICE. She CHOSE not to have an abortion and that's fine. The child seems to be getting appropriate care for her medical situation. I don't actually find the blog all that sad. Mom is coping with the situation, has support, seeks support and is making decisions for her child's care.

I do find the notion that she got hate mail sad, and while mom seems to be a little bit in a bubble she doesn't seem to be ignoring the fact that her child has a serious medical problem and she's doing what she needs to do to cope and provide care.

 

[jayem]

There is partial anencephaly, which Faith obviously has. (Probably hypoencephaly would be a better term.) Babies with complete anencephaly never live more than a few hours. It sounds like the mom has a good handle on things. What would be grossly unethical is if the baby were to be put on life support when her condition deteriorates.

But consider this. I attended a seminar where this proposal was made by a well-known medical ethicist. He suggested that complete anencephaly be added to the legal definition of death. Thus, all babies with complete anencepahly would be declared dead at birth. So that their organs can be harvested for transplant (with the parent's consent, of course) before their hearts and breathing cease. He wasn't just posing a hypothetical--he was dead serious (no pun intended.) And he was on staff at a Catholic university, no less. So how about it?

 

[OdwinOddball]

Cases like this are always so hard to judge. On the one hand Faith is alive and living on her own power, for over 8 weeks now, not just 25 days.

On the other, she will never develop a brain capable of normal human interaction. Quite likely she will never be capable of anything but reflex and autonomic reactions.

The real question in situations like this is:

Is Faith alive for Faith's benefit or for her mothers?

Fortunately, they do have a DNR order in place it seems, so if Faith is ever unable to live on her own she will not be resuscitated.

 

[Jade Margery]

There is partial anencephaly, which Faith obviously has. (Probably hypoencephaly would be a better term.) Babies with complete anencephaly never live more than a few hours. It sounds like the mom has a good handle on things. What would be grossly unethical is if the baby were to be put on life support when her condition deteriorates.

But consider this. I attended a seminar where this proposal was made by a well-known medical ethicist. He suggested that complete anencephaly be added to the legal definition of death. Thus, all babies with complete anencepahly would be declared dead at birth. So that their organs can be harvested for transplant (with the parent's consent, of course) before their hearts and breathing cease. He wasn't just posing a hypothetical--he was dead serious (no pun intended.) And he was on staff at a Catholic university, no less. So how about it?

Well, with absolutely no brain (no ability to feel pain or even move) and the parent's consent, I don't see anything wrong with donating the organs.

 

[onemessiah]

Wow, that was depressing...

Who's to say if the mother made the "right" decision? The baby's fate was to die in the womb, or die during/shortly after birth. With no apparent suffering on the baby's part, extending her life, while blessing the mother with immense joy, seems like it was a good decision.

 

[ranmaonehalf]

so does a brainless brainy have a soul?

 

[Jade Margery]

Good question. Does anyone?

 

[rosenherman]

Wow, that was depressing...

Who's to say if the mother made the "right" decision? The baby's fate was to die in the womb, or die during/shortly after birth. With no apparent suffering on the baby's part, extending her life, while blessing the mother with immense joy, seems like it was a good decision.

Since she can't communicate in any way, how does anyone know she's not suffering?