Wow, what a wonderful blog. Bring your kleenex.
[h/t]
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Tanya adds: After trying to take in that blog, I Googled “anencephaly” to, amazingly, find this website.
You are valuable because you exist.
Not because of what you do or what you have done
but simply because you are.”
Max Lucado
by 
There are many mothers going through the same thing…Sadly most of our babies did not live nearly as long as Faith has…She is an amazing little girl and I hope she will help us show the world that our babies are more than just brain dead shells of a human. They are special and they deserved to be treated with respect and dignity no matter how long they may live.
I have been following this remarkable story for quite a while now after reading about it on The Anchoress blog. That young mother is beyond any description I could use. She is remembered in my prayers and now with some new coverage maybe a few more prayers.
It’s a miracle this child has lived so long. I think the mother is very brave as surely she has received advice to give up on her child.
I am very conflicted on this topic though.
Her child is still human and has all the dignity of a human baby. I support letting nature takes it course. I want to make that clear first.
However, I am concerned that people might be deceiving themselves as to how much their anencephalic baby is actually experiencing. From what I’m reading, the brain is basically not present, except for the portion of it that automates the functions of the body. It is capable of performing reflexive actions, and this is basically the extent of the behaviour that is described in the FAQ of the site that Tanya linked. I think people are largely unaware of just how much of the human body is automated. It would be like replacing the brain with a computer that is able to coordinate basic functions and reflexive movements.
Unfortunately, the part of the brain of these babies that is missing is the part that contributes to consciousness and the subjective experiencing of the environment. While the child can still be loved, I don’t know that he/she is capable of experiencing it.
In short, while these children can survive for a short time and while I don’t recommend that parents like her do anything different, I am honestly conflicted over the matter of whether these children are truly alive.
Matthew N: would you consider a person in a coma alive who hasn’t had consciousness in a long time?
Elizabeth: We don’t know what is going on in the brain of a person with a coma. Even if the brain is damaged, we don’t know what is going on in there. We’ve seen examples where severe brain-damage does not prevent thought. While the potential remains for them to experience life, I would consider them alive. This does not seem to compare with what we are dealing with here.
There is a qualitative difference between the capabilities of someone who has a damaged brain, and someone who doesn’t have a brain. For one, there is a possibility of conscious and subjective thought. For the other, there is no reasonable possibility.
If one wishes to believe that a person is alive as long as there is the appereance of life, then I won’t prevent them. I am conflicted because this directly impacts questions of existence. I look at it from the perspective of design. The role of the body is to keep the mind alive, and thus the brain. In that sense, the body is a sacred machine, but without a mind it has no purpose. It is incapable of experiencing anything subjectively on its own. It still has a vested dignity however and so we treat it with respect, but that is not what I personally would call being alive.
I’ve also been following Faiths blog for quite some time. It’s such an amazing story. I think it’s important to keep in mind that considering how much information we think we have, we really do know so little about the brain and how it functions. And it seems as soon as we think we have things figured out we realize we were completely wrong about one aspect or another.
http://babyfaithhope.blogspot.com/2009/03/39-days-old.html
If you look at this entry about faith her mom talks about having a recent follow up CAT scan done as even the doctors are amazed by her quality of life and wanted to confirm her diagnosis. Seems the diagnosis is valid however there is no explanation they can medically give for her eye contact/consciousness/interactive abilities etc. I think the minute we start to assume that we know all the information we need to determine life vs. death in these types of situations we are on very dangerous grounds. But I agree Mathew that there are many situations where the “what does alive really mean” question is very difficult to answer on a medical or spiritual level.