What is anencephaly?

Wikipedia says, "Anencephaly is a cephalic disorder that results from a neural tube defect that occurs when the cephalic (head) end of the neural tube fails to close, usually between the 23rd and 26th day of pregnancy, resulting in the absence of a major portion of the brain, skull, and scalp. Children with this disorder are born without a forebrain, the largest part of the brain consisting mainly of the cerebral hemispheres (which include the neocortex, which is responsible for higher-level cognition, i.e., thinking). The remaining brain tissue is often exposed—not covered by bone or skin." http://en.wikipedia.org/wiki/Anencephaly

You may be thinking..."what? In english please!" Basically, Baby Elspeth's head didn't close up during the early stages of pregnancy. Therefore, her brain didn't fully develop. She only has a brain stem which allows her basic functions of life while she is with me. Without my "life support" she will only be able to function for a short time, if at all.


What will Elspeth look like when she is born?

Her head is open and exposed. She has no scalp, skull or even skin covering her brain. She also might have bulging eyes from her sockets. There are possibilities that there might be other common birth defects like a cleft lip. We hopefully will know more details when I have 4D sonogram later in the pregnancy. I hope that those who come to see Elspeth will not be alarmed by her appearance, it's actually something that I worry about a lot. I think that knowing what she might look like before will help those who see her to be prepared. To me her spirit is perfect and beautiful, so I am not afraid.
The photo is from this site: http://www.anencephalie-info.org/images/med_sketch.gif


How long with Elspeth live?

We have no idea! Everything I have read says that the survival rate through birth is only 25%, so we have a very good chance that she will be born still. We are hoping and praying for a little time with her...an hour would be nice.


Will carrying Elspeth to term hurt me?

No, it will be like a normal pregnancy. I have just started to feel tiny kicks and wiggles. The birth will be normal like any other baby. Well, that's what I have been told but I wouldn't actually know because I haven't had a baby before. There is a greater risk for having a breech baby with anencephaly because these babies are notorious for not turning around. Another complication could be a condition where the baby doesn't swallow the amniotic fluid and it builds up. This is called polyhydraminos. Luckily, on our last sono Elsepth's stomach had amniotic fluid in it so I am encouraged by this finding.

How/why did this happen?

Again, another unanswered question. Anencephaly is a neural tube defect which basically means a folic acid deficiency. We have no idea how I was deficient in folic acid because I took pre-natal vitamins for several years before concieving. So, why did this happen? Because it's God's will. That's my best answer. He knew I was the right mom and Ryan was the right Dad for this sweet baby.

Will this happen again?

Perhaps. Women who have babies with anencephaly have a 1/2,000 chance of having another baby with anencephaly. They also have an increased chance of having another baby with a neural tube defect like spina bifida. The plan is to load up on rediculously high doses of folic acid before trying to concieve again and pray for the best! Many many women on my support group have multiple healthy pregnancies following a baby with anencephaly.

I think I have covered the most "common" questions that people have asked me, but if you have a different question feel free to post it. I might not know the answer yet, but I will try to find out for you.