Info about Anencephaly

As I am sure it is with all birth defects, there are a lot of different opinions on Anencephaly. I will try to give a good summary of what I have found and heard. Please note this is my own summary of what I have read combined with what my doctors have told me and is for information purposes only. I will link the websites I have read. There is still a lot of information on these websites that I will not be able to post so I would love if you link over and read them. The ones that I will link will not have pictures on them unless you click to a different page. One does have a drawing but it is not bad.

Anencephaly is a neural tube defect similar or related to spinal bifida. It happens during the early weeks of pregnancy and can be detected very early, between 12-16 weeks, with ultrasound. The top of the neural tube does not form properly and the brain does not form as well as the skull that covers that area. Some babies are born with a thin membrane covering the exposed area, most that do have a partial covering but not completely sealed in the middle, around here most of babies are born with nothing covering the exposed area. There are babies that are formed with their brain stem or the part of their brain that controls involuntary movements such as heart beat and reflexes after they are born. A few babies we have read about even have a sucking and the grasp reflex. Amazing! We know Joy has part of her brain stem because she is a mover! :) One website says that 75% are stillborn and just says that the remaining that make it through birth live minutes, hours or days. Another website says that 25% of babies die before or during birth and has more statistics saying 75% that make it to term survive birth, 50% have a life expectancy of minutes to 1 day and the other 23% have a life expectancy of a few days. We have read a lot of differing statistics these were ones on the opposite end of the spectrum. We have met with two neotatologists and this is a combination of what they said. He said that she would most likely be born still but some that go to term are able to take a breath before they pass away.  She said there is no statistic on just anencephalic babies but the frequency of any type of spinal bifida is 1 in every 1000 pregnancies.  They have found that most anencephaly babies are girls. It could either be genetic or chromosomal but we would not be able to tell unless they took some of her tissue and biopsied it. Our chance of having this reoccur is 3-5% if it is genetic. (the same percentage that we have with having another baby with a heart defect if that was also genetic) Both said that there was nothing I could have done to prevent this from happening and it didn't happen because of a hot bath or a hard fall. He explained that most of us get enough folate in our diet and that the prenatal gave way more (which I took) He did tell me that the highest offered in a prenatal was 1 mg but that if we were going to have future children I would need to up it to 4 mg a day since they had seen less occurrences of defects on future babies with higher levels of folate (folic acid). He said that there may be a possibility that my body has a harder time absorbing the vitamin which was another reason he upped my dose. My OBGYN did a lot of research and felt a lot more confidant than our specialist that we would be able to let this baby take her own course. In reality we are just grateful for every day she is here with us. My OBGYN's opinion is that if she makes it to term the higher our chances are of having her be born alive and living for a few minutes. She also suggests we have her by c-section around 36 weeks. My boys get to be waiting right outside the OR door until the environment is safe then they will let them come in and see her in hopes they will get to see her alive.


  1. This is very interesting and so sad. Since Mary has spinal bifida. My doctors told me the same thing about upping the folic acid during each of my pregnancies because I have a sister with spinal bifida. Plus I have a cousin on my Mom's side of the family that her daughter has it. And now this is related. Makes me curious about more information. So sorry about yall tons! xoxox

  2. HI Breanne, I'm a mom of a baby with anencephaly as well and would like to get in touch with you. Could you send me an e-mail to Thanks