Anencephaly is a neural tube defect in which the the head end of the neural tube does not close.
Normally, the neural tube will fold and close during the 3rd to 4th week of pregnancy. When it does not close, it causes a large portion of the brain, skull and scalp to be missing.
A fetus that has been diagnosed with anencephaly will be born without a forebain and cerebrum. The cerebrum is the part of the brain that is responsible for thinking and coordination. Usually the brain tissue will not be covered with bone or skin and is exposed at birth.
Most babies that are born with this condition are blind, deaf, unconscious and are not able to sense pain. Researchers think that the mother's diet and vitamin consumption may play a vital role in the cause of the disorder, but there is no exact known cause.
Because there is no treatment for anencephaly, most babies will be stillborn or will die within a few hours or days of birth.
Comments 1 to 14 of about 14. 1
1009 days ago.
Well I got the most devastating news possible today. I thought everything was just fine with my baby. Heart beat was good and my previous u/s were as well. My baby has a condition known as Anencephaly, it is extremely rare. I read that it happens 1 in 1,000 pregnancies and 1 in 10,000 pregnancies. They will be delivering my baby in 2-3 weeks. This is just something that happens, the doctor said that it has nothing to do with anything I did. But I question myself, I had a feeling this last month that something just wasn't right. The lady who did my u/s gave me tons of photos but didn't say anything about the baby's skull not forming. When the Dr. came in and did my u/s what he said at first was 'We have a Big Problem!' I didn't think it would be something like this. I pray that everything will be okay when they deliver him/her and I will have the baby blessed by my pastor and will see him/her again someday in Heaven. I pray that all of you have healthy pregnancies!
1362 days ago.
We found out last July at the 12 week scan that our baby had anencephaly, i had a termination. I think the worst thing was seeing the baby moving on the scan which is upsetting to think about now. I wish the hospital had given me a scan photo as I think it may have helped me grieve as I have nothing to remember the baby by. I've found the same as others on this site that there's not much information about the condition or forums. I had a miscarriage in February at 10 weeks just before my son's 3rd birthday. I'm now pregnant again just 6 weeks and obviously concerned that problems may occur again, fingers crossed. I feel at least I'm so lucky o have me 3 year old son, I think it would have been harder to deal with if it was a first pregnancy.
1425 days ago.
My heart goes out to all of you. A friend of mine was not given an early scan because of where they live and a high abortion rate if females are conceived. Anyhow finally at 28 weeks they were going in for a scan to find out the sex of the baby and found out she had this condition. They induced labor within a week I believe. Such a heartbreaking story and my heart aches for her.
1427 days ago.
I found out 5 weeks ago that my dear bubba had anencephaly. I was 13.5 wks. Its crazy you know, u wish so bad for that 12 week mark to confirm that you have made it through those supposedly threatening first three months only to reallise that beautiful magical bump you have been watching day by day, week by week emerge from your torso has been unwell from week 4. :( My poor darling baby. This was my first pregnancy. This is a lifechanging experience, my naevity and innocence has been taken away from me but its not going to beat me. I have a wonderful supportive husband & remain bright eyed & bushy tailed about the future. Any of u wonderful ladies who stumble accross this little neck of this site and find themselves in a similar spot please msg me. I noticed this forum is rarely visited which i guess is good. :) Perhaps this is an indication this condition Anencephaly is a rare occurrance and we can all carry on out ttc missions with the comfort we should not b here ever again. With love n HuGZ. XX Sara. :)
1569 days ago.
I was just told today that my baby has this. I am sad, mad, scared and totally over-whelmed. They are sending us to a specialist next week to confirm and also for genetic testing between dh and I . So, hard.
1762 days ago.
I am so happy we kept the baby she was very pretty with eyes like dimonds she had the lesser defect we got 4 days 2 hours 30 min 60 secounds with her. If your told your child has this keep the pregnancy cause you may have the best time with your child I did. we know god gave us her thank you. death is not the end its just the beging.
1816 days ago.
I lost a child at 15 weeks my body let the baby go natural 3 days befor our loss we had dicovered. I had two hard kicks then I rushed to the er thats when we got to see our baby looking peaceful.
I am now pregnant with a healthy baby girl
1907 days ago.
In October 2008 I terminated a baby at 20 weeks due to anencephaly. I chose to have the baby naturally rather than doing a D & C. It was hard...very hard! I just couldnt understand why...as I had 3 other children and never had any complications with any of my children. I often wondered what I had done or if it was my fault. Genetics testing showed that neither I nor my husband had any history of it so it was just a 1 out of a million chance of it happening. I was put on folic acid right after and a month later found out I was preggo again. I just recently had a healthy baby boy on August 19th 2009. Keep your head up and know that god would not give you something that you couldnt handle in life. I am here to talk!
1909 days ago.
Beth after reading your story I think of you often. I am so sorry for what you have to go through and you sound so brave. I know that you are hurting and I just want you to know that your family is in my prayers and I'm sending you a hug.
1909 days ago.
Hi my name is beth..im 21wks pregnant..when i was 19wks pregnant we found out that are baby has Anencephaly..the doc told me that i can abort the baby now or go full-term ..and the baby dieing after its born..i dont know what im having..I and my husband are both getting genetic testing done..I hope that this never happens to anyone..we are going to donate are baby organs to..the organs are fine..
2091 days ago.
I have two friends who have had baby boys with this - one four years ago and one right now. Heartbreaking and tear-jerking. God have mercy.
2313 days ago.
aleahs, I totally think you did the right thing, I think you did the only thing that could have been done. I cant imagine how aweful it must have been, but it was humane, and you should not feel any guilt. God Bless
2320 days ago.
I read your post. I just want you to know that it was not your fault. I was pushed to abort when I was 15 and not for medical reasons. God knows your heart and knows how you feel. He forgives you so please forgive yourself. ((big hugs))
2330 days ago.
I don't know if there are any ladies out there that have had a baby with this defect but thought that I would send my love to all of you who have children with birth-defects. I had a baby in 2002 with this condition...it was devastating. We didn't find out till I was 16 weeks along. My doctor told we I needed to terminate. I was very young (19) and didn't understand all of the things that were happening. It was a hard decision (one I felt wasn't fair that I had to make) but we opted to have a medical termination. I still feel like it was wrong. They told me it was for my healthy as I already and an extream excessive amout of amniotic fluild and that the level of her defect was very servere (she would probably die in utero or immediatley after birth). At first a wanted to carry her to term and donate the organs but they don't permit that because these babies almost always have other defects. I hope that you don't judge me for what I did. I was so hard on me. I still carry guilt around from this. She was delivered at 23 weeks, she was missing the top part of her skull and very under-developed. My prayers are with all of you because every mother-no matter what deserves a healthy child.
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