Anencephaly Awareness Month: Week 3

Welcome to week three of Anencephaly Awareness Month! I've covered what anencephaly is, and on the occurrence of anencephaly. This week I will cover some causes and risk factors for anencephaly.

I'm going to preface this post by saying that there is no known cause for anencephaly. Even though neural tube defects (including spina bifida) are one of the most common birth defects, so little is known about what truly causes them. Researchers believe that it is a combination of genetic and environmental factors. I was hoping to have some information back today from a researcher at the Duke Molecular Physiology Institute's study "The Hereditary Basis of Neural Tube Defects", but I haven't heard back from her yet. I will definitely let you guys know when she does have the time to get back to me! Until then, you can find some information about their study (which Madison is officially a part of) here. 

One thing that we do know can help reduce the risk of any Neural Tube Defect is Folic Acid. One study found that if women of child bearing age took .4 mg of Folic Acid every day for at least four weeks before getting pregnant, 50-70% of Neural Tube Defects could be prevented. But, I know that a lack of Folic Acid isn't the only reason a baby might get anencephaly. Personally, I was taking a prenatal with Folic Acid for over a year before we became pregnant with Madison. As you can see, Folic Acid isn't the only factor. 

The CDC also reports that babies born to Hispanic mothers are at an increased risk for anencephaly, but the reasons for the increased risk are not well understood.

So much more research is needed to figure out what causes anencephaly so that one day we might be able to prevent any babies dying from this horrible birth defect. If you feel obliged to donate towards the Duke study, contact information may be found below.

Donations can be made online at www.giftrecords.duke.edu. Click on “Make a Gift Now” and then “Make a Credit Card Gift.” Enter amount and then click “Or choose an area” at the bottom. Click on “Still can’t find your designation of choice” and type 3912359 into “Which area of Duke would you like to support?” There is also a field for donors to dedicate the gift.

Or checks can be mailed to:

Duke University Medical Center
NTD Research Fund
300 N. Duke Street
Durham, NC 27701

That's it for Week 3's information! On Thursday I'm sharing Olivia's story, and then next week I'll discuss diagnosis and outcomes.