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Birth Defects
Birth Defects Home > Birth Defects Topics > Anencephaly
Anencephaly
Pronounced an-en-sef-uh-lee

Anencephaly is a birth defect that affects the closing of the neural tube during pregnancy. The neural tube is a narrow channel that folds and closes during the third and fourth weeks of pregnancy to form the brain and spinal cord. Anencephaly occurs when the portion of the neural tube that forms the brain does not close. This results in the baby lacking parts of the brain, skull, and scalp. Babies with this condition often are born without a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). The remaining brain tissue is often exposed; that is, it is not covered by bone or skin.

To learn more about anencephaly click on one of the following links or scroll down the page.

What We Know About Anencephaly

  • How often does anencephaly occur?
  • What problems do children with anencephaly have?

What We Still Do Not Know About Anencephaly

  • What causes anencephaly?
  • Can anencephaly be prevented?

Resources for Families and Individuals Affected by Anencephaly

 

What We Know About Anencephaly

How often does anencephaly occur?
CDC estimates that each year about 1,000 babies in the United States will be born with anencephaly (1). In other words, about 1 in every 4,000 babies born in the United States will have anencephaly.

What problems do children with anencephaly have?
Unfortunately, almost all babies born with anencephaly will die. Babies born with anencephaly are usually blind, deaf, unconscious, and unable to feel pain. Various studies have shown the survival of infants with anencephaly to be almost impossible. A 2001 study found that, among a group of infants in Texas, all of those with anencephaly died before 1 year of age (2).

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What We Still Do Not Know About Anencephaly

What causes anencephaly?
The cause of anencephaly is unknown. Scientists believe that many factors are involved.
We at CDC work with many researchers to study risk factors that can increase the chance of having a baby with anencephaly. Following are examples of what our research has found:

  • Hispanic babies are at an increased risk for anencephaly (3).
  • We have found a 21% decline in the birth rate of babies born with anencephaly since the United States began fortifying grains with folic acid (4).

Can anencephaly be prevented?
Currently, there is no known way to prevent anencephaly, although steps can be taken to lower the risk. Recent studies have shown that the addition of a B vitamin called folic acid to the diet of women who might become pregnant can greatly reduce the number of babies born with neural tube defects. CDC recommends that all women of childbearing age consume 400 micrograms of folic acid daily. A single serving size of most multivitamins and fortified cereals contains 400 micrograms of folic acid.

In addition, women can take steps before and during pregnancy to be healthy, including not smoking and not drinking alcohol during pregnancy.

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Resources for Families and Individuals Affected by Anencephaly

National Institute of Neurological Disorders and Stroke

National Organization for Rare Disorders

References

  1. Canfield MA, Honein MA, Yuskiv N, Xing J, Mai CT, Collins JS, et al. National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. Birth Defects Res Part A Clin Mol Teratol. 2006;76(11):747–56.
  2. Nembhard WN, Waller DK, Sever LE, Canfield MA. Patterns of first-year survival among infants with selected congenital anomalies in Texas, 1995-1997. Teratology. 2001;64:267–75.
  3. Williams LJ, Rasmussen SA, Flores A, Kirby RS, Edmonds LD. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995-2002. Pediatrics. 2005;116(3):580–6.
  4. Centers for Disease Control and Prevention. Spina bifida and anencephaly prevalence--United States, 1991-2001. MMWR Morb Mortal Wkly Rep. 2002;51:9–11.

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Date: March 11, 2009
Content source: National Center on Birth Defects and Developmental Disabilities

 

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