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  • What is anencephaly?
    • Anencephaly (pronounced an-en-sef-uh-lee) is a birth defect that affects the closing of a narrow channel, called the neural tube. Normally, the tube folds and closes during the third and fourth weeks of pregnancy to form the brain and spinal cord. Anencephaly prevents the neural tube that forms the brain from closing, which causes the baby to be born without a forebrain (the front part of the brain) or a cerebrum (the thinking and coordinating part of the brain). Often, the brain tissue is exposed and not covered by bone or skin.

      The US Centers for Disease Control and Prevention (CDC) estimates that each year about 1,000 babies, or 1 in every 4,000 babies, in the United States will be born with 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.

  • What causes anencephaly?
    • The cause of anencephaly is unknown. Scientists believe that many factors are involved.

      The CDC is working with researchers to study risk factors that can increase the chance of having a baby with anencephaly. There is a 21% decline in the birth rate of babies born with anencephaly since the United States began fortifying grains with folic acid.

  • Can you prevent anencephaly?
    • 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.

  • Where can I get more information about anencephaly?

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Last Revised: January 28, 2014

Data

Data Query

Anencephaly Data Query:
Access the anencephaly data in the WI EPHT online database. Review the Data Details below to learn about interpreting the data.

The WI EPHT online data has data about other birth defects:

  • Cleft Lip with or without Cleft Palate
  • Cleft Palate without Cleft Lip
  • Down Syndrome (Trisomy 21)
  • Gastroschisis
  • Hypoplastic Left Heart Syndrome
  • Hypospadias
  • Spina Bifida (without Anencephaly)
  • Tetralogy of Fallot
  • Transposition of the Great Arteries
  • Lower Limb Deficiencies
  • Upper Limb Deficiencies
  • Data Details

    What is the data source?

    The website provides data from the Wisconsin Birth Defects Registry, which is maintained by the Birth Defect Prevention and Surveillance program, Wisconsin Department of Health Services.

    How does WI EPHT measure birth defects?

    The WI EPHT website includes the following measures:

    • Prevalence rate of live births by geography
    • Number of birth defects by geography

    What are some considerations for interpreting the data?

    While significant effort is made to ensure the accuracy and completeness of the data, there are limitations that are listed below:

    • The Wisconsin Birth Defects Registry does not currently receive reports from all providers in the state. Thus, the numbers presented here represent only a subset of the actual cases.
    • Reporters have up to two years to provide data to the registry, so some cases from the most recent years may not yet be included in the registry.

    There are many factors that can contribute to a disease and should be considered when interpreting the data. Some of these include:

    • Demographics, e.g., race, gender, age
    • Socioeconomic Status, e.g., income level, education
    • Geographic, e.g., urban vs. rural
    • Changes in the medical field, e.g., diagnosis patterns, reporting requirements