General Discussion
Anencephaly is a disorder involving the incomplete development of major parts of the brain. Anencephaly is classified as a neural tube defect (NTD), and that term refers to the incomplete development of the brain, spinal cord, and/or their protective coverings. The neural tube is a narrow sheath that is supposed to fold and to close during the third and fourth weeks of pregnancy, in order to form the brain and spinal cord of the embryo. Anencephaly occurs when the head (cephalic) end of this neural tube fails to close, resulting in the failure of major portions of brain, skull and scalp to form.
Infants with anencephaly are born without both a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). Often the remaining rudimentary brain tissue may be exposed, without the protective covering of either bone or skin. Although reflex actions such as breathing and responses to touch or sound may occur, gaining consciousness is almost invariably ruled out.
Resources
Abiding Hearts
705 14th Street
Butte, MT 59701
USA
Tel: 4067824894
Fax: 4065877197
TDD: 8002233131
Email: abidinghearts@yahoo.com
National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
8A07
Bethesda, MD 20892-2540
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Email: braininfo@ninds.nih.gov
Internet: http://www.ninds.nih.gov/
NIH/National Institute of Child Health and Human Development
31 Center Dr
Building 31, Room 2A32
MSC2425
Bethesda, MD 20892
Tel: (301)496-5133
Fax: (301)496-7101
Internet: http://www.nih.gov/hichd/
Birth Defect Research for Children
930 Woodcock Rd
Suite 225
Orlando, FL 32803
USA
Tel: 4078950802
Fax: 4078950824
Email: staff@birthdefects.org
Internet: http://www.birthdefects.org
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/
Infants Remembered In Silence, Inc. (IRIS)
101 Third Street NW
Faribault, MN 55021
Tel: (507)334-4748
Fax: (507)334-4748
Email: iris@qwestoffice.net
Internet: http://www.irisRemembers.com
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html
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This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org
Last Updated: 1/23/2009
Copyright 1988, 1989, 1990, 1992, 1999, 2002, 2009National Organization for Rare Disorders, Inc.
