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Anencephaly is a condition characterized by incomplete formation of the brain and bones of the skull. It is categorized as part of a group of birth defects called neural tube defects (NTD) because during the first few weeks of embryonic development, a structure called the neural tube does not close as it is supposed to. Because this tube does not close, the developing brain and spinal cord become exposed to amniotic fluid that ordinarily only surrounds the fetus in the womb. Because of this exposure, developing nervous system tissue breaks down, including large portions of the brain. Most babies with anencephaly die before birth or within a few hours after birth. The causes of anencephaly are not fully understood but may involve many genes interacting with environmental agents or may be the result of chromosomal disorder.

Organizations that supply resources and grief support are available for families that have lost a child. Information provided in part by our partner NORD.

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