Facts about anencephaly
"Babies in utero with a lethal fetal anomaly are not dying, but living in the mother's womb."
Dr. Paul Byrne, neonatologist
Frequently Asked Questions about anencephaly
Report about the birth and life of babies with anencephaly
Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly
Pamphlet about anencephaly
Prevention of anencephaly
What is a neural tube defect?
Ultrasound pictures of babies with anencephaly
Midwifes about anencephaly
Publications about anencephaly
Research being done about anencephaly:
* PONTI Study (Prevention Of Neural Tube defects by Inositol)
If you have had a pregnancy affected by a neural tube defect and planning another pregnancy, you might want to know about an important
research project that aims to prevent neural tube defects with a vitamin treatment. UK only.
* The Duke Center for Human Genetics is currently conducting a genetic study called "The Hereditary Basis of Neural Tube Defects" to determine the causes of anencephaly and other NTDs. By studying families with anencephaly and other NTDs, they hope to identify the genes that contribute to the development of the neural tube. They hope this research will eventually lead to more accurate genetic counseling and risk assessment, improved treatments, better prevention methods, and possibly, a cure.
* The Spina Bifida Research Resource (SBRR)
Lead by the Institute of Biosciences and Technology (Texas A & M), the goal of the SBRR is to find genes that are related to spina bifida
(myelomeningocele) and anencephaly. This information will help us to find new ways to reduce the risk that children will develop with these
conditions.
* Prof. Dr. Harald Goll, of the Division on Intellectual and Developmental
Disabilities at the University of Erfurt, Germany, is leading the project "Children with anencephaly":
Research Questions
Profound brain impairment and very limited lifespan lead to anthropological and ethical questions of personhood as well as questions on
awareness, perception and emotion. The development of adequate programs to serve parents and children is another aspect of the project.
Research methods
Methodologically, three elements are essential: (1) access through cultural studies, (2) interdisciplinary team structure and (3)
integration of parents as experts.
Research project
Since 2003 there has been an ongoing research cooperation with the professorship of theological ethics at the Theological Faculty of the
University of Erfurt (Prof. Dr. Josef Römelt). Three international conferences on the situation of children with anencephaly and their
parents have been held. An interdisciplinary “anencephaly network” with participants from the fields of medicine, philosophy,
psychology and law emerged from this activities. The acquisition of international experts in different scientific disciplines is planned
for the future.
Publications
Goll, H. (2003). Meinen wir wirklich alle Kinder? Heilpädagogische Begleitung von Kindern mit Anencephalie und ihren Eltern.
In: Th. Klauß & W. Lamers (Hrsg.), Alle Kinder alles lehren ... Grundlagen der Pädagogik für Menschen mit schwerer und mehrfacher
Behinderung (257-270). Heidelberg: Winter.
Goll, H. (2004). Wenn das Leben mit dem Tod beginnt: Kinder mit Anencephalie und ihr Recht auf Achtung. In: H. Sautter, U. Stinkes & R.
Trost (Hrsg.), Beiträge zu einer Pädagogik der Achtung (187-197). Heidelberg: Winter Verlag, Edition S.
Goll, H. (2005). Kinder mit Anencephalie- Interdisziplinärer Stand der Forschung, ethische Positionen und Hilfen für Eltern und Kind.
In: J. Römelt (Hrsg.), Spätabbrüche der Schwangerschaft. Überlegungen zu einer umstrittenen Praxis (45-82). Leipzig: St. Benno Verlag
"When you know better, you do better."
Oprah Winfrey
Last updated Jan. 22, 2010
