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:
* Report about the length of pregnancy, birth and life of babies with anencephaly
Based on the experience and data of affected families, Monika Jaquier, founder of the anencephaly.info website, has published a report about babies with anencephaly who have been carried to term in a journal for OB/GYNs.
More detailed results are available here.
The gathering of information continues, if you want to help, please send an e-mail with the answers to the following questions:
1. Name of the mother
2. Name of the baby
3. Baby's gender/sex
4. Did you have polyhydramnios (too much amniotic fluid)?
5. At how many weeks of pregnancy was your baby born?
6. Natural birth or c-section?
7. Was the birth induced, or did your baby's labor and birth start naturally?
8. Was the amniotic sac (bag of waters) ruptured artificially?
9. Weight of your baby
10. If your baby was born alive, how long did s/he live?
11. Did your baby die in utero, before being born, before labor and birth started naturally?
12. Did your baby have further birth defects?
13. Other observations (placenta previa, homebirth, emergency c-section, breech position...)
14. Do you have a family history of neural tube defects (did a sibling, nephew, niece, uncle, aunt, cousin, yourself or another of your children have anencephaly, spina bifida or another neural tube defect)?
15. Did you take at least 0.4mg folic acid at least one month before conception and during the 3 first months of pregnancy?
16. In which country did you life when your baby was born?
17. How old were you when your baby was born?
18. Your baby's birthday (month/day/year, please write the name of the month to prevent confusion)?
19. The anencephaly and acrania (or exencephaly) terminologies are sometimes confused, have you been told that your baby had acrania or exencephaly?
20. Did you have other children before this baby? If yes, how many?
21. Did you have any miscarriages before this baby? If yes, how many?
22. Did you donate any of your baby’s organs or tissues? If yes, which ones?
23. Did you have any other children after this baby?
24. If you had a vaginal delivery, did your baby's shoulders get stuck (shoulder dystocia = shoulders fail to deliver shortly after the fetal head)?
If your baby was a twin:
25. Do you know if they were dichorionic (fraternal twins) or monochorionic (identical twins)?
26. In case of identical twins, were they in two different amniotic bags (diamniotic) or in the same amniotic bag (monoamniotic)?
27. Did they share a placenta?
You can be absolutely sure that we will never provide your names or e-mail address, so you can be assured of complete privacy.
Thank you very much!
* 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.
* The Birth Defect Registry
Birth Defect Research for Children’s (BDRC) mission is to find the causes of birth defects and our National Birth Defect Registry (NBDR) is a powerful tool we use in discovering those causes. The registry was designed through a collaboration of seven prominent scientists, it collects information on all categories of structural and functional birth defects as well as the health, genetic and environmental exposure histories of the mothers and fathers. The data are then analyzed to look for patterns of birth defects. Pattern identification is how many (if not most) of the major environmental causes of birth defects were first discovered including the effects of thalidomide, radiation, rubella, methyl mercury, DES, Dilantan and others. The NBDR is the ONLY national birth defect registry that collects the pre-natal data of both parents. In the coming year we hope to increase the number of cases in the NBDR. Increasing the number of cases will strengthen existing patterns and allow for new patterns to be identified. To participate in the Registry, parents simply have to fill out a questionnaire online at http://www.birthdefects.org/registry/
* 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":
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.
Methodologically, three elements are essential: (1) access through cultural studies, (2) interdisciplinary team structure and (3) integration of parents as experts.
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.
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."
Last updated September 12, 2012