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Who is behind the anencephaly.info website?



I'm Monika Jaquier. I founded the anencephaly.info pages in November 2000 after the death of our daughter Anouk.

I tried to make a website as I would have wanted to find after her diagnosis: a place that provides information about anencephaly, shares stories and pictures of families who have been there, gives practical advice based on their experiences, and contains links to other helpful and supportive places.

I am convinced that carrying to term a baby after a diagnosis of anencephaly is good, for the baby and the family, and through the anencephaly.info pages I want to encourage parents to consider this option.

As I'm aware that the needs of affected families can be very different from one to another, the content of this site is not just the fruit of my own ideas, but has been elaborated from the experience of many other families who had had a baby with anencephaly. If you are missing information or think that this or that page could be better, feel free to send me a message!

Since 2003 I'm a part of an ongoing research corporation at the University of Erfurt (Germany) between Scientifics and families affected by anencephaly. An interdisciplinary "anencephaly network" with participants from the fields of medicine, philosophy, psychology and law emerged from this activities, conferences have been held and a book published and several research papers have been written.


Jaquier, M. (2022). The Value of a Life. Narrative Inquiry in Bioethics 12(3), 202-203. www.muse.jhu.edu/article/880705

Jaquier, M. , Klein, A. and Boltshauser, E. (2006), Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly. BJOG: An International Journal of Obstetrics & Gynaecology, 113: 951-953. doi:10.1111/j.1471-0528.2006.01/a014.x

Goll, H., Jaquier, M. & Römelt, J. (Hrsg.) (2009): Kinder mit Anencephalie und ihre Familien. Bad Heilbrunn: Klinkhardt

Jaquier, M. (2009):Eltern-Kind-Bindung bei Babys mit Anencephalie. In: Goll, H., Jaquier, M. &Römelt, J. (Hrsg.): Kinder mit Anencephalie und ihre Familien (163 - 180). Bad Heilbrunn: Klinkhardt

Goll, H., Jaquier, M. (2022): Anenzephalie - 20 Jahre Ermutigung zur Verantwortung. In: Mandry, C., Meyer-Ahlen, S. (Hrsg.): Ermutigung zur Verantwortung (293 - 300). Münster: Aschendorff Verlag

Jaquier, M., "Lorsque la naissance et la mort se confondent", InfoKara, 2009/4 (Vol. 24), p. 175-177. DOI : 10.3917/inka.094.0175. URL : https://www.cairn.info/revue-infokara1-2009-4-page-175.htm

Jaquier, M. (2009): Sich verbinden und loslassen. Deutsche Hebammen Zeitschrift 8/2009, p. 15-18. dhz-online.de

Jaquier, M. (2003): Leben und Sterben. Deutsche Hebammen Zeitschrift 4/2003, p. 22-27

Jaquier, M. (2001): Anenzephalie, Die Geschichte von Anouk. Schweizer Hebamme 12/2001, p. 8-9.

Jaquier, M. (2001): Anouk, bébé anencéphale. Sage-femme suisse 10/2001, p.24-28.

Jaquier, M. (2014): Situation von Kindern mit Anenzephalie und ihren Familien. Hospiz-Dialog NRW Juli 2014/60, p. 5-7




Important notice:

The advice given on this site is offered from non medically qualified individuals. This site is the result of research and experience made by affected parents. The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician. Confidentiality of data relating to visitors is respected by this website. For further information or support, please write to the webmaster.

The anencephalie-info site is financed by private donations; all work done on this site is on a voluntary basis.
There is no advertising on this site.



Contact information of the responsible of this site:

Monika Jaquier
Route du Vernay 32
1677 Prez-vers-Siviriez



Last updated February 8, 2023