My recent post about Annie Janvier’s paper, which described the experiences of families who had an antenatal diagnosis of trisomy 13 or trisomy 18 generated a lot of comments (at least a lot for my blog). Many of them are parents recounting their own experiences, and how they illustrate or differ from those described by Guon et al. If you are interested a few brief minutes of reading is quite educational.
I also had a comment (verbal) from Annie, who noted that I described the study subjects as families who had ‘decided not to terminate the pregnancy’. She scolded me (gently) for using that phrase as a negative, rather than stating that they ‘continued the pregnancy’. I certainly didn’t mean to be negative, but she is right that language is powerful, and the automatic assumption that the default response to such a diagnosis is termination, is the source of many of the problems that families may experience. So my apologies.
Also 2 of the responses to the post noted that there is now an international alliance to aid and support families (International Trisomy 13/18 Alliance
http://www.internationaltrisomyalliance.com): as well as the web site and the newsletter, they have produced a series of educational booklets for families, including one for families who experience a prenatal diagnosis (which you can find on this page). In addition to being factually accurate, the booklets are written by families so they give a much more complete description of family experiences.