The latest from Annie Janvier and team, a publication describing the experiences of families in their internet support group questionnaire study. this particular publication is interested in what happened to families that had a prenatal diagnosis, of trisomy 13 or trisomy 18, and decided not to terminate the pregnancy.
The original study, that this new publication is derived from only included families with live-born children. Surely if a family decides that their decision is to continue the pregnancy, that decision should be respected and supported, and facilitated. Unfortunately that often was not their experience.
Many parents felt judged, and pressured, were treated as if they did not understand the actual situation, as ‘anyone who really understands would obviously choose a termination’. Remarkably and sadly, there were even obstetricians who refused to continue seeing a couple who ‘refused’ a termination, and health care workers who told a couple that ‘the best thing would be if their baby dies’. What an awful thing to say to anybody.
Annie’s collaboration with the parents in the project (one of the authors is a parent, the questionnaire was developed and refined with parent input, and she has remained in contact with some parents, and the support groups) led to some interesting insights, one of them being that the parents didn’t want anonymity, they wanted their babies to be recognized and known by their names, not by their diagnosis. So unusually, the legend to the figure shown above includes their names, and shows a very different image of these children to that shown in textbooks.
Family pictures of children. From top left to right: Gianna, full T18 (died 1 week), Nolan, full T18 (died 2 years), Beth, full T13 (died 3 months), Guiliana, mosaic T18 (2 years), Emma, full T18 (died 5 years), Joey, full T13 (5 years), Sofia, full T13 (6 years), Allison, full T13 (died 1 day), Annie, full T18 (died 12 years), John, full T13 (died 1 year), Caitlyn (3 tri 18), Cathal, full T18 (died 1 day), Sophee, full T18 (died 6 months), Bristol, full T18 (died 2 months), Devon, full T13 (17 years).