Receiving the news of Down syndrome in the era of prenatal testing

OBJECTIVE: To explore the prenatal trajectory and the experiences of mothers of a child with Down syndrome (DS) at the time of receiving information or test results when participating in a nationwide prenatal screening program. METHODS: An online questionnaire study was completed by mothers of children with DS born between January 1, 2010 and February 28, 2016 (n = 212). Data were collected between February 15 and 28, 2016. RESULTS: Most of the live born children with DS were diagnosed postnatally. The majority of their mothers had explicitly chosen not to have prenatal DS screening. Of the 39 mothers prenatally informed their child might have DS, only 49% were completely or mostly satisfied about the information provided by their clinical providers at that time. About 16% of women (of the 38 that answered this question) recall some perceived emphasis on the option of terminating pregnancy as the first choice. Mothers who had received a postnatal diagnosis rated the experience as more positive than their counterparts who received prenatal diagnoses. CONCLUSION: With recent developments in screening, more parents are expected to receive a DS diagnosis before birth. Meeting the parents' individual counseling needs at the time of prenatal diagnosis requires careful exploration of their personal values and preferences.status: publishe