Disclosing the diagnosis of Down syndrome: the experience of 50 Irish parents

Communicating the diagnosis of Down syndrome (DS) to parents in a kind and sensitive manner is essential. The aim of our study was to evaluate parental experience of this discussion at the birth of their baby. This was a cross-sectional study of all parents of a child born with DS during the last 20 years and linked with Early Interventions Services in Galway, Ireland. Parents were first contacted via telephone to discuss the study, and with their consent a postal survey was sent to them to complete anonymously. We were successful in contacting 84 of 106 eligible families (79%) via telephone. We received 50 complete surveys back, giving a response rate of 60%. Thirty-seven (44%) parents reported that they had no suspicions of DS prior to being told and 36 (72%) were congratulated on the birth of their child (table 1). Forty (80%) mothers reported that their husband/partner was with them when the diagnosis was first discussed. The first discussion of DS took place antenatally in 4 (8%) cases, within the first hour in 25 (50%) cases, between 2 and 24 hours postdelivery in 12 (24%) cases, between 24 and 48 hours in 5 (10%) cases, over 48 hours in 3 (6%) cases, and 1 (2%) survey had no response. …