Parental attitude toward the prenatal diagnosis of oral cleft: A prospective cohort study

Objectives: The prenatal diagnosis of oral clefts (OCs) by ultrasound can pose an ethical dilemma. The purpose of this study was to obtain insight into the psychosocial and moral considerations of prospective parents concerning OCs, the burden of OCs and parents’ attitude toward possible termination of pregnancy (TOP) in order to improve counseling in the future. Design: Between August 2011 and August 2014, a prospective cohort questionnaire study was administered. Setting: Prenatal care clinic of the Wilhelmina’s Children hospital, a Tertiary Care Centre. Participants: Parents expecting a child with an OC. Main Outcome Measures: Expectation of OCs in general and attitudes toward the impact and expected burden of the OC of their child. Furthermore, parents were asked if they had considered TOP. Results: Most of the parents described an OC as a cosmetic disability (50.6%) or as “just a little different” (29.4%). These parents expected that the OC would not affect their own happiness and have only minor influence on the happiness of their future child. Health professionals had a considerable influence on parental opinion. A minority (6.4%, 5/85) of the respondents considered TOP, and none of the responders chose to terminate the pregnancy. Conclusions: This study suggests that future parents have very few negative perceptions of OC after prenatal counseling. Caregivers should be aware that their counseling is important for decision-making of parents.