Abstract

Two to three percent of pregnancies will receive a diagnosis of a congenital anomaly, a proportion of which are fatal. The term FFA is used to describe a condition likely to lead to death of the fetus in utero or within 28 days of birth. This study used a mixed-method approach to explore experiences of FFA. Findings included a lack of knowledge of FFA among the general public, potentially due to the delivery of inaccurate and biased information by the media. Complexity relating to the presentation of infants with congenital anomaly was noted. Concerns with the current ambiguous and ‘restrictive’ legislation were identified, as was the need for standardised care, organisational and peer support, and educational opportunities when caring for parents following a FFA diagnosis. A universal term and definition that reflects conditions causing perinatal death would prove useful and support those caring for parents following a FFA diagnosis. A review of the legislation and removal of the attached criminal liability is warranted. A universal database for FFA would be beneficial to those providing care to these parents. Those working with bereaved parents need to be supported in their role and their peer-to-peer support and holistic care be acknowledged.