Diagnosis of a severe congenital anomaly: a qualitative analysis of parental decision-making and the implications for healthcare encounters.

Most parents-to-be embark on a pregnancy assuming they will have a healthy child but in around 3% of pregnancies a lethal or life-limiting anomaly is present. 1 In the United Kingdom (UK), parents-to-be are offered antenatal screening for 11 congenital anomalies: serious cardiac, anencephaly, spina bifida, renal agenesis, lethal skeletal dysplasia, congenital diaphragmatic hernia, trisomies 13 and 18, cleft lip and gastroschisis through the Fetal Anomaly Screening Programme (FASP). The first nine of these anomalies may be defined as ‘severe’ as they carry a significant morbidity or mortality risk, and depending on a number of factors, parents-to-be may be offered the option to terminate the affected pregnancy. The other anomalies, cleft lip and gastroschisis, benefit from antenatal or postnatal treatment. 2 In England and Wales, around 70% of women terminate pregnancies affected by a FASP anomaly.