NCARDRS Congenital Anomaly Official Statistics Report, 2021

Perinatal mortality refers to stillbirths and deaths under 7 days of age (relative to all total births) and infant mortality is defined as deaths under one year of age (relative to all live births). Data table 8 shows that the rate of perinatal mortality in babies with any reported fetal anomaly was 8.1 per 10,000 total births in England and the Crown Dependencies in 2021. There were 555 infant deaths among babies with one or more congenital anomalies out of the 598,014 live births in 2021, giving an infant mortality rate of 9.3 per 10,000 live births. 

Child and infant mortality data from the ONS for 2021 in England and Wales shows that congenital anomalies were the most common cause of death in the post-neonatal period, accounting for 32.1% of deaths. Congenital anomalies were also listed as the cause of 32.8% of infant deaths and 27.1% of perinatal deaths, the second highest cause in both categories after prematurity. While the data within this report should be viewed in a wider context of perinatal and infant mortality, congenital anomalies, particular congenital heart, genetic and digestive system anomalies, are a common factor in infant and perinatal deaths.

The data presented here should be viewed with some caution, as babies with more than one anomaly will appear in each subgroup. Additionally, a link between the presence of a congenital anomaly and the cause of death has not been established, therefore it is possible that the identified congenital anomaly had no bearing on mortality. These figures also do not include conditions with a high level of antenatal mortality, pregnancy loss or rate of terminations, where few pregnancies result in either a live birth or a stillbirth, for example, anencephaly.

Figures 9a and 9b show that the most prevalent anomaly subgroups were similar across perinatal and infant mortality, although ordered differently. The rate of perinatal mortality (Figure 9a and Data table 8) associated with congenital anomalies was highest for genetic conditions (3.4 per 10,000 total births, 95% CI 2.9-3.9), followed by congenital heart disease (3.2 per 10,000 total births, 95% CI 2.7-3.6). These were reversed when looking at the rate of infant mortality (Figure 9b and Data table 8), which was highest for congenital heart disease (4.9 per 10,000 live births, 95% CI 4.3-5.5), followed by genetic conditions (3.2 per 10,000 live births, 95% CI 2.8-3.7).

Figure 9a: Perinatal mortality (stillbirths and deaths under 7 days of age) rate (per 10,000 total births) by congenital anomaly subgroup in England and the Crown Dependencies, 2021 

Figure 9b: Infant mortality (deaths under one year of age) rate (per 10,000 live births) by congenital anomaly subgroup in England and the Crown Dependencies, 2021