Congenital conditions in Scotland
2021 to 2022

About this release

This release by Public Health Scotland (PHS) is focused on congenital conditions. It provides information on the number of babies with congenital conditions among pregnancies ending in Scotland between 2021 and 2022. It is the first release based on data from the new national register of babies with congenital conditions. Previously published data for 2021 is superseded by the register data provided through this release.

Main points

• 1,194 babies with a congenital condition were identified among pregnancies ending in Scotland in 2022. This is 255 per 10,000 total (live and still) births.
• 849 (71%) of these babies were live born. This is 182 per 10,000 live births. This means that around 1 in 55 babies born alive in Scotland in 2022 had a congenital condition.
• Overall, the most common group of conditions was congenital heart disease (371 babies with congenital heart disease, 79 per 10,000 total births).

This chart shows that in most groups the majority of affected babies are live born followed by a small proportion of terminations and an even smaller proportion of spontaneous fetal deaths, except for nervous system and genetic conditions which have a higher proportion of terminations.

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Total birth prevalence of major congenital conditions by pregnancy outcome, Scotland, 2022

• Among the specific conditions included in this report that are covered by the pregnancy screening programmes, the most common condition was Down’s syndrome (137 babies with Down’s syndrome; 29 per 10,000 total births).
• The birth prevalence of congenital conditions remained stable between 2021 and 2022.

Background

The Congenital Conditions and Rare Disease Registration and Information Service for Scotland (CARDRISS) launched the new national register of babies with congenital conditions in June 2023.

Babies from pregnancies ending in January 2021 onwards are included in the register if:

• they have a major structural or chromosomal condition or recognised syndrome meeting inclusion criteria set by EUROCAT
• their condition was diagnosed during pregnancy (or after pregnancy loss) or, for live births, at any point before the baby's first birthday
• the pregnancy ended in a live birth, a spontaneous stillbirth occurring at ≥24 weeks gestation, a spontaneous late fetal loss occurring at 20-23 weeks gestation inclusive, or a termination of pregnancy at any gestation
• their mother was resident in Scotland at the time the pregnancy ended

Information on babies with congenital conditions was previously provided from a different data source, the Scottish Linked Congenital Conditions Dataset (SLiCCD). There are substantial differences in the data on babies with congenital conditions available from SLiCCD and the CARDRISS register, and the register should be considered the gold standard data source. The differences are described in detail in the technical report accompanying this publication.

Further information

The next release of this publication will be October 2025.