Ten-Year Survival of Children with Congenital Anomalies: A European Cohort Study

Svetlana Glinianaia, Judith Rankin, Anna Pierini, Alessio Coi, Michele Santoro, Joachim Tan, Abigail Reid, Garne Ester, Maria Loane, Joanne Given, Clara Cavero-Carbonell, Hermien E.K. de Walle, Miriam Gatt, Mika Gissler, Anna Heino, Babak Khoshnood, Kari Klungsøyr, Nathalie Lelong, Amanda Neville, Daniel ThayerDavid Tucker, Stine Urhøj, Diana Wellesley, Oscar Zurriaga, Joan K Morris

Research output: Contribution to journalArticlepeer-review


OBJECTIVES: To investigate the survival up to age 10 years for children born alive with a major congenital anomaly.

METHODS: This population-based linked cohort study (EUROlinkCAT) linked data on live births during 2005-2014 from 13 European congenital anomaly registries with mortality data. Pooled Kaplan-Meier survival estimates up to 10 years of age were calculated for these children (77,054 children with isolated structural anomalies and 4,011 children with Down syndrome).

RESULTS: The highest mortality of children with isolated structural congenital anomalies was within infancy, with survival of 97.3% (95% CI, 96.6-98.1) and 96.9% (95% CI, 96.0-97.7) at age 1 and 10 years, respectively. The 10-year survival exceeded 90% for the majority of specific congenital anomalies (27/32), with considerable variations between congenital anomalies of different severity. Survival of children with a specific isolated anomaly was higher than in all children with the same anomaly when those with associated anomalies were included. For children with Down syndrome, the 10-year survival was significantly higher for those without associated cardiac or digestive system anomalies (97.6%; 95% CI, 96.5-98.7) compared to children with Down syndrome associated with a cardiac anomaly (92.3%; 95% CI, 89.4-95.3), digestive system anomaly (92.8%; 95% CI 87.7-98.2) or both (88.6%; 95% CI, 83.2-94.3).

CONCLUSIONS: Ten-year survival of children born with congenital anomalies in Western Europe during 2005-2014 was relatively high. Reliable information on long-term survival of children born with specific congenital anomalies is of major importance for parents of these children and for the health care professionals involved in their care.
Original languageEnglish
Publication statusAccepted/In press - 11 Nov 2021


  • Epidemiology
  • Birth Defects
  • Fetus/Newborn Infant
  • Mortality
  • data linkage


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