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Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies

Lay Summary

We searched the international literature for studies on children born with a major congenital anomaly, also known as a birth defect, (excluding congenital heart conditions as a primary condition) who were alive after one year of age. Out of 10,888 papers published between 1 January 1995 and 30 April 2020, we found 55 relevant studies on different congenital anomalies and the findings were described in this paper. Forty-one studies on eight different congenital anomalies (spina bifida, encephalocele, oesophageal atresia, biliary atresia, congenital diaphragmatic hernia, gastroschisis, Down syndrome and Edward syndrome) were included in the quantitative analysis. Survival after one year of age improved by over 30% over a ten-year time period for children with spina bifida, oesophageal atresia, biliary atresia, congenital diaphragmatic hernia, gastroschisis, and Down syndrome associated with a congenital heart condition. The survival of children with encephalocele and children with biliary atresia who did not have a liver transplant was the same over the time period of this study. A child was less likely to live after one year of age if they were born with a low birth weight and more than one congenital anomaly. Information on survival is needed for children with other types of congenital anomalies to help with the planning of specialised medical, social, and education services for these children.

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