Life expectancy in Down syndrome

Abstract

This study is part of a collaborative effort between the Division of Vital Statistics, Ministry of Health, Province of British Columbia and the Department of Medical Genetics, University of British Columbia. Permission to use the provincial vital and health records was conditional on the strict observance of the oath of secrecy regarding the nonstatistical information contained in the records. To develop life expectancy data for Down syndrome, we studied 1341 patients with Down syndrome identified by the British Columbia Health Surveillance Registry from more than one million consecutive live births from 1952-1981 inclusive. Our results indicate that life expectancy is much better than generally believed. For patients with Down syndrome with congenital heart anomalies, survival to age 1 year is 76.3%; to age 5, 61.8%; to age 10, 57.1%; to age 20, 53.1%; and to age 30, 49.9%. For patients with Down syndrome without congenital heart anomalies, survival to the same ages is 90.7%; 87.2%, 84.9%, 81.9%, and 79.2%, respectively. Survival for these patients without congenital heart defects is still significantly lower than that for a comparison group of mentally retarded persons without congenital heart defects.