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Survival of Infants with Down Syndrome

Previous studies have shown that survival is improving for people with Down syndrome (DS). The median age of death among people with DS rose from 25 years in 1983 to 49 years in 1997.

Still, DS is the most common known cause of cognitive impairment, occuring in about 1 in 800 births.

This CDC study evaluated the survival of infants with Down syndrome and identified factors linked with lower survival. Little is known, however, about factors that influence survival.

To identify infants with DS born alive during the period 1979–1998, researchers used the Metropolitan Atlanta Congenital Defects Program (MACDP), a population-based surveillance system; data from hospital records; the National Death Index; and Georgia vital records to find out the date and cause of death for infants who died.

The following are important findings from this study:

• Nearly 93% of infants survived to 1 year of age. About 89% survived to 10 years of age.

• Maternal race significantly affected the survival of infants with DS. Infants of white mothers lived longer than infants of black mothers, except infants who had both DS and a heart defects and were born to white mothers.
• Other significant factors were low birthweight, preterm birth, heart defects (among white infants only), other major birth defects, and lower levels of paternal education.
• This study clearly showed a racial disparity in the survival rate of children with DS. Further study is needed to find out possible reasons for this disparity.
• The finding that nearly 90% of children with DS live past 10 years of age highlights the need to ensure that services are available for adolescents and adults with DS.

Rasmussen SA, Wong L-Y, Correa A, Gambrell D, Friedman JF. Survival of infants with Down syndrome, Metropolitan Atlanta, 1979–1998. J Pediatr. 2006;148:806–12.
 

Date: January 14, 2008
Content source: National Center on Birth Defects and Developmental Disabilities