Down Syndrome survival rate increases; racial disparities remain

Published 12:00 am Thursday, August 3, 2006

Staff report

Children with Down syndrome are living longer, according to a new study, reports the Centers for Disease Control and Prevention.

“Survival in Infants with Down Syndrome, Metropolitan Atlanta, 1979-1998,” was published in the June 2006 issue of The Journal of Pediatrics. The study examined the survival of 645 infants with Down syndrome in the Atlanta metropolitan area. It showed that nearly 93 percent of infants with Down syndrome now survive the first year and nearly 90 percent of affected infants survive the first 10 years. CDC is now conducting a similar study in 10 other states to observe if the survival rates of infants with Down syndrome are the same as in Atlanta.

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Despite an overall increase in survival, the study showed continued racial disparities among children with Down syndrome. By age 20, blacks with this condition are still more than seven times as likely to die as whites.

“The finding that children with Down syndrome are living longer means we need to ensure that appropriate medical, residential, social and community services are available for adults with Down syndrome,” said Dr. Jos\u00E9 Cordero, assistant surgeon general and director of the CDC’s National Center on Birth Defects and Developmental Disabilities. “In addition, studies are needed to better understand why white children have better survival than black children.”

Down syndrome, caused by a chromosome abnormality, occurs in one in 800 births. Several factors affect the chances of survival, including race, presence of a heart defect, and low birth weight. Nearly half of all children with Down syndrome have a congenital heart defect. Among white infants, those with congenital heart defects are eight times more likely to die than those without heart defects.

The study did not identify the reasons for the racial disparity. Although it looked at mother’s age, education, and birth weight of the baby, the study did not have access to many factors that may affect differences in health including: socioeconomic status, insurance coverage, community support, medical or surgical treatment of serious complications or access to, use of, or quality of preventative health care.

“A better understanding of the causes of death in Down syndrome will lead to improved health care and subsequently to longer and healthier lives for all people with this condition,” added Dr. Cordero.

The study identified infants with Down syndrome in a five-county area of metropolitan Atlanta, determined when these children died using death certificates and medical records, and used statistical methods to evaluate what factors predicted shorter survival.

For more information on birth defects in the United States, visit