Down Syndrome Life Expectancy Is Higher, But Not For Everyone
Jul 21, 2021
Over 6,000 babies are born with Down syndrome in the United States each year. As recently as 1983, a person with Down syndrome lived to be only 25 years old on average. Today, the average life expectancy of a person with Down syndrome is nearly 60 years and continuing to climb.
A 2015 study found, however, that the life expectancy of people with Down syndrome varied greatly based on their race. Down syndrome is a disorder that equally effects every racial group and, in most cases, occurs as a “random” occurrence. But even with the increased survival of people with Down syndrome in recent decades, those who are African American and in other minority populations have not seen the same level of improvement to their mortality (death) rate as their white counterparts.
In a study done from the Center for Disease Control, researchers looked at the death rate of nearly 18,000 people with Down syndrome in the United States from 1983-1997. They reported life expectancies of minority populations was nearly half of those who were identified as white. Life expectancy had improved in minority populations but not to the degree seen in non-minority populations.
Researchers looked at dozens of factors, including prenatal care, prematurity, and congenital heart disease, (a common association in those with Down syndrome) to see if they could find a cause for this racial disparity (difference based on race). Unfortunately, there was not a single trend to explain the difference in life expectancy. Prenatal care alone has significant racial disparities with higher infant mortality rates and higher rates of preterm birth in non-Caucasians. There is also some evidence for later diagnosis of those with Down syndrome which might contribute to this trend.
While the study left researchers with more questions than answers, one thing is certain: this again proves why health equity, which means everyone has a fair opportunity to be healthy, is so important. And it’s fueling our team here at Nationwide Children’s Hospital not to stop until we find answers.
Our new Center for Child Health Equity and Outcomes Research in the Abigail Wexner Research Institute was created for this very reason. The center is dedicated to research that identifies disparities like this one. Researchers in the center are testing ways to reduce disparities and improve health equity so that every child has an equal chance at reaching their best outcomes.
If you have a child with Down syndrome and have questions about the care they are receiving, request an appointment with our Down Syndrome Clinic.
Murugu Manickam, MD, MPH, FACMG, is a clinical geneticist/genomicist at Nationwide Children’s Hospital as an associate professor of Clinical Pediatrics, with a joint appointment at the Wexner Medical Center at The Ohio State University Medical Center. His specialty clinical interests are Down Syndrome and Neurofibromatosis but sees many rare clinical disorders. Additionally he is a national expert secondary findings from clinical testing and preventative.
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