More than 6,000 infants are born with Down syndrome in the United States annually. Back in 1983, the average lifespan of a person with Down syndrome was only 25 years. At present, the average life expectancy for individuals with Down syndrome is almost 60 years and rising.

Nonetheless, a study conducted in 2015 revealed significant disparities in the life expectancy of individuals with Down syndrome based on their racial backgrounds. Although Down syndrome affects all racial groups equally and typically occurs as a “random” event, individuals who are African American and from other minority populations have not experienced the same level of improvement in their mortality rate as their white counterparts.

According to a study by the Center for Disease Control, the life expectancies of minority populations were nearly half of those identified as white among nearly 18,000 individuals with Down syndrome in the United States from 1983-1997. Although life expectancy had improved in the minority populations, it did not reach the same level as in non-minority populations.

Researchers examined various factors, including prenatal care, prematurity, and congenital heart disease (common in individuals with Down syndrome), to identify a cause for this racial disparity. Unfortunately, no single trend could explain the difference in life expectancy. Notably, prenatal care alone exhibits significant racial disparities, with higher infant mortality rates and greater rates of preterm birth among non-Caucasians. Additionally, there is evidence of later diagnoses of individuals with Down syndrome, which could contribute to this pattern.

While the study raised more questions than answers, it undeniably underscores the importance of health equity, ensuring that everyone has a fair opportunity to be healthy. This imperative fuels our team at Nationwide Children’s Hospital to persist in our pursuit of answers.

Our new Center for Child Health Equity and Outcomes Research in the Abigail Wexner Research Institute was established for precisely this purpose. The center is committed to researching and identifying disparities like the one observed in the study. Our researchers are exploring approaches to diminish disparities and enhance health equity so that every child has an equal chance of achieving optimal outcomes.

If you are a parent of a child with Down syndrome and have inquiries concerning their care, please schedule an appointment with our Down Syndrome Clinic.