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As aired on NPR, December 1, 2009.

Study: Down Syndrome Births Up

By Joseph Shapiro

A new study finds that there has been an increase in the number of children born with Down syndrome. One reason for the increase may be that women wait longer to have children, which increases the chances of a child being born with Down syndrome. Another could be that more families choose not to terminate a pregnancy.


MELISSA BLOCK (host): Here in the U.S., new research is surprising experts on Down syndrome. The study in the journal, Pediatrics, finds the number of children born with this syndrome has increased.

NPR's Joseph Shapiro reports.

JOSEPH SHAPIRO: The conventional wisdom was that because there's more prenatal screening, the rates of children born with Down syndrome was dropping. But the researchers found the numbers went up about one percent a year between 1979 and 2003.

DR. ADOLFO CORREA (Epidemiologist, Federal Centers for Disease Control and Prevention): It went up by 31 percent, from nine per 10,000 births to 12 per 10,000 births.

SHAPIRO: That's Dr. Adolfo Correa. He is an epidemiologist at the Federal Centers for Disease Control and Prevention, and co-author of the study. Correa says the main reason for the increase is probably the fact that more women wait longer to have children.

DR. CORREA: The prevalence of Down syndrome is five times higher among births to women who are 35 years of age and older.

SHAPIRO: There's another reason rates may be up and that may be the higher visibility of children with Down syndrome themselves. They live longer and healthier lives. They get surgery for the heart effects that are common for about half of them. They go to their local schools and some even go on to community college. Many get regular jobs.

MS. CYNTHIA KIDDER (ph): In my community, which is a pretty upper-middle class suburb of Detroit, Jordan is now working in a very public setting.

SHAPIRO: That's Cynthia Kidder talking about her 20-year-old son, Jordan. He's got Down syndrome. He graduated from his neighborhood high school a year and half ago. And three weeks ago, he started the job on the loading dock of a nearby store.

MS. KIDDER: He's at a department store where people see him come and go. He loves to go to Starbucks. He rides his bike. Other friends like him are out at the Pistons games. They're coming and going in such normal never-miss-a-beat fashion, that it is becoming more accepted. There are many more positive experiences to look around and see.

SHAPIRO: So, Kidder thinks people who know her son, if they ever get a prenatal diagnosis that indicates Down syndrome, are more likely to carry it through with the pregnancy. Still, Dr. James Egan says these are very difficult decisions.

DR. JAMES EGAN (Maternal Fetal Medicine Specialist, University of Connecticut): It's something that I think most mothers don't expect when they come in for an ultrasound or when they have a blood test looking for women at greater risk for Down syndrome. Most of the results are normal. Most of the results are reassuring.

SHAPIRO: Egan is a maternal fetal medicine specialist at the University of Connecticut. His own research shows the number of babies born with Down syndrome has held fairly steady. Still, it's far fewer than expected, given that so many women are giving birth at later ages.

DR. EGAN: Because our maternal population is aging, we would've expected more than twice as many Down syndrome babies in 2006 as in 1974. But we have only a slight increase.

SHAPIRO: The reason seems to be that there are better and more accurate diagnostic tests. Doctors now recommend that all pregnant women get tested for Down syndrome, not just the older ones. And new tests can check even earlier, when it is easier to end a pregnancy.

Joseph Shapiro, NPR News.