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MOMS AND DOCS Study on Down syndrome shows angst By Craig Reem Published: December, 2005

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Astudy by a Harvard Medical School student with mothers who had Down syndrome babies has opened a door into doctor-patient communication. Brian Stotko, who has a sister with DS, was profiled in an October issue of the Wall Street Journal. An examination by OC Family Magazine of the survey from the 1,126 returned questionnaires indicates that, by and large, the mothers who received prenatal diagnosis ­ that represented 141 of the returned surveys ­ were dissatisfied on a wide range of issues, from information about Down syndrome to outright pressure to end the pregnancy. The survey’s defining point is a good outline for doctors to follow across many disciplines and diagnoses. In this case, “The most common suggestions were that that diagnosis be conveyed in person, that up-to-date printed material on Down syndrome be provided, and that mothers be referred to local DS support groups.” A survey of 499 primary care physicians indicated that 63% “tried to be as unbiased as possible when delivering a prenatal diagnosis”; 13% said they “emphasized” the negative parts of DS to point parents toward an abortion; 10% said they “urged” parents to terminate; 10% explained the positive aspects of DS in an attempt to have parents continue with the pregnancy; and 4% actively “urged” parents to continue the pregnancy. The mothers, by and large, were resentful of both the negative news and the focus on the difficulties of having a disabled child. As many as 1-in-1,000 births in the United States is to a baby with Down syndrome, a genetic disorder caused by the presence of an extra 21st chromosome. One of the many lessons learned in this study is the mistaken assumption that pregnant women seeking prenatal screening or another diagnosis will wish to abort their fetus if signs indicate the child would have DS. “The results of this study indicate that this is not true for all women.” ­By Craig Reem

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