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Mothers speak: Physicians often fall short when delivering a down syndrome diagnosis

A survey of mothers in the January issue of Pediatrics found that physicians remain overwhelmingly negative in communicating a diagnosis of Down syndrome in newborn infants. Mothers reported that the majority of physicians were uninformed about the positive potential for children with Down syndrome, and rarely provided an adequate, up-to-date description of the children, printed information, or telephone numbers of other parents. By nearly all ratings -- including explaining Down syndrome, the timing and setting of the news, and the language that was used -- physicians fell far short of making the birth a positive experience.

The study was done by Brian Skotko, a student at Harvard Medical School (HMS) and Harvard's John F. Kennedy School of Government, and supported by the Tim White Fund from Children's Hospital Boston (where Skotko did his pediatric rotation) and a part-time research grant from HMS.

Skotko mailed an 11-page survey to nearly 3,000 members of five Down syndrome parent organizations in California, Colorado, Massachusetts, North Carolina, and Rhode Island. Of the 1,250 responses, nearly 1,000 were from mothers who had not undergone prenatal testing and received the Down syndrome diagnosis after delivery. Very few reported that the birth of their child was a positive experience.

Mothers were frequently advised to put up their child for adoption, or chided for not having prenatal testing, the survey found. Some mothers received the news too soon, such as while having episiotomies stitched up. While the worst reported instances came from the 1980s and earlier, and physicians improved over time, mothers still described insensitive comments as recently as the late 1990s and early 2000s. A mother in 1997, for example, heard a doctor refer to her newborn as an "FLK" ("funny-looking kid"); another who gave birth in 2000 reported, "The doctor flat out told my husband that this could have been prevented or discontinued at an earl
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Contact: Mary-Ellen Shay
mary.shay@childrens.harvard.edu
617-355-6420
Children's Hospital Boston
3-Jan-2005


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