What materials did your OB give you about Down syndrome?

When the American College of Obstetricians & Gynecologists (ACOG) changed its recommendations about prenatal testing for Down syndrome in 2007, it emphasized that obstetricians should be “well-informed” about Down syndrome and provide the “natural history” of Down syndrome when delivering a diagnosis. What was your experience? Was your OB well-informed and did they provide you accurate information about living a life with Down syndrome?

I ask the question because studies have shown many patients do not receive accurate information from well-informed health care professionals. A survey of 500 ACOG fellows–active OBs in their professional organization–reported that 45% of OBs considered their training on prenatal testing “barely adequate” or “non-existent.” Another study of expectant mothers found many receiving outdated information and negative stereotypes about Down syndrome when their OB delivered a diagnosis. Finally, a study after the new ACOG recommendations were issued asked whether a change had occurred and found that it had. While there was a new “paradigm” where OBs offered prenatal testing for Down syndrome to all patients, only 29% reported providing educational materials when delivering a diagnosis.

Hence, again, the question: what materials were you provided when you received a test result for Down syndrome?

(P.S. Check out the resources tab for educational materials that have been recognized by the National Society of Genetic Counselors and received input from representatives of ACOG and the American College of Medical Genetics, and have been the subject of peer-reviewed studies).