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By Disabled People for Disabled People

Thursday, 14 September, 2023

Doctors Still Don’t Know How to Talk About Down Syndrome — TIME

Nearly 18 years ago, I gave birth to a healthy baby girl on a Friday night in late December. She was our first child, and we marveled at her big blue eyes, her shock of black hair, and her tiny, delicate features. We named her Penny, after her grandmother.

Two hours after she was born, a nurse called my husband out of the room. She escorted him to a dimly lit supply closet, where he stood among extraneous equipment and a pediatrician who refused to look him in the eye. “I’m sorry,” the doctor said. “Your baby has the features of Down syndrome.” My husband returned to our room alone, his eyes brimming, carrying the responsibility of telling me this information that neither of us had the experience or knowledge to begin to understand.

Penny’s diagnosis came a long time ago, but the discomfort, limited information, and truncated imagination for our family back then is similar to what many women experience prenatally today. A recent study in the Journal of Disability and Health looked at the role of bias in prenatal screening experiences and found that, according to the parents of children with Down syndrome surveyed, obstetricians frequently framed the diagnosis as a bad thing and failed to provide accurate and up-to-date information about the fetus’ condition. This information matters because it lays the groundwork for informed choices and for envisioning what could lie ahead.

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