What would I say now to a doctor who responded negatively to a prenatal (or postnatal) diagnosis of Down syndrome?

I was asked this question at an event in Chicago after I explained that a recent study showed that many doctors still exhibit a lot of bias in how they present prenatal diagnoses. The truth is, as I said in Chicago, I would probably feel flustered and get red in the face and still struggle to find words if a doctor spoke to me in biased terms about Penny.

BUT that wouldn’t be the end of the story. I would also follow up with a letter that identified the problematic language or experience and suggested a different way forward. (I did that once, in a new ob-gyn office when I was pregnant with Marilee. They had me fill out a form that included a question about whether our family had a history of “mongolism,” which is to say, an outdated and offensive term about Down syndrome.) And, even now, we participate in a program that provides medical students—both doctors and nurses—with an encounter with families experiencing disability.

Even when we don’t react the way we want to in the moment, there are other opportunities to respond.

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Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

Free Resource: 5 Things I Wish I’d Known When Our Daughter Was Diagnosed With Down Syndrome