Doctors Don’t Know How to Talk About Down Syndrome

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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When we were in the hospital with Penny as a newborn, we received data about Down syndrome that listed medical concerns: celiac disease, childhood leukemia, hearing loss, vision loss, heart defects. It wasn’t until later that we learned life expectancy for children with Down syndrome has doubled in our lifetime, or that the vast majority of adults with Down syndrome report happy and fulfilling lives. We needed a vision formed by real families with real struggles and celebrations in their lives. Instead we got a list of potential problems.

Nearly two decades later, it’s clear that stereotypes and biases persist even among the providers who should be most equipped to talk about the condition. In the study, researchers asked parents whether their doctors used the words “I’m sorry” or presented the diagnosis as something negative. They also identified times when physicians offered erroneous or discriminatory assumptions about people with Down syndrome, like talking about them as burdens on society. More than 61% of parents surveyed reported these types of implicit or explicit bias.   

According to the American College of Obstetricians and Gynecologists, pregnant people should receive an array of options (termination, adoption, and continuing the pregnancy) with a prenatal diagnosis. They also should be offered accurate, up-to-date, and comprehensive information about Down syndrome. And yet the study found that while the majority of doctors offered the options, far fewer provided the comprehensive information, despite the existence of resources that help convey the social reality of disability and give vulnerable women important information in the face of what is often an intense and relatively urgent decision.

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When Penny was a toddler, we participated in a program through a medical school in New Jersey to help train physicians to better understand disability. Students were required to see patients with disabilities not only in a medical setting, but also in the context of their family life. Once, we hosted two young doctors for dinner, and one of them admitted that earlier in the day he had told his fellow students that having Down syndrome was the worst thing that could happen to a family. By the end of our time together, he said he would love to have a family like ours, Down syndrome and all. Even a short glimpse of a child in the social context of her home rather than solely through the pages of a medical textbook changed what he could imagine. 

When doctors have an imagination for a social and family life that could involve happiness, connection, and health for people with Down syndrome, alongside an awareness of some of the challenges and complications that can arise, they can better offer both information and care. In addition to training programs, resources like the Lettercase pamphlet give physicians words, images, and data they need to talk about Down syndrome. Lettercase was developed in consultation with advocacy groups and families as well as various medical associations. It has been recommended by the American College of Medical Genetics and Genomics for its accurate and balanced presentation of medical and social information about children and adults with various genetic conditions.

People who live with Down syndrome do face hardship and suffering. They also live lives of beauty, purpose, and love. Parents who receive prenatal diagnoses deserve the chance to imagine a whole range of possibilities for their families and make decisions based on accurate and comprehensive information.

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Over the course of Penny’s life, we have accumulated a lot of information about Down syndrome. But Penny has also given us a new understanding of life with an intellectual disability. Today, she is a senior at our local high school, where she is taking a Great Books class with neurotypical peers and a math class with other kids with disabilities. She has a job in a local café. She has no interest in ever learning to drive a car. She loves Taylor Swift and the Yankees.

Penny challenges me to pay more attention to people instead of tasks, to laugh instead of curse when I make a mistake, and to value mutuality more than self-sufficiency. She has different capacities when it comes to learning, but she has no limits on her capacity to love, or to live a full life. Instead of a shameful reality that requires an apology, we have gained an expanded understanding of our shared humanity and diverse ways of being in the world.