I want to thank the woman who publicly shared how she terminated her pregnancy because her child would be born with Down syndrome. As difficult as her words are to read, they offer a road map for us to address hurdles standing between our loved ones with Down syndrome and the inclusion and respect they deserve.
Sophie Horan’s essay about why she terminated her pregnancy after receiving a prenatal diagnosis of Down syndrome tells us:
- Her medical providers were biased and unprofessional. (e.g., the person who delivered the diagnosis began with, “I’m so sorry.”)
- Her friends urged her to keep the diagnosis to herself, “just in case” she wants to abort. She gives no sign of having a trusted resource for accurate information.
- She shares a laundry list of false perceptions about what it means to have Down syndrome.
As a mom to a 4-year-old boy with Down syndrome, it’s gut wrenching for me to read this woman’s story. However, the details tell a story we need to pay attention to.
I choose to embrace her essay as a road map for change. What women hear, learn and believe in the wake of a prenatal Down syndrome diagnosis need to change. Here’s where we can start.
Diagnosis should be delivered without unfair bias
Medical providers should be trained and expected to deliver a Down syndrome diagnosis as a fact without bias. Where are our checks and balances? Operation House Call in Massachusetts is a program that introduces medical students to families who have a loved one with Down syndrome. As the Massachusetts Down Syndrome Congress explains, OHC “sets the foundation for health clinicians to feel comfortable providing care for people with Down syndrome and other disabilities.” Every medical school should incorporate this approach.
Doctors need to better understand and describe life with Down syndrome
Medical providers must have access to and provide unbiased, accurate information about what life with Down syndrome really means. This is critical. I’m talking about giving families the tough, the awesome and the very-mundane-in-between challenges and rewards of having a child with Down syndrome.
One of the best ways to share information with parents is through Lettercase materials — accurate, unbiased information about Down syndrome. These handouts are available via print or digitally, free of charge. But how do we ensure they reach the right hands?
Dr. Brian Skotko, co-director of the Down Syndrome Program at Mass General Hospital in Boston, suggests: “One small, but extremely meaningful, action that NIPS [non-invasive prenatal screening] companies can make is to send a copy of the Lettercase materials to each ordering physician who receives a ‘positive’ result for an expectant parent. The physician can then introduce the Lettercase materials in the context that they feel is best for their patient. This simple action could ensure that nearly all expectant parents who receive ‘positive’ NIPS results also receive the most accurate information.”
People with Down syndrome deserve more than token inclusion
People with Down syndrome contribute to society every day, but we don’t see enough stories about real life. Instead, we are told too many stories of inclusion pageantry: including a person with Down syndrome in a well-orchestrated scenario intended to show how wonderful those doing the including are, instead of spotlighting the person’s talents and skills. Remember the boy who was “allowed” to play in the big basketball game, once the team had a sure win on the horizon? That’s not inclusion. That’s pity and pageantry. We need more stories about real life with Down syndrome.
Image: Jenn Scott
My son’s one extra chromosome doesn’t promise or preclude anything, but society has a long way to go before he is properly embraced, included and respected. One woman’s story of choosing termination can help tell us how to get there.