When it comes to prenatal testing and disability, there are two extremes. One is the thought that a prenatal diagnosis of a disability like Down syndrome (trisomy 21) or other genetic conditions like trisomy 13 or 18, which are life-threatening, should end in termination. The other—less common—is that women who choose to terminate for reasons of disability are participating in systemic discrimination.
What if having a prenatal diagnosis is just a hard choice? Hard for all sorts of reasons, including potential suffering for the child, social stigma, and lack of financial and social support. What if we honor women’s hard choices?
I’m a huge advocate for the inherent value and belovedness of every human being. And I’m a huge advocate for recognizing the hard choices women face when they encounter a prenatal diagnosis.
This week, the New York Times ran a story about two women who chose life for their babies with trisomy 18. Even there, as the Times points out, they made different choices. One chose for their son to enter into hospice care upon birth. Another chose for their little girl to receive multiple medical interventions to support life. Both loved their children well. And both said they would respect women who made different choices than they did.
I’m grateful for the Times’ willingness to highlight these two different choices. I’m grateful they included the story of the doctor who has dedicated decades in support of families like theirs. I’m grateful for these women’s compassion towards others who have made different choices. Most of all, I’m so grateful for these families and their willingness to share their stories. They help us all imagine a world in which vulnerable and beloved babies are welcomed and cared for, even when their lives will be cut short far too soon.
MORE WITH AMY JULIA:
- Workshop: Reimagining Family Life with Disability
- TIME: Doctors Don’t Know How to Talk About Down Syndrome
- World Down Syndrome Day 2024
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