Writing on firstthings.com, Amy Julia Becker reflects on the recommendation by the American College of Obstetricians and Gynecologists that all pregnant women be offered prenatal screening for Down syndrome. This standard of care results in termination in at least 85 percent of diagnoses, Becker writes, and will likely result in the elimination of people like her cherished daughter Penny from our society. Becker thinks that many terminations are based on “probabilities, fear and misinformation.”
In the case of Down syndrome, many women receive incomplete data about what it means to live with an extra twenty-first chromosome, much like the list we received in the hospital after Penny was born. I wish that “evidence-based standards of care” included the fact that the life expectancy of people with Down syndrome has doubled in the past twenty-five years, or that the average IQ of a person with Down syndrome has doubled over the course of the twentieth century, or that many physical “defects” can be corrected relatively easily because of advances in medical care.
… I also wish that “evidence-based standards of care” included evidence of the potential for children like Penny. I wish it included not only a list of all the medical problems she could face, but also the joy she could bring and the abilities she could have. I wish it included the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on Varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe.
I will follow my doctor’s orders and have a Level Two ultrasound next week. I will hope and pray that this baby’s heart and lungs and brain and limbs look healthy and whole. And I will try to remember the fear and shock I felt when the words “Down syndrome” first became a part of our reality, and have compassion for every person who has trouble understanding the blessing Penny is to our family. And yet I will also hope and pray that physicians advising women and families who are frightened and uncertain and faced with life-changing decisions will offer those women a true choice, an informed choice, a choice based on the evidence that all of life is fragile and uncertain, with potential for heartbreak and potential for great joy.
Amy Julia Becker is a student at Princeton Theological Seminary.