Amy Julia Becker shares her experience of being the mother of Penny, a child who happens to have Downs Syndrome. While the diagnosis was a jolt to her and her husband, the learning curve has been one of joy and grace:
Penny is twenty-six months old. She says “no” with the gusto of any of her peers. She uses speech and sign language to communicate, and has an expressive vocabulary of more than two hundred words. She tells me what she did at school today, and the names of her friends, and what she would like for her afternoon snack. Penny loves music. She eats with a spoon and fork, albeit messily. She knows her shapes and colors. She gives lots of hugs. She says “sorry” after a time-out for pulling the cat’s fur or throwing her drink on the floor. Her facial features are distinctive. Beautiful, I think, but different. She’s very short, and she wasn’t able to walk steadily until a few months ago. In other words, she has Down syndrome, and she is developing, in many ways, like any other child. Asking whether I am at risk for having another child with Down syndrome (and statistically speaking, the answer is yes, my “risk” is 1 in 100), is akin to asking whether I am at risk for having another child with brown hair, with gorgeous green eyes, with her father’s hand-eye coordination or her mother’s love for books. It implies that Down syndrome is something separate from Penny, something that could be extracted if only we had the proper tools and procedures. But that extra chromosome is intrinsic to Penny’s being. To take away Down syndrome is to take away Penny.
And yet, as her thesis reveals, the medical community would take away Penny in a heartbeat -- according to their "standards of care."
I heard a report on NPR about a new ethics recommendation from the American College of Obstetricians and Gynecologists. ACOG has stated that doctors unwilling to provide abortions have an obligation to refer their patients to another physician who will provide the procedure. In the words of the spokesperson on NPR, “if a physician has a personal belief that deviates from evidence-based standards of care . . . they have a duty to refer patients in a timely fashion if they do not feel comfortable providing a given service.” [snip]
As a result, I am somewhat skeptical about the standard of care offered to these mothers. I’m also skeptical when “personal beliefs” are pitted against evidence, therefore implying that a physician who is unwilling to perform an abortion has defied (“deviated” from) the evidence. I understand that many women face unbearably difficult choices in regards to the health of their babies. Some choose to terminate pregnancies because they have been given information about the near certainty of physical abnormalities leading to their child’s early death. And yet many women choose to terminate a pregnancy based upon probabilities, fear, and misinformation.
Seems to be the standard fare in women's health, considering many reproductive issues. All under the banner of freedom.