Evidence-Based Standard of Care

I remember how I felt two hours after my daughter Penny was born, when I first found out that she had Down syndrome. I sifted through my brain for some scrap of information about this “thing” that had just happened to our family. All I could come up with was early death and mental retardation. The doctors didn’t help much. In the hospital, we received a list of all the things that might go wrong with our baby“heart defects, leukemia, Celiac disease, developmental delays. Despite the hundreds of thousands of people with Down syndrome in America, even the medical professionals didn’t seem to know much about it.

Penny is two years old now, the initial shock and fear of having a child with an extra chromosome has worn off and I’m pregnant again. Yesterday morning, a colleague stopped me, “I didn’t know you were expecting!” she exclaimed. I grinned and patted my round belly, “Hard to miss. I’m at the halfway mark.” I opened my car door with the intention of driving away. But she continued, “I assume you’ve done all the screening on this one to find out, if, you know . . . ” We went on to talk at length about the various prenatal tests I could undergo. I tried to explain why I wasn’t opting for an amniocentesis, why I was somewhat uncomfortable with the prenatal testing industry in general, and why I wasn’t particularly concerned about having another child with Down syndrome. But she didn’t seem to understand.

She certainly didn’t understand that her polite inquiry sounded to me like a rejection of Penny. No one means to suggest that my husband and I wish our daughter didn’t exist, but that implication rises to the surface every time I’m asked about the tests I’m doing for the baby in my womb. I hear the unspoken questions: “Will it happen again? Will you have another defective baby? Another Downs kid?”

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.

As I drove home from my conversation in the parking lot yesterday, which was one of many like it, 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.” Studies show that women who receive a prenatal diagnosis of Trisomy 21 (the technical term for Down syndrome) terminate the pregnancy 85 percent of the time. Since new medical guidelines“â“evidence-based standards of care❓suggest that all women, regardless of age, be screened for Trisomy 21, it is most likely that the number of prenatal diagnoses, and the number of terminated pregnancies, will increase. In other words, evidence-based standards of care result, more often than not, in the elimination of people like my daughter from our society.

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 (â“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.

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. (Penny had a hole in her heart, for instance, that may well have killed her a few decades ago. Now, it didn’t even warrant an overnight stay in the hospital, as her doctors were able to access her heart through an artery and close it up.)

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.