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down syndrome, the beginning

When John and I found out that we were having a baby, I knew two things: That we were expecting a son and that something wasn’t quite right. As a healthy and fit 28-year-old, I had no reason to expect a complicated pregnancy, but I was frightened and while everyone around me reveled in the John and my news I held my excitement in check. My confidence in thepregnancy grew with each passing week, but try as I may I couldn’t overcome the suspicion that something was wrong, that something bad might happen. Although I never shared with John exactly how anxious I was feeling, he did know that I had some concerns. Because John is the type of person who doesn’t worry about uncontrollable unknowns, he dismissed my concerns as the sort of paranoia associated with a first pregnancy. Only after spending a considerable amount of energy worrying about the viability of my pregnancy, it began to occur to me that maybe there was nothing wrong with the pregnancy; maybe there was something wrong with the baby instead.

Looking back, I suspect it was this fear that led me to my decision to take the multiple marker or triple screen test, a blood test that measures the levels of three pregnancy hormones in the body: alpha-fetoprotein (AFP), human chorionic gonadotropin (hCG), and unconjugated estriol (uE3). I understood that if my test results were abnormal that would mean that I mayor may not have a chance of having a baby with a neural tube defect or Down syndrome. I understood, too, that the flaw in this particular blood test was that it produces a lot of false positive or abnormal, results. According to the literate I read regarding the multiple marker screen, an average of 3 to 5 percent of women return an abnormal result on the multiple marker screen, and on average only about 10 percent of those women actually discover that their baby has a problem.

I shared my decision with my doctor who gave me a sort of permission slip for both John and myself to sign indicating that we both read the informational sheet she provided regarding false positive and false negative results test results, and that we were both agreed that the test was in our baby’s best interest. As John signed the form that evening over dinner, I commented, “I just think it’s a good idea to take all of these tests.” He agreed with me wholeheartedly and his enthusiasm caught me off guard. I rounded off the conversation with a sentence that would come to foreshadow the events of the remainder of my pregnancy: “I just think that it would be best to know if anything’s wrong with the baby so that we can have the specialists we may need there when it’s born.”

So it seemed odd to me that I was driving my car away from the doctor’s office after my next appointment when I realized that my doctor had told me to visit the office lab to have blood drawn for the multiple marker test. I turned my car around. When I got back to the office, the same technician who had drawn my blood for my pregnancy test filed the vile for this test. “Girl, you’re so conscientious,” she told me. “Most mommas would just go home and forget about it.” Although I liked that technician a lot, all I could manage in response was a tight smile.

When I got home from work about two weeks later John told me that the doctor’s office had left a message on the answering machine for me. I played the message. It was from a nurse who wanted me to call her “right away” regarding my lab results. That hot ice panic sensation filled my chest and washed outward, into my arms and out through the top of my head. I looked at John and he smiled, “I’m sure there’s nothing to worry about.”

The next morning I paced the floor, waiting for the doctor’s office to open. Part of me thought that by not calling I could reverse the test’s results. John called me several times from work that morning, asking if I’d called the doctor yet. By his third call, I realized that his poker face the night before was just a guise he had worn for my benefit.

When I finally reached the doctor’s office, my call was picked up by at least three different people until I was directed to the head nurse. Each pass-off added to my anxiety. The head nurse told me that my results were back and that they read “slightly high” for a woman my age. Before sharing the results with me, she reminded me again and again of what I already knew, that this test wasn’t always accurate, that it should only be used an indicator that more testing may be necessary. By the time I hung up the phone I knew that my test results were 1/143, when they should have been 1/2,000 +, and that John and I had an appointment for an ultrasound with a maternal-fetal specialist the next afternoon. “Let Dr. Greig take a good look at the baby,” the head nurse advised me. “He’s good and will let you know if he sees anything unusual. But I’m sure nothing wrong with your baby.”

I wanted to be sure, too, but I was not.

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