My mother-in-law called to ask when we were having the amniocentesis. I told her, in as level a voice as I could muster, that we weren’t doing any testing. She was silent. I took a deep breath. She cleared her throat and told me about the church service she’d attended that morning. The entire congregation had prayed for someone’s baby who’d been born with Down syndrome.
“It really hit home,” she said.
At 38 years old my odds for a baby with Down syndrome are approximately 1 in 175. 175 is about the same number of “friends” I have on Facebook. I don’t put much stock in numbers or odds. The odds for being diagnosed with type 1 diabetes are 1 in 400, and I hit the jackpot on that one. But with two healthy children I worry that I might be pushing my luck.
When I was pregnant with Will, who is going to turn 8 this summer, I got a false positive result on our AFP test. My ob-gyn told me my baby was at an increased risk of having Down syndrome. I was 30 years old and instead of a 1 in 900 risk, according to the test, our unborn child was at 1 in 80. I left work in tears and for an entire week my husband and I lay awake at night, worrying about the future of our child. In the end the test was proven wrong and Will is as healthy as can be. We repeated the test with Will’s younger brother and were relieved when it came up negative.
Five years later, I am pregnant with lucky number three. In the first trimester, I was still adjusting to the fact that we were going to be parents again and didn’t want to think about tests. But I am older this time. At 38 years old, I am at a higher risk for genetic abnormalities and knew I would need to decide between a CVS, amniocentesis or first-trimester screening. I didn’t want anything to do with any of these. Compelled by a mixture of guilt and curiosity, I dusted off my Mayo Clinic pregnancy book and looked up genetic testing. On the page that discussed Chronic Villus Sampling, there was an illustration of a tiny fetus with a giant needle poking through a uterus. I quickly closed the book. I couldn’t do that to this baby. But I worried that my husband would want the security of scientific results.
As a woman with diabetes my life has been structured around the promise of control — that good blood sugar control could ward off blindness, amputation, heart disease, and an early death. After 25 years, control has kept me safe. So it’s unnatural for me to give up control over aspects of my life, and the lives of my children, to close my eyes and trust that everything will be okay. Because it isn’t always.
So I made an appointment to see a “genetic counselor.”
In her small, windowless office the counselor asked us all kinds of questions about our extended family, neatly drawing a diagram of connected lines and triangles. I offered up as many details as I could remember, like the first cousin I thought was considered mildly retarded.
“But his mother smoked pot during the pregnancy!” I blurted out, ready to rip open the door to any family skeletons. The counselor smiled a polite smile and turned to my husband to draw his history. His family tree was healthy. It was all me, I was the one with the big skull and cross bones above my head, the one with the big fat “x” for diabetes. She gave us the numbers for all kinds of potential genetic risks, making me want to lie down and close my eyes. She told us about the risks of passing on diabetes and I corrected her figures, having just done research for an article about diabetes and pregnancy. The counselor gave us the combined risk for children of men and women with diabetes, and I told her the risks were actually higher for fathers with diabetes than they were for mothers. I wanted to tell her she ought to update her figures but I kept quiet. What about all the women who came after me and heard the same news? Would that change their mind about having a baby? When she handed me a copy of her drawing, I shoved it to the crumby, littered bottom my bag.
Leaving the office I realized I wasn’t mad at her. I was mad at the fact that my children were at a higher risk because 25 years ago, I was one out of 400 who got stuck with a chronic illness. I wanted to raise my fist to the sky and scream, “why me?” Hadn’t I dealt with enough already? So we were at a higher risk, so what? What would poking a needle in my stomach tell us? We knew, without speaking, that we wouldn’t be able to say no to a baby if tests showed some kind of imperfection.
That night I finished reading Hurry Down Sunshine by Michael Greenberg and it felt like some kind of a sign. I realized that genetic testing wasn’t going to tell us whether our child would develop psychosis like Greenberg’s daughter did at 15 years of age. It couldn’t describe the depth of love he discovered for his daughter, and his willingness to help her in her struggle. I knew from my own experience that genetic testing wasn’t going to tell us whether or not our child would inherit diabetes and if it could, what difference would it make? If my parents had been able to look in a crystal ball in 1970 and see that “x” above my head, I knew they would have shrugged their shoulders and continued on. These tests won’t give me any kind of guarantee about our luck.
The tests I took for our first children didn’t forewarn us that Will would develop terrible respiratory airway infections that forced us to take him to the ER in the middle of the night. The tests also didn’t tell us that he would acquire anxiety, causing him to scream and cry when we tried to get him on an airplane or drop him off at pre-school. The tests didn’t predict that Miles would be so stubborn I would have to completely readjust my parenting techniques, or that he would need over $4000 worth of dental work by the age of four.
We’ve decided to do nothing and continue on. As the soon-to-be parents of three children, we will be unbalanced — there will be more of them than there are of us. I’m realizing that I gave up long ago on the search for perfection — a perfect body or a perfect family. I’m not sure those things exist. I know that while control helps keep me healthy, I can’t control the future, no matter how many crystal balls are offered. Maybe as a mother with a chronic illness, I’m learning that perfection is just an idea.