Testing for Down Syndrome: A Parent’s First Test

Amy Julia's Becker's family, including Penny, who has Down syndromeIn a beautiful guest post on the NY Times Motherlode blog, author Amy Julia Becker writes about the decision not to test her baby in-utero for Down syndrome. It’s a tough decision for any parent, or at least it should be, but for Becker and her husband the decision has particular resonance: their first child, Penny, was born with the disease, which, as she writes, means “my chances of having another baby with Down syndrome increased significantly, from 1 in 1,000 to 1 in 100.”

When Becker was pregnant with her second child, she had the test to see if he has Down syndrome; it was negative, and indeed, her son was born without the disease. Now that she is pregnant with #3, she is deciding not to have the test:

Peter and I know the statistics. We know the health complications associated with Down syndrome — heart defects, intestinal abnormalities, celiac disease, low muscle tone, developmental delays. We know that Down syndrome brings with it more intensive one-on-one attention in the early years and more doctor’s visits throughout childhood. We know it brings with it more uncertainty as the child grows up.

But we also know that a textbook definition of a syndrome can never capture the reality of any particular human life. Penny, for instance, was one of the 50 percent of children with Down syndrome born with a heart defect. When she was 14 months old, she went into the hospital one morning to have her heart repaired. She came home that evening. Otherwise, she has experienced fairly normal health. Tubes in her ears, glasses and one hospital stay during a bout of the stomach flu. The list of potential problems that we received after she was born could never have predicted the pride we felt when Penny learned to write her name, when she, after months of practice, jumped off the ground with two feet, when she finally progressed to big-girl underwear.

Becker goes on to describe the reactions she’s heard from too many doctors counseling women whose babies are found in-utero to have Down syndrome or other health problems.

When a friend of mine, who has a daughter with Down syndrome, declined amniocentesis for her next pregnancy, her doctor shrugged and said, “Well, if it happens again, don’t blame me.” Another friend, upon receiving the results of her amniocentesis, was asked, “When would you like to schedule the procedure to terminate?”

For Becker, the beauty and richness of Penny’s life is reason enough not to test. If she wouldn’t consider terminating the pregnancy, why go through with the testing? “We declined prenatal testing because we would welcome another child with Down syndrome,” she concludes.

Even without a child with Down syndrome, my wife and I found the decision about whether to do certain prenatal tests wrenching. I have a nephew with a rare genetic disorder and the idea of getting tested to see if I was a carrier of the disease at first didn’t sit well with me, for the same reasons Becker cites: Ezra is a wonderful, happy kid with a rich life, and any parents would be proud to have a son as fantastic as him. But his parents, my brother and sister-in-law are strong advocates for testing, and seeing the other side to Ezra’s life—the daily challenges, the hospital stays, the intense scares, and the lifelong limitations and problems he faces—we decided to test. Thankfully, though I carry the gene for the disease, my wife does not, which means we need not worry about it for our kids.

But now that my wife is pregnant with #2, we decided to skip the same Down syndrome test Becker skipped. We decided we wouldn’t terminate the pregnancy anyway, and although part of me felt that we should at least get the information—if we’re going to face a major new set of challenges, let us know sooner, rather than later—we decided in the end to take it as it comes. This pregnancy is a blessing, and this child will be, too. Whatever the challenges she faces.

Find out more about parenting a child with Down Syndrome, get resources, and read personal stories.

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