Rachel, Jenna, and Jared–1-year-old triplets dressed in pink, white, and blue onesies–scoot over the floor of their Durham, North Carolina, home like plump caterpillars, inching toward their 13-year-old sister, Cindy Lynn, and her violin. While their mother struggles to keep the babies from toppling the music stand, Cindy Lynn, a slip of a girl with light brown hair and braces, sight-reads through a Bach concerto.
Watching the triplets in the thrall of their sister and her music, it’s easy to forget a rather strange fact: They were created to be different from her. Like approximately 100 other children around the world, the triplets grew from eggs that were painstakingly harvested, fertilized, and tested in a laboratory to be free of the genetic mutations that cause cystic fibrosis (CF), the disease that has in many ways defined Cindy Lynn’s life.
For couples like the Rays—each of whom carries a single mutation of the gene that causes CF–having children the old-fashioned way is a bit like playing a game of Russian roulette. There’s a one-in-four chance that any child they conceive will inherit two defective copies of the gene, and thus suffer from thick secretions of mucus clogging the lungs, pancreas, and other organs. The Rays took a gamble with two children after Cindy Lynn, and they were lucky: Jason, now 9, and Josh, 6, are both healthy. A few years later, the Rays–he works as a computer engineer, she has a degree in education and homeschools their children–were having trouble conceiving a fourth child. As the couple started looking into various artificial reproductive techniques, they learned that a geneticist could screen their embryos and implant only those free of the mutant genes.
The Rays are opposed to abortion. They understood that scientists would have to fertilize more of Cindy’s eggs than would actually be implanted in her body, and that the non-implanted embryos would never become children. But Cindy and Russell were willing to “split hairs,” as she puts it, in order to guarantee themselves a CF-free child. The two of them haven’t regretted the decision. Early in Cindy’s pregnancy, Cindy Lynn, then 11, had to be hospitalized suddenly with one of the painful lung inflammations that are all too common in cystic fibrosis. “That was good motivation for us,” says her mother, a straightforward, bespectacled 34-year-old who wears her chestnut hair in a neat pageboy. “It wasn’t like we didn’t love Cindy Lynn. But her disease is so hard.”
For several years you’ve been hearing about the day when doctors will take a little blood or a swab of cells from the inside of your cheek, extract the DNA, and put it on a silicon chip to provide a readout of all the illnesses you’re susceptible to. For now, at least, this is a pipe dream: Most diseases are too complex, and their causes too poorly understood, to be predicted merely by examining your genes. Cystic fibrosis is an exception. Since 1989, when scientists discovered the CF gene, we’ve known that two defective copies automatically causes the disease. Not only that, but CF mutations are alarmingly common, especially in Caucasians, of whom one in 29 is a carrier. In September the American College of Obstetricians and Gynecologists mailed out guidelines instructing its 40,000-plus members to offer CF-gene screening to all pregnant Caucasian women. If a woman tests positive, her husband is tested; if he is also positive, the fetus can be screened. Eventually more than a million couples a year are expected to be screened for CF.
Many people welcome the chance to make the choice the Rays did.
Dena Moore wishes screening for the disease had been routine when she was pregnant with her now 2-year-old son, Jacob. He was 4 months old when Moore, 38, found out he had cystic fibrosis. “Jacob will never be mentally retarded, he’ll never be crippled, and I love him more than life itself, but I still would rather have had the opportunity to choose,” says Moore.