For parents with three small kids -- Michael is 4, Jack's 3, and Anthony is 19 months -- Lisa and Mike Spellman are surprisingly calm people. From the jumble of bike helmets and bright plastic toys, to the family pictures on every table, to the five baby gates in the downstairs alone, it's obvious that they've happily surrendered to parenthood. Lisa (a former attorney, now an at-home mom) and Mike (a neuroradiologist) take it all in stride, even when the volume in their Nashville house approaches deafening.
In the playroom, Michael and Jack roll their toy cars while Anthony watches, rapt, following their every move and laughing whenever they do. He's too young to get the joke or participate in the game, but he's fully part of the gang. And when he laughs, with his head tilted to one side and his eyes squinched almost closed, he's a redheaded copy of blond Jack.
So when Mike was at his high school reunion on Long Island a while back and going on a bit about the radical changes in his life since he became a dad, he was startled to hear an old friend say sympathetically, "I could never understand what you're going through." Mike just looked at him. "It took me a while to realize what he was talking about," he says.
Devastating news
The friend was talking about Down syndrome, a diagnosis the Spellmans received in the delivery room when Anthony was born. The most common form of Down syndrome -- named for the British physician who first described its physical traits in 1866 -- is trisomy 21; it's a genetic anomaly in which a person has three copies of the 21st chromosome, instead of the standard two. The extra genetic material is believed to cause hearing loss, impaired vision, respiratory difficulty, and cardiac defects, among other health problems -- as well as mild to moderate cognitive disability. For Mike's friend, the idea of raising a child with so many problems must have seemed overwhelming.
One in every 733 babies (about 5,500 a year) in the U.S. is born with Down syndrome, most to parents, like the Spellmans, who had no special risk factors. Older mothers are more likely to have a baby with Down syndrome, but 80 percent are born to women under age 35, because more in this age group have kids and, until this year, they weren't routinely tested in the first trimester. But two noninvasive blood tests combined with a new ultrasound can identify Down with 87 percent accuracy at 11 weeks' gestation, without risk of miscarriage. Currently (and controversially), an estimated 90 percent of Down pregnancies are terminated, but this new test may raise that percentage.
Not that it would have changed anything for Lisa.
"Whatever those tests might have revealed, it wouldn't have changed our minds about the pregnancy," she says. When she went into labor, her biggest fear for her baby was prematurity -- her due date was a full month away.
After Anthony was born, though, everything seemed fine. He wasn't struggling to breathe, his Apgar scores were good, and he pinked right up. The delivery room nurses took him to the nursery, explaining that they wanted the pediatricians making rounds to see him.
When an hour and a half had passed and the nurses weren't back with her baby, Lisa began to worry, and Mike was being very, very quiet. As the minutes ticked by, Lisa kept asking, "Where is he? I want him to start nursing. Where is he? Is something wrong?" Mike, who'd noticed that his new son had many of the telltale signs of Down syndrome -- a flat face, an upward slant to the eyes, a crease in the middle of each palm -- hoped he was mistaken and said nothing. "I didn't want to worry Lisa," he says. "What if I was wrong?"
When a doctor finally came in, his look told Mike he wasn't mistaken. Lisa was stunned. Even now, she tears up and her voice trembles as she remembers: "I got blindsided. I couldn't help feeling I'd done something to harm him. You take your prenatal vitamins, buy the bassinet and clothes, then you pack your hospital bag -- you've prepared for the test. With Down syndrome, for the first time in my life I hadn't prepared for the test."
Margaret Renkl, a contributing editor, wrote "Are We Overmedicating Our Kids?" in the November issue.
