The new face of the Down-syndrome family. Becker reads to her daughter Penny, who has Down syndrome, and her son. Becker's book is about raising a child with the condition.
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The reality of raising a child with a disability, of course, is much more complex than the happy numbers in Skotko's study or the sobering ones in Prenatal Diagnosis suggest. Although most babies with Down syndrome have what are considered mild to moderate intellectual disabilities, there is no national registry for people with Down syndrome, so there are no reliable statistics for how many affected people fall into the "high functioning" category. It's hard to argue that parenting a nonverbal, severely impaired child is not tougher than caring for a mildly impaired child who sings her ABCs and can wipe her own bottom. But it's impossible to know from prenatal testing how severely a person will be affected, and many women aren't willing to take that chance.
It's true too that even in the best circumstances, mothers who learn after delivery that their babies have Down syndrome describe being overwhelmed with sorrow and disbelief on what they'd presumed would be a joyous day. Theresa Howard, a New Jersey ad copywriter who found out after her daughter Lydia was born in 2006 that she had Down syndrome, admits that she cried every day for nine months. "You go through this mourning process. What is the world going to be like for her? What will she be able to do?" says Howard. "I worried about the what-ifs. Will she have a boyfriend? Will people make fun of her? I stopped crying when she was able to sit up on her own."
Faden, the bioethicist, concedes that there's no case to be made that having a significant disability is a good thing. "If there were a magic pill to cure Down syndrome, would we say you can't take it because society will benefit from having people with Down syndrome around us?" she asks. "That would seem unthinkable."
Complicating things further, the Sequenom test is not the only one that is making a woman's womb more transparent than it's ever been. No longer will parents have to wait for a second-trimester ultrasound to learn the sex of their child; early blood tests can now reveal that and much more. A single new genetic test can screen for nearly 600 mutations. If it's O.K. to eliminate people with Down syndrome, is it also O.K. to end a pregnancy in which the fetus has a terminal diagnosis like Tay-Sachs disease? How about a cleft palate, which can be surgically corrected? And what about deciding the fate of a baby who has a breast-cancer gene? Selective abortion of female fetuses in China and India is chillingly commonplace. And putting aside the existential debate over abortion, what does it mean for a society to weed out children with Down syndrome or any of the other less than perfect among us?
"I don't think it's all search and destroy," Canick says in defense of the Sequenom test. "That is an awful way of looking at this." He does have a point. Testing can be helpful for women who choose to continue their pregnancies but find it useful to prepare emotionally and medically. Connecting with a community group of parents raising babies with Down syndrome is easier to do in the months leading up to birth than in the mad scramble of the postnatal period.