A little over a year ago, Abbie and Rick Smith had a baby they named Noah. They are still smarting from their obstetrician’s words after his birth. “She said, ‘I’m sorry,’” says Rick. “Everyone at the hospital treated us like it was a funeral.” Noah had Down syndrome, and neither his parents nor his doctor had been aware of his diagnosis before he was born.
Noah’s father had never known anyone with Down syndrome, but he was determined to show the world that Noah was a regular kid and not someone to be pitied or feared. Nor is he the stereotypical “sweet angel” that kids with Down syndrome are often made out to be; he gets pretty testy when he wants his bottle. On NoahsDad.com, Smith uploads a daily one-minute video of Noah doing his thing — going to the mall, going to physical therapy — and has garnered his son a pretty impressive following for a 1-year-old: Noah’s Facebook page has got nearly 13,000 fans. Says Smith: “There’s no ‘sorry’ in this house. The only thing in this house is celebration.”
In the Feb. 27 issue of TIME Magazine (available to subscribers here), we take a look at the difficult decisions that are playing out every day in this country as parents grapple — many of them during early pregnancy — with a diagnosis of Down syndrome, the most common chromosomal condition. The number of babies born with Down syndrome has been shrinking for at least two decades, and new, non-invasive prenatal blood tests that can be administered as early as 10 weeks — long before a woman even looks pregnant — have the potential to diminish their ranks further. Says Smith: “We are in a race against science.”
Yet it’s not so simple. Most parents, it goes without saying, would not want their children to have a handicap of any kind. “We want the best for our children,” says Ruth Faden, the director of the Berman Institute of Bioethics at Johns Hopkins University. “That’s a natural inclination. There is nothing wrong with saying, I’d rather my child not have this disability, as long as we don’t go from there to the view that people with disabilities are worth less.”
These days, thanks to early educational intervention and an emphasis on mainstreaming affected kids into typical classrooms, children with Down syndrome are living fuller lives than ever before. Institutionalization is no longer the fallback it used to be, and adults with Down syndrome are now living long past their mid-20s, getting married, holding jobs and, like John Anton, living independently.
Anton, 46, lives alone in an apartment in Haverhill, Mass. His mother still helps him pay his bills, and Fran Hogan, his “support adviser,” helps him manage his schedule and prepare for presentations he makes to groups that advocate for people with developmental disabilities. But Anton is independent, taking the train into Boston (he doesn’t drive because his reaction times aren’t quick enough), and volunteering at the Massachusetts State House, where he researches bills and gets the mail. ”I know I have very little limitations,” says Anton, who reportedly has a wicked wit. “I am capable of making my own choices. No one never, ever plays smart with me because I can get smart right back.
Life, for many people with Down syndrome, is good, says Smith, who received a life-changing phone call shortly after Noah was born. The director of the local Dallas support group was on the line. “Congratulations,” he remembers her saying, “there’s never been a better time in the history of the world to be born with Down syndrome.” Check out the TIME magazine story here and see if you agree.