Longform

Up the Down Staircase

Tyler was barely born when Kevin Huff looked down between his wife Shawnie's legs and noticed that their third child had Down syndrome.

It's hard to pick out the signs of Down syndrome -- the almond-shaped eyes, the low ears, the flat nose -- on a squishy newborn face. But Kevin and Shawnie had practice. Their other son, Braxton, and daughter Tia were born with it, too.

As Kevin recalls, he looked at Tyler's face and said to Shawnie, "I think he has Down syndrome."

"We just started laughing. We couldn't stop laughing," Shawnie says.

They agreed that Santa Claus would come to their house forever. The Easter Bunny, too. Over the years, there's been a handful of families in town who have two children with Down syndrome, but no one can remember a family with three. Down syndrome is a genetic disorder that occurs in about one of every 800 babies, resulting in distinctive facial features, some level of mental retardation and low muscle tone. Once regularly institutionalized, these days people with the disorder often live semi-independently, and work easy jobs. You've probably seen them bagging groceries at your local supermarket.

Down syndrome is often accompanied by serious health problems, including congenital heart defects and intestinal abnormalities. By the time Tyler was born, the Huffs already knew all about that side of Down. Braxton, who would have been almost 6 by now, died of pneumonia when he was a little more than a year old; at birth, his esophagus did not reach his stomach, and his short life was filled with hospital stays and operations.

Tia, who will be 3 next month, had open-heart surgery at four months and is doing well. Tyler, now eight months old, is also healthy.



If statistics are accurate, Tia and Tyler are in for a lifetime of health problems, which could include poor eyesight, thyroid disorders and leukemia. The average life expectancy for a person with Down syndrome is 55.

The idea that your children will never grow old is whimsical and sweet, but it's also sad. There is certainly something melancholy about Kevin and Shawnie Huff. It's hard to tell, not having known them longer, if they were always that way.

Now they are at a crossroads. The Huffs want more children, but they do not want more children with Down syndrome. And as Mormons, they would not terminate a pregnancy.

But the chances are great that their next child would have Down syndrome, too, because the genetics experts' best guess is that one of them carries the gene mutation that causes Down in his or her reproductive cells.



One option for Kevin and Shawnie is in vitro fertilization. Her eggs would be harvested and fertilized with his sperm. Before being implanted, the fertilized eggs would be tested. Only the ones without Down syndrome (if there were any) would be used. The Huffs are okay with this method, even though some hard-core pro-lifers consider it abortion. But it costs at least $10,000 each time you try it.

"That's why we're very undecided," Shawnie says, adding that they might try to adopt a typical child.

Why do the Huffs need a normal kid? Don't they have enough to deal with? Shawnie says that with Tia and Tyler, she knows she'll never have children who abuse drugs or come home late or throw temper tantrums (actually, Tia can throw a pretty impressive tantrum already). But Shawnie also knows she'll always be raising Tia and Tyler.

"Probably, our kids will never get married. Probably, we will never have grandkids," Shawnie says.

Kevin wants to put some normal kids into the mix.

"I always think about what society would be like if every family had a child with Down syndrome and raised them at home," he says. "We need to have people to take care of, so that we're empathetic."

And it is true that along with flat noses and heart defects and a life expectancy of only 55, people with Down syndrome tend to be very sweet-natured and happy. Kevin and Shawnie think that would be good for a typical kid to grow up around, too.

But how to get that typical kid?

"The whole ethical decision is just different for us than it is for anyone else," Kevin says.

"We're spiritual people," Shawnie adds.

They pray for an answer.


Now it's time, as my editor says, for me to "come clean." I first learned about the Huffs in a newsletter for a local support group called Sharing Down Syndrome. Always on the hunt for story ideas, I handed the newsletter to my colleague Paul Rubin, who has a way with human-interest stories. He liked the idea, said he'd get to it soon. Making conversation one day with my boss, I mentioned the Huffs.

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Amy Silverman is a two-time winner of the Arizona Press Club’s Journalist of the Year award. Her work has appeared on the radio show This American Life and in the New York Times, the Washington Post, Lenny Letter, and Brain, Child. She’s the co-curator of the live reading series Bar Flies, and a commentator for KJZZ, the NPR affiliate in Phoenix. Silverman is the author of the book My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome (Woodbine House 2016). Follow her on Instagram (@amysilverman), Twitter (@amysilvermanaz), and at amy-silverman.com.