It's hard to think of a medical condition with a more depressing name, which is why parents like Carrie Ormsby sometimes call it Up syndrome instead. No point in being so negative about something that is, ultimately, so full of joy, she says about the medical syndrome the world calls Down.
Ormsby is a member of Uptown Downs, which is hosting the eighth annual Buddy Walk for Down Syndrome on Saturday, Oct. 9, in Murray Park. The Buddy Walk, a national event held in various cities around the country, promotes acceptance and awareness of people with the syndrome that was named after 19th century English physician Langdon Down.
Down himself thought the syndrome was a "reversion to the Mongoloid race" and dubbed it "mongoloid idiocy." It wasn't until 1959 that a French geneticist discovered the chromosome abnormality — instead of the 21st chromosome being a pair it's a trio — that causes the distinctive physical and mental characteristics typical of Down.
On a recent afternoon, Ormsby, her 2-year-old Lauren, and other mothers and their children met for a playdate at the West Valley City Family Fitness Center. While the toddlers busily explored the center's pretend grocery store and pretend police station, the moms talked about what they wished the public knew about Down syndrome.
Even medical personnel often have a grim attitude when they first confront parents with a new baby with the condition, they say.
"Oh, I'm sorry," one older nurse said to Ormsby shortly after Lauren's birth.
"My daughter is not dead. She's beautiful," Ormsby shot back.
That's why Uptown Downs started taking information, and a welcome basket, to new parents. But only if the hospitals remember to call Uptown Downs (which they frequently don't) and only if the parents agree. "Often parents don't want to see me because the grieving is too painful and they don't want to deal with more information," Ormsby says.
When they do agree to see her, "it never fails that I am the first one to say 'Congratulations,' " she says. "Every time I do, the parents are originally shocked and then relieved to hear that word. That one word acknowledges that their baby is still a baby and the birth is a wonderful event."
"To be honest," Ormsby says, "if I could change whether Lauren has Down syndrome, I wouldn't."
Heather Seal, mother of 2-year-old Morgan, agrees. "I've come to the point where I'm sorry for families without a Down syndrome child," she says.
Like many parents, though, Seal says she was horrified at first when doctors told her Morgan was born with the syndrome. The news came after a traumatic and yet oddly peaceful birthing experience in which Seal was initially sent home from the hospital after being told she was in false labor. Forty-five minutes later, while Seal was trying to relax in the bathtub, Morgan was born in the water. Seal's husband tied off the umbilical cord with a shoelace, and the couple drove to the hospital again. Six hours later, a pediatrician delivered the news.
"I started screaming and bawling," Seal admits. "I envisioned she would never be able to crawl and wouldn't talk and wouldn't even know who I am." Today, Morgan is an energetic, loving 2-year-old who blows kisses to everyone.
Unlike Seal, Lisa Kingsbury found out at 20 weeks that she was pregnant with a child with Down syndrome, or trisomy 21 as it is also known. "You need to go home and make a decision," an ultrasound technician told her, but for Kingsbury, abortion was not an option. Apparently that's often not the case.
According to the administrator of a chat forum at DownSyn.com, "my understanding is that there is no problem in placing a child with Down syndrome with a loving family. The problem is that so many children with Down syndrome are aborted that there are actually very few children available to adopt."
Indeed, another posting on the site, from a woman who was considering aborting her unborn child unless she could find someone to adopt it, drew more than 600 e-mails last summer from people offering to be the adoptive parents.
Mandy Buntjer and her husband, who already had two children, adopted a baby with Down syndrome last winter. "I had worked with the Special Olympics in college and found I had a real great love for these kids," Buntjer, 25, explains. "And we wanted our children to have compassion and to be blind to disabilities."
Although she can understand why parents who were expecting a "perfect" child might be upset at the birth of a child with Down syndrome, she says, "maybe making a conscious decision that that's what we wanted made it easier."
Ormsby and her friends wish the public knew more about Down syndrome: that the children have IQs that fall in the mild to moderate range of retardation; that they are active participants in the educational, vocational and recreational activities of their communities; that they often date and some are beginning to marry; that one in every 800 to 1,000 live births is a child with Down syndrome; that 80 percent of children born with the condition are born to women younger than 35.
With more awareness, they hope, perhaps people will refrain from saying things like "You'll never have to clean house again; they make great maids," or "Your family must be so special to be sent a special needs baby," which are both phrases that Ormsby has heard.
What she tells new parents, she says, is that "it doesn't take a Family of the Year to raise a special needs child. It takes a family willing to love that child."
The eighth annual Buddy Walk for Down Syndrome begins at Murray Park at 8 a.m. on Saturday, Oct. 9, with a 5K run (registration from 7 to 7:45 a.m.), and also includes a children's carnival, silent auction, lunch, and the Buddy Walk at 11 a.m.