The Blessing of a Down Syndrome Child

One of every 1,000 babies born in the U.S. has Down syndrome. But more testing means that number may soon drop. In the past, doctors recommended Down syndrome screening for pregnant women 35 and older. But now, they're offering it to all women. And that has made parents of kids with Down syndrome worried. Eddie is like most 3-year-old boys - scrappy, sports-oriented - but his mother Cathy Morgan remembers the awful call from the doctor before Eddie was ever born. Cathy said, "Her message was 'Legally, you have 24 weeks to terminate the pregnancy and you should do it sooner rather than later because it will be more difficult on you if you wait,' and you're sort of taken aback." For Cathy and her husband, the Down syndrome diagnosis meant high-pressured decision-making. "It's a very seductive message to be hearing, 'You can have other children. Is it going to be fair to your older son?'" Cathy said. Cathy eventually rejected those arguments. But she and other parents of kids with Down syndrome are worried that thousands of new parents may go in another direction This year, the American College of Obstetricians and Gynecologists called for expanded Down syndrome screening. That means the old practice of mainly screening pregnant women 35 and older will likely become routine for all pregnant women. Nancy Goodfellow never considered ending her pregnancy when she found out that her baby had Down syndrome. Her daughter Lily is now a 4-year-old go-getter. But it's estimated that as many as 90 percent of parents do abort their Down babies. Goodfellow said, "People are worried because of the fear of the unknown. People would say, 'Oh, well I don't want to have a child with Down syndrome' and so they could possibly terminate their pregnancy." Sheila Hebein is national director for a Chicago support group for parents, the National Association for Down Syndrome, or NADS. "I just hope there will always be a place in our society for children with Down syndrome," Hebein said. Hebein's group has received a lot of questions about the new recommendations and she hopes a public awareness campaign will allow them to get out helpful information. Hebein and her staff say most doctors simply don't know any kids with Down syndrome. Sadly, that tends to limit options in case of a positive diagnosis. Ann Garcia, also of NADS, said, "Their approach tends to be really heavily concentrated on medical problems." While the genetic condition does delay physical and intellectual development, parent groups say doctors and genetic counselors often err on the side of too many negative predictions. "Nobody, whether they have a Ph.D., M.D. - it doesn't matter what their experience is - none of them have a crystal ball and none of them can project what any baby will be like, whether they have Down syndrome or not," Hebein said, That negative approach is also evident in the largest study to date on pre-diagnosed Down syndrome. Mothers report that doctors did not tell them about the positive potential of people with Down syndrome. Also, they did not receive contact information for parent support groups. Genetic counselors can also play a key role in explaining the disorder to new parents. Beth Leeth, a clinical instructor at Evanston Hospital in Chicago, says she tries to keep the discussion neutral - even as parents are considering life-and-death issues. And she urges them to examine their desire for information. Leeth said, "We - parents - just want the answers. We don't understand the impact. And I think that's another important part of genetic counseling, to convey to patients, 'Yeah, this information is available. But how's it going to affect the way you see this pregnancy and yourself and do you really want to know that?'" The parents we talked with say it's most important that new parents get a balanced picture of life with these amazing children. Patrick Crawford, whose little girl Katia has Down syndrome, said, "Without that information, people act of out fear. People act out of ignorance." Parents of kids with Down syndrome want other parents to know that their kids are kids first, and that, 'Oh yeah, they happen to have Down syndrome.' "Down syndrome has never defined who Lily is," said mom Goodfellow. "Lily is first and foremost Lily. She's a beautiful 4-year-old girl." For Patrick and Elise Crawford, getting the message out meant mailing a book on the joys of Down syndrome to friends. For others, it's volunteering to meet with new families. For all of them, it's about spreading the word that life with these children can be a gift. Ann Garcia of the National Association for Down Syndrome said, "It's hard to love a syndrome. But a child- that's a whole other story." "A baby is a baby is a baby," Hebein said, "whether they have 46 chromosomes or 47." Goodfellow said, "I feel truly blessed to have a person in my life with Down syndrome and to be loved by someone with Down syndrome, and I don't want people to miss out on that great opportunity."