WASHINGTON — Susan May considered terminating her pregnancy when tests confirmed that the 5-month-old fetus she was carrying would become a child with Down syndrome.
The Wichita, Kan., woman was scared and unhappy with the way that doctors delivered the news, stressing the negative. But she's happy that she didn't have an abortion. She said that raising her son, Wyatt, who's now an energetic 5-year-old, had been a very fulfilling experience. And she said it was sad that the vast majority of women decided to abort when they were faced with the prospect of raising children with disabilities.
"A lot of families are missing out on the experience of raising a wonderful child that they'll never know," May said.
It's not only sad but wrong, says Sen. Sam Brownback, who wants to do something about it. In an unusual bipartisan alliance, the Kansas Republican has teamed up with Democratic Sen. Edward Kennedy of Massachusetts on a bill that aims to reduce the number of abortions that are tied to genetic disorders.
The bill would create a national registry of families who are willing to adopt children with pre- or post-natally diagnosed conditions. In addition, families that receive diagnoses of Down syndrome or other genetic conditions would be referred to support services, including a national clearinghouse that would give them information on coping.
"We're just saying instead of killing the children, let them live," Brownback said in an interview.
The Senate Health, Education, Labor and Pensions Committee, which Kennedy heads, passed the bill unanimously Feb. 27. It now heads to the full Senate, and similar legislation has been introduced in the House of Representatives. Brownback's bill would cost $5 million.
Currently, Brownback said, 90 percent of pregnancies are aborted when a genetic test shows that a fetus will develop into a child with Down syndrome, spina bifida, cystic fibrosis or dwarfism.
"I'd like to see it come way down," Brownback said. "I think these children are beautiful and sacred children, and they should be allowed the chance to live."
Some expecting parents decide that they can't handle the added difficulty of raising children with disabilities, Brownback said. "The answer isn't to abort the child," he said. "The answer is to have the child and put the child up for adoption."
Brownback said he first came across the issue when he read a book by a California couple whose doctor urged an abortion after sharing the test results.
For Brownback, one of Capitol Hill's staunchest opponents of abortions, the bill is part of his campaign for "the culture of life." It's rare that he joins forces with Kennedy, who favors abortion rights. Kennedy's office declined to comment on the legislation, but Brownback noted that Kennedy has been a strong advocate for people with disabilities. Kennedy's late sister Rosemary was mentally retarded.
Brownback said the bill hadn't run into any opposition, though he said that some people in the disability community were hesitant at first. He said he'd told them that the Americans with Disabilities Act should protect unborn children.
"It does seem inconsistent that we would protect them once they're here but destroy them in the womb just because of who they are," Brownback said. "Because that's why they're being destroyed."
He noted that in some cultures, such children are viewed as being specially touched by God and as gifts. Too many Americans, he said, focus only on the cost and difficulty of raising children with disabilities.
"We look at it so clinically," he said.
NARAL Pro-Choice America, a group that backs abortion rights, isn't opposing the bill.
"Unlike other legislation Senator Brownback sponsors, this measure does not include anti-choice rhetoric or policy provisions that would harm women's health," said Nancy Keenan, NARAL's president. "It's our view that the bill offers information and services to expectant women and does not undermine their right to choose."
May said she was thrilled with the bill because it would force doctors and other health-care professionals to get educated about the positive aspects of Down syndrome. When she received her test results, she said, she asked for basic information on support services and was surprised when doctors had nothing to give her.
"My husband and I both came away feeling like it was a negative situation we were in," May said. She said she got information on terminating her pregnancy but decided against it after reaching out to other parents of children with Down syndrome.
"It's not as scary and heart-wrenching as you think immediately," she said. " . . . And a big part of our decision was that we are Christians. It was our faith that helped us make the decision."
FACTS ON DOWN SYNDROME
Down syndrome is a common genetic variation that usually causes a delay in physical, intellectual and language development. The exact cause is unknown.
One in every 733 babies born in the U.S. has Down syndrome. Of all children born in this country annually, about 5,000 will have Down syndrome.
The life expectancy of people with Down syndrome has increased dramatically in recent decades, from 25 years in 1983 to 56 today.
While the likelihood of giving birth to a child with Down syndrome increases with maternal age, 80 percent of babies with Down syndrome are born to women younger than 35, as women in that age group give birth to more babies overall.
There's wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each has his or her own unique personality, capabilities and talents.
Of the people with Down syndrome, 30-50 percent have heart defects and 8-12 percent have gastrointestinal-tract abnormalities that are present at birth. Surgery now can correct most of these defects.
Source: National Down Syndrome Congress, National Down Syndrome Society