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November 29, 2007 By Sam Hananel Denise Sawyer didn't find out her second child had Down syndrome until after Ana was born. Still, the Mulvane, Kan., special education teacher says she never would have considered terminating her pregnancy, even if a prenatal test had revealed Ana's condition. "I could have had the test, but I didn't want it because I knew that it wouldn't have mattered," Sawyer said. "I would have had this baby anyway. What she has given us in our lives is a new perspective." But Sawyer's view is not typical of most parents who receive a diagnosis of Down syndrome. Doctors estimate that 80 to 90 percent of women who learn they are carrying a fetus with the genetic disorder decide not to have the child. That could change if Congress passes a bill that is an unusual collaboration between Sens. Sam Brownback, R-Kan., and Edward Kennedy, D-Mass., lawmakers with diametrically opposite views on abortion. The measure would require doctors to offer more comprehensive medical information about Down syndrome when parents receive a positive test, including facts about life expectancy, referrals to support networks and options for caring for children with the condition. The bill is a response to some reports that health professionals often focus only on the most negative aspects of Down syndrome when they counsel patients, ignoring the potential for people with Down syndrome to lead positive, independent lives. For Brownback, a longtime abortion opponent, the bill represents a small step toward ending the practice. "Here's a chance to advance the cause and have fewer children killed," Brownback said. "I'll partner with anybody we can, whether they're pro-life or pro-choice, if we can move that agenda forward." From Kennedy's perspective, though, the legislation is simply about providing more information about a condition many parents know little about. Kennedy's late sister, Rosemary, was born with mental illness and another sister, Eunice Kennedy Shriver, founded the Special Olympics. "One of the hardest moments in the life of an expectant mother is when she receives news that she is going to have a child with special needs," Kennedy said. "Access to the best support and information about the condition, and the quality of life for a child born with that condition, can make all the difference to a woman trying to make an informed and difficult decision." Kennedy, a prominent champion of abortion rights, does not mention abortion in his support of the bill, and it does not appear to trouble abortion-rights groups. "Unlike other legislation Sen. Brownback sponsors, this measure does not include anti-choice rhetoric or policy provisions that would harm women's health," said Nancy Keenan, president of NARAL Pro-Choice America. Keenan said the bill appears to support pregnant women "without undermining a woman's right to choose." But Brownback believes it is inconsistent to celebrate the accomplishments of special needs children "once they are outside of the womb, and yet they are destroyed in the womb." About 2,000 babies are born with Down syndrome in the United States each year, according to the American College of Obstetricians and Gynecologists. The disorder is caused by an extra chromosome and results in mental retardation and, in some babies, serious congenital heart defects. The risk of giving birth to a child with Down syndrome increases with age. A 35-year-old woman has a 1 in 378 chance of having a baby with Down syndrome, compared with a 1 in 1,250 chance for a 25-year-old. Earlier this year, the American College of Obstetricians and Gynecologists issued new guidelines recommending that all pregnant women be offered prenatal screening for Down syndrome, regardless of age. The noninvasive blood tests, which indicate the level of risk that a fetus has a genetic problem, have led to higher detection rates for Down syndrome. But the group stresses that it is up to the patient to decide whether or not to be screened, without judgment from the physician. Dr. James Goldberg, a member of the group's committee on practice bulletins and a San Francisco obstetrician, said he supports the idea of making sure parents are fully informed about Down syndrome. "People should have the best information available to them to help them make a decision," Goldberg said. Susan May, president of the Down Syndrome Society of Wichita, a group that offers support and information to families of children with the condition, said more information could help families understand that a Down syndrome child can have a fulfilling life, despite the hardships. After tests confirmed Down syndrome when she was five months pregnant with her son, May said she was not at all satisfied with how doctors reacted. "My husband and I came away from that meeting feeling that the person was identifying the negative things and not talking about the positive," May said. "I definitely think it's important to give more information and try to connect parents with families that have a child with Down syndrome. That made a big difference for me to see other children with Down syndrome thriving and that life doesn't stop." Sawyer's daughter, Ana, is now 10 years old and in the fifth grade. She mostly attends regular classes with other public School students in Mulvane, outside Wichita, and has two hours of special education classes in math. Sawyer and her husband also have a 12-year old son with no special needs. "I think people have to make their own choices, but I think people who terminate a child just because they have Down syndrome have missed out on a huge positive change in their lives," Sawyer said. "Our kids can teach us so many things that we wouldn't learn otherwise." --- The bill is S. 1810 --- On the Net: Congress: http://thomas.loc.gov Down Syndrome Society of Wichita: http://www.dsswichita.org American College of Obstetricians and Gynecologists: http://www.acog.org
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