New tests raise abortion fears, outreach efforts.Parents fear boosting prenatal testing is a way 'to wipe out a whole disability'
Jill Austin wasn't concerned about Down syndrome when she decided to have a blood test to screen for birth defects during her first pregnancy. After all, the risks are higher for women 35 and older, and she was only 24. But results showed her baby had a 1-in-100 chance of having an extra chromosome. The chances increased to 1 in 50 after another test. Amniocentesis confirmed the diagnosis.
The knowledge eventually became a relief for the Cedar Hills mom. She and her husband, Jeff, were able to prepare - and even mourn - well in advance. By the time Joby, now 6, was born, the Austins were ready and excited.
"Her birth was a celebration," Austin remembers. Still, she and much of the nation's Down syndrome community don't support new guidelines - generated with the help of thousands of Utah women who participated in research - that call for offering widespread screening for the genetic disorder.
The American College of Obstetricians and Gynecologists intended to empower families by expanding testing beyond women 35 and older, the previous standard of care. But opponents say it sends the message Down syndrome is something to eliminate because the disorder cannot be cured.
Fearing women will end their pregnancies after the diagnosis, many Down syndrome support groups are mobilizing. They want to reach out to doctors - who they say offer outdated information about the disorder - and to families to show them raising a child with Down syndrome is rewarding. "If we don't get to the doctors beforehand, there are going to be lots of people aborting children. It's scary to think these kids don't have a chance," Austin said, gazing at her daughter in their Utah County home. "It [the screening] is a form of getting rid of the Down syndrome population."
"We're pro-options." Doctors adamantly disagree. "None of this has anything to with termination of Down syndrome at all," said Nancy Rose, director of perinatal genetics for Intermountain Healthcare. "It has to do with helping people get information about their pregnancies. Children with Down syndrome have special needs that need their care coordinated." They often have problems that require medical intervention, such as heart defects, hearing loss and, rarely, leukemia. When the condition is diagnosed during pregnancy, doctors may order additional ultrasounds and fetal echocardiograms.
"Care and support for Down syndrome kids has improved so much," Rose said. "People don't look on Down syndrome necessarily as some sort of huge family burden anymore." Utah doctors acknowledge wider screening could lead to more abortions nationally, but they expect a smaller increase here.
A 1999 study showed that nationally, 90 percent of women terminate their pregnancies after a prenatal diagnosis of Down syndrome. But Utah's rate is much lower: 8.5 percent of fetuses with Down syndrome were aborted from 1995 to 2005, according to the Utah Birth Defect Network. With wider screening, "you're going to allow some families to choose not to have a baby with Down syndrome," said Robert Silver, an OB-GYN who is chief of the division of maternal-fetal medicine at the University of Utah School of Medicine.
"That [rate] will be different in New York or San Francisco" than in Salt Lake City, Silver predicts. Madhuri Shah, medical director of the Utah Women's Clinic - one of three clinics that perform abortions - estimates she sees women seeking to abort fetuses with Down syndrome once "every few months," usually after they are told the fetus also has severe deformities. Utah doctors say they do not encourage abortion, and may not even mention it unless the patient initiates the discussion. They do, however, refer families to Down syndrome support groups, if the parents are interested. "We're not pro-life. We're not pro-choice. We're pro-options that fit the family," said Rose. Karrie Galloway, director of the Planned Parenthood Association of Utah, supports the new screening guidelines, saying parents should have the choice to decide what is best for their families. "That is at the heart of choice," she said. "Not everyone is cut out to be the parent of a challenged child."
"Like any other baby." Most women will be relieved by the screening's results. About 5,000 babies are born each year with Down syndrome, about 80 in Utah. "In Utah, many women do these tests for reassurance their baby's...
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