- The Washington Times - Tuesday, February 19, 2008

KANSAS CITY, Kan. (AP) - Carrie Arganbright’s main pregnancy concern had been morning sickness, until her doctor told her a blood test showed the fetus had an increased chance of having Down syndrome.

While awaiting the results of a more invasive test of her amniotic fluid, Mrs. Arganbright, 33, and her husband, Chris, 35, were left wondering how they would raise a child with a condition that causes some degree of mental retardation and an increased likelihood of other health problems.

A positive result left them a choice: continue or end the pregnancy. But the Kansas City couple, both active in their Southern Baptist church, already had decided to decorate the nursery.

Fearing more parents are finding themselves facing this decision without enough support and information, Down syndrome advocacy groups are stepping up efforts to talk to medical groups and expectant parents like the Arganbrights.

The advocacy groups had been rattled when the American College of Obstetricians and Gynecologists (ACOG) began recommending a year ago that every pregnant woman, regardless of age, be offered a choice of tests for this common birth defect. Previously, the focus had been on women older than 35 because the chance of having a child with Down syndrome increases with age.

But even before the recommendation, interest in prenatal tests was surging. Joe Leigh Simpson, president of the Maryland-based American College of Medical Genetics, said the number of pregnant women receiving prenatal tests has been increasing over the past five to 10 years.

For the Arganbrights, the extra time to prepare themselves for their daughter’s arrival next month was a blessing.

“I think emotionally it would have just been overwhelming” to learn of the diagnosis at birth, Mrs. Arganbright said. “In your mind, you think your child is going to do whatever, and all of the sudden you have to have different expectations.”

But advocacy groups complain that many doctors are ill-prepared to offer a prenatal Down syndrome diagnosis — an assertion backed up by a 2005 Harvard student’s survey of parents of children with the disorder. Many of the parents reported that doctors failed to provide up-to-date information and referrals to support groups.

Underlying much of the concern is the high termination rates among parents who do learn their fetus has Down syndrome. Although there are no national statistics, termination rates of such fetuses have ranged from 59 percent in a California study to 92 percent in a British study.

“I think you can see rather quickly why our community would be concerned about it when you are talking about eliminating a whole race of people,” said Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City, one of many local advocacy groups across the country.

The Atlanta-based National Down Syndrome Congress, which attempts to stay more neutral on the abortion issue, started a public awareness campaign last fall called “We’re More Alike Than Different” aimed at the general public and medical professionals. The group exhibited last year at two medical conferences, said Sue Joe, a resource specialist for the national advocacy group.

“If we can get it in their heads that people with Down syndrome are ‘More Alike Than Different’ maybe Down syndrome won’t be such a devastating piece of news,” said Mrs. Joe, herself the mother of a child with Down syndrome. “The more we can get a positive image into people’s heads the more likely people are to say, ‘I can do that.’ Certainly 10 years ago, I wouldn’t have said, ‘Sign me up.’ ”

Sens. Sam Brownback, Kansas Republican, and Edward M. Kennedy, Massachusetts Democrat, have introduced a bill that 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.

A subsequent recommendation from ACOG in December said doctors should discuss the option of pregnancy termination when delivering a diagnosis of a genetic glitch. But the group also said it may be helpful to refer patients to geneticists, counselors, clergy and groups like the National Down Syndrome Congress for help in making a decision.

Deborah A. Driscoll, a lead author of the initial recommendation from ACOG, has received hate mail. But she said it would be “unethical or irresponsible” not to tell physicians about the newest tests. One that has attracted the backing of ACOG is a noninvasive screening test available in the first trimester — a time when abortion risks are the smallest.

“I think it’s a very emotional issue for families who have children with Down syndrome,” said Miss Driscoll, also the chairwoman of the department of obstetrics and gynecology at the University of Pennsylvania.

“Their children are great children. They are lovable children. For other families, it’s very difficult for them. Their children can have medical problems. They can have significant learning problems. And if they had to choose, they might not choose to have a child like that for whatever personal reason it is.”

The Arganbrights have heard horror stories from other expectant couples whose doctors automatically assumed they would terminate the pregnancy.

But they had no complaints about their doctor. Two weeks before delivering the diagnosis, he had attended a panel discussion in St. Louis in which a mother of a child with Down syndrome challenged the medical field to do a better job supporting families who continue their pregnancies.

“He definitely could have been a negative influence,” Mrs. Arganbright said. “Because you’re just so emotional. It’s easier to talk about now. The first couple weeks you just cried.”

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