Study: Negativity Often Tied to Down Syndrome Diagnoses

Beth Allard calls her son Ben, 5,
Beth Allard calls her son Ben, 5, "the biggest blessing, not only for my husband and I, but for our whole family." (By Jonathan Finer -- The Washington Post)
By Jonathan Finer
Washington Post Staff Writer
Friday, April 29, 2005

BOSTON -- When the technician examining an ultrasound image of her belly abruptly got up and walked out of the room during a prenatal appointment six years ago, Beth Allard told her husband she knew something was wrong.

Minutes later, an obstetrician at the Boston hospital confirmed the first-time mother's fears, explaining that the pictures showed signs of Down syndrome.

Then, Allard recalled, the doctor began to describe what to expect.

"It could just be hanging off of you, drooling," the physician said, contorting her face into a saggy, expressionless imitation of what a child might look like with the constellation of physical and mental symptoms that characterize the syndrome, which occurs in about one in 1,000 newborns.

"We felt hopeless and incredibly scared," Allard, 42, said in an interview. "We didn't know what this was or what to do. They told us we had a few weeks to decide whether to keep the baby."

Such negative depictions of Down syndrome by health professionals who do prenatal screening are common, according to a survey of nearly 3,000 parents of children with the condition, published last month in the American Journal of Obstetrics and Gynecology. A majority reported that the obstetricians who gave them the diagnosis had focused on the hardships ahead and ignored "the positive potential of people with Down syndrome."

"In many cases the doctors were insensitive or just plain rude," said the author, Harvard medical student Brian G. Skotko, whose 24-year-old sister has Down syndrome.

Parents and advocates of people with Down syndrome hailed Skotko's research and hope it will lead doctors to provide more comprehensive information about what life with the condition can be like.

It has also attracted attention from religious conservatives and antiabortion activists and politicians. They believe that pressure from physicians is a major reason why an estimated 80 percent of women who learn they are carrying a fetus with Down syndrome terminate their pregnancies.

At a time of new interest in finding common ground on abortion, the issue has bridged some of the traditional fault lines that mark the debate. Sens. Sam Brownback (R-Kan.) and Edward M. Kennedy (D-Mass.) invited Skotko to Washington to help introduce a bill that would allocate $25 million to provide more complete information about conditions such as Down syndrome, including data on life expectancy and how to reach parents who are raising children with congenital syndromes or diseases.

Questions of abortion have long troubled many who work in the field. It is "the ghost at the banquet," said Allen Crocker, an associate professor at Harvard Medical School who directs the Down syndrome program at Children's Hospital in Boston.

Named for the English physician John Langdon Haydon Down, who first described it in 1866, the syndrome is a genetic condition caused by a single extra chromosome. It can lead to a range of developmental and physical disabilities, including mental retardation and gastrointestinal and heart problems. The frequency of this and other congenital disorders rises sharply in babies born to women older than 35.

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