Cover Story

Life worth living

"Life worth living" Continued...

Issue: "Down Syndrome = Death Sentence?," Jan. 18, 1997

Dr. Miller, 61, wears his hospital scrubs and greets each nurse and assistant just like he was any lowly intern. On this cold morning at St. John's, he makes way for a clearly distraught family-a mom, a gangly preteen girl, and an unshaven and nervous dad-who tell the nurse's desk that mom's in labor, though it's three weeks too soon. Dr. Miller reaches down to the wheelchair in which the mom rests uncomfortably. "It's going to be all right," he says as he touches her arm.

"We employ people with Down Syndrome here at the hospital," Dr. Miller says. "That's something we can show people. We can let them know their babies are going to be the most loving children God creates. They're little love-sops who soak it up and give it back 100 percent. They might have heart problems, they might have hearing problems, but we tell them they'll do better with love. We all do better with love."

But with the knowledge of a fetal abnormality-or even of just an increased likelihood of it-comes questions about what to do. These new tests don't offer a cure, and the only prenatal "treatment" for Down Syndrome is to abort the baby.

Down Syndrome-known medically as Trisomy 21, a tripling of the 21st chromosome, which changes the way a person develops-occurs in 1.3 per 1,000 births. That works out to about 5,000 babies with DS born in the United States each year. The current population of Americans with DS is more than 250,000. Most-up to 80 percent-of the babies born with DS are born to mothers under the age of 35, but the chances of having a baby with DS increase with the age of the mother. At age 40, a woman has a 1-in-100 chance of bearing a baby with DS.

People with DS generally score in the "mild to moderate" range of mental retardation; most can learn to read, hold jobs, and live independently.

Jennifer Barker, for example, holds a job at Hardee's (she does "salad prep," and her dad says she's without mercy when it comes to brown lettuce). She also volunteers at a nursing home, where she'd like to work full-time someday. She went to a private high school and is now working toward getting her GED. Jennifer votes, travels with her parents, and listens to contemporary Christian music. She wants to learn to drive.

Who is to say this is a life not worth living?

Depends on your definition of "worth." There are economic reasons physicians encourage the abortion of babies with DS. The Centers for Disease Control estimates that each person with DS costs "society," in his or her lifetime, $451,000. There's some fear that insurance companies and health maintenance organizations could start requiring prenatal genetic screening.

Already, it's standard practice for obstetricians to offer the screening, whether the woman is over 35 or not. Screening could soon become a legal obligation.

The U.S. Supreme Court has, so far, refused to hear so-called "wrongful birth" suits, but the success of one high-profile case in Winnipeg, Manitoba, has gotten the U.S. medical community's attention. Jane Sanders, a nurse, was told that her blood test results were "normal," but they actually showed she had a 1-in-189 chance of having a DS baby. The baby, a boy born in 1990, did indeed have Down Syndrome. Mrs. Sanders and her husband Robert, a physician, sued their doctor because they say they would have aborted Lee had they known. "They love their child," their lawyer told the Canadian press, "but the child is very expensive and they believe they should be compensated for a situation that could have been prevented."

The suit was settled out of court for an undisclosed sum after their doctor admitted fault.

In this country, courts have traditionally denied damages to parents who sue because of a failed vasectomy that resulted in a surprise pregnancy. But high court decisions such as Roe and its progeny, such as the most recent Planned Parenthood vs. Casey decision, show a willingness to place a mother's convenience over the life of the child. "Wrongful birth" can't be far off.

"I've had people say, 'Well, didn't you get a test?'" says Barbara Curtis, a Marin County, California, mother of 11 who has three babies with DS (two are adopted). "That implies that of course I would have aborted him."

There's even some of that from within the church, Mrs. Barker adds. Once, a friend wanted to pray for Jennifer's healing. "I had to stop her and tell her, 'No, Jennifer isn't sick. God made her this way,'" Peggy recounts.

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