Life worth living

ST. LOUIS—Neighbors were stuffed into the Barker family’s suburban St. Louis home like candied fruits in a thrice-given fruitcake. It was the Barkers’ traditional Christmas open house, part of their effort to preserve the neighborhood “feel,” the cohesion that has helped cushion the world for their daughter, Jennifer.

Indeed, 27-year-old Jennifer was the hot topic of the night: “Where is she?” “Will she be back soon?” She was out with friends, her parents explained, to the obvious disappointment of their neighbors.

When she finally arrived, the bright, happy young woman with a smile for everybody was greeted like a celebrity. But Jennifer—like others with Down Syndrome—hasn’t always been so welcome.

Peggy was warned when she was pregnant with Jennifer that her age—40 at the time—increased the odds that the baby would be born with Down Syndrome. Although it was three years before the landmark Roe vs. Wade decision, Peggy was told by her doctor that Down Syndrome was medical justification for an abortion.

“I told him never to use that word to me again,” says Peggy, a nurse at the time who knew of her increased chance of having a baby with Down Syndrome. “We knew God would equip us.”

When Jennifer was born, before she was a few hours old, the doctor suggested the family find a “home” to put her in. “He talked about the stress having her with us would place on our four boys, and the embarrassment to them she’d cause,” says Peggy. “The pediatrician walked up and down the hall with me, telling me the statistics: that Jennifer would be more likely to have heart problems, leukemia, so on. But we stood our ground, because we knew immediately the Lord had blessed us.”

Life (and death) has changed since then. The Barkers had to wait; today, parents can find out almost immediately whether the child they’re expecting has Down Syndrome. But they rarely see the blessing the Barkers have seen in Jennifer. That’s because mounting medical, economic, and social pressure leads parents to abort 9 out of 10 preborn babies with DS. Though children with DS are apt to lead long, rich, happy lives, the “normal” world has decided those lives aren’t worth living.

The new social-policy scythe is the alpha-fetal protein (AFP) test, which according to some doctors can detect 98 percent of birth defects, including the most common one, Down Syndrome. This test is already routine in most states, for most pregnancies. Its predecessors, amniocentesis and chorionic villis sampling, are invasive and more than slightly dangerous. Both involve gathering cells from the amniotic fluid (amniocentesis) or from the placental tissue (CVS). Both tests trigger miscarriages 1 to 2 percent of the time. AFP carries no such danger, and it’s cheap: Compared to $1,000 for an amniocentesis, the AFP is only $100 per test. But you get what you pay for: AFP tests result in a high number of false positives.

Two new tests promise to make genetic screening even easier, more accurate, and nearly universal. One test is now being tried in the United States. It involves drawing six ounces of the mother’s blood, which contains a few precious red blood cells from the developing baby. Those cells, present at the rate of one in a billion, can now be tagged, separated, and studied.

A second test, now being tried in Great Britain, is a simple urine test, which looks for traces of chemicals left over when the hormone hCG breaks down. In a woman pregnant with a Down Syndrome baby, this hormone is usually present at twice the normal level. Eventually, this test could be more accurate and less expensive than even the fetal red blood cells test. Both will likely be used to screen for defects; a positive result would be followed by the traditional amniocentesis.

Robert Miller, chairman of the division of obstetric anesthesia at St. John’s Mercy Medical Center in St. Louis County, acknowledges that the new technology can be used for evil purposes, but stresses it can be used for good, too. “I’ve delivered the news to parents that the tests show their baby has Down Syndrome,” says Dr. Miller. “The first reaction is always shock. They grieve, because it’s the death of a dream. Everyone wants the perfect child.”

That’s the opening Dr. Miller needs to share with parents the reality that everyone—even babies with Down Syndrome—are created in God’s image.

“The only perfect baby ever born was Christ,” he tells parents. “The rest of us are all imperfect. It may be something visible, like Down Syndrome, or it may not, but we all share in the imperfection. But we’re seeing the wrong side of the tapestry. God sees the whole thing, and he knows it’s beautiful.”

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.

There’s a strange schizophrenia within Down Syndrome support groups and lobbying agencies. Peggy began her area’s support group when she found another mother with a child with DS in a grocery store. Barbara Curtis has looked online for support. Both moms report that abortion is a blind spot for most.

The National Down Syndrome Congress (DSC), for example, is militant about enforcing “non-pejorative, people-first language” when referring to Down Syndrome (it’s “child with Down Syndrome,” not “a Down’s baby” or a “Down Syndrome child”). That’s because what we say shapes how we think, the DSC maintains, and the disabled must be considered persons first.

But the DSC, in the same position paper, says it is “in no way involve[d] [in] the debate over whether a woman should have a legal right to abortion.”

“They almost come to blows over wording, but they don’t seem to care that babies just like ours are being killed,” says Mrs. Curtis. “The groups kept a very low profile during the debates over partial-birth abortion, even though they’re talking about kids like ours.”

Even more troubling are the responses of mothers who say openly that they would have aborted their babies. “In support groups, people will say oh, they love their children and all, but if they’d known the child had Down Syndrome, they’d have had an abortion,” says Mrs. Barker. “When I heard that for the first time, I was horrified.”

Observes Mrs. Curtis, “I think this disposal of babies with DS reflects a very materialistic view of children—as though they were commodities or status symbols, not to be loved and enjoyed for who they are.

“I always wonder too, how people who abort their children because they have DS will handle it if their ‘perfect’ children suddenly—through accident or illness—become less than they wanted. Among my ‘normal’ children there is an IQ spread of probably 50 points—I have one near—genius and one nowhere-near. I love each of them for who they are. There are many more facets to a human being than intelligence.”

But there’s good news, too. The glassy-eyed “mongoloids” of the past have proven to be more products of institutions and neglect, rather than victims of DS itself. Early medical attention, and a loving, home environment, have made a difference in how those with DS—and those who love them—live.

“My boys were ages 11 through 17 when Jennifer was born,” recounts Mrs. Barker, as she gently leafs through photos of her children as they matured. “After a couple of months, they realized that Jennifer wasn’t reaching some of the milestones that infants normally would be reaching. So one night, we sat all four of the boys down, and talked about retardation. If they knew a retarded person, what would they teach them? They came up with a few things, like how to tie shoes. But the most important thing, they agreed, was to teach them how to get to heaven.”

John Barker, sitting beside his wife, says that was a “pivotal conversation.”

“It took away the pity,” he explains. “It gave us all some goals. From that point on, Jennifer wasn’t a stress factor, she wasn’t an embarrassment to them. She was a part of the family.”

Two of their sons are now named as Jennifer’s trustees, for when John and Peggy are gone. All four boys now have families and still live in the St. Louis area, and Jennifer is in high demand as their babysitter (and favorite aunt, Jennifer adds modestly).

“We’re just now seeing the fruits of the first generation of children with DS who were raised at home, who were given the advantages of early intervention,” says Mrs. Curtis. “It’s becoming clear to me that my children with DS have a little something extra—maybe it’s we who have the disability.”

That’s something disabilities activist Joni Eareckson Tada stresses in her ministry.

“When it comes to Down Syndrome, that extra chromosome brings with it so much more,” she told WORLD. “Joy, enthusiasm, friendship, as well as love. I’ve never met a family who didn’t consider their loved one with Down Syndrome as an asset, not just to the household but to the church and community also. They add something that’s lacking elsewhere: unabashed acceptance, simple faith, and no-holds-barred joy. The rest of us can learn from their example.”

It’s seeing the new face of Down Syndrome that will help stop the conscienceless killing, Mrs. Curtis says. The character with DS on the successful television drama Life Goes On (now out of production) helped; “Corky” was portrayed by an actor with DS.

And when people start noticing, they’ll see those “beautiful almond eyes” everywhere: “They’re working at Target, they’re sacking your groceries, they’re smiling at you as they help you at Kinko’s,” she says.

Mrs. Curtis has seen the effectiveness of showing parents that DS isn’t a death sentence—unless they choose to make it so. After their son Jonathan was born with DS, Mrs. Curtis told her doctor to give other parents expecting children with DS her telephone number. Not many called, but one couple who did call met with the Curtis family and decided not to abort their baby. The Curtises have now adopted that child.

“I think everyone involved knows deep down that we all made the right decisions,” she says. “We’re just hoping now that more couples will call us.