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Down syndrome debate

Christian parents stand against a cultural tide to abort special-needs babies

By Robert Mimms

Genetic testing has been hailed as life-saving, giving doctors and their patients a preventative head start on breast and colorectal cancers as well as other potential killer diseases that may lie within our DNA ready to strike at some future time.

But in the case of prenatal testing for the extra chromosome that causes Down syndrome, science may have, in effect, triggered a silent holocaust: About 90 percent of women who receive a prenatal diagnosis that their unborn child has Down syndrome choose an abortion, recent studies show.

If that trend continues, the population of people with Down syndrome — currently estimated at 350,000 — could all but disappear within a few generations.

The issue gained increased attention during the 2008 presidential campaign when Republican nominee John McCain chose Sarah Palin as his running mate. Last year the Alaska governor made headlines for her decision to remain true to her pro-life beliefs and give birth to a child with Down syndrome.

Her decision came not long after the 51,000-member American College of Obstetricians and Gynecologists recommended that all pregnant women — including those under the previous test-recommended age of 35 and older — be encouraged to have prenatal screening for Down syndrome. Such screening, ACOG pointed out, would help doctors “best meet the needs of their patients.”

Down syndrome advocates fear the pressure to terminate Down syndrome pregnancies can be overwhelming when parents are presented with the diagnosis and warned of the lifelong health challenges and varying degrees of mental retardation associated with the syndrome.

Add to that the rate of so-called “false positives” resulting from the current screening techniques, estimated as low as 2 percent to as high as 10 percent in various studies. The prenatal testing itself carries a risk of compromising a pregnancy.

“Sadly, many of those babies actually had no abnormalities,” laments Paula Wilburn, the mother of a child with Down syndrome and founder of Fun Coast Down Syndrome Association, a ministry of Praise Assembly of God in Bunnell, Fla., where she and husband Donald serve as senior pastors.

Wilburn and others fought for three years to get Congress to address the issue, and last September finally saw their efforts pay off when the House and Senate passed The Prenatally and Postnatally Diagnosed Conditions Awareness Act — a bill aimed at reducing the number of Down syndrome-related abortions in the United States.

In a nutshell, the act requires a pregnant woman receiving a Down diagnosis — prenatally or up to a year after birth — to be given current information about both the syndrome and referrals to support services and networks dedicated to assisting parents in raising a child with Down syndrome and other disabilities.

Still, doctors remain legally obligated to offer the prenatal testing, along with warning of the risks of having a baby with a genetic disorder. And because there is no treatment to prevent the condition, expectant mothers can be left between a diagnostic rock and a hard place: giving birth to a special-needs child or abortion.

That can pose a moral conundrum for doctors, too. Physicians opposed to abortion on moral and religious grounds can face “wrongful birth” and “failure to diagnose” lawsuits and even threats to their licenses to practice if they do not offer the prenatal tests and subsequent information on the emotional and economic challenges of raising a disabled child — as well as explain the option of elective abortion.

“The [informed consent] law does not allow a defense by the physician of exception … based on moral compass or core beliefs,” says Dr. Marcus McCorcle, an obstetrics and gynecology specialist, as well as volunteer medical director at the Springfield (Mo.) Pregnancy Care Center.

“In my practice, I dutifully discuss the statistical risks of the genetic disorders that are possible to any given pregnancy with the emphasis on the maternal age (i.e., the increased chance for Down syndrome pregnancies for women older than 35) as well as the risks of the diagnostic studies to a normally developing pregnancy,” McCorcle says.

There also are the risks of abortion itself, McCorcle notes.

“These range from death to permanent infertility, uterine infection, hemorrhage and lifelong mental and spiritual stresses of guilt and conviction by the mother.”

Indeed, it soon could become even more difficult for physicians of faith to work with expectant mothers. There are active proposals, McCorcle says, that would require any doctor delivering babies to either provide abortion services or to make referrals to those who will.

Other legislative efforts could seek to ban physicians with a “moral conviction” against abortion from being allowed to enter obstetrics practice, McCorcle warns.

That is all the more reason not to let up in the fight for the rights of the preborn, including those who will have special needs, Wilburn says.

Also the mother of three adult girls, she conceived her now 9-year-old son, Keaton, at age 40. She chose not to have prenatal testing.

“I knew I would not do anything differently if my child had any abnormalities,” Wilburn explains.

While Wilburn admits raising Keaton with Down syndrome has brought health and educational challenges that parents of so-called normal children would not face, today Keaton is healthy and as active as other boys his age, and attends a second-grade general education class at a neighborhood school.

Keaton is already living up to his special mission for the Lord, Wilburn says.

“The challenges we encounter with Keaton are nothing in comparison to the way he enriches our lives,” the proud mother says. “We are better people because of Keaton. I have an avenue to minister to our community that I would never have had had he not been in my life.”

Keaton, too, has “an anointing that adults envy,” Wilburn says. “He loves to praise the Lord and dances with the best of them. He never misses an opportunity to be prayed for, nor to pray for someone else.”

Though she now recalls the “punch in the gut” feeling of first learning she had given birth to a special-needs child, Wilburn credits her faith for helping her soon to learn that “Down syndrome is not a death sentence.”

“Life is an adventure,” she says. “You can choose to cover your eyes until it is all over, or throw your hands in the air and enjoy every moment. I cannot imagine my life without this little man of God in it.”

ROBERT MIMS is a journalist and member of Life Church of Utah, an Assemblies of God congregation in Salt Lake City.

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