A cure worse than the disease


Those of us who are older may remember infrequent visits to state institutions, where we saw some frightening specimens of humanity: people with huge heads or spastic muscles, immobile or too mobile. Among them might have been children and adults with distinctive facial features: almond eyes, large tongues, uniform slack expressions except when smiling. And personal attention could usually coax a smile.

When I was a kid, they were called "Mongoloid," after the vaguely Asian slant of their eyes. Now we refer to the proper term for the condition: Down syndrome. It may be a little more awkward to say but much less insulting, and rightly so. With better therapies and surgeries and preventive screening, most Down syndrome children stand an excellent chance of living productive, fulfilling lives in society. But at the same time, they're much more likely to miss their chance at life altogether.

Women over age 35 are at much higher risk of giving birth to Down syndrome babies, and many women who have put off motherhood until their 30s will opt for invasive procedures like amniocentesis or CVS (placenta tissue sampling). Since these procedures always carry a small risk of miscarriage, there's a demand for safer forms of testing. A new blood test developed by Sequenom, a San Diego-based company, claims to be more accurate than previous tests, and safer than tissue or fluid sampling.

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But safer for whom? Not for the unborn baby, who, if he or she tests positive for Down syndrome, stands a 90 percent chance of never seeing the light of day. Since the disorder is built into the baby's genetic makeup, it can't be cured, only eliminated-by eliminating the baby. Sometimes mothers are counseled to do so, and sometimes fear or ignorance compels them. With widespread use of MaterniT21 (named for Trisomy 21, the genetic defect that causes Down syndrome) that number is likely to go even higher.

Sequenom justifies its product as merely a way to offer prospective parents more information. But all MaterniT21 provides is a naked diagnosis (which may or may not be entirely accurate). What it does not provide is a context for evaluating that diagnosis. The National Down Syndrome Congress has prepared a booklet titled Understanding a Down Syndrome Diagnosis, but so far it's not available at testing facilities. Will the mother hear that the life expectancy of Down syndrome children has risen from 25 to 55? Will she hear about surgeries that have been developed to correct the typical heart, gastrointestinal, and thyroid problems, and medications that can help improve brain functions? Most of all, does she know that the overwhelming majority of parents with Down syndrome children report a positive experience, while the grown children themselves are generally happy and fulfilled? "If everyone was as happy as me," one of them responded to a survey, "that would be great."

A family in our church has a 3-year-old Down syndrome daughter, whose life is further complicated by leukemia. A few weeks ago, her mother told me her daughter was dancing to music in the living room, spinning around and around to the beat and chanting, "I love this." She loves life and possesses the same capacity to enjoy it as any other child. But as more Down syndrome children are eliminated, the resources going toward improving their lives will dry up also.

I can't say much more about these children without sounding patronizing. So I'll leave the last word to the world's most famous mother of a Down syndrome child in a Thanksgiving message she sent CBN News' David Brody:

"To me, when individuals reflect the greater societal acceptance of someone facing challenges, they show the best of humanity-even by offering a simple pat on Trig's head or a knowing smile shot our way. Conversely, when a society works to eliminate the 'weakest links' (as some would callously consider the disabled) or 'the unproductive' (as some would callously consider the very young and the very old), it eliminates the very best of itself. When a society seeks to destroy them, it also destroys any ability or need for sincere compassion, empathy, improvement, and even goodwill. And those are the very best qualities of humanity! Those are the characteristics of a country that understands and embraces true hope! America can be compassionate and strong enough as a nation to be entrusted with those who some see as an "inconvenience," but who are really our greatest blessings. Through Trig, I see firsthand that there is man's standard of perfection, and then there is God's. Man's standard is flawed, temporary, and shallow. God's standard lasts an eternity. At the end of the day, His is what matters."
Janie B. Cheaney
Janie B. Cheaney

Janie lives in Missouri, is a columnist for WORLD, writes novels for young adults, and is the author of the Wordsmith creative writing series. She also reviews books at RedeemedReader.com. Follow Janie on Twitter @jbcheaney.


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