There’s more to Downs syndrome than meets the eye

Andrew Gerbitz is not one of those much-publicized, 28-year-olds living in his parents’ basement, unable to find a job and anguishing over his lot in life.

He has a cool apartment with a patio that looks out over a shimmering pond in Oconomowoc, a meaningful job as a childcare worker at the nearby YMCA at Pabst Farms and an unabashed attachment to his church, family and friends.

He also — like some 4,000 to 6,000 other Americans born each year — has Downs syndrome.

Once shuttered away in institutions, more people like him are living long, largely independent lives. According to a recent survey in the American Journal of Medical Genetics, 99 percent say they are happy.

Tragically and ironically, given all the strides that have been made, many children diagnosed with Downs syndrome in the future may not ever experience the same joy.

A California biotechnology company, Sequenom, recently introduced a test that uses a sample of maternal blood to determine whether unborn children have Downs syndrome.

There is reason to be excited. Newborns with Downs syndrome can need immediate medical attention. Parents who feel unequipped to deal with the challenges can also begin to pursue adoption a little quicker when they know prior to birth.

Among some in the Downs syndrome community, however, there is also an overarching concern. About 90 percent of pregnant women who have received a definitive diagnosis of Downs syndrome using amniocentesis or chorionic villus sampling (CVS) choose to terminate their pregnancies, noted a recent study headed up by a doctor at the University of Connecticut, James Egan.

More testing could result in more women ending their pregnancies.

Brian Skotko, a doctor at Children’s Hospital in Boston and the brother of a woman with Down syndrome, went so far as to write a paper entitled: “With new prenatal testing, will babies with Downs syndrome disappear?”

It’s a virtual certainty that, at a minimum, more women will take a blood test than ever opted for amniocentesis or CVS, both of which can be risky. Already, the estimated number of births of babies with Downs syndrome was 11 percent lower in 2006 than it was in 1989, according to the Egan study.

Skotko says it’s incredibly important that parents receive accurate, balanced information from people who know what Downs syndrome is all about.

Yes, Andrew is happy, said his mom, Bea Gerbitz. He describes himself as often being quite “zippy” in the morning. “But,” she said, “I don’t like the idea of this stereotype that people with Downs syndrome are always happy. He can be upset, like everybody else.” Then again, “he is resilient and quick to forget any wrong that is done to him.”

I know from my own brother-in-law, who had Downs syndrome and died at age 35 a few years ago, that abilities vary greatly from one person to another. Andrew Gerbitz reads and rides a bike, according to his mom, lives by himself with the support of caregivers who stop by frequently.

Sitting in his living room on a recent sunny morning, wearing a cross around his neck, occasionally fiddling with his cell phone, Andrew clearly relished his apartment by the pond. He has a laptop on the desk in the living room and a couple Leinenkugels in the fridge in the kitchen. There’s a TV, and he’s angling for a bigger one. He stopped watching American Idol, he said, though, because the judges were not very nice.

“I have very sensitive feelings,” he said.

On the walls are posters of the Packers and Bucks and Brewers alongside plaques he won in Special Olympics. He’s a good basketball player. But swimming, he says, is his first love.

Swimming, he said, “is what I was born to do.”

That, and live life in a way you wish more people could see.

Mike Nichols is a syndicated columnist who spent 18 years writing about Wisconsin for the Milwaukee Journal Sentinel. He is now a senior fellow at the Wisconsin Policy Research Institute. This column represents only his personal opinion. Contact him at MRNichols@wi.rr.com.

Tags: opinion, commentary, health