DISABILITIES

HOMEPAGE www.danieljvance.com


By Daniel J. Vance


Although 44-year-old Lene Jaqua of Firestone, Colorado, had a Ph.D. in Nuclear Physics from the University of Arizona, her degree couldn't prepare her for the birth of her son, Ben.

At seventeen weeks I was told during a routine sonogram that Ben had only one heart valve and no walls that separate the upper and lower chambers of his heart,” she said in a telephone interview. “In addition, he had a cleft lip and palate, although at the time they didn't know about the palate. Later, another doctor found two cysts on his brain.”

In time she and her husband learned Ben also had Down syndrome, which is caused by a defective embryo cell division creating an extra No. 21 chromosome. It affects perhaps 350,000 Americans and is the nation's leading cause of mental retardation. The National Down Syndrome Society claims up to 50 percent of children with Down syndrome are born with heart defects similar to those Jaqua described.

At the time, the Jaquas lived in Kalamazoo, Mich., and already had children ages 6, 3, and 1. Doctors in Kalamazoo said that Ben might not live a week, and specialists in Ann Arbor recommended her having an abortion.

Today, Ben is 9 and home-schooled. “And he loves building with blocks, playing with Thomas the Tank Engine, and watching VeggieTales,” Jaqua said. “He has a play kitchen and loves serving food. He loves playing church, adores our priest and imitates him at home.”

Ben reads books of up to 20 words. He is hearing impaired, so he reads by sight. And he does basic addition and subtraction, and knows his colors. Jaqua said Ben is at kindergarten level in her home school, and believes he easily could reach fourth-grade in most disciplines.

Because Ben in the past has aspirated stomach “contents” into his lungs, which can lead to aspiration pneumonia, Jaqua now must feed him through a tube into his jejunum (small intestine).

Jaqua said that Ben is a delight. “[Although having difficulty speaking) he also has the will and drive to be understood,” she said. “Eventually, he's always understood because he doesn't give up. I admire his outgoing spirit.”

A self-described “eggheaded nerd,” Jaqua said she has benefited from her son's life. For one, he has taught her to value each human being irregardless of their intellectual abilities.

For more, see danieljvance.com and www.ndss.org [This column made possible by a grant from Blue Valley Sod, www.bluevalleysod.com]