What It Means to be Human

In recent columns, I discussed the effect children with disabilities have on marriages. One reader emailed, 35-year-old Brad from southern California, to say he had been having a remarkably positive experience. His three-year-old daughter has Down syndrome, which was caused by an embryo cell division that created an extra No. 21 chromosome. It affects 350,000 Americans.

“We spent a week in the hospital after her birth,” said Brad, a corporate strategist, in a telephone interview. “She had a congenital heart defect, jaundice, and a low platelet count. The first few days the doctors suspected Down syndrome, but we were in denial. By the time the test came back though, we had resigned ourselves to the fact it was probably for real.”

Brad and his wife didn’t know much about Down syndrome, but they soon picked up on what Brad described as a “negative bias” in the medical community towards children with Down syndrome. He said parents are told about risks to families and relationships, but not about studies showing lower divorce rates among parents of children with Down syndrome. Parents are told about their children having a 50 percent risk for a heart defect, he said, but not that people with Down syndrome almost never have heart attacks because of the heart defect. Brad claimed “95 percent” of the parents he knew raising children with Down syndrome were having positive “life altering experiences” with their children.

Brad said, “Even though (my daughter) has had five surgeries, she has a wonderfully positive attitude. She has this pure zest for life and is emotionally resilient. She has taught me something deep and personal about what it means to be a human and what the true value is of a human versus the economic value our society ascribes to being human. Rather than her being a doctor or a chief executive officer, she has tremendous value from teaching me (and others) things about life. She has given me a love quite a bit deeper than I thought I understood before. It’s hard to express in words. You begin looking at the world in a different fashion.”

About his marriage, he said, “(Our daughter) has given us a common purpose and a deeper understanding of what love is and a deeper appreciation of the world around us.”