Disability Doesn’t Make Life Less Full

This isn’t a story I would have gone looking for. Nor is it in any way meant as a moral judgment on the Yorba Linda couple suing their obstetrician for not telling them about a prenatal test that likely would have shown that their daughter, now a year old, would be born with spina bifida.

But that story hit a nerve with Patricia Bayley of Anaheim, who admits to recoiling a bit after reading that the legal terminology for the suit is a so-called “wrongful birth� or “wrongful life� claim.

Bayley recoiled -- and picked up the phone to tell me so -- because 70 years ago in Joliet, Ill., she was born with spina bifida.

“What upset me was the idea that a child with spina bifida should have a wrongful life, like maybe someone shouldn’t have been born just because they have spina bifida,� Bayley says.

To the contrary, Bayley says, she’s enjoyed her life.

Let me underline this: The Yorba Linda couple has said that they aren’t suing because their daughter has a birth defect. Rather, they’ve said through their attorney, they’re suing because the doctor had a legal obligation to conduct the test and inform them of the potential for birth defects. And, they say, her condition has presented a financial burden. Their attorney told a Times reporter he believes the couple would have opted to abort the pregnancy had they known about the birth-defect potential.

I fully support the couple’s right to have that option. And I should tell you that Bayley’s spina bifida -- a defect in which the spine doesn’t close properly during pregnancy -- apparently is less severe than that of the couple’s daughter. The condition can result in various problems; the couple’s daughter is paralyzed from the knees down, while Bayley has always been able to walk.

But Bayley’s life has not been simple. She never grew to reach 5 feet and has a slight hump in her right shoulder due to her spinal curvature. She also has vision problems in her left eye -- another byproduct of the condition -- and has a twisted neck that permits her to turn her head only slightly.

What she wanted to say, however, is that her disability hasn’t diminished her. “I love life,� she says. “I watch birds, I ride trains, I’ve traveled all across the country, I’ve flown to the British Isles, I’ve been to Canada several times, I write poetry, I’ve got four or five unfinished novels, I do needlework, I have a garden, I have a cat and I give away books to children in the neighborhood. I have fun.�

Bayley, who volunteers as a librarian for the Orange County Catholic diocese, knows about spina bifida’s more debilitating potential: Thirty-two years ago, she married Harry “Hap� Bayley, who also is afflicted with the condition but hasn’t been able to walk on his own since childhood.

But even their first meeting attests to what Pat Bayley says has been a life fully lived. The two were introduced by mutual acquaintances at a concert in Whittier. “We compared notes and phone numbers,� Bayley recalls. Two weeks later, Hap wanted to share some records and Pat offered to cook a steak.

I tell Bayley I won’t pass judgment on the Yorba Linda couple. Neither will she, adding that prospective parents should have complete access to information throughout a pregnancy.

Bayley says her only point is to say that her birth defect didn’t stain her life. “I’ve been inconvenienced by it, but life has not been tough. I’ve lived with it all my life, so it’s part of me. I don’t stop to think about it. I do when I’m buying clothes or shoes, because one foot is bigger than the other. Now I wear plain old sneakers.�

I hear Bayley loud and clear, but also sympathize with the Yorba Linda couple. Theirs is not an easy lot, and the rest of us can only hope their daughter’s life approaches the richness and serenity that came to Pat Bayley.

Dana Parsons can be reached at (714) 966-7821 or at dana

[email protected]. An archive of his recent columns is at www.latimes.com/parsons.