What's the use of an imperfect child?

September 04, 1996|By Katherine Dowling

LOS ANGELES -- The nights can be long and frustrating for doctors whose shifts fall with regularity in the wee hours. A young woman comes in demanding to know if she is pregnant, then fussing for instant termination when she is found to be. An elderly lady wants a cure for her constipation. An addict arrives, angling for a legal fix.

But every once in a while, like the astronomer whose long nocturnal vigils are rewarded one clear night with the smudge of a new comet on his photography plate, we sometimes encounter the extraordinary. I did one recent night.

I doubt you'd peg the couple as extraordinary if you saw them on the street. She had perhaps once been a beauty. Her brown hair was cropped short and hung limply, and she clearly had put on more weight with each of her pregnancies. His tummy flopped over his belt, and he had a kind smile.

Their child was a young adult based on his birth date, but his brain hadn't really developed much beyond that of a 4-year-old. As he lay on the gurney, occasionally using words only his mother could understand, she calmly told of the recent worsening of his medical problems.

When she left the room, he searched for her with the tenacity of an infant, and like an infant, looked into her eyes with pure joy when she returned. Dad waited outside, ready with a smile and a little joke.

Happy young man

They had been caring for their child with love and patience since early infancy, when his problem first began. I suspect that he was a happy young man, in spite of his bad neurological luck. He'd certainly had good luck in his choice of parents.

To me, these parents showed a caliber of heroism that only a few humans are called on to exhibit in a lifetime. They had put aside their own wants, had accepted a child who would never be capable of doing things even the most ordinary of non-handicapped children could, had given their son enough love and physical help to make his life not just bearable but apparently happy.

In the process, they'd raised a bunch of other children now doing well, and they'd stayed together in a strong and supportive marriage.

Far too often, we assume that a child born with a medical problem is a child whose life is not worth living. We think that parenting such a child is an impossible task. When President Clinton vetoed the bill that would have banned partial-birth abortions, implicit in the stories of the women he gathered around him was that they were doing a noble thing for their children and themselves. Extracting the brain from a living, sensate fetus was felt to be better than allowing that fetus to be born with a body that was less than perfect.

Reasons for abortion

In 1995, James McMahon, a leading Los Angeles abortion doctor (recently deceased), sent a submission to the House Judiciary subcommittee on the Constitution, which was holding hearings on partial-birth abortion. This document gave the reasons partial-birth abortions were done in a survey of more than 1,000 babies.

More than 10 percent were done because of fetal death, but by definition, this is not abortion. Twenty-four were done for cystic hydroma (a benign lymphatic mass, usually treatable in a child of normal intelligence). Nine were done for cleft lip-palate syndrome (a friend of mine, mother of five, and a colleague who is a pulmonary specialist both were born with this problem).

Other reasons included cystic fibrosis (my daughter went through high school with a classmate with cystic fibrosis) and duodenal atresia (surgically correctable, but many children with this problem are moderately mentally retarded). Guess they can't enjoy life, can they?

In fact, most of the partial-birth abortions in that survey were done for problems that were either surgically correctable or would result in some degree of neurological or mental impairment, but would not harm the mother. Or they were done for reasons that were pretty skimpy: depression, chicken pox, diabetes, vomiting.

Parents with courage

I'd like to commend those parents who have the courage to raise handicapped children. Whenever I see a mother or father holding a sickly baby and looking into its eyes with love, each time there's a Down's-syndrome child learning from its sibling how to pile blocks on top of each other, I'm awed by the power of the family to make a ''less than perfect'' life a thing of happiness.

And then I know how lucky I am to be in a profession where every once in a while, I get a glimpse of the best in humanity. Neither treatable conditions nor permanent handicaps mean people can't live useful, happy lives.

Katherine Dowling is a family physician at the University of Southern California School of Medicine. She wrote this commentary for the Los Angeles Times.

Pub Date: 9/04/96

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