When the Worst Happens-Birth Defects and Their Sequelae

In a previous blog, dealing with fears of pregnancy and childbirth, I talked about the fear of producing a monstrous infant, one with birth defects, essentially. In my book "The Monster Within: The Hidden Side of Motherhood" I devote a couple of chapters to the responses of both parents and children to these unfortunate, sometimes tragic, occurrences. Last Sunday and Monday's New York Times, once again, provided two contemporary instances of parental responses to serious birth defects. These two distressing stories are very different and illustrate quite dramatically the vast differences that can characterize parental coping.

The first story appeared in the form of a book review by Roger Rosenblatt of Ian Brown's autobiographical report "The Boy In The Moon/A father's Journey to Understand His Extraordinary Son." This is an inspiring, albeit very painful story. Walker Brown was born with a rare and little understood genetic defect (cardiofaciocutaneous syndrome) which left him seriously retarded, unable to walk or talk, eat solid food, or become toilet trained, although he did gradually put on weight and grow. He had two very concerned parents and a normal older sister. Although he could have been institutionalized early on, an action that no-one would have criticized, his family elected to keep him at home and try their best to help him and love him. His parents are reported to have not had two uninterrupted nights of sleep in a row for the first eight years of his life. It was very important to both of them, despite enormous strain, to give him what love and developmental help they could, before placing him in a good nearby group home, at the age of twelve. Were they ambivalent about him? They must have been, and perhaps at each other as they struggled with the impulse to give up. And surely his older sister was very ambivalent. But they were not cruel or neglectful in any way. Not many families could have done what they did.

The second story is the direct opposite of the first one. Marchella Pierce died at the age of four, last September. At the time of her death, she weighed 18 pounds, about half of what was normal for her age. She was born prematurely, with underdeveloped lungs, and was in and out of the hospital many times. When she was home, if it can be called that, she was at the mercy of a dysfunctional family rife with violence and drug use. Her mother frequently drugged her and tied her to a bed, to control her, and the child protective services that were supposed to be involved did nothing to protect her in any way. It is hard in this case to see where the ambivalence was, since ambivalence implies both love and hate and there was no sign of any loving or tender care for this child at all. The adults in this situation were themselves so impoverished and troubled that they were incapable of concern for this damaged child.

These two stories represent the extremes in parental reactions to damaged children-love and care, surviving despite hopeless damage, versus neglect leading to death in a child who could have survived and grown despite her birth defects. Both situations are tragic, the second one particularly so because of the failure of intervention of public services whose supposed function is the rescue of endangered children.