The feeding tube was tiny, a plastic thread almost, relaxed and curled, nearly white with formula moist on its tip. It lay casually, almost snuggling the disposable but not discarded diaper near the edge of the worn rug on the dull linoleum floor. It was as though the tube and diaper understood their complementary roles at the ends of Adam's nourishment. A few feet beyond, the wood stove burned warm, as a defense against the autumn chill. Adam's birth was not hard. His life was. Karen, his mother, left high school and nested for his arrival with found and borrowed furniture, a few clothes, and careful attention to prenatal care. Bob, the dad-to-be, worked at a loading dock and stored firewood for warmth. He joined us in the delivery room, where he and I pushed inwardly while Karen did the real work.
Adam was blue. The neonatologist snatched him away. Pierre-Robin syndrome, he said. Later, I snuck off to look it up: cleft palate, small jaw, tongue that fell to block the airway. Couldn't suck. Couldn't even breathe on his back. So we fed him with a little tube slipped past his gaping palate to his stomach, hoping he wouldn't aspirate. Afraid that he had, we sent him for a chest x-ray. He came back with a fractured femur. We never learned how he got it. No one sued. The parents weren't like that, and I swallowed my anger, afraid.
Adam's bilateral nipples-to-toes cast became a hard reality all too soon. Karen and Bob, clinging together to a life that offered little forgiveness to the meek, carried their boy home, always prone, diapered him amid plaster, and fed him through the tube. They knew the threat of death to their first-born if Karen dared nurse him with his head inclined to eye contact -- a pose taken for granted and cherished by most mothers.
We struggled together through Adam's first year. He fought otitis media, pneumonia, and hospital admissions for poor weight gain: "failure to thrive," as we said. Strange definition of failure, given the odds against him.
The family's social worker thought we should take Adam away from his parents Because they couldn't care for him well enough. But I said no, I don't think so. I thought, the family loves this child. They are uneducated and dirty, but they are gentle, hopeful, and enduring. Leave him there. Adam stayed with his parents.
Then came the fire. It started in the wood stove, and drove the family into the winter. Adam was unhurt, but his parents were stunned.
After his first birthday, Adam went to the university hospital to have his cleft palate repaired. Intimidated by the surgeons, I snuck in and wrote a 3-page chart note telling them Adam's story. I have no idea if anyone read it. But I left proudly as a family doctor. I discovered I knew my patient; I had struggled, along with his parents, to help him live and grow. I knew the value of the surgery, but also knew its place in the larger life of this slowly growing person. I wondered if Adam would be able to comfort himself for the first time by sucking; I wondered if anything could ever replace a year of lost hours of eye contact at his mother's breast.
The family grew. They came to me for care through their second pregnancy. It was complicated by an enormous ovarian cyst that prevented vaginal delivery. Karen's second delivery was of a healthy girl by cesarean section. She was soon bigger than her older brother; he was bright-eyed, eager, and tiny.
I went on with my life, but years later I checked on Adam. He was small but growing, in school and talking. I imagine him now, a small man, not fancy, just well loved, well fed, a healthy son to his parents.
Address all correspondence to Michael K. Magil MD, 50 N Medical Drive-1C26SOM, Salt Lake City, UT 84132. E-mail: mmagill@dfpm.utah.edu
COPYRIGHT 1998 Dowden Health Media, Inc.
COPYRIGHT 2004 Gale Group
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