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Late Lesson in Sensitivity for Doctor - The New York Times

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Late Lesson in Sensitivity for Doctor
By LAURA NOVAK Published: Tuesday, August 12, 2003 SIGN IN TO RECOMMEND TWITTER E-MAIL REPRINTS SHARE

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The doctor possessed a fancy medical pedigree to complement his box-office looks. We met for the first time in a darkened ultrasound room, where he was to rule out the repairable cardiac anomalies that commonly accompany the birth defect already wreaking havoc on our fetus and my health. Fresh from residency, the young cardiologist invited an older one into our cave. They whispered earnestly, their voices further muffled by a blaring television set. The novice cardiologist had turned on the set before scanning my oversized belly. His superior scurried out of the room before the young man blandly broke the bad news.

Our baby, if he made it to term and survived the surgeries to correct his primary malformation, would most certainly die from an unexpected and incurable heart defect that this confident young man had just discovered. I stifled a cry. Instead, I cussed and told him to kill the television set. He pulled out a primer on the infant heart, drew circles with a fancy pen and admonished me as I waddled to the wheelchair we had left outside the door. "Mrs. Novak," he said, "don't forget to lie on your side so that you don't compress the inferior vena cava and the baby gets enough oxygen. Mrs. Novak?" The defect could not be ruled out until birth. The prognosis threw the high-risk obstetricians and pediatric surgeons managing our case into a tizzy. The telephone calls flew. I pushed away the home nurses and curled into a ball wishing I would die before I had to watch my baby do the same. Many years and one sturdy child later, I sat in a rocker in the same neonatal intensive care unit where my son had lived for three months and where I now volunteer. The baby in my arms was so ethereal she reminded me of a fairy. Her limbs were soft and her facial features remarkably petite. The baby was unfettered by machinery. So I assumed that she was going home, healthy and cured. I felt thrilled for her parents, who must have skirted a more serious situation. Just then, a pair of blue scrubs came into view. I looked up to find the once youthful cardiologist staring at me, perplexed. Crow's feet decorated his eyes, and streaks of gray highlighted his bangs. "Mrs. Novak?" he squinted. I showed him my ID badge and described the catharsis of volunteering while Max was in school.

http://www.nytimes.com/2003/08/12/health/policy/12CASE.html

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Late Lesson in Sensitivity for Doctor - The New York Times

12/8/09 1:09 PM

I could hear the bell ringing in his head. I could see our unfinished business percolating in the eyes I once found so cold. A second doctor approached, a geneticist who had also consulted on our case. After many years, we were finally out of the woods with Max, I told her. What a fun reunion, I might have joked, until the nurse informed us that the parents were scrubbing in. More specialists and nurses now crowded the angel in my arms. Their bodies blocked the natural light from the window above my head. I was in a cave once more, and the prognosis was grim. "It's confirmed on the 15th chromosome," the geneticist stated. "Clearly hypotonic," another doctor said while examining the baby girl. "The creases are carved in the palms." "And the heart?" "It's fine," the cardiologist said. "Is the social worker here yet?" "Tell her to remember the tissues." Someone leaned down and whispered to me with the tone that made my stomach lurch. The baby had Prader-Willi syndrome, an incurable genetic condition characterized by eventual uncontrolled eating, obesity, aggression and mental retardation. The innocent dad approached the group, jovially shaking hands. I felt creepy and voyeuristic knowing that his life was about to change irretrievably. Perhaps that is the miserable power an inexperienced doctor feels staring at a fetal echocardiogram, certain that death is staring back. The crowd surged forward to lead the mother toward the conference room. The cardiologist remained behind at the double sink. I tossed my gown into the soiled bin and pumped on the water with the foot pedal. "At least it's not me delivering the bad news this time," he laughed self-consciously. I felt he was rewinding his words, and their delivery, the only way he knew how. We had both come so far in seven years. It was now my choice how we moved forward. "So," I began. He turned to me, as if prepared. "What do I call you now?" I asked. Relief replaced surprise. Then he offered up his popular nickname. "All right," I accepted. "Then you must call me Laura."
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