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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.
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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
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consulted on our case. After many years, we were finally out of the woods with Max, I
told her. E-MAILED BLOGGED
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. Pogue & friends
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The crowd surged forward to lead the mother toward the conference room. The
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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.
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He turned to me, as if prepared. "What do I call you now?" I asked.
» Born with Hole in Heart
Relief replaced surprise. Then he offered up his popular nickname. » Nurses Uniform
"All right," I accepted. "Then you must call me Laura." » Funny Gifts for Nurses
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Late Lesson in Sensitivity for Doctor - The New York Times 12/8/09 1:09 PM
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