A Life Beyond Reason Page 3

  Dr. Atropski, the per diem nurse, the blond nurse, and a third nurse we hadn’t seen much of until then set up a sterile area and adjusted the bed from a sleeping to a delivery arrangement. They positioned Ilene on her back with her hips and knees maximally flexed. At 3:10 a.m. the EFM was removed. Ilene looked wretched and was still complaining about the pain she felt in her lower pelvis. I wondered why the epidural wasn’t relieving it.

  After these preparations, Dr. Atropski, the blond nurse, and the third nurse scattered to the hallway, leaving just Ilene, Joanne, the per diem nurse, and me.

  At 3:15 a.m. the room grew eerily quiet. Then the per diem nurse said, “I’m going to check on something.” And she scurried off too. Now Ilene, Joanne, and I were completely alone. Joanne and I exchanged glances.

  “Are they supposed to leave us alone like this?” I asked her. “Is this typical?”

  “I have no idea,” said Joanne, “but I don’t think it is.”

  In the forty-second hour of labor, Ilene was too worn out to add to the discussion. She was just lying there, breathing labored, facial expression locked in a grimace. These were things that profoundly upset me. I tried to soothe and console her, but my efforts seemed useless. Overall, though, I presumed that what was happening with her body—the pain she was in—was normal for a woman in labor.

  More minutes went by. Joanne and I began to feel like passengers on a ship that has been abandoned by its crew. Then Joanne asked, “Where the hell did everybody go?”

  Assuming that everything would turn out all right, I wasn’t grasping how grave the situation was becoming. I just said, “I don’t know.”

  “I wonder if the nurses and Dr. Atropski are trying to round up the pediatric team,” said Joanne. “Cowboy!” she suddenly ordered, pointing toward the door, “go see what’s happening!”

  Her suggestion made sense. Go find help! As I was exiting I said, “Where should I go?”

  “The nurses’ station!”

  She said this at 3:22 a.m.

  The baby was born unresponsive at 3:44 a.m. A specially dispatched pediatric team had resuscitated the infant, bringing Lazarus back from the dead. A resident had held the tiny body up, a trophy of medical rescue.

  Ilene, Joanne, and I had been thunderstruck. No one had spoken. No one had known what to say. I’d never before seen Joanne at a loss for words. But she had become speechless. Popular culture never mentions births that go badly, so there were no song lyrics or television or movie dialogue to reference about what had just taken place. We had gone off the media grid.

  The newborn was whisked away to the intensive care nursery (ICN) on an upper floor of the hospital. Dr. Latchesik was gone. The birth had occurred less than fifteen minutes earlier, but already she had left. Other babies needed to be delivered. The hospital had rarely experienced such a high volume of births all at one time, so she’d had to race off to the next one, taking our main labor and delivery nurse (the per diem) with her.

  Now it was 4 a.m., and the room was quiet. Dr. Atropski, a second nurse, and a third nurse we’d not seen much were performing the aftercare on Ilene. Joanne wordlessly helped me gather our things. She looked like a person dazed in the wake of a car wreck. As soon as we got the signal that Atropski and the nurses were finished, Joanne broke the silence, saying in a small voice, “We’re done here.” She then wheeled the suitcase containing unused candles and the forgotten birth plan, and I carried a bag with some belongings and held the string of the soccer ball balloon emblazoned “It’s a boy!”

  The recovery room was the opposite of what the labor and delivery suite had been. The luxury accommodation gave way to a dark, cramped cubicle. At this point, Joanne silently hugged us and headed home. Her work shift started on a lower floor in just a few hours.

  Within forty-five minutes, Ilene and I heard a gentle knock. Two male physicians entered, Dr. Mellark and Dr. Kwok. Mellark began with the only good news there was: no meconium had been found below the infant’s vocal cords. And then came the rest. Physicians use a method called Apgar, based on a 1–10 scale, to quickly summarize the health of a newborn, and an infant with a score of 8 or above is considered to be in good shape. Our newborn’s Apgar scores were 2, 3, and 4 in the first ten minutes—abysmal.

  “The infant has lost a lot of blood,” said Dr. Kwok, “and so will need a transfusion, preferably with blood provided by one of the parents.”

  “Can you donate?” asked Dr. Mellark, finishing the other’s thought and directing the question to me.

  “Seizure activity has been noted,” Dr. Kwok added. He asked us to sign a consent form for a lumbar puncture. This puncture, I found out later, would be just the first of three.

  “The newborn’s condition is critical,” Dr. Mellark said. He didn’t mince words. “The chances of survival are fifty-fifty.” The odds shot around like a madly jumping ball on a spinning roulette wheel.

  “You can go up to the ICN,” said Dr. Kwok in a lowered tone intended for me, “but your wife should remain in bed to recuperate.”

  I attempted to sleep but felt agitated, so at a little before 6 a.m. I went up to the ICN. Ilene stayed behind, as Dr. Kwok had instructed. Alone in the elevator I felt lightheaded and weightless, a moment of extravagant sensory drift. Motion, thoughts, and objects became hard to untangle. I should have been plunging downward, but instead I was riding up. The elevator rose without stop, each floor gently dinging. The numbers swirled. The elevator came to a halt.

  A broad corridor appeared, and beyond it was a set of white double doors. I approached, tested the door on the right, and found it locked. Then I saw the sign: Fogelman Children’s Hospital. Visitors first needed to push a button and speak into an intercom. Once it unlocked, no one was on the other side of the door. Around a corner I came upon a bank of sinks beneath a mirror. A placard instructed visitors to scrub vigorously and then to don a gown, mask, and gloves. By the time I had finished preparing myself, a young nurse drifted up. Her scrubs bore a Peanuts theme, mostly images of Charlie Brown and Woodstock.

  “I am Beatrice from the intensive care nursery,” she said. “Let me take you down.” And she started leading the way.

  The corridor was empty and quiet, and her soft shoes made a faintly discernible squeak just loud enough to echo. The walls were a color somewhere between beige and pink, a color no one in heaven would select. A scent of cleaning solutions ghosted the air. Then we came to another set of white doors, and she pushed open the one on the right. Light flooded out, along with a patchwork of imperative but disembodied voices and a cacophony of alarms, buzzes, and bells, all of which sounded against a backdrop of low-grade thrumming. I caught a whiff of rubbing alcohol. Beatrice stood to the side, her back against the door to hold it open as I passed in front of her.

  “Someone will speak with you in a moment,” she said, and then she returned the way we had come.

  Before me appeared the ICN theater, a large, long, rectangular room with a wall of north-facing windows at the far end. It was still pitch black outside. On the room’s right side were an array of low, dark preemie tanks—translucent plastic, barely lit incubation chambers inside of which lay fist-sized existences curled up like sleeping cats. Parked along the left wall was a row of mostly unoccupied Isolettes.

  Everyone was wearing surgical scrubs. No one came up to me; they were too busy. But then someone did stop long enough to point out where our baby’s Isolette was.

  I felt apprehensive. Considering what I’d witnessed two and a half hours earlier in the delivery suite, I expected to find an object as appealing as insect larva. I approached the Isolette like a first responder at a crash site, ready to have my stomach wrenched. Considering the baby’s appalling color, I thought it would be better if he died. It would be better for his sake. It’d be better for our own. Ilene and I could try again for another, better baby. I would have been okay with that.

  Critical-care personnel bustled urgently on the far side of the Isolette. Our baby lay within
, utterly still. He was lying on his back with his knees bent, fists clenched, toes curled, and eyes closed. Everything about the baby’s body was unbelievably small. Above towered an IV pole, from which dangled a bulging piece of futuristic fruit. A line snaked from the bottom seam down several feet to where it entered a motionless leg. A whitish translucent tube—thin as a hummingbird’s beak—had been inserted into one nostril. The baby was breathing with the aid of a ventilator.

  Save for the tiniest of diapers, his flesh was fully exposed. The earlier greenish-gray stillborn color had pinked up somewhat. Above the body, an extremely bright light radiated warmth. Only hours old, I thought sardonically, and already he was under an interrogation lamp. Electrodes covered his body, and a jungle of wires and lines relayed back and forth between the tiny form and several monitors and machines. An apparatus would occasionally sound an alarm, and someone would rush over to see what was happening.

  Was this an infant? And was it ours, this wizened little creature? I took a quick survey. Eyes clamped shut and body not moving. Head was of seemingly typical size and shape for an infant but with a large laceration—a deep red impression on the forehead. The head must have been pressed firmly for a long time against some hard internal impediment. This must have had something to do with the pain Ilene had been feeling in her back during the labor, the pain the epidural couldn’t alleviate. The abrasion was shaped like an ear. Why was it there? It was a mystery. I dubbed it “the mystery of the ear.”

  Overwhelmed, I lowered my head, closed my eyes, and took a deep breath. And then it happened. A sensation rifled through me as if I was experiencing some shamanistic, peyote-induced separate reality. I found myself mentally airborne, lifted up and propelled at breakneck speed through vivid images of distress. I visualized everything from the infant’s perspective, forty-two hours in a matter of seconds. What had been in my mind a single, simultaneous, and coexisting image then broke apart and became a sequenced panorama, consecutive scene upon scene. And then I was spat out on the other side of this ghastly reverie into a new dimension. It was a terrain that was wholly unfamiliar—and a place from which I have never returned.

  This hallucination couldn’t have lasted more than a few seconds. But brief as it had been, my heart was afflicted as never before. I opened my eyes and looked again, but I couldn’t believe what I saw, for the interrogation lamp had become a spotlight. The deep red impression on the forehead, the large laceration shaped like an ear—this injury was gone. And the wires, lines, and catheters connecting to the little body had vanished like visions in a dream, like things that disappear when we awaken. Now I could see clearly: the body was unencumbered, naked and free. It was luminous, and the little face glowed like a full moon. And in that moment I saw him for what he was. I was astonished, for he now appeared to be magically beautiful, the most amazing, radiant being I had ever beheld. In his tiny frame he encompassed the infinite and the eternal. An involuntary reaction—a primordial brain wave—flashed inside.

  “My darling boy,” I heard myself gasp.

  II

  WHEN INTERTWINED, LOVE AND GRIEF BECOME AS ferocious as desire. My son was, in Keats’s words, “full beautiful—a faery’s child.” His face also resembled mine in my own baby photos. It startled me, since he seemed an exact replica. He was like me, he was a piece of me, he was my double, yet he was near death. I intuited what Emily Rapp in The Still Point of the Turning World describes more eloquently than I could. She writes that the “great capacity to love and be happy can be experienced only with this great risk of having happiness taken from you.” My darling boy and I had hardly met, but already he was breathing on a ventilator. His chances were fifty-fifty. And now he and I both were trembling, in Rapp’s phrase, “on the edge of loss.”

  “I want to see him now!” Ilene exclaimed when I returned to the cubicle.

  She was supposed to stay in bed, but now she wanted to go and view for herself what I had seen. But she was too sore to get out of bed. It wouldn’t be for another two hours that the two of us ventured out. She should have used a wheelchair, but neither of us thought to look or ask for one. Hunched over, she needed me to support her as she hobbled to the elevator. When we arrived at the ICN, natural light was streaming in through the windows at the far end. We both approached the Isolette and looked at our new son. And there he was. We agreed that our boy was beautiful, so, so beautiful.

  A senior resident physician approached, Dr. Lewis. I stood back now as Ilene took center stage, asking questions and probing for details. Having a medical background, she knew the terminology and grasped the meaning of the answers.

  Dr. Lewis didn’t know much. When the baby had been brought in over four hours earlier, no one present at the birth had sent word up describing what had happened. A car wreck had been delivered, but no explanation. He was attempting to do his best, and now he and the others in the ICN were trying to figure things out from scratch. He seemed frustrated that no information had been conveyed at the handoff. All he could say was that the baby had been started on phenobarbital. Beyond this, he was speculating wildly. He didn’t know what had gone wrong at the birth, and he even suggested that the baby’s condition might have resulted from herpes. “Herpes?” I asked him. “How is that even possible?”

  We returned to our cubicle. Around noon a hospital staffer came by wanting to know what name to put on the birth certificate. We named him August David, taking the “A” from Arvil (my father’s name) and the “D” from Ilene’s father’s middle name, David.

  On Saturday, our fourth day since arriving at the hospital, friends and relatives began visiting. My brother Jesse and his wife Cristina came by to see the baby and lend support. By Sunday, August had stabilized and come off the ventilator. The main uncertainty changed from whether he would live to what his quality of life would be. By this point, we were not much surprised that he would be severely impaired; we had been surprised that he would live at all. That same day we had to pack up our things because health insurance wouldn’t pay for us to board another night. Our tiny Inner Richmond apartment was a mile and a half away, on Twenty-First Avenue just south of California Street. When Ilene entered, she draped herself over the railing of the empty crib, weeping because there was no baby to put in it.

  On Monday, August opened his eyes, which at the time were—true to the Celtic side of his heritage—unequivocally green. Then, like the waters of a hundred-year flood, the lines, catheters, wires, and tubes over the subsequent days began receding from his body. On Tuesday one of the nurses reluctantly showed us that his second and third toes on his right foot were slightly webbed together. She seemed to think that this would upset us. This was like learning that, in addition to the house being destroyed in a hurricane, one of the sprinkler heads was broken.

  On Wednesday, a repeat EEG failed to capture more seizure activity, but it “did show flattened baseline.” By then Ilene and I had begun to hold and bathe the baby and change his diaper. By turns he was floppy and rigid. On Thursday Ilene spotted on a table next to August’s Isolette a nurse’s index card. On it were scrawled the phrases “serious neurologic dysfunction” and “poor prognosis.”

  The hospital scheduled August for discharge on Monday, March 15, but before they could release him its representatives had to sit down with us. On the preceding Friday, we all assembled in a windowless conference room somewhere in the bowels of the enormous institution. This was the “family consult,” one of a myriad of undertakings that the national accrediting organization—the JCAHO (formerly known as the Joint Commission on Accreditation of Healthcare Organizations, now simply the Joint Commission)—required of Loma Prieta. In situations like ours, the JCAHO compelled the hospital to supply representatives to meet with the family.

  Green as an Oregon forest, I’d had high expectations going in, something along the lines of a graduate seminar. I pictured a systematic debriefing characterized by effective communication. I imagined that reasonable people without any vested inter
est would attend. Hospital personnel would respond forthrightly to our inquiries. All of the facts of the case would be placed on the table. Everything would be out in the open. Rational decision-making would be conducted in an atmosphere of complete transparency and neutrality. The scientific method would be on display.

  As the meeting was getting started, I sensed that something was amiss. The two parties directly involved with the labor and delivery, Dr. Latchesik and Dr. Atropski, did not attend. And no one from the OB-GYN practice with which Ilene had undertaken her prenatal care was there. We wanted desperately to speak with them, but we were told that their busy schedules precluded them from being present.

  Instead we met with five other hospital representatives, four male doctors, all wearing white lab coats, and a lone woman, a social worker. Two of the doctors we somewhat knew: we had seen the senior resident physician, Dr. Lewis, and the neurologist, Dr. Martin, in the ICN. The room seemed inadequately lit. Throughout the meeting everyone talked quietly, as though speaking in an old-fashioned library. Ilene and I sat on one side of a long conference table, and the four physicians sat on the other.

  Beginning the proceedings was Dr. Martin. He had a reserved, understated style, and he spoke slowly and distinctly, emphasizing certain words, pausing between sentences, as though he was used to explaining difficult concepts. After making some initial remarks, he informed us that our infant had suffered a “hypoxic-ischemic brain injury.” The term describing his condition was hypoxic ischemic encephalopathy. This was gibberish to me; he might as well have been rapping in Romanian. In a low voice Ilene translated for me. Hypoxic meant inadequate oxygenation of the blood. Ischemic meant a deficient supply of blood to a body part. Encephalopathy meant a malfunctioning of the brain. In sum, August had experienced a lack of blood and oxygen before or during the birth, and this had caused brain damage.