An oddly syncopated rhythm pulsed through the Pediatric Intensive Care Unit: beeps of heart monitors counterpointing boops of intravenous infusers and the low, steady hiss of a respirator marking time. The various beats often worked against one another in grating dissonance, but they sometimes came together in near-perfect meter, almost a melody. On occasion a piercing alarm shattered the quirky cadence. This did not faze the nonchalant nurses, who knew it was merely a technical glitch, not a medical crisis. One of the white-clad women, stethoscope dangling around her neck, would amble over to adjust a misplaced electrode on a tiny body and the strange tune would resume again.
It was hardly music to our ears. Our first child, Aidan, was at the center of these electronic impulses, the sounds of his new and delicate life filtered through high-tech medical gadgetry.
He was 10 days old and had stopped breathing. Maureen found him tipping into unconsciousness, blue lips and dusky face. Acting on her instincts as both mother and nurse, she quickly scooped him up and slapped him on the back. The second rap revived him and she wasted no time in getting to the doctor. Once he was there, Aidan turned blue again, which was all that was needed to admit him to the hospital. I arrived at about this time: the nervous new father called out of work with word that his infant son is sick. None of us -- Maureen, myself, doctors, nurses -- knew what was going on except that Aidan would periodically stop breathing. "Apnea" is the medical term to describe this condition, a rather useless word that literally means "not breathing." It denotes a symptom, not a cause, and could not answer the crucial question: Why was this happening?
Apneic infants, often born prematurely with underdeveloped lungs, typically have intermittent respiratory lapses, maybe a few times a week, perhaps only once or twice in the course of months. The interruptions of Aidan's breathing were unusual in that they settled into a steady pattern, setting off the shrieking siren of an electronic monitor. The respiratory therapist would then jostle him and slip the oxygen mask over his nose to revive his stilled chest, and each time he would gradually come around, the deathly bluish tinge on his lips giving way to a livelier pink. It was soon apparent that the problem was more than our Massachusetts small-town hospital could handle. We would have to go to Springfield.
During our birthing class, chatting with five sets of other parents-to-be, Maureen had once raised the unmentionable question: What if something goes wrong? What if something is seriously wrong, what happens then? Our instructor, taken aback by this intrusion of unpleasant thoughts, said that babies with major medical problems are sent down to Springfield, to the big hospital there. Springfield was thus etched into my mind as a limbo of sorts, the place where unfortunates go, the tough cases, perhaps the incurables. And now we were going there, following Aidan into the unknown.
Springfield actually came to us. As the severity of the moment became clear, the pediatrician called an ambulance from the big medical center, and when the emergency technicians entered the room, laden with all sorts of equipment, the atmosphere transformed. A reassuring calm seemed to settle upon everyone present. These were pediatric intensivists. They had seen such things before, been in worse spots. Our dire situation was for them just another fairly routine call.
The local pediatrician put his arm around me, steering me away from the action, saying, "You don't want to see this." But I stayed and watched as they intubated Aidan, putting the curled plastic end of a ventilator hose down his throat to keep him breathing on the long ride. My eyes were fixed on Aidan's small body, surrounded by six or seven adults. The talk was serious, instructions for how to make sure the tube found its way into the lungs and did no damage. It was a tricky procedure that Aidan was resisting with all of his tiny might. I felt my first flush of fatherly pride as he spit out the tube four times: He would not go gently to Springfield! The fifth attempt, however, did the trick; the machine would now ensure that his blood and brain and organs were bathed in vital oxygen.
Maureen and I drove down to Springfield together, alone for the first time since the ordeal had started. It was night now. Aidan initially stopped breathing in midmorning and the whole day had been consumed by the turmoil of the hospital. We didn't attempt to keep up with the flashing red lights, but proceeded at a slower, safer pace, a speed that allowed for reflection. In the pensive darkness, a powerful and uncontrollable grief welled up through my body and gushed out my eyes, tears cascading down my cheeks as I drove. I didn't cry out, didn't have sounds to match the salty streams, but just wept silently. Maureen rested her hand on my arm.
The open ward of the Pediatric Intensive Care Unit -- PICU to those in the know -- was unevenly lit, the darkness broken by a bright fluorescence in the back left corner of the room. Aidan was there, settled in a crib with what seemed like 1,000 machines around him; an array of wires and tubes curled up from his face and arms and legs.
The doctors guessed that seizures were firing through his brain, disrupting the message to his lungs to breathe. It was unclear what this meant, whether it was a transitory aberration or a lifelong condition, whether it was just seizures or something else. They told us to sleep; we would need our rest for what might be a long and trying stay. They were right, of course, but sleep was hard to find that night and rest a fleeting luxury ever since.
- - - - - - - - - - - -
In the few years before Aidan was born, I was just beginning to feel like I had gained some control over my circumstances. I had recently changed jobs and had done so on my own terms, moving to a position and place that I preferred. It was a regular faculty post at an elite New England college, the kind of situation I had dreamed of but never really believed I could secure.
After the move, Maureen and I, married now for 10 years, bought our first house. The weight of the mortgage compressed the possibilities of nonconformity, focusing my attention on steady income and steady prospects. I was, in the flash of a banker's eye, a responsible property owner. To top it off, we got our first dog, a reliable Labrador that came when I whistled and stood ready to bring all scurrilous squirrels to the ground.
This was a new and more together me. For years, from adolescence until about 30, I had been skeptical of my ability to shape my own fate. An old hippie suspicion of orderly arrangements suffused my consciousness: Nobody could really control the flux of existence, could he? I had always scoffed at the hyperorganized types who seemed to have every detail of their world neatly fit into a conventional mold, complete with matching accessories. The apparent coherence seemed to me a thin and fragile shell waiting to be shattered by chance.
For the longest time, because of my aversion to planning, I did not know what to do with my life. As I finished high school, my peers at a suburban New York high school poured their energy into doing the right extracurricular activities, taking the hardest tests and writing the best essays to impress Ivy League admissions officers. I hung out with ne'er-do-well friends and wound up at the modest state school in the next town.
When college came to a close, I had no career strategy, no clear plan for the future. Various jobs had taught me the depressing reality of work, and I knew that I did not want someone else owning my time. This ruled out most employment options. So I backed into graduate school to study Chinese politics and language, subjects that had captured my imagination. The language, in particular, was drawing me into a different culture, a different world, something quite unlike the "real world" I was avoiding in school.
Though completely uninformed, I stumbled into a good university, a place that would give me a chance of getting a teaching job when the time came. And when the time did come, I was lucky again: After applying for 30 positions, I got one interview and, miraculously, was offered a job I had to take, whether I wanted it or not.
That was all before the new job, the new house, the new dog. With these turns, I felt like I had some mastery over my life. My old skepticism was slowly fading away. I was succeeding in ways that I had never imagined possible. My academic career was respectable and rising; my personal finances were sound and growing; my relationship with Maureen was sturdy and loving. I was ready for a child.
When Aidan was born, I had the usual fatherly worries -- here was a whole new world of responsibility -- but I was confident that I would learn quickly and respond well to the new role. I was not afraid. Neither was I giddy. I simply did what had to be done to make Aidan and Maureen comfortable. She was on maternity leave and was breast-feeding, so most of my duties were secondary to her maternal preeminence: I ran off to the store, made sure we ate and tried not to grumble too much about the interruptions of our sleep. Work took me out of the house for large portions of the day, but in the late afternoon and evening I learned how to change diapers and clothe and bathe a tiny body. It all seemed quite manageable and straightforward.
And then Aidan stopped breathing.
- - - - - - - - - - - -
After several hours in the PICU, shifting our eyes from Aidan's fragile body to numbers flashing on the various monitors (his pulse seemed regular and strong) and back again to his small round head and wisps of golden brown hair, we decided that we should try to sleep somehow. Maureen slipped off to find a room at the Ronald McDonald House just outside the gate of the medical center.
The waiting area where I found myself was the usual institutional setting: boxy chairs and sofas, a dilapidated television, half-filled vending machines. White-blue light bathed every corner, leaving no bit of darkness to ease the eyes. I had slept in worse places, so I stretched out on one of the longer couches, my fatigue by this time deep enough that worried thoughts gradually gave way to a quiet emptiness, an undreaming unconsciousness.
What marked this night for me was its end. In waking, I sensed others in the room with me but I did not move, did not let on that I could hear the hushed conversation. It was a young couple, in their 20s, hovering about the pay phone. Coins clinked through the slot and buttons clicked as the woman dialed.
"Mom," I heard her gasp, "Jimmy's ... dead."
Her voice trailed up into a squeaky, muffled cry as the final consonant passed her lips. The youthful father tried to find some comforting words while she continued in halting phrases. Riveted by that single statement, I didn't try to make out the rest of what was said; it rang in my ears, stirring my senses like a sudden shocking alarm. I lay motionless until they hung up and moved on, out of the lounge and toward the PICU. Rolling on my back I let my eyes open and stared at the ceiling. "Jimmy's dead." That's what happens here, or what could happen. How old was he? Two years? Six months? Why did he die? And what would become of Aidan?
I rose and went back to his bed.
Part 2: Our lives are transformed.