It’s natural to think that my years as a medical geneticist have had a major effect on how I view life. Caring for people with disabilities, witnessing firsthand the countless number of errors that can occur during embryogenesis, errors that lead to unspeakably bad outcomes, has made me more appreciative of how amazing it is when everything works out the way it's supposed to. My experience has caused me to come to value life more than I did when I was a resident. This was first driven home to me soon after Beth and I moved into the house in which we currently live,
It was the first Memorial Day since we'd moved into that new house and the Gilmans, our across-the-street neighbors, invited us over for a barbecue. Since moving in two months before, we and the Gilmans had become fast friends. Our families had a lot in common. Len, a professor of biology at New York University, and I had both chosen careers in academics. His wife, Lynn, and my wife, Beth, were both teachers who had decided to put off going back to work until our kids started elementary school And probably most significant of all, our oldest children, both three year old girls, had been born only weeks apart and, since our move from the Bronx, had become nearly inseparable. Late that afternoon, as we sat in deck chairs sipping beer while waiting for the charcoals in the grill to heat up, I remarked to Len on these astounding coincidences. He stopped me when I got to the part about Dori and Emily being our oldest children. "You know, Bob, Lynn and I had a child before Emily was born."
"Sure." I replied quickly, a little tipsy from the beer." "And you keep him locked up in the attic, right?"
"No," he answered almost matter-of-factly. "Andrew passed away when he was two months old."
Suddenly, I wasn't feeling all that tipsy anymore. "Oh, I'm sorry," I said, as thoughts of sudden infant death syndrome and overwhelming bacterial sepsis, the kinds of conditions that kill healthy two-month-old infants, flashed through my brain. " I had no idea. What happened?"
"We're still not exactly sure," he replied after a few seconds of hesitation. "Andrew was born ten weeks prematurely. Lynn developed hypertension. At first, her obstetricians tried to treat her with medication and bed rest, but the blood pressure wouldn't come down. Finally, they decided it would be best for everybody to deliver the baby by cesarean section. He weighed two pounds, ten ounces at birth."
"A giant," I thought, knowing from experience that in the neonatal intensive care unit, a baby of that size rarely has any serious problems.
Len continued: "At first, he had some trouble breathing, so they put him on a respirator. But he got better pretty quickly and by the time he was a week old, he was off the machine. After that, he just needed a little extra oxygen for a while.
"Those next few weeks were the best for us. Lynn and I spent as much time with Andrew as we could. Lynn would be there all day, and I'd come and join her after work. He was still too small to be able to eat on his own, he couldn't suck yet. But Lynn learned how to use the feeding tube and tried to give all his meals. In the evening, we'd take turns holding him. the time he was a month old, the doctors had weaned him off the extra oxygen; they told us he'd be able to come home as soon as he gained enough weight. But then he developed these episodes where he forgot to breathe."
"Apnea spells," I answered. (Apnea, literally "not breathing," is a cause of morbidity in very premature infants.)
"Right, apnea spells," Len continued. "They treated him with caffeine, but it didn't seem to do any good." (Caffeine, a methylxanthine, stimulates movement of the diaphragm in premature babies, thereby treating periodic breathing, a cause of apnea spells.) "The spells kept getting worse, and then early one morning, we got a call from the hospital that he'd taken a turn for the worst. By the time we got there, he was already gone."
Silently, I took a pull on my beer. I realized from my own experience that the story of the Gilman baby's death was very unusual. Although very premature infants, those born after only 25 or 26 weeks of gestation, often die of complications in neonatal period, 30-weekers, as this baby had been, nearly always survive. I wondered what had gone wrong, whether Andrew's death might have been due to poor medical management. Had the doctors who'd cared for him screwed up? Had they overlooked some subtle symptom or sign, some abnormal lab result that, had it been detected, might have spared this infant's life, thereby preventing the suffering Len and Lynn he had to endure, torment that was clearly visible in the line my friend's face? I knew such errors occurred; since starting my internship. I'd spent enough time around intensive care nurseries to know that oversights and mistakes happen all the time. "It must have been terrible," I finally said. "There can’t be anything worse than losing a child."
"You can't even imagine, Bob," Len said. "It was a nightmare. We wanted that little boy so much! The first few weeks after we buried him, I walked around in a fog. I couldn't think, I couldn't eat, I couldn't sleep. Even now when I think about it..." He stopped there; he just couldn't go on. I could see that his eyes had become moist.
Later that night, after all the hamburgers and hot dogs had been eaten, after we'd walked back across the street to our house and put Dori and her infant sister, Davida, to bed, I asked Beth if she knew about Andrew. "Sure, I know all about him." she replied. "Lynn talks about him all the time. She's never gotten over his death."
"It's such a strange story," I said. "Babies that size nearly always survive. I wonder if someone screwed up."
"If someone screwed up, it was probably one of your old buddies," Beth replied, "Do you know where Andrew was born?
Without waiting for my response, she continued: "University Hospital; he was born in January 1981. He died there two months later."
"My junior residency year," I said, not having to even think about it. "I worked in that NICU that year. Jesus, I might have even taken care of him”.
I sat quietly for a few moments, thinking, I was really disturbed by the story; it didn't take me long to figure out why. In March 1981, although scheduled to work in the pediatric emergency room during the day, I was assigned to take night call in the neonatal intensive care unit at University Hospital. Having already spent four months in that NICU during the course of my residency, I'd come to really detest the place. The unit featured nearly hourly medical crises, interspersed with frequent nerve-racking emergency trips to the hospital's delivery room to attend the birth of a baby believed by the obstetric staff to have the potential to enter this world with some critical illness, endless admissions of these critically ill infants to the NICU, and worst of all, the not-infrequent death of babies, all occurring in a background of never-ending, mind-numbing paperwork and follow-up tasks, known to us not so affectionately as "scut.” Being on call alone at night in that NICU made me queasy, tense, insecure, and hostile.
I remember being particularly angry that night. It was my birthday. Nobody should have to be on call on his or her birthday! And it had been a difficult shift. By 3:00 A.M., I'd had five calls to the delivery room. Although three of them had turned out to be false alarms, with the babies coming out healthy and crying, and requiring no special assistance in transforming themselves from fetuses to newborns, the deliveries of the other two had been the stuff that makes house officers working in the NICU old before their time.
At around 2:00 A.M., I'd single-handedly resuscitated a 27 week preemie who had needed a great deal of help in making the transition to extrauterine life. I'd intubated him in the delivery room (that is, placed a tube through his mouth, past his vocal cords, and down into his trachea) and, with one of the delivery room nurses pumping oxygen into his lungs using an Ambu bag (a rubber bag attached to an oxygen supply that has a mask at one end), I'd inserted a plastic tube into one of the arteries in his umbilical cord and shot in a whole series of medications designed to keep his heart beating. I'd only just gotten that baby stabilized and settled on one of the warming tables in the NICU when I'd been summoned to the delivery room again. This time it was to attend the delivery of a full term infant who'd passed meconium, the baby's first bowel movement, when his mother had been in labor. In the seconds after birth, this infant had sucked the green, viscous meconium deep into his lungs, making them virtually unusable for the exchange of oxygen and carbon dioxide.
These two critically ill newborns managed to hold my attention through the remainder of that night. I hadn't had time to take care of the scut work that had been signed out to me by the day crew, nor had I had a chance to even look at the two month-old with worsening apnea and bradycardia (slowing of the heart rate) who, according to his nurse, wasn't looking quite right. And what with adjusting the ventilator settings so that the new preemie got enough oxygen into his bloodstream and holding repeated telephone discussions with the attending neonatologist who was on call that night about when to start Driscoline (tolazoline hydrochloride), a drug that decreases puImonary resistance, on the newborn with meconium aspiration who'd developed a serious but not unexpected complication called persistence of the fetal circulation, I'd become even wore frazzled and more hostile than usual. In retrospect, I'm ashamed to say that during that night I wasn't thinking of any of my charges as human; rather, they were nothing more to me than inanimate objects that had been placed in the NICU simply to torture me.
So I wasn't exactly in the best of moods when, at nearly 5:00 A.M., the nurse caring for the two-month-old with apnea and bradycardia shouted that her patient's heart had stopped beating. Dropping what I was doing, I rushed over and began working on the infant. While the nurse performed external chest compressions, I intubated him and, using an Ambu bag, began pushing oxygen directly into his lungs; we gave round after round of resuscitation medication through his intravenous line, but we simply never got him back. And when we finally decided to call it and declare him dead at around 6:00 A.M., after we'd worked on him for an entire hour without managing to get his heart to beat on its own even once, the first thought that ran through my mind was "Well, that's one less sign-out I have to do.” After all, this event wasn't exactly exceptional. The child was a preemie, and preemies sometimes don't survive.
'True, this one was bigger and more mature than most who die, but everyone knew these children often didn't make it.
After we'd stopped working on him, I called the attending neonatologist again and told her what had happened. Clearly pissed off at me, she said she'd be in by seven and asked that the nurse call the parents and ask them to get to the hospital as soon as possible. Since the newly born preemie and the baby who had aspirated meconium were now finally stable, I spent the next hour writing admission notes and filling out a death certificate on the two-month-old. When the day arrived to begin their shift at a little after seven, I apologized for having failed to get their scut work done, signed out to them, and left to begin my day assignment in the emergency room. I never saw or spoke with the dead baby's parents. And on that morning, as far as I was concerned, that was perfectly fine with me.
Looking back on it now, focusing on how I felt about all those critically ill infants whose well-being had been placed in my hands and on how I reacted to Andrew Gilman's death, I'm both amazed and ashamed at how little those lives meant to me. The fact is that when I'd been overworked and abused in that and in other intensive care units, death had seemed to be a natural, expected, even welcome part of the job. As a resident, I functioned as a technician working shifts, an automaton using machines and medications to get the patients who were assigned to me through until the next shift appeared to take charge. In those days, I had no patience for the nontechnical roles that physicians were supposed to play, little understanding of just how the death of this baby might affect his parents and loved ones, and nearly no conception of how long the pain might last for these people who, after all, were so much like me and my family.
As the years have passed and the nightmare time that was my residency recedes further into my memory, I’ve developed a better understanding of these aspects of medicine that during my training were unimportant mysteries to me. But my progress hasn’t made me feel all that comfortable. Rather, the realization of how far I’ve come since working in that NICU has humbled me. After all, if I had so little concept of the significance of the lives of my patients back then, what will I think about the way I practice medicine in the future?What will I know then, learned through the experience of more years of caring for children and their families that I can’t even conceive of at the present? Unable to answer any of these questions, all I can do is try my best, understanding that, as judged from the perspective of the future, my best today is almost certain to fall short of the mark.
A few days after our Memorial Day barbecue, I told Len that I’d been the resident on call the night Andrew had died. He didn’t say a word in response, only nodded his head and quickly changed the topic. Nearly a quarter of a century has passed since that day, and neither he nor I have ever mentioned the events surrounding Andrew’s death again. For Len, it must be the pain that prevents him from talking about it. For me, it’s simply the embarrassment I feel whenever I think of the way I acted during that long night on call.
Although the realization that I had been on call the night Andrew Gilman died was an important event in my evolution as a physician, it was only one of many. Probably the most significant event occurred about five years after that Memorial Day barbecue, at the same University Hospital. At that time, at about 36 weeks of gestation, Beth delivered a stillborn baby. Although the pregnancy had gone extremely well, with no complications whatsoever, two days before she delivered, Beth noticed that the baby had just stopped moving.That was all; one moment she was kicking and punching, the next there was nothing. We went to the labor and delivery floor, where a sonogram revealed that for no rhyme or reason, with no plausible explanation that anyone could offer, our baby’s heart had stopped beating; the fetus had simply died in the womb. Beth delivered her two days later, we named her Orly Shira, had a funeral, and tried to go on with our lives.
And we’ve succeeded. But every so often, especially in early spring when the tree we planted in our backyard in her memory comes into full bloom, we take out the envelope bearing the few keepsakes of her existence (a few photos, the hat that was put on her head, her death certificate) and we think about what she might be like today. Unfortunately, we’ll never know.
My experience with families like the Gilmans, as well as the events that have occurred in my own life, have shown me that in practicing medicine (and clinical genetics in particular), providing for the emotional needs of the family both at the time of the initial encounter and then the provision of physical care. This may be the biggest epiphany I’ve experienced during the years I’ve been in practice. By attending to families’ emotional needs, doctors can provide crucial services – services that go above and beyond those that are taught in medical school and in residency training.
