The Open Heart Club

by Gabriel Brownstein

  During the years that he trained as a thoracic surgeon, the whole discipline of chest surgery changed. The heart-lung machine was introduced. When I asked him about his initial interest in pediatrics, Malm cut me off. “You must understand the original cardiac surgery, the first open-heart surgery, was for congenital heart disease.” He wasn’t so much interested in kids; he was interested in hearts.

  In the late 1950s, Griffiths, Blumenthal, and Malm were all around thirty years old, just beginning their careers in medicine, and heart surgery was medicine’s furthest frontier. Then Himmelstein got sick, and Malm—who not long before had been floating in the Korean Sea circumcising priapic sailors—was put in charge. The opportunity he dreamed of was suddenly thrust upon him.

  Was he intimidated? I asked.

  “Never occurred to me.”

  What was the hardest thing in learning to repair a child’s heart?

  “Nothing,” he said. “Piece of cake, as they say.”

  As Sylvia Griffiths described it to me, the first cases that were fed to Malm were simple ones: atrial septal defects (holes between the heart’s top two chambers) and ventricular septal defects (holes between the heart’s bottom two chambers). Gradually they built up toward more complicated cases, like Danny Spandau’s tetralogy of Fallot.

  Malm was young, he was strong, he was smart, and he was well trained and observant. One of his students, John Norman, writing about stress that affects heart surgeons, described Malm’s preternatural calm. “Cardiac surgery, for cardiac surgeons, was thought of as an emerging specialty aptly characterized by periods of prolonged boredom interspersed with anticipated, or, worse, unanticipated episodes of sheer terror. Even then, we of the lower echelons had noted and remarked (in his absence) that during such moments, [Malm’s] affect appeared to become somewhat blunted, while his cognitive processes and technical performances simultaneously became more incisive and effective—admirable and enviable capabilities in coping with sudden intraoperative stress.”

  As we discussed his breakthrough surgeries, Malm tried to push attention away from his success. “I was in the top echelon of surgeons at the time, but there were other programs doing almost as well.” This was not true; he was the best. “Everything just fell into place. I learned the anatomy for congenital heart disease. A lot of people didn’t quite understand the anatomy. It wasn’t experimental surgery, it wasn’t pioneering surgery, it was something carefully planned out and carried out. I found my niche somehow. Everything was easy, fun, exciting, and rewarding. It was all the training in the right time in the history of cardiac surgery, so I felt very lucky to be at the right place and the right time. I came into the program in the 1960s, quite confident that I knew as much as anyone in the field. It was just magic.”

  Which were his most exciting moments? I asked.

  “Every morning. Getting to that OR. You betcha. I miss it today.”

  There was no apparent learning curve. He was successful right away. Patient after patient survived, their defects corrected and their little hearts beating. Or as he put it, “No one was allowed to die.”

  Malm’s system of repair for tetralogy of Fallot, the algorithm he published with Sylvia Griffiths in 1963, seems almost obvious in retrospect: (1) close the ventricular septal defect so there’s no leak; (2) open up the obstruction so blood can flow to the lungs; (3) use an outflow patch in place of the pulmonary valve to let the blood flow freely; and (4) leave the heart muscle intact. The first two are plumber’s observations, which holes are to be closed and which opened, but in the early 1960s, closing these holes required extraordinary skill. Even now with 3-D imaging of hearts and echocardiography at the surgical bedside, it can be difficult to identify each hole inside the webby, messy musculature of a deformed heart. Malm had to do it with finger and eye. The third is a risk calculation learned collectively by cardiologists over time: a child could live for decades without a pulmonary valve, with decent function in the right ventricle. The fourth has something to do with Malm’s training with Dorothy Andersen and his study of the pathology of the deformed infant heart, but it also has to do with surgical genius, with the hands of the man with the scalpel. No one else was able to do it as well—to get into the heart and reroute the blood flow, to cut and patch and sew, and to do it all so gingerly, so gracefully, that the muscle itself was left undamaged. Those first forty-one straight successful tetralogy cases were an astonishment.

  Welton Gersony hardly smiled in the first half hour of my interview with him. He was serious in his purpose and careful in his explanations. He was generous with me. There were suitcases half packed on the sofa; he and his wife were heading off to Florida later that day. He had no time to play the jovial host.

  Still, when he described reading Malm’s article in Circulation, he acted it out for me. He turned comedian. His jaw dropped. He looked up from the imaginary journal in his hands and bugged his eyes.

  “I couldn’t believe it.” He grinned.

  9.

  THESE DAYS I deal with my heart in two ways, mostly the same ways that many people cope with mortality: there’s panic, and there’s denial. When my heart is healthy, I worry that it’s sick. When it’s sick, I pretend everything’s fine. I have no idea what’s happening inside my chest, and I’m not alone. The history of human misunderstanding of the heart is thick with worship, mystification, and denial.

  When the Egyptians mummified their dead, they drew out all the organs (the brain was pulled out through the nose so as not to break the head and face) except the heart, which was preserved alone inside the corpse in the sarcophagus. Against the wishes of the popes, crusaders boiled the flesh off their dead but kept the hearts and sent them home along with the skeletons. The heart was the seat of intelligence for Aristotle, of human feeling for Shakespeare, and according to Deuteronomy and Proverbs, the part of the body on which to inscribe the words of God. No one in the West knew how the heart functioned—and if that news ever hit Europe, the Europeans shut their ears in denial. In the thirteenth century in what is now Syria, the great physician Ala al-Din ibn Al Nafis correctly described the pulmonary transit of the blood, but for hundreds of years his discoveries were lost or willfully ignored by the Christian world.

  In Shakespeare’s Henry VI, Part 3, Richard Plantagenet becomes enraged and describes his heart as follows:

  I cannot weep, for all my body’s moisture

  Scarce serves to quench my furnace-burning heart;

  Nor can my tongue unload my heart’s great burden

  For the self-same wind, that I should speak withal

  Is kindling coals that fire all my breast

  And burns me up with flames, that tears would quench.

  As Richard sees it, his heart is a furnace, and his feelings of anger make it burn at high temperatures, causing the hot blood to rush up to his head and evaporate all the water there, so that no tears can come from his eyes. The fire sucks the wind down his throat, too, so he cannot speak. In Stratford-on-Avon in 1591, this was not just high-flown poetry; it was up-to-date physiology. Richard’s heart works the way the leading medical men of the time said it would.

  For Shakespeare and his contemporaries, knowledge about the heart was drawn from a combination of Christianity and classical learning, from the Bible and from the writings of Galen of Pergamon, the great Roman physician, who in the Renaissance came to dominate European anatomical thought. Galen offered a holistic understanding of the body, a comprehensible system that replaced scattered views of diseases as caused by imps, curses, witches, and sins.

  Galen began his career as a gladiator’s doctor and rose to become physician to the emperor Marcus Aurelius. He liked to demonstrate his superiority to other doctors through competitive vivisections. Once he sliced open a live ape and eviscerated it, challenging other doctors to put the organs back in their proper places. When they could not, Galen reassembled the animal himself. He showed off his understanding of the nervous system by taking a squealing pig and cutting
the nerves of its throat one by one, until finally he severed the laryngeal nerve—cutting the one nerve that would make the pig mute.

  According to Galen, the key to good health was balance. Bodies should never get too hot or too cold, too moist or too dry. The body was governed by four humors—phlegm, which came from the lungs; choler, which came from the gall bladder; black bile or melancholy, which came from the spleen; and blood, which came from the liver—and these humors had to stay in equilibrium. Fever and inflammation came from a plethora, or excess, of blood, and so most diseases and infections could be cured by bloodletting.

  Because Roman physicians did not cut into human bodies, Galen based his studies on dissections of animals, and this led to some crucial errors in his anatomy. Galen believed, for instance, that the human liver had five lobes, like a dog’s, and that these five lobes gripped the stomach. He saw the mass of arteries at the base of the skulls of cattle and believed these existed in human beings. He called them the rete mirabile.

  According to Galen, digested food traveled from the stomach to the liver in a substance called chyle. The liver turned the chyle into natural spirits, which nourished the body. Blood moved like the tides, back and forth, the organs gathering natural spirits toward them as was necessary. Some of the blood went to the right ventricle of the heart, and some of it went to the lungs. According to Galen, the septum of the heart had tiny, invisible pores within its trabeculated mass of muscle. The blood ran through these pores into the left ventricle, where it mixed with the air from the lungs. Air contained pneuma, the life force. Through a process known as concoction, the natural spirits in the blood mixed with the pneuma from the air. It was heated in the furnace of the heart, and when the heart expanded, the concocted blood shot upward toward the brain. In the rete mirabile, the natural spirits and pneuma were converted into animal spirits, which ran from the brain down through the nerves, enlivening the body.

  This was what Shakespeare believed, and Leonardo Da Vinci, too. Leonardo, as observant a man as ever lived, drew a five-lobed human liver like a dog’s and a heart with tiny passages in the septum, following Galen’s descriptions over what he might otherwise have independently perceived with his own hand and eye. Galen’s theories were enforced not just through culture but by laws and violence. A doctor in England or France could lose his license for contradicting Galen. In 1553, Michael Servetus published his claim that there were no pores in the center of the heart and that blood and air met and mingled in the lungs. For this, he was declared a heretic and had to flee the Catholic Inquisition in France. He went to Geneva, where the Protestants hated him too. John Calvin ordered Servetus burned at the stake, along with every copy of his book. But even as Servetus was burning to death, three hundred miles to the east in Padua, researchers were beginning to agree that Galen’s description of the heart was inaccurate.

  My struggle is everyone’s struggle: it’s so hard to know your own heart.

  10.

  IN MY LAST visit with Sylvia Griffiths, she tried to indicate something that might be of concern—that my heart might not have been completely repaired in surgery. She put an X-ray of my teenaged chest on the light panel in her office and described the enlargement of my heart.

  “Is that a bad thing?” my mother asked.

  “From a poetic point of view, no,” said Dr. Griffiths.

  An X-ray is an imprecise tool. It offers only a shadow, an outline. It indicates the heart’s enlargement, but it doesn’t say which part is getting bigger. An echocardiogram, too, is imperfect. Especially in the 1980s, when echocardiography was young, it was difficult to say year to year exactly how or whether my heart continued to get bigger. I graduated from Dr. Griffiths’s pediatric practice with an unspoken, unexamined conviction that nothing was wrong with me. It was a conviction I had cultivated all my life.

  I remember one time when I was little, my friends and I were playing pirates, and we tried to imagine what we would have been like if we had really been born in the time of the pirates. I said, “Well, I guess I’d be dead,” and that stopped our game for a minute. But then we got right back to it, crossing swords and hopping across furniture and waving the pretend Jolly Roger.

  Walking to school with some other boys, I speculated cheerfully that by the time I was fifty, I’d probably be dead—a kind of lunatic, childish boasting. Being fifty seemed as unreal as being dead. A passerby stopped me and said, “Hey, kid, don’t talk that way.” I was brought up short, and it was embarrassing. Mostly, I tried not to think about my heart and surgery. I was a skinny kid, no great athlete, but in elementary school I could participate—never picked first for a team but never left out. Occasionally, my condition was acknowledged, but this always surprised me. One time at summer camp, the other kids were going to throw me into the lake, but then another camper said, “Careful, careful—he had heart surgery!” It was a bummer. All the cool kids in my cabin were getting thrown in the lake.

  A friend of my parents, Zale Bernstein, a big, bearded hippy, sat on the couch in our living room and said, “So he’s fine? He just goes on with his life? Jesus—a medical miracle!” I was startled. I didn’t think of myself that way—I didn’t want to know what those words meant.

  Sickness is, historically, a shameful thing. Susan Sontag writes persuasively about the way the healthy tend to blame the sick for their illnesses and also how the sick tend to blame themselves. Again, she quotes Karl Menninger: “Illness is in part what the world has done to the victim, but in a larger part it is what the victim has done with his world, and with himself.” For Menninger, illness is the result of a diseased psyche, a willed action on the part of the sick person.

  As a kid, as a teenager, as a young adult, I was determined never to be the victim. I had learned from an early age to disguise and deny my symptoms, to act healthy even when unwell. Menninger’s belief, as Sontag demonstrates, has a long medical, literary, and philosophical history. She quotes Arthur Schopenhauer: “The will exhibits itself as an organized body… and the presence of disease signifies that the will itself is sick.” Patients frequently absorb this idea and come to see their diseases as expressions of the failure of their personalities. Sontag quotes Franz Kafka: “Secretly I don’t believe this illness to be tuberculosis, at least not primarily tuberculosis, but rather a sign of my general bankruptcy.” My will was all about overcompensation and a desire to be strong.

  If, in my waking hours, I did my best not to think about my heart, in the night it came to me, but not in specific worries about ventricles or valves. I imagined death, absence, nothingness. I remember crawling out of bed, unable to sleep, and going to my parents’ room and trying to explain my fears. My mother held me close. Her atheism is real. She was never going to offer me things she did not believe in. We come from nothing, she said; we go to nothing.

  I remember seventh-grade biology and the diagrams of the zygote splitting in the womb, a map of oblivion at the cellular level. I sat there in my little plastic molded chair. I gripped the attached plywood laminate desk. The floor opened beneath the chair legs.

  “Oh, God, oh, God,” I’d whisper.

  Terry Pratchett says pleading with God for help makes as much sense as trying to argue with a thunderstorm. I don’t disagree, but prayer is something I do, something I did as a kid every time I thought of oblivion, and something I still do as an adult every time I get rolled into an operating room on a gurney. I pray when I’m frightened the same way I laugh when I’m amused. Intellectually, I’m agnostic and irreligious. God as bearded, law-giving father seems no more or less likely to exist than God as elephant-headed boy who beats a tambourine. Still, I pray. I distrust people who say they never pray. I distrust them the same way I distrust people who say they never masturbate. If they’re telling the truth, the more reason to pity them—they’ve never learned to touch themselves in a place that feels so comforting.

  Every year, I went to the hospital, and walked in my underpants into the cold, white-tiled X-ray room, and
pressed my chest to an icy pane of glass, left side, right side, front, and back. The technicians in their goggles and lead smocks focused the giant gun, told me to stand still, then left the room, and the light flashed. Later, as the technology developed, I got echocardiograms. I lay shirtless in the dark room on the table, my chest covered with stickers and electrical leads. A single technician—usually a resident, or an intern, or a fellow in pediatric cardiology, more often than not a young woman—applied clear jelly to a transducer wand and rubbed that wand and jelly across my chest. I was a small, virginal fifteen-year-old boy, and the pretty young doctor sat close to me on the medical bed, her hip against my naked side and her hair hanging down. She’d say, “Closer,” and nudge me. She’d lean across me, and she’d run the shockingly cold, slimy transducer wand across my chest. On a video screen behind her appeared the sonogram image of my beating heart, of each chamber and of each valve, these images appearing in gray scale in a conical field like a radar screen, with the blood flow plumes illustrated in red and blue, and I would pretend not to be afraid or aroused. I would pretend everything was just normal.

  When I was a teenager, when I was in my twenties, I wore what’s called a Holter monitor for one twenty-four-hour period annually. In those days the device was about the size of an old Sony Walkman, attached to the hip with a harness and to the chest with stickers and electrical leads, recording each heartbeat over the course of a day. It was so embarrassing to wear that to high school. I wore a big plaid shirt and kept it untucked. I kept my coat on. I kept my distance from everyone in the lunchroom and the subway. I went jogging with it, just to prove to my doctors that all was well. I never had much endurance. It was hard for me to run a mile, but I would push myself in those jogs with the Holter monitor, and at the end of the little jog, I would sprint—determined to prove to my doctors that I was strong. All those tests felt like interrogations, like my doctors were trying to ferret something out of me. The Hungarian writer Frigyes Karinthy, in his 1939 memoir about brain cancer, Journey Around My Skull, writes,