The Open Heart Club

by Gabriel Brownstein

  The medical examination and confinement in the hospital of a patient before he is treated exactly corresponds to the detention of an accused man before trial. The accused has only one idea in his head—namely, is he going to be declared guilty and if so, what will the sentence be? Whichever way the verdict runs, he is bound to suffer a certain punishment from the fact that he has publicly come under suspicion.

  When I wore those Holter monitors, I never let myself consider the obvious question: What were the doctors looking for? I clung to my innocence, in both senses of the word. I conceived of my good health as a kind of personal virtue. I could not believe that I might be sick. Now I know that if in the 1980s the monitor had turned up what the doctors feared—evidence of the kinds of cardiac arrhythmias that killed other tet kids, the kinds of arrhythmias from which I now suffer—there was really no way they could have cured me. The treatments I get now for my arrhythmias have been invented within the past twenty-five years. Did I know anyone else who had to wear a Holter monitor, who had to submit to echocardiograms? Was this all really just to satisfy doctors’ curiosity? My only thought was that I would prove to them that I was normal.

  With girls, I was shy and physically restrained. As a little kid before surgery, I always had to restrain myself from any impulse to action—not to run, not to jump, not to dance or get too excited—and I wonder if this reinforced my tendencies to withdraw, to watch, and to stand apart. The more interested I got in girls, the more I thought the scar on my chest would turn them off. Even into my late twenties, I was embarrassed by the scar.

  The truth is, no one has ever found it repulsive. Every woman I’ve ever slept with has touched and run her finger down my scar. My first college girlfriend wrote a poem about it after we broke up, how despite the Teflon in my heart, she was still stuck on me. Friends have used it metaphorically, when they’re drunk and expansive, telling me what a good guy I am—despite the surgeries and the scars, wow, Gabe, what a big heart.

  The truth is, it’s nothing to hide. Most people tend to be sympathetic. If they care at all, women tend to be impressed. Some even find it attractive. Not too long ago, I saw a young barista in Brooklyn dressed to show off his chest and its scar from childhood heart surgery, like it was a cool tattoo, like he was doing a St. Sebastian look. Me, I always kept the second button of my shirt carefully buttoned.

  I once heard a cardiologist say that an average repaired tetralogy case functions at about 75 percent the level of an average healthy heart, but that’s by nature a fuzzy number, the intersection of two bell curves. As a kid, as a teenager, I wasn’t fast. I wasn’t strong. I couldn’t jump high. My endurance was poor. I was skinny. But all I did every day after school from when I was seven years old to when I was about seventeen was sports. The neighborhood kids and I went to the park, and we played four-on-four games of touch football or soccer. There are narrow strips of dirt on the fields from 107th Street to 109th Street where we beat the ground so regularly that grass could never grow.

  The sweet gum trees dropped their burr balls, the muggers stole our calculator watches, the graffiti artists festooned the walls with outrageous letters and faces and raucous colored art, and we played ultimate Frisbee, every day, three-on-three, four-on-four, five-on-five. My friends were good. I was less good. But I was still part of the little club team we formed, and we competed against and beat some of the best high school teams in the city. I was devoted to it, every day, pushing myself to keep up with kids who were faster and stronger and had better endurance than I did, good athletes with normal hearts. I had fun. Heart surgery was something in the past. That’s how I thought about it.

  Dr. Griffiths was a particularly kind and encouraging soul. In those days her Prince Valiant hair cut was gray, not white, but the East Coast aristocratic drawl was just the same. I never guessed at her eminent status—that she had been there at the founding of the pediatric cardiology program at Columbia, that she had coauthored the major paper on my birth defect. She was a nice older woman with somewhat formal manners, someone else’s grandmother substituting for my own. Dr. Griffiths didn’t want me to think of myself as a sick person. Other doctors at other hospitals sent kids like me for regular cardiac catheter exams, overnight studies in the hospital to see how their hearts were holding up. Dr. Griffiths didn’t want me lying on the operating room table or waking up in recovery. I remember her telling me about one of her patients who had just joined the Marine Corps. She liked me to think there would be no limit to what I could do.

  When I was eighteen, I transitioned out of her care, and my case was taken over by Dr. Marlon Rosenbaum. In the early 1980s, there was no such medical field as adult congenital cardiology—the medical discipline that focuses on people like me. In 1975, in England, Dr. Jane Somerville had hypothesized the field, foreseeing that there would be a need for it, that children like me would survive and would need specialized doctors to treat them in their adulthood. In 1980 at the University of California at Los Angeles, Dr. Joseph Perloff founded the first adult congenital heart disease (ACHD) center in the United States, but the number of ACHD patients was relatively small. Very few pediatric heart patients had survived into adulthood.

  As I write, there are roughly 2.4 million patients in the United States with congenitally defective hearts. A little more than half of them are adults, and this is new—according to the Adult Congenital Heart Association, enough congenital heart patients have survived into adulthood that we now, for the first time ever, outnumber the kids. More and more of us are surviving longer and longer, living into middle age and beyond. I heard a doctor say that in the next couple of decades, we will begin to need geriatric congenital cardiologists. Our numbers will continue to grow. But the field of adult congenital cardiology is barely out of its infancy. It’s only in the past decade that the American College of Cardiology has recognized adult congenital heart disease as a subdiscipline. The first board-certifying exam for adult congenital cardiology was given in 2015. Criteria are just now being established to certify hospitals as being accredited ACHD care centers. To this day, most adult congenital heart disease patients don’t see the appropriate specialist. The Adult Congenital Heart Association—the largest US nonprofit association studying the field—approximates that somewhere in the neighborhood of 90 percent of adults living with moderate to severe heart defects are not being treated by the appropriate, qualified physician.

  I had no idea how lucky I was. Marlon Rosenbaum had never trained to be an adult congenital cardiologist—that training didn’t exist when he was younger—but in the 1990s, in collaboration with Welton Gersony, he was writing one of the early textbooks on congenital heart disease in adults, and he was beginning to train the first generation of residents and fellows in the field. I was as fortunate to fall into his hands as I had been to fall into the hands of Dr. Malm—Dr. Rosenbaum was the only doctor in New York City whose practice focused on people like me—but as a high school senior in 1984, I didn’t see it that way. I didn’t think of myself as sick, and I didn’t like going to doctors.

  I have come to admire Marlon tremendously. I trust him about my heart as much as I’m capable of trusting a human being about anything. I have developed a real affection for the man. I love him in all his brilliance and awkwardness. But at first I didn’t. Dr. Rosenbaum came to adult congenital cardiology from electrophysiology, a highly intellectualized field studying electrical patterns of the heart. He did not coddle me the way Dr. Griffiths had. He wasn’t fatherly or avuncular, and in his early days on the job, he didn’t have a great bedside manner. He was a rumpled, distracted guy, young enough to be my cousin, hair uncombed, cheeks sometimes unshaven. Once, when I was on his examination table, he took his stethoscope from my chest and said, “You know, Gabriel, they’re not that far from building an artificial heart.” I suppose he meant this as comforting and maybe as the sort of thing that might interest an intelligent patient. But I was insulted. He scared the crap out of me. Why the fuck would I ever need
an artificial heart? I was healthy! Didn’t he know that? My life depended on shutting my eyes to the state of my heart. I quote here from William James:

  Happiness, like every other emotional state, has blindness and insensibility to opposing facts given it as its instinctive weapon against disturbance.… To the man actively happy, from whatever cause, evil simply cannot then and there be believed in. He must ignore it; and to the bystander he may then seem perversely to shut his eyes to it and to hush it up.

  Dr. Griffiths had seen me as a success story. For her I was part of the march of progress and a break from the sick kids she saw every day, struggling before or after heart surgery. She allowed me to continue in my happiness, in my blindness, and I loved her for it. Dr. Rosenbaum saw my case more critically. He had to view my life with a longer field of vision. It was in his character to be much more clinical and reserved. What would I be like in the next ten, or twenty, or fifty years, if I lived that long? He was thinking about what might make my heart fall apart, and he was trying to forestall catastrophe.

  The difference in the two doctors’ views was most evident in the way they saw my right ventricle. For pediatric cardiologists after Malm, it was dogma. Surgeons put an outflow patch in the place of the obstructed pulmonary valve, and the kids did well. Everyone believed that tetralogy patients after surgery tolerated the leakage very well and did not need a pulmonary valve. Through the first decades of pediatric cardiology, doctors had been focused on infants, getting them to adulthood, not on adults, getting them to middle age. So mine was a new kind of problem. People with normal hearts don’t typically develop problems with their pulmonary valves. Marlon saw people like me coming into his office—people whose blood was running backward in their hearts—and he wondered if he should take action.

  He was in a tricky position, going against the orthodoxy of the 1980s and 1990s. His situation in some ways wasn’t that different from Malm’s and Griffiths’s in 1960, going ahead with open-heart surgery on tetralogy patients when their lives could easily be extended with a Blalock shunt. There was no data on people like me, no sense of what would happen to an enlarged heart like mine as it aged. There weren’t enough patients yet. There were no protocols to follow with congenital heart patients my age. The dangers of valve replacement surgery on someone like me were not negligible. Each time a patient is subjected to open-heart surgery, the risks of damage to the muscle and the conduction system increase exponentially. Rosenbaum in 1990 was working in a medical discipline that did not yet exist, but he suspected against the consensus of US pediatric cardiologists that I should be given a new valve before my right ventricle collapsed and I went into right-sided heart failure. For him, the risks of inaction likely outweighed the risks of surgery.

  As for me, I had no sense that there was anything remarkable about my heart (except that it had been fixed) and no sense of my doctor’s strange place in the world of US cardiology. I felt fine in my early twenties. It was nearly impossible for me to believe that I was in danger. I had no limits on my activities. I had no symptoms, no palpitations. I drank a little too much alcohol and never went to the gym, and the one time I decided to reform myself and go jogging in the park, I pulled up after a quarter of a mile. I remember my roommate saying, “Gabe, what are you going to do about that?” My answer, which I never said aloud, was to stop exercising.

  Dr. Rosenbaum assigned me a stress test. I rode a bicycle with a breathing mask attached to my face and EKG wires all over my chest. When the technicians asked me why I’d been assigned the test, I told them I really didn’t know. When I asked them, after the test, how I had done, they said, “Okay. No real evidence of heart disease.” I wanted to take their words and wave them in front of Dr. Rosenbaum’s face.

  He looked over the results of the stress test and my latest echocardiogram. He said he wanted to do a cardiac catheter exam. He wanted to admit me to the hospital for the night, run a wire into my heart, test its pressures, and see how that right ventricle was doing.

  I refused to take the test.

  He sighed. He swiveled in his chair. Marlon’s a phlegmatic guy, with a manner so calm he can sometimes seem sleepy. “Okay,” he said. “But next year I might twist your arm a little.”

  I hated him for saying that. I called my friends. I called my family to complain. I didn’t want a doctor who wanted to twist my arm.

  “Maybe you should get a different doctor,” people told me.

  I came back for my next appointment. I lay on the bed in the dark room of the echocardiology lab. The woman who performed the exam, very attractive, businesslike, thin, and of south Asian descent, had me take off my shirt and lie on the table. She squeezed the clear jelly on my chest. She told me to lie close to her, and she sat on the table, and my naked skin was pressed close against her skirt. The room was dark. Her perfume smelled good. We were alone in the dark, but at that moment my eyes and attention were not on her body but on the monitor of her echocardiogram machine, on the pictures of my right ventricle, on the mysterious patterns of leak and blood flow.

  I went back from the echocardiogram lab to Dr. Rosenbaum’s examination room and waited for him. He entered with a file in his hand and a frown on his face. He was the frustrated detective. I was the squirrely criminal. He wanted to get a closer look at my heart. He wanted me to spend a night in the hospital. He wanted to guide a wire into my heart and to measure its pressures. I was twenty-eight years old. I did the only thing I was capable of doing. I ran from him.

  11.

  GALEN’S VISION OF the heart held until the age of discovery. While sailing ships explored the globe and telescopes charted the skies, the knives of anatomists mapped the body. In Italy, Gabriele Fallopio identified the tube that ran between the ovary and uterus. He also named the placenta, which in Latin means “cake.” Bartolomeo Eustachi located the canal in the ear that is named for him. In 1559, Realdo Colombo claimed to discover the clitoris. Colombo’s teacher, Andreas Vesalius, was one of the great translators and editors of Galen’s works and one of Galen’s sharpest critics. Vesalius shook medical knowledge free of classical authority.

  Before Vesalius, dissections and anatomy lessons were always carried out in reference to Greek and Roman works. The body of an executed convict was laid out for the medical students to see, and a sector, a local barber or surgeon, cut into the corpse. An ostentor, often one of the senior medical students, pointed out the body part to be discussed. The lector, the professor himself, sitting in the cathedra above, read from a text, usually Galen, to describe what the students were looking at. Vesalius’s great innovation was autopsia, literally, “see for yourself.” He did the cutting, he did the pointing, and he did the describing—based on what he observed and not on a text. As the great medical historian Roy Porter puts it, “Vesalius interrogated Galen by reference to the human corpse.” What Galileo did for the skies, Vesalius did for the body, moving authority from the ancient text to the living eye.

  He was born in Brussels and educated in France, when medical school was a quasi-religious institution. (Medical students in Paris in the early 1500s had to remain celibate over the course of their studies.) Vesalius did not confine his interest to books; he was interested in bodies. He snuck out of school to examine the bones of the plague dead in the Cemetière des Invalides. In 1536, war chased Vesalius out of Paris and back home to Louvain, but he continued his investigations. One day, walking outside the walls of the city, he came upon the body of a thief “which had been partially burned and roasted over a fire of straw and then bound to a stake.” The skeleton had been picked clean by birds, and so “the bones were entirely bare and held together only by the ligaments.” Then he did something extraordinary:

  Observing the body to be dry and nowhere moist or rotten, I took advantage of this unexpected but welcome opportunity.… I climbed the stake and pulled the femur away from the hipbone. Upon my tugging, the scapulae with the arms and hands also came away.… After I had surreptitiously brought the legs an
d arms home in successive trips—leaving the head and trunk behind—I allowed myself to be shut out of the city in the evening so that I might obtain the thorax, which was held securely by a chain. So great was my desire to possess those bones that in the middle of the night, alone and in the midst of all those corpses, I climbed the stake with considerable effort and did not hesitate to snatch away that which I so desired. When I had pulled down the bones, I carried them some distance away and concealed them until the following day when I was able to fetch them home bit by bit through the outer gate of the city.

  In Padua, Vesalius became a professor, a translator, and an editor of new editions of Galen’s works, and he began to notice some of the master’s errors. “There is no truth,” he wrote in 1539, “in what others say about the five lobes of the liver.” In the 1543 edition of his great work De humani corporis fabrica libri septem (Seven Works on the Structure Human Body, usually called the Fabrica), Vesalius denies the existence of the rete mirabile in the human body, those great vessels at the base of the brain that turn natural spirits to animal spirits. Vesalius stuck with Galen’s idea that blood was manufactured in the liver, but on the subject of blood passing through the septum of the heart, he wrote that he was “greatly driven to wonder at the handiwork of the Almighty by which the blood sweats from the right to the left ventricle through passages which escape the human vision.” In his revised 1555 edition of the Fabrica, Vesalius expresses his doubts more directly: “In considering the structure of the heart… I have brought my words for the most part into agreement with the teachings of Galen, not because I thought that these were on every point in harmony with the truth, but because I still distrust myself. But the septum of the heart is thick, dense, and compact as the rest of the heart. I do not therefore know, in what way even the smallest particle can be transferred [through it].”