The story he was telling was not to be believed. Malm cast himself as the hero, but wasn’t that just what a devil would do: appear so supercompetent, urbane, and helpful when what he really wanted was the blood of her child? My parents were frightened, and in their fear, victims of an obscure, atavistic guilt.
My father, the MD, believed it was a curse. One night before the diagnosis, I had been crying in my crib, and he hadn’t come to get me—that was why it had happened, he decided. He didn’t get out of bed to respond to the crying baby. So the finger of God had come and punched a hole in his son’s heart. My grandma, Rose, my mother’s mother, rode the subway from Queens to visit the baby. She lifted me from my crib and said to my mom, “The baby is blue.”
My mother snatched me from my grandma. “No, he’s not,” my mother said, blue baby in hand.
The good news was that Malm could fix my heart. The less good news was that the surgery could not take place until I was five years old and big enough to be attached to a heart-lung machine. In the interim, my doctors could do nothing. As my dad remembers it, he was told that the doctors would monitor the pressures in the chambers of my heart and hope that things kept working until 1971. For all that time, my life would hang in the balance of those pressures.
As I began to crawl, to toddle, and to walk, things became more obvious. The more I exerted myself, the more often my lips and fingertips turned blue. I got tired. I rested in that same squat that Danny Spandau had, relieving some of the pressure on my heart and lungs. (It’s a squat I can still do. I can do it as flexibly as anyone in any yoga class.) When I was two, I had my first cardiac catheter exam.
For the exam I was sedated and laid out on an operating room table. An incision was made in my groin—the first time a scalpel ever cut into my flesh—and the doctors loaded a thin guide wire into my femoral artery. Then the catheter tube followed the wire and traveled all the way up my little torso, through the abdominal aorta, over the aortic arch, and into the chambers of my heart. With the catheter, doctors measured the heart chambers’ pressures in millimeters of mercury. They squirted dye through the catheter, and with X-rays and fluoroscopes, they photographed the blood flow through the deformed chambers. They saw the hole in the wall between my ventricles, the ventricular septal defect, and they measured its size. They watched how the oxygenated and deoxygenated blood mingled in my heart, and they measured the function of my stenotic pulmonary valve—the point at which in a normal heart blood would flow from the right ventricle to the lungs. They looked at my aorta, how it hovered right above the hole in the middle of my heart. A mixture of arterial and venous blood flowed out into the body. The doctors tried to quantify all this. How much oxygen was in my blood? How compromised was my cardiopulmonary system?
If necessary, Malm and his team would sew a shunt into my great arteries and see if that would increase my blood oxygen levels—the same sort of shunt sewn into Danny’s great arteries when he was two years old, the sort of shunts developed by Helen Taussig and Vivien Thomas and Alfred Blalock at Johns Hopkins in the 1940s. But I was fortunate. My tetralogy was, as the doctors put it, “well balanced.” The stenosis wasn’t terrible. Enough blood was going to my lungs. It looked like I would live until I was five. For now, the doctors were not going to intervene. Three uncertain years spanned out before my parents. And after the surgery? No one knew. The number of surgically corrected hearts was tiny. By 1970, the oldest repaired tet kids had lived ten years past their corrective surgeries. So far, things looked good. They were doing well.
My parents were of a generation raised not to talk about their kids’ mysterious diseases. They lived those five years between diagnosis and surgery stoically. From 1966 to 1971, they mentioned the problem to no one. My father, the psychiatrist, was concerned about my emotional development. He didn’t want me to be singled out, ever. He didn’t want anyone to fuss over me or worry. He didn’t want me to think of myself as sick.
My grandma came in from Queens every Monday. She knew my favorite foods, my favorite games, and my friends. She knew which of my friends liked chicken soup and which didn’t like lima beans. She must have known—my blue lips, my blue fingers, my energy and stamina decreasing year after year—but some strange unspoken pact grew between her and my mother. They didn’t talk about my illness; they just pretended it wasn’t there. My parents didn’t even tell my preschool teachers about my heart.
My mother is a warm, social woman, a champion conversationalist. She makes friends everywhere she goes and keeps them forever. While I played in the sandbox, she sat on a park bench. The other mothers on those park benches became her lifelong friends. They had gone to college together, some of them, and their husbands scored each other dope. In the late 1960s, they threw each other dinner parties. They traded recipes and manuscripts. They protested the war. To this day, my mom lunches with those same women who sat on those park benches. But all through the late 1960s, through that period of intense, diaper-changing intimacy, she never mentioned my crisis to her friends, that her baby needed heart surgery.
I said to her once, “That must have driven you crazy.”
“I think it did,” my mother said.
I laughed.
She grew serious. “I think it drove me crazy,” she insisted. “I think it was the craziest thing in my whole life.”
My condition wasn’t subtle.
“I remember your blue lips,” my best friend’s mother said to me years later—and how could she not? There I was in her apartment, playing with her children after school, every day.
In Illness as Metaphor, Susan Sontag discusses the unmentionable nature of incurable disease, or as she puts it, “a disease not understood.” Sontag writes, “The very names of such diseases are felt to have magic power.” Even in medical circles, the dread words were taboo. She quotes the eminent psychiatrist Karl Menninger, from his 1963 book The Vital Impulse: “The very word ‘cancer’ is said to kill some patients who would not have succumbed (so quickly) to the malignancy from which they suffer.” My father’s colleagues at the William Alanson White Institute of Psychiatry, Psychoanalysis, and Psychology would have likely agreed with Menninger that the best thing to do with a condition like mine—a bizarre, unheard-of condition—was never to say a word about it. In Menninger’s formulation, to say its name would be to make me sicker, the syllables themselves taking on esoteric power. Furthermore, people might not want their children to play with me if they knew I was dying. Sontag writes, “Contact with someone afflicted with a disease regarded as a mysterious malevolency inevitably feels like trespass; worse, like the violation of a taboo.” Secrecy was the course of wisdom and propriety, best for my health and social development.
The Orthodox Jews in my grandparents’ synagogue in Queens would have agreed. In Judaism there is a concept called lashon hora: a Jew shall not speak ill of another Jew. You cannot gossip idly about your own child, about the evil things that have befallen him. For my grandparents it would have been sinful to tell anyone that their little grandson had a mysterious heart condition. All the social forces around my parents, all authorities, familial and professional, rabbinical and secular, agreed: they had to hide my heart condition like Anne Frank in the attics of their minds. My father confessed it one time, in confidence, to his buddy Leo.
“Oh, Gabriel?” Leo brushed him off. “He’ll be fine.”
As in Lorrie Moore’s story “People Like That Are the Only People Here,” about a child with a dread illness, my parents were plunged into a linguistic vacuum: “What words can be uttered? You turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along, until, if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room—the best boundaries of you are the boundaries of it. Are there windows? Sometimes, aren’t there windows?”
I certainly don’t remember thinking of myself as ill or crippled.
I knew, but I didn’t acknowledge. I was limited, but I didn’t ever believe I was sick. I developed strategies to hide my weakness, to live with it, and to cope with it. I never tried to climb the monkey bars in the playground. I never ran races. When they were playing tag, I sat on my tricycle, playing games of my own. I was never stigmatized. I was happy. I had great friends.
“You got slick,” said my dad. I learned to pretend to be healthy.
Outside school, I spent a lot of time on his shoulders. I can still imagine it, my hands on his forehead, his head as big as my whole torso. I was a spoiled, doted-on child. I don’t remember feeling much self-pity, though my dad remembers that I turned on him once, when he asked me to close the refrigerator door. “I have a whisper in my heart,” I said. When my father tells that story, he grabs his own chest.
When he tells the story of the heart surgery, he always mentions that it came during the Attica prison riots. I picture my dad, a big, sleepless, bearded guy in a sweaty Oxford shirt, standing outside the hospital in September, across from the Audubon Ballroom, where Malcolm X had been assassinated the year before I was born. His whole world was turning upside down.
Mine was only disrupted slightly. Heart surgery when it came didn’t feel like a relief or a cure. It felt like an intrusion. I was Gaby Baby. I was so adorable. People were always nice to me. Then suddenly, they were sticking needles in me and knives, and no one cared if I was comfortable, and I was not allowed to play or get out of bed or go home for eleven days.
5.
I REMEMBER MALM’S OFFICE as a dark place, and I only remember visiting there once, right before surgery. I don’t remember his face, probably because I wasn’t looking at him. Probably I was hiding in my mother’s lap.
They didn’t describe it to me as heart surgery. They said it was an operation to make me run faster. After the meeting, I left Dr. Malm’s office in slow motion, with big strides and elbows pumping, imagining my future speed. After the operation, I’d move like Batman, like the Flash.
My parents tell me I spent the night before surgery in the hospital chattering on the phone with my friends. I imagine my little skinny self with my 1970s poof of dark hair, buck-toothed and smiling on the hospital bed, big phone pressed against my ear. The next morning I was wheeled into the operating room. The gas mask was put over my face, a triangular mask, attached to an accordion-stretch plastic hose of the same pale transparent blue.
I woke up screaming, outraged to find myself immobilized and full of needles and tubes and wires. The post-op room was busy with nurses in white uniforms, all at work with tools and trays. One hissed at me, “Will you be quiet?” In my mind she is blond and pretty enough to be on television (maybe I confuse her with a television nurse), and she says to me, “Look at that little baby,” pointing to one in a crib beside my bed. “That baby’s not crying.”
They rolled me down the hallway, past the Winnie-the-Pooh stickers on the tiled walls. There was Muzak playing through the loudspeakers, “Never on Sunday.” I hate that dippy melody still. My memories of the hospital stay are thin and fragmented and vague: curtains around the bed, other beds across the room, a television set playing in a corner, and my mother beside me devotedly, religiously.
My mom needed a ginger ale. Never in her life before or since has she needed a ginger ale. She said, “I’ll be back before you can say Jack Robinson,” another thing my mom has never done before or since. I went, “Jack Robinson Jack Robinson Jack Robinson Jack Robinson,” and when she came back, I complained that I had said it seventy-two times.
I was a thumb sucker, and that’s what pissed me off most about the hospital, that my left hand was encased in tubes and tape. They kept that hand tied up above me so that (they explained) I wouldn’t pull the IV out when I was asleep.
“Suck your right thumb,” said the doctor, like he knew anything about it. The left was the only thumb to suck.
From the bed I was moved to a wheelchair and started wheeling around the hospital. I got good at it. Someone suggested that I could race my parents’ paraplegic friend, Richard Brickner. I imagined the finish line and breaking the tape and me pumping my hands over my head in victory.
In 1971, recovery from open-heart surgery called for penicillin shots each day. Penicillin is very thick going in, and the shots were painful in my five-year-old groin. I remember the sound of the rolling tray just beyond the curtain, outside the area of my vision, the nurse coming in to administer the shot. I remember pleading for them not to do it.
The last time they tried to give me the shot, I threw a fit, and they had to hold me down, a nurse or orderly for every limb, and as my dad held my head, he laughed. I remember being outraged by the enormous smile spreading out under his beard. Wasn’t he on my side? Now I understand: this must have been the happiest sight in the world for him, all he had wanted for five years, his baby boy alive, repaired, and fighting.
One night at home, not too long after the hospital, I woke up to notice a sore in my scar, a little red swelling like a bug bite. My mother wanted to call the hospital, but my father took me to the bathroom and made me stand on the toilet seat, and with a pair of tweezers he took the black suture out from under the skin. For thirty years, until my second open-heart surgery, I had a little hole there, a cavity in the scar, a little burrow where the thread had been.
I got presents. One was an adding toy, not a calculator or an abacus but a little plastic man on a board like a square clock face, and when you moved his legs to the numbers below, his big pencil would move across the top of the board and show the sum. I also got a special pillow—I believe it’s called a husband pillow—the kind with armrests and a back like a chair, and I sat against that pillow and watched television. Every night, in the bathroom before bed, my mother ran cocoa butter on the scar to smooth it. The cocoa butter came in a stick, and she pressed it up from the bottom through an aluminum tube. I loved that cocoa butter smell.
The ordeal was over, and I was back home, back to normal. One of the doctors had said something ominous to my mother—“They all get off the operating table”—but my family was insistent. The hospital stay was done, and I was well. We called it “the operation,” which is slightly more euphemistic than “the surgery,” and as far as I could tell, the operation, and not the heart disease, was the bad thing that had happened to me. The good thing for me as a five-year-old boy was not that I had been cured of a potentially fatal condition—I never allowed myself to think in those terms, that without the operation I would have been crippled and then dead—the good thing was that I was home and safe. My normal life, I believed, was comfort and not illness. After the first corrective heart surgery in 1971, I had to see the doctor regularly, but I lived in a dream world of good health.
I had a scar on my chest, but that was it. By the time I was nine, it seemed the operation had happened in a different historical epoch. I barely remembered first grade, just vague images of guinea pig cages and hooks in a closet to hang up coats. Second grade, that’s when my life began.
The triumph over congenital heart disease is one of the great victories of modern medicine. Because pediatric open-heart surgery led to adult heart surgery, its effects are widespread. Maybe you have an uncle with a new heart valve, a grandmother with a pacemaker. Maybe the woman at your deli counter had a bypass. This all started with kids like me.
Pediatric cardiology changed the world. It was invented by two women, Helen Taussig and her predecessor, Maude Abbott, both of whom were initially denied admission to medical school on account of their sex, both of whom were prevented by the male medical establishment from practicing the kind of medicine they wanted to practice, both of whom were forced to look at children with defective hearts because no male doctors deemed those hearts significant enough to look at. Kids born with bad hearts were dead-end patients, for whom nothing could be done, until Abbott and Taussig, with genius, patience, and discipline, learned to diagnose and to treat those conditions. Vivien Thomas, who invented most
of the original equipment for pediatric heart surgery, who designed and oversaw some of the great groundbreaking procedures on children with deformed hearts, and who trained many of the most important doctors in the first generation of heart surgeons, never got to medical school himself because he was black and because he was poor. The early pioneers of heart surgery operated on the margins of convention and respectability, risking their medical licenses and their patients’ lives and sometimes skirting the law.
Those of us who have survived childhood heart surgery have been repaired but not exactly cured and have lived our lives on the border between sickness and health. I have been absurdly lucky. I am past fifty, not much younger than heart surgery itself. And my luck has held: every time my life has been in danger, doctors have come along and invented something to save me. I have surfed wave after wave of advances in heart surgery and in medical technology. The history of cardiac surgery is inscribed in the muscle of my heart, and in this book I will try to give that carved-up muscle a voice, to tell the history of heart surgery through the story of my heart.
The first half of my life, from my first open-heart surgery when I was five to my second when I was in my mid-thirties, was spent mostly in denial that I had any kind of heart problem. The second half has been punctuated by regular visits to the operating table. What’s all this been like?
Scary at times, but on the whole, great. Lucky. Privileged. Like your life, dear reader, only more so, lived (like yours) with the support of medicine and in the shadow of death. I have a job, two kids, and a happy marriage. I climb mountains up above the tree line. I ride my bike around New York City. In yoga classes, I stand on my head. I take five pills a day, and my torso is scarred, and I need to go into an ambulance every so often, and more often into an operating room, and medical devices lodge under my skin, but you can’t see any of that when I have a shirt on.
The Open Heart Club Page 3