The Open Heart Club

by Gabriel Brownstein

  Taussig and Blalock published the results of their work in May 1945, and soon doctors from all over—including Robert Gross in Boston—came to see. Hopkins was flooded with patients. Newspapers across America sponsored contests to send cyanotic kids to the hospital. These kids arrived with their own local press contingent. Hallways were crowded with reporters. “Some of the parents did not bother to [consult] their doctors,” Thomas remembered. “They came by automobile, train, and plane. Many had not communicated with the hospital, had no appointment in the clinic, and had no hotel reservations; the cardiac clinic was overrun.” The children’s surgical ward was converted into a ward for heart patients and was nicknamed “the tet ward.” There the kids lay in their cribs and beds before surgery, blue lipped, stubby fingered, crouching and squatting to relieve the pressure on their chests, sometimes twenty to a room.

  Vivien Thomas’s days began at 7 a.m. when he collected blood from postoperative patients. His day ended at 11 p.m., when he called the operating room for the next day’s schedule. Blalock demanded that Thomas be at his side for each of the first sixty operations, and if Thomas was missing—picking up or delivering materials to the Harriet Lane Home, which lay two city blocks from the operating room—he was sure to hear himself paged over the intercom. In the summer, the heat in the operating was unbearable. The big, screened windows were flung wide open. The doctors sweated in their scrubs and masks. There was a fan to blow the air around and an enormous spotlight to guide Blalock in his work. The big, hot light stood on a wobbly stand and was forever being jostled by the surgical team or the four or five observing doctors.

  Blalock and Taussig toured the world, lecturing and demonstrating their work. Thomas continued to work at Hopkins. It wasn’t until the 1970s, after Blalock was dead, that Vivien Thomas was allowed to become a professor of surgery at Johns Hopkins. After his appointment, he made it his mission to train a generation of African American surgeons there.

  Alfred Blalock worked with Helen Taussig for years, but it’s not clear that he liked her. “If I get to heaven,” he once said, “it will be because I could live with Helen Taussig.” Other male doctors seemed to have agreed. They called her “the Queen” or “the Mother Hen” because of the way her students, most of them women, followed her.

  She trained more than 123 students at Johns Hopkins. The “Knights of Taussig” spread out across the country. In 1947, she published her book, Congenital Malformations of the Heart. It was revised in the early 1960s and again in the 1980s and remained the essential textbook of the field for nearly forty years.

  Taussig held reunions for her students at her family home in Cotuit, Massachusetts. Her rule for her guests was simple: let her have her mornings for work; she was not their hostess until after lunch. She liked to swim. She liked to sail. She never married. She seemed to have no personal life outside her work. She was the first woman to become president of the American Heart Association, received the Medal of Freedom from Lyndon Johnson, and was made a chevalier of the French Legion d’Honneur. She continued publishing original work into her eighties, when she was studying congenital deformities in bird hearts. She died backing her car out into traffic.

  “She was a terrible driver,” one of her (male) colleagues remembered.

  Many of the patients who got a Blalock shunt lived for decades afterward, and many survived to have successful open-heart surgery and full correction of their heart defects. They were still somewhat blue after their surgeries, but they were active—the shunts allowed long, full lives. There are even some people still living today whose heart defects have never been repaired, who have survived for decades with terrible cardiac deformities, the shunts in their great arteries redirecting their circulation, oxygenating their blood. I got to talk to one such patient.

  Belen Altuve Blanton was operated on by Denton Cooley in 1965 in Texas on Christmas Eve. When she was an infant, Cooley put a shunt into the great arteries of her heart. Her parents had flown up from Venezuela for the surgery, and they never allowed her to undergo a second surgery for a repair to her congenital defect.

  I first saw Belen in a hotel bar in June 2017, fifty-two years after Cooley implanted the shunt. A petite, stylish woman with a dark mop of hair and a round, pretty, youthful face, she had a big glass of wine and was surrounded by friends. If I had had to guess her age, I would have said mid-thirties. If you’d asked me what was wrong with her, I would have said nothing.

  “It’s the make-up,” she laughed. Then she showed me her hands. She had lovely rings. Her fingers were small, but under each painted nail, they were purple. She had lived her entire life without a functioning right ventricle, the shunt from 1965 compensating for her heart defect.

  Throughout most of her life, she had little medical follow-up. In 1972, when she was seven, the family had flown back from Caracas to Houston, where Dr. Cooley had recommended a follow-up operation, but Belen’s parents had refused to put her under bypass on a heart-lung machine.

  “My parents,” she told me, “they were afraid of everything.”

  Belen grew up sheltered and adored. She was not allowed to swim or to ride a bike. Her parents never taught her how to drive—they would not put her behind the wheel of a car. Her mother said, “You’re crazy. With your heart?” She lived well through most of adolescence, but one day when she was seventeen, she woke up with arrhythmia so severe she couldn’t move, so tired she could not brush her teeth. At the hospital, they did an EKG and told her she was dying. Belen vomited yellow bile. She passed out and reports that she felt a sense of flying through the dark, deep into a quiet place. A light appeared, as Belen describes it, as if from a doorway. She told me that she saw her godfather, recently deceased, and at that moment, Belen believes, a defibrillator was put to her chest and she was revived. After that, she began to live her life as if she had no heart problems at all.

  “I have this thing,” Belen told me. “Life is not for drama. I hate drama.”

  She went to law school, but law was not for her. When she suffered cardiac arrhythmias at parties or in company, she pretended they weren’t happening. “I needed to be cool in front of my friends,” she said. She left Venezuela for North Carolina. She got married. She had a kid. The child was healthy, but the pregnancy put a terrible pressure on her heart.

  Like Bridgette Ratliff, Belen lived for years in heart failure, without ever acknowledging it, without ever seeing an appropriate doctor. When finally she saw an adult congenital cardiologist and was told that she would need a heart-lung transplant, Belen’s reaction was furious denial.

  “She told me everything, right to my face,” Belen said. The doctor described to Belen the pulmonary hypertension she suffered and the damage that her lungs had suffered on account of the lifelong weakness of her heart. “When I got out of her office,” Belen told me, “I thought, ‘What does this witch know about life?’ But you know, she wasn’t mean. She was just telling the truth. That’s how I started to learn about my condition.”

  Belen was placed on a list for a heart-lung transplant, and one was scheduled, but then, at the last moment, called off. Belen received the news on the phone, sitting in a restaurant with friends. She had been diagnosed with cardiac cirrhosis—the long-term damage to her lungs and heart had strained and injured her liver, and doctors, fearing complications to those organs, would not perform the transplant.

  Belen, when I met her, had no hope for a cure for her condition. But she perseveres. She has met a second husband, John Blanton, who dotes on her. I last saw her at a party, and she was looking fabulous, wearing a spaghetti-strap spangled dress with a giant eyeball design on the front.

  In private, she struggles. “I’ve become terrified of death. I mean terrified.” She refuses to go out of her home alone. “I always have this feeling I’m going to pass out, and nobody’s going to be there to save me.” Still, in public, she insists on being beautiful and strong. She lives as she has always lived, willing herself and imagining herself to be heal
thier than she actually is.

  At the hospital, when she goes under anesthesia, she tells her husband, “Honey, as soon as I wake up, put some lipstick on me.” Sometimes she finds herself losing strength. She’ll be eating with friends, unable to move, physically incapable of rising from her chair, but by sheer determination she manages.

  “My ass will be out of that chair, and I will be walking,” she told me. “You can lose anything in this life, but never your glamour.”

  26.

  IN JUNE WE all went to Boston together, the first time I ever let Marcia come with me to the doctor. Eliza was three and a half months old. Her colic was beginning to ease, and all that anxious nursing had made her a fat and gorgeous baby. She was perfectly charming in the waiting room in her green-and-white-striped Zutano onesie. All the other babies in there were heart patients. We were the only parents with a healthy kid, and even in my own fear and doubt and confusion, it seemed crazy how lucky we were to have Eliza.

  Dr. Freed didn’t prescribe a catheter exam. Instead, he had me get an MRI. I imagined for years afterward that he had done this as a sop to my neurosis—I’d been afraid of the catheter, so he’d figured out another way to get a measure—but when I met with him in 2018, he disabused me of that notion. The MRI was safer than the cardiac catheter, with the patient exposed to less radiation. The numbers it offered were far more precise. In 1995, the cardiology department at Boston Children’s had purchased an MRI machine, and it had taken some time for them to master its use. The MRI is generally designed to give pictures of a static part of the body—a brain or a knee—and the heart is always in motion, so it became necessary in cardiology to learn to use the MRI in conjunction with an electrocardiogram, to “gate” the imaging, in cardiologists’ terms: to get pictures of the heart at its greatest points of contraction and expansion, in systole and diastole.

  So into the capsule of the MRI I went, naked but for a hospital gown. It was like a giant white washing machine, and I was the load of clothes, tossed in on the spin cycle. White whooshing sounds filled my ears. Oh, please, God, let me know, I prayed: Was I going to live or die? The repetitive sound of the machine gave an answer: wha-HOOOM, wha-HOOOM, wha-HOOOM. I listened and listened and prayed and prayed, and the rushing sounds became words: no-DEATH, no-DEATH, no-DEATH. I couldn’t figure out if there was a period between the two words “no” and “DEATH”: “no. DEATH. no. DEATH. no. DEATH.” Was that it? Or was it “no DEATH. no DEATH. no DEATH.” If there was a period, I was going to die. If there wasn’t, I’d live. Everything depended on punctuation.

  I got back to the waiting room. I took warm, funny Eliza in my arms. She was pointing. She was smiling. I caught Mike Freed’s eye as he glimpsed us across the waiting room. He looked at the baby and frowned. Something shifted in his aspect, which I understood as follows: It was one thing to play games with my heart as a solitary neurotic twenty-nine-year-old. It was quite another to do so as a thirty-three-year-old family man.

  In his office he showed me the pictures and measurements of my heart. The right and left ventricles should be approximately the same size, he explained, but mine weren’t. In diastole, when the heart expanded, my left ventricle measurement was a normal 140 milliliters. My right ventricle measured 472 ml. In systole, the left squeezed down to 53 ml. The right hardly squeezed at all; it compacted to 342 ml. My right ventricle’s regurgitation fraction—the amount of blood that went backward—was high: 50 percent. Half the blood that should have been going to my lungs was sliding back. Dr. Freed explained to me that these numbers did not signify changes over time. It wasn’t clear how much larger my heart was now than it had been when he had first met me. But now we had a definitive measurement.

  I objected. I was feeling fine, I said. Didn’t it make sense to wait until I had symptoms? Why should I have heart surgery when I was feeling fine?

  Dr. Freed rubbed his forehead. He did not say it outright—that I was not feeling fine, that I was fooling myself, just adapting to my lethargy—instead he told me the old story about the frog getting boiled. He had never boiled a frog, he said, so he had no idea if it was true. But I was a little like the frog in the story. The temperature was being raised slowly, and I wasn’t noticing what was going on, but by the time I noticed, I might well be cooked.

  “You’re saying that if I develop symptoms, you won’t be able to save me?”

  He nodded.

  “So I really do need to have heart surgery.”

  “If you want to see your daughter graduate college, yes.”

  Later, Dr. Freed gave me his notes. He wrote,

  I don’t think there are any surprises. Mr. Brownstein is not limited by his heart disease in his everyday activities. Objectively, his maximum 02 consumption is somewhat reduced as is his cardiac output at rest. This is undoubtedly due to the free pulmonary regurgitation and dilated right ventricle with a reduced ejection fraction, which compromises his ability to augment cardiac output with exercise.… In spite of the fact that I don’t think there have been any real changes over the last few years, I think that most pediatric cardiologists and adult cardiologists taking care of adults with congenital heart disease would recommend surgery to replace his pulmonary valve. As we take care of more and more young adults with repaired tetralogy I think the preponderance of evidence is coming down on the side that long term volume overload of the right ventricle is almost certainly going to get him into trouble eventually.… I spent some time discussing this with Mr. Brownstein.

  I tried to digest what he was telling me. The surgeon would crack my chest and slit my heart open and put a new valve where I didn’t have one, and this would arrest the pulmonary regurgitation and allow my right ventricle to recover its pumping power—or at the very least, it would arrest the ventricle’s decline and potentially save me from heart failure. We moved toward scheduling a date. My brother was going to be getting married in early August, and I wanted to be there for that. That seemed reasonable to Dr. Freed. And then the semester would begin, I told myself.

  “What about December?” I asked. “Would that be crazy?”

  “Not crazy,” Dr. Freed said. “Some people,” he said, “like to take care of these things right away.”

  “I’ll schedule for December,” I told him.

  That summer was brutal. Was I too exhausted? Should I not have been driving? I thought I saw something in my blind spot, and Marcia screamed my name, and then I slammed my foot on the brake, and the car tires skidded over the highway like skates on ice, and we slipped over the embankment, flipping, flipping, over and over again, and came to rest with the airbags in our faces and Eliza hanging upside down in her car seat, beaming and smiling. Thank God Marcia was wearing her seatbelt.

  And then, when we were home in Brooklyn and sorting the broken glass from our luggage, we got the news that one of my childhood best friends had died—a beautiful, brilliant man who had lived a troubled life and only recently seemed to have secured himself happiness. He had died on his honeymoon in Martha’s Vineyard on account of a sudden, mysterious arrhythmia that affected his heart. It seemed so unjust, so confusing. Eliza came with us to his funeral, the same church where only weeks before, we’d celebrated his marriage. The choir from the Metropolitan Opera had sung when they’d married. His bride had been one of them, a singer in that chorus, and now she was his widow.

  In the fall, Marcia went back to work part-time. Eliza was sleeping, growing, thriving, no longer colicky, a perfectly delightful child. She developed interests—for instance, in a soft yellow duck that went into the bath with her. Every morning, I took a walk with her, baby strapped to my chest. I went out to Stony Brook two days a week, and if I managed all my prep and grading on the long train ride back, then my life at home was relaxed and easy. My dad could not get enough of his first granddaughter. He had just retired. He came out to babysit as often as he could. I got a little workspace, almost for free, in a brownstone converted to an after-school tutoring center. It was always empty d
uring the day.

  At Stony Brook, I didn’t tell anyone about my condition. On the subway stairs, my heart wobbled and jumped. At night I was haunted by anxiety. I had an awful vision: that I’d wake up from the anesthesia in the middle of surgery, and I’d see it, I’d see the saw they used to open my chest. I imagined the spinning steel blade, the teeth blurred and biting, the spitting blood and the skin and the bone, and there I’d be on the operating table, watching. I wasn’t sure what I was going to do with my life, but I certainly didn’t have to decide anything until after surgery.

  I worked on my stories. Sometimes at the tutoring center, I browsed the bookshelves and reread stories from my childhood. Back to Narnia. Back to Earthsea. I reread the volumes of classic stories they’d stocked up on for school kids. I had been trying to write stories about my childhood, probably because my old friend had so recently died. I was thinking about his heart and mine, and I began to rewrite my nostalgic stories over the classics all around me. “Wakefield,” for example, by Nathaniel Hawthorne: I made Hawthorne’s main character live on the seventh floor of my parents’ old apartment building. My childhood friends and I spied on him. My narrator fell in love with Wakefield’s daughter. I found an old story I’d never read by F. Scott Fitzgerald. I thought I had read everything by Fitzgerald. The story was called “The Curious Case of Benjamin Button”—it wasn’t in the big, fat selected stories I’d been assigned in high school; it was in a little volume called Tales of the Jazz Age and had an awesome premise but was uncharacteristically bumpy for a Fitzgerald story. The idea was so cool—aging backward, back into the oblivion that came before birth—and the story seemed all about death and memory and writing. I sent the Wakefield story off to literary magazines, thinking, Ha-ha, you’ve rejected me, you bastards, now go and reject Nathaniel Hawthorne. The Fitzgerald story I rewrote got long and bizarrely convoluted and strange. I wasn’t writing it for any point but to mark the hours, to explore my brain, to play with language. I was pleasing myself, if nobody else.