The Open Heart Club

by Gabriel Brownstein

  He worked first at the University of Chicago and then at Rockefeller University. Carrel was the first doctor to develop techniques for end-to-end anastomosis, that is, for sewing together sectioned blood vessels. He claimed to have learned his stitching by imitating his mother, a seamstress. What she did with her embroidery needles, he did when sewing up veins and arteries. For this groundbreaking work, Carrel was awarded the Nobel Prize in 1912, when he was thirty-nine, but this was only the beginning of his career. After World War I, in New York City, he started the first-ever studies in organ transplantation. He sewed a dog’s kidney to its shoulder, where the kidney thrived, produced urine, and killed the dog. He took a leg from one dog and successfully sewed it onto another.

  Carrel cultured a chicken heart and kept it alive outside a chicken body, claiming the chicken tissue was immortal. In his lab at Rockefeller University, all the walls and furniture were painted black. All the technicians had to dress in black. With Charles Lindbergh, the famous aviator, Carrel began to work on profusion pumps, devices that would deliver oxygen to living organs outside the human body. Lindbergh and Carrel were able to use their profusion pumps to keep cat thyroid glands viable for several weeks outside cat bodies. Lindbergh, whose sister had heart problems, dreamed of a new kind of profusion pump, a heart-lung machine that would keep his sister alive while doctors treated her.

  Lindbergh and Carrel both were fascinated by eugenics and race science, and both imagined the racial perfection of humanity. They were two of the leading American fascist sympathizers. In 1935, Carrel published Man the Unknown, which was the second-best-selling book in the United States that year, after Gone with the Wind. In it Carrel argued, “The democratic principle has contributed to the collapse of civilization in opposing the development of an elite.” The introduction to the 1939 edition of Man the Unknown worried about “the extinction of the best elements of the race” and proclaimed, “Never have the European races been in such peril as today.” Carrel was concerned about the “moral quality of the population” in the United States, where “the number of misfits reaches perhaps thirty or forty million.” The German-language edition of his book added new paragraphs that endorsed the idea of using gas to exterminate genetic undesirables.

  In 1939, when Carrel was sixty-five years old, he hit mandatory retirement age at Rockefeller University. In 1941, Marshal Henri Philippe Pétain invited him to Vichy France, and there he founded the Carrel Foundation for the Study of Human Problems. It’s impossible to assess his personal culpability in what happened there, but the institute was involved in a murky business, propelled by mysticism and barbarity, while the fascist regime brought into action Carrel’s eugenic dreams. Just as Carrel had advocated, thousands of people—“misfits” seen as dangers to the “moral quality” of the human race—were killed. After the war, he was widely viewed in France and America as a traitor and a collaborator, though he had his defenders. Dr. Richard Bing, a German Jewish refugee who worked with Carrel at Rockefeller before starting his career at Johns Hopkins, once said, “To me, a young kid, he was wonderful. I have many of his nice, supportive, affectionate letters, and I never saw anything of this ‘diabolical’ side of his nature.”

  But there is something in Carrel’s life and work that reveals the terrifying business of heart surgery, the cold savagery at the center, the industrial, clinical vivisection and resection of the human body. It’s the thing that my mom saw in Jim Malm’s eyes, the thing that terrified her.

  All interventional medicine in the United States now takes place in temperature-controlled sterile rooms. An anesthesiologist administers sophisticated painkillers and narcotics, and expensive electronic equipment monitors the patient’s pulse, blood pressure, and oxygenation. In dangerous pediatric surgeries, social workers are on call for both the parents and the child. In 1938, in Lorraine Sweeney’s case, all these functions were performed by one woman, Betty Lank, a Canadian nurse who had taken a three-month course in anesthesia.

  In the 1930s, all nurse-anesthetists were women, all surgeons were men, and a 1937 speech by Dr. Harold Foss, “The Surgeon and His Anesthetist,” describes with cheerful sexism the relationship between the two professionals:

  The surgeon expects, and usually finds in his anesthetist a keenness of mind, an alert intelligence, a loyal, faithful, self-effacing, efficient devotion to the job in hand.… She wants encouragement, helpful and constructive advice and criticism when she is wrong and a word of approbation when she is persistently doing what she and every one else in the operating room knows to be an especially fine piece of work.

  Betty Lank built most of the equipment she used. When there wasn’t a blood pressure cuff small enough for her patient, she made one with a piece of surgical tubing. When the masks didn’t fit the patients’ faces, she soaked them in alcohol to shrink them. She administered her drugs through homemade tubes, clipped from catheters of various sizes. She calmed babies before surgery by giving them bottles filled with ten parts glucose and one-part brandy. She sang them Brahms’s “Lullaby” as they went under. She painted stars over their cribs in post-op and described the constellations to them as they recovered.

  During surgery, she monitored vital signs by taking her patients’ pulse, and counting their breaths, and watching them carefully. In an oral history, Lank remembers the methods of the time as “terrifying” and “awful.” For Lorraine Sweeney’s operation, she used cyclopropane as an anesthetic. It was highly explosive and had caused a fire in an operating room at nearby Deaconess Hospital. To minimize electrostatic sparks, Dr. Gross’s operating room had to be kept above 55 percent humidity. There was no air-conditioning. Betty Lank’s surgical notes are stained with sweat and blood.

  So, in a hot and humid operating room in summertime Boston, a one-eyed resident and his multitasking nurse—against the explicit direction of the hospital’s surgical chief of staff—set out to perform the first-ever corrective surgery on a human heart. Lank administered the cyclopropane through a mask and turned the patient on her side. Gross made his incision between the third and fourth ribs. In his notes, he writes, “As the left lung was allowed to collapse inferiorly, an excellent view was gained of the lateral aspect of the mediastinum,” that is, the cavity that holds the heart. He put his finger right on her heart and felt “a very vibrant thrill over the entire organ.” His report continues, “When the stethoscope was placed on the pulmonary artery, there was an almost deafening, continuous roar, sounding much like a large volume of steam escaping in a closed room.” Using an aneurism needle and a silk thread, Gross pulled the ductus arteriosus shut. Lorraine’s blood pressure immediately normalized from 110/35 to 125/90. Gross waited three minutes, watching. The ductus, when he saw it, looked too short to section, so he left it closed. According to his report, “There was only mild discomfort on the afternoon of the day of the operation, and on the following morning the child was allowed to sit up in a chair. By the third day, she was walking around the ward.”

  He bought his patient a little doll and took a photograph of her slouching in her white frilly dress. Her dark sunken eyes look tired and frightened. Lorraine’s mother was not allowed to visit the girl for the extra week that she was held in the hospital “because of the interest in the case.” But Lorraine herself was fine. She lived on into her nineties.

  On the train from Baltimore to Boston, Helen Taussig rehearsed her notes on tetralogy patients as she would present them to Gross. Because of the ventricular septal defect, the venous and arterial blood mixed in the large chambers of the tet patient’s heart. Because of the pulmonary stenosis, not enough blood got to the lungs. But with the ductus arteriosus open, some of additional blood went back into the lungs instead of going out into the body. This increased the volume of blood going into the lungs, thus the volume of oxygen going out to the body, and hence improved the health of the child.

  So Helen Taussig practiced reciting her theory: one could relieve the symptoms of tetralogy of Fallot by creating an artif
icial patent ductus. Make a hole, make a shunt between the arteries, and direct more of the blood to the lungs and more oxygen to the body. She got off the train. She went to Longwood Avenue. She found Gross’s office. When she explained her idea to him, he laughed at her.

  “I think,” Taussig remembered later, “he thought it was one of the craziest things he’d heard in a long time.”

  “Madame,” he said, “I close ductuses. I don’t create them.”

  Taussig, a half foot taller than him but begging, asked if he could, if it would be possible. She said meekly, “It would be a great help to a cyanotic child.”

  Gross turned her down.

  To be fair to Gross, all his dogs with artificial PDAs had died. Building a shunt between the great arteries is a tricky business—too narrow and not enough blood gets to the lungs; too wide and the lungs are flooded. No one had ever done it before. So Taussig went back to Baltimore.

  She decided to try her idea on the newest surgeon hired by the hospital, Dr. Alfred Blalock. He had recently come from Vanderbilt and had a reputation for experimentation. Blalock had made tremendous strides in the treatment of battlefield shock. He was a rising young star in American surgery.

  She met him in his lab at Hopkins. He was small, pale, handsome, and intense, with round glasses and dark hair swept back from his forehead, a southern gentleman, directly descended on his mother’s side from the president of the Confederacy, Jefferson Davis. On the stool beside Dr. Blalock sat another man, Vivien Thomas. Taller and younger than Blalock, with a longer face and milder manners, he wore a white lab coat, and—this must have been confusing at first for Helen Taussig—he was a black man.

  Baltimore was a Jim Crow town. Johns Hopkins had separate entrances and bathrooms marked “colored.” Thomas wasn’t supposed to drink from the same fountains as Taussig or Blalock. All the other black people working in the hospital held menial positions. None of them wore lab coats. Thomas could have been arrested for eating lunch with Blalock or Taussig. But he sat there, expectant, Dr. Blalock’s special assistant, brought with him from Vanderbilt to work in the lab. Taussig made her presentation about tet kids and PDAs.

  She might have been nervous, but she had learned from her meeting with Gross. She was not going to tell a surgeon what to do. Taussig withheld her conclusions and simply described the evidence and her observations: the comparison of tet kids with PDAs to tet kids without; the way that tet babies became symptomatic only after their PDAs closed. She presented this as a curiosity, as a puzzle. She wondered aloud if something could be done for these kids “as a plumber changes the pipes around.”

  Blalock looked at Thomas. Thomas smoked his pipe.

  24.

  IN THE 1990S, I was a man in denial, hanging perilously onto my health but unwilling to acknowledge the fact. I was a patient way out in the wilds of science. Michael Freed and Marlon Rosenbaum were two brilliant men, both eminent in their field, but together they had no idea what to do with me.

  “We have this dilemma all the time,” said Dr. Freed, when I had lunch with him in the spring of 2018. We met in Zaftig’s Diner in Brookline, Massachusetts, near his home. He had a bagel and lox; I had a cup of borscht and a plate of potato pancakes. I brought him a bottle of Armagnac as a gift for saving my life. He seemed embarrassed by this. I very much enjoyed his company.

  Dr. Freed explained that the problem he faced with my heart in the mid-1990s was typical of the history of pediatric cardiology. It really wasn’t that different from the problem Welton Gersony and Sylvia Griffiths faced with the hearts of their patients in the late 1950s, when they had to choose between Blalock shunts (safe but temporary) and complete repair (dangerous but potentially curative).

  “You’ve got something that’s okay,” he said, meaning the Blalock shunt, or my freely leaking heart after tet repair, “and then someone comes up with a new thing,” meaning open-heart surgery in the 1950s or valve replacement in the 1990s. “Whenever you try the new thing, there are unknown risks.”

  In the late 1950s, Blalock shunts left patients with reasonably healthy outcomes. They survived for decades. Corrective open-heart surgeries, initially, were much more dangerous, with high mortality rates. It took time for the lines on the graph to cross: it was several years before the surgically repaired patients began to outlive and outlast the patients with the shunts. In the 1990s, most people like me—repaired tetralogies with big leaks—were doing fine. We were clearly at risk, but valve replacement surgery was similarly risky. There were no data to suggest when, where, and how to intervene on a patient, particularly one like me who seemed reasonably healthy.

  Twenty years after my 1971 surgery, it was hard for the doctors to guess who would live and who would die. Surgery had left us all with free pulmonary regurgitation. Blood flowed backward through our pulmonary arteries and into our right ventricles. The ventricles got bigger. Some patients did well for fifty years after tetralogy repair. Some got in trouble after five years. There were no data. We who were living all said that we felt fine. A lot of the patients who died had been lost to care, their cases unsupervised and irrecoverable. Many had died from sudden arrhythmias. In those cases enlarged ventricles were only one of many possible contributing factors; there was no way to correlate those deaths with ventricle dysfunction. For a given patient, outcomes were unknowable. They still are. To this day, the subject remains obscure. It’s impossible to know how long a given repair will last.

  “We’re still trying to get a handle on what the predictive factors are,” said Dr. Freed over our lunch in 2018.

  In the 1980s, Dr. Freed explained to me over his bagel, imaging technology did not allow doctors to get a clear picture of a heart’s decline. When Sylvia Griffiths looked at my heart on an X-ray, she could see that it was enlarged, but the shadowy image didn’t let her know which chambers were getting bigger or by how much.

  There was no way for Dr. Griffiths to measure right ventricle growth. Only with the echocardiograms could doctors begin to see which ventricle was enlarged in which patient—but even the echo doesn’t give a great measure. The pictures depend a lot on the angle of the transducer wand and the skill of the technician, and the data is at best impressionistic. I’ve seen this in my own more recent echos; Marlon Rosenbaum has shown them to me. Year to year it can be very hard to say in precise millimeters whether a chamber is growing or shrinking or staying the same.

  Every spring after 1995, I went up to Boston to Dr. Freed, and he looked at my X-rays and my echos and gave me an exercise test. In trying to plot the course of my heart’s decline, he was traveling through a foggy, unexplored territory. He had only the vaguest of maps and no real landmarks. For my part, I knew that my ventricle was collapsing, but I convinced myself that my prognosis was really no different from anyone else’s. No one, I told myself, knew how long any heart would last. No heart could last forever. I talked it out with Marcia. I drew her into my insanity. But I refused to let her come with me, ever, to Boston.

  Each spring at Children’s, I stood in the X-ray room in the pediatric cardiology ward by the pictures of Barney and Minnie and Mickey Mouse, and the technicians raised the cold glass, and I pressed my chest against it, and they gave me the big print in a big brown envelope and told me to walk over to my next stop, the echocardiology lab. The X-ray print in its envelope felt to me like secret evidence that could convict or acquit me. I felt burdened having to carry it, like a man carrying his own death warrant to his executioner.

  Please God, I prayed in the echo lab, let it not show that I need heart surgery. As Dr. Freed explained to me, the technology of valve replacement developed alongside imaging technology. In the early 1960s, Giancarlo Rastelli at the Mayo Clinic had demonstrated that it was possible to relieve pulmonary stenosis through the implantation of an external conduit, and by the time I was seeing Dr. Freed in the 1990s, pulmonary valves were beginning to be used in a handful of congenital patients with collapsed or collapsing ventricles. But outcomes were in quest
ion. Mike Freed was unsatisfied with the evidence. Valve replacement might resolve my situation—or compound it. I might do worse after heart surgery, even if the surgery was successful. Dr. Freed was unsatisfied, too, with the diagnostic technology. Neither the echocardiogram nor the cardiac catheter offered him hard quantitative measures of my ventricle. My exercise tests showed that I performed somewhat under average, at 85 percent of the predicted rate for my age, but that was meaningless in my case—pretty solid, in fact, for a congenital heart patient. The echos didn’t demonstrate conclusively that my ventricle was getting any larger. At what point would the size of my ventricle begin to endanger my health? Would the surgery (dangerous in itself) bring me out of danger from my collapsing heart? Would the surgery leave me with new problems?

  In 1997, I moved in with Marcia. I sent out a slim, two-hundred-page, highly polished draft of my novel to literary agents, and I got very kind rejections in reply. Then I gave up on the book ceremoniously. I took all the drafts and notes and versions, which by that time filled two big copy-shop paper boxes, and I put it all on the curb and said good-bye.

  In his office, Dr. Freed continued to warn me that the leak in my heart was considerable and that the ventricle was very enlarged. I asked if I needed to take a catheter exam (as if that were the thing to fear and not the collapse of my body). He said we’d talk about it next time. I must have been a double puzzle to him, all my terrors a barrier he had to sail around as he made his way toward treatment of my heart.

  Marcia and I were married in August 1997. We danced under a tent on a sunny day in Vermont. A year later, she was pregnant. I got a full-time teaching job, out at the State University of New York at Stony Brook. The commute was a bear from our place in Brooklyn—two and a half hours each way—but I wrote on the train in the morning and graded papers on the way home, and I only had to go out two or three times a week, and I got good health insurance and a retirement account.