The Open Heart Club

by Gabriel Brownstein

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  Gabriel Brownstein has published a novel, The Man from Beyond, and a book of stories, The Curious Case of Benjamin Button, Apt. 3W. For his short stories, he’s won a PEN/Hemingway Award and a Pushcart Prize. He teaches at St. John’s University in Queens, New York, and lives in Brooklyn with his wife and two daughters.

  ALSO BY GABRIEL BROWNSTEIN

  The Curious Case of Benjamin Button, Apt. 3W

  The Man from Beyond

  NOTES

  THIS IS A book about my good fortune, and it began with two purposes: to thank my doctors and to figure out how they saved my life. All the doctors who treated me were still alive at the time I was writing, so I’ve been able to interview many of them and thank them in person. They helped me write this book, and they have been the sources for this book’s most intimate information about congenital heart disease and adult congenital cardiology, so though they’re in the acknowledgments and in the book, their names appear again here as sources: Michael Freed, Welton M. Gersony, Sylvia P. Griffiths, Davendra Mehta, Marlon Rosenbaum, Alejandro Torres, and Lucy Swift. I also want to thank their colleagues, doctors who didn’t treat me but helped me with this book: Jamil Aboulhosn, Eugenia Doyle, David Hoganson, Douglas Moodie, Abraham Rudolph, Roberta Williams, and Ali Zaidi. Nada Farhat, Stephen Fishberger, Deborah Gersony, John Mayer, and the doctor I call Danforth Zhee all discussed my health with me in their offices at the time I saw them, so they are sources too.

  Whenever I mentioned I was writing a book about congenital heart disease to anyone outside the community of doctors and patients, eyebrows raised. People seemed to think it was an odd subject. I kept wondering, if I were to say that I was writing a book about any other medical condition—tuberculosis, anxiety, Tay-Sachs disease, backaches, acne, or the flu—would anyone find it odd? Heart defects are the most common serious birth defect, and there’s a kid with a surgically repaired heart in most every school, but still the phrase “congenital heart disease” remains almost unmentionable, a turnoff. Even Mark Roeder, the president of the Adult Congenital Heart Association (ACHA), agreed it was not a good idea to put the phrase in the title or subtitle of a book. So as this project came toward its conclusion, I came to a third purpose in writing: to make the condition more recognizable as a part of ordinary social conversation, so that patients like me could tell the stories of their lives and be understood.

  The patients (and their parents) who shared their stories with me became the second chief reference source for my book, and though many of these names appear in the book (and the acknowledgments), they deserve to be repeated here: Bob Avery, Meg Balke, Belen Altuve Blanton, Darcie Farella, Chris Halverson, Melissa Hartman, Pauline Loh, Aliza Marlin, Paula Miller, Michael Pernick, Rick Puder, Bridgette Ratliff, Alan Sabal, Josh Sarantis, Danny Spandau, Ian Steele-Avery, Judy Vincent, Corey Joy Williams, Ken Woodhouse, and the patients I call Jenny and Amanda. There were others I spoke to, in recorded interviews and informally, in gatherings of adult congenital heart defect patients. Some of them preferred not to have their names printed; some of them spoke off the record; some of their names have been lost to me. They all deserve acknowledgment. If I talked to you at a lunch or a convention or other ACHA gathering, but you don’t find your name here and are disappointed, sincere apologies. No matter how short our conversation, you helped me. I’d also like to thank Mark Roeder and the ACHA—Danielle Hile deserves particular mention, as she acted sometimes like a volunteer research assistant for me.

  I have browsed scientific papers, conference reports, oral histories, and other testimonials, but for a significant part of my research I’ve depended on secondary sources, chiefly on other writers’ histories of medicine. Three deserve to be named at the outset, as they were the first I read, and they formed the spine of my understanding of my subject: Roy Porter’s The Greatest Benefit to Mankind: A Medical History of Humanity (Norton, 1999), Paul Starr’s The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry (Basic, 1982), and Dr. James S. Forrester’s The Heart Healers: The Misfits, Mavericks, and Rebels Who Created the Greatest Medical Breakthrough of Our Lives (St. Martin’s, 2015).

  This is my first attempt at a long, serious work of nonfiction. I’ve tried to tell a true story here, but up to now I’ve mostly written fiction, and I have discovered (as so many other writers have told me) that the phrase “true story” is almost an oxymoron. All the business of putting together a comprehensible narrative—the selecting, omitting, ordering, and condensing of events, the sustaining a particular point of view, just the attempt to take the noisy mess of experience and history and squeeze it into words—all of that skews the truth. This book is primarily a record of my memory, which I know is faulty. When people corrected me (my parents, my wife, my brothers, and my doctors), I accepted their changes. But there was a lot that could not be corroborated or contradicted. I did my best. With other patients, the guiding principle for me was reporting their narratives accurately—I didn’t check that they were getting every detail right, because I cared mostly about how they felt about their lives. I tried to present their stories faithfully, as they were related to me.

  In interviews of living physicians, I checked one story against another and came up with the most authoritative account I could manage. When I encountered differing accounts—in my interviews or in my reading—I tried to resolve them by offering what seemed to me most plausible, given the context and what I had learned. (Here and there, in the notes below, you’ll find a few places where I felt my resolution wasn’t reasonably authoritative, and I have been forced to admit it.) When I encountered strikingly similar accounts—when every writer or interview subject told me the same exact story—that’s when I knew for sure that the truth had been lost, and (dutifully) I printed the legend. Occasionally I’ve allowed myself a fiction writer’s prerogative and imagined events more dramatically than a scrupulous historian might. In the notes below I’ve tried to point out the places where my imagination ran away with me.

  A couple of points on language: I’ve used the phrases “congenital heart disease” and “congenital heart defects” almost interchangeably. There are physicians who feel one usage is correct and the other misleading. I don’t come down on either side. Another name that I’ve been slippery with: the hospital where I have been treated for most of my life has changed its name many times over the years and is now called New York–Presbyterian/Columbia University Medical Center. Babies Hospital, where Dr. James Malm operated on me, is part of this complex institution and is now Children’s Hospital of New York. I think of the whole as a unit: Columbia Presbyterian. That’s the name I’ve used most often, in several abbreviated forms.

  My life was both the impetus and the limiting factor in my storytelling. What you learn in these pages is the history of cardiology and heart surgery as they relate to me. This means that I’ve left out many of the most famous heart doctors in history. Christiaan Barnard, the South African physician who was the first doctor to successfully transplant a human heart, is not in my book. Neither is Andreas Gruetzig, the German doctor who was the first to perform a coronary balloon angioplasty. Nor is Francis Fontan, the French surgeon who invented the repair of single-ventricle defects that bears his name. Nor are any of the doctors who have been working over decades to build an artificial heart. This is because I’ve not (yet) needed a heart transplant or a balloon angioplasty, and I will never need a Fontan procedure. Many subjects of urgent current medical interest—in particular, heart defects’ relation to genetic disorders and medicine related to genetic research—get thin treatment here. Because this history is told through an autobiographical lens, the book is perhaps overly focused on North America, but it’s where I’ve lived. It’s also where heart surgery developed, between 1935 and 19
75.

  In many ways, this is a story about medicine in the United States, how US medicine flourished and changed the world and provided us with miracles and how more recently its successes have been dimmed by an increasingly chaotic and inequitable system.

  PART ONE

  Chapter 1

  1. The account of the Spandaus’ lives comes from interviews with Danny Spandau, on the phone and in person, and in subsequent email exchanges. It was Dr. James R. Malm who gave me Danny Spandau’s name. I spent a great deal of time with Danny at the Adult Congenital Heart Association conference in Orlando, Florida, in May 2017 and spoke and corresponded with him before and after. Dr. Sylvia P. Griffiths, who was working as a pediatric cardiologist in the late 1950s, corroborated the likely medical details around Danny’s Blalock procedure. For detailed sources on the Johns Hopkins blue baby surgery, see notes to Chapters 21, 23, and 25.

  Chapter 2

  1. The seven out of eleven number comes from J. R. Malm et al., “An Evaluation of Total Correction of Tetralogy of Fallot,” Circulation 27 (April 1963): 805–811.

  2. The “top ten causes of death” is from B. M. Patten, “Retrospect and Prospect,” in Congenital Heart Disease: A Symposium Presented at the Washington Meeting of the American Association for the Advancement of Science, December 29–30, 1958, edited by Allan D. Bass and Gordon K. Moe (Washington, DC: American Association for the Advancement of Science, 1960).

  3. Time magazine issue is March 25, 1957.

  4. The description of Danny Spandau’s surgery, here and in the following chapter, comes from Malm et al., “An Evaluation of Total Correction,” as well as from interviews with Spandau, Malm, and Griffiths.

  Chapter 3

  1. For statistics on congenital heart defects, I’ve relied on the Adult Congenital Heart Association, with a big shout out to Danielle Hile, who answered everything warmly, promptly, and accurately; Douglas Moodie’s “Adult Congenital Heart Disease: Past, Present, and Future,” Texas Heart Institute Journal 38, no. 6 (2011), says that the population of adult congenital heart disease (ACHD) patients is growing at about 5 percent a year and that over 85 percent of all infants with congenital heart disease are now expected to reach adulthood; Moodie approximates that 5 percent of ACHD patients who needed follow-up were getting appropriate care in 2011.

  2. A number of books recount Taussig’s resistance to open-heart surgery, and I heard about it firsthand from Dr. Michael Freed, Dr. Welton Gersony, Dr. Eugenia Doyle, and others.

  3. My interviews with Dr. Malm were all over the telephone; when we met in person, he was very gracious, very funny, and very intimidating and dispensed with me quickly.

  4. “Median” and “vertical” are from Malm et al., “An Evaluation of Total Correction,” 86.

  5. I’m grateful to Dr. David Hoganson, a heart surgeon at Boston Children’s, one of the few pediatric heart surgeons in the world who is also a congenital heart defect patient; he described to me the trabeculated interior of the heart.

  Chapter 4

  1. For the phrase “Knights of Taussig,” see Joyce Baldwin, To Heal the Heart of a Child: Helen Taussig, M.D. (New York: Walker & Co., 1992).

  2. William Safire, “Holmes’ Horse’s Dogs,” New York Times, February 7, 2002; Thomas Morris, in The Matter of the Heart (New York: Thomas Dunne, 2017), points out that the word “tetralogy” is used to refer almost always to works of art and almost never to physiological conditions and that “tetrad” would be more appropriate.

  3. The phrase “well balanced” comes from an interview with Welton Gersony.

  4. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus, and Giroux, 1977), 6; Menninger quoted in Sontag, Illness as Metaphor, 6.

  5. Lorrie Moore, “People Like That Are the Only People Here,” in Birds of America (New York: Knopf, 1998), 220.

  Chapter 6

  1. I have not found the phrase “The Open Heart Club” in any printed materials, but I remember it and the confusion with the title of the Beatles album; the phrase could not have originated in my family, and someone must have said it at the assembly.

  2. As early as Maude Abbott’s 1936 Atlas of Congenital Cardiac Disease (the first book to describe the varieties of congenital heart disease), tetralogy was described as the most common complex congenital defect (see p. 141 of this book); a good general guide is “Facts About Tetralogy of Fallot,” Centers for Disease Control and Prevention, https://www.cdc.gov/ncbddd/heartdefects/tetralogyoffallot.html. I’m grateful to physicians who have described the condition to me again and again over my life, but I’m particularly grateful to Welton Gersony, who is the cardiologist quoted on p. 37; one of the best sources for descriptions of congenital heart defects is the Mayo Clinic’s website: https://www.mayoclinic.org/diseases-conditions/congenital-heart-defects-children/symptoms-causes/syc-20350074.

  3. The “sew together two farts” quote comes from an elderly cardiologist, sitting slightly off-screen, in a video of a Boston Children’s Hospital interview between Dr. Michael Freed and Dr. Abraham Rudolph; I’m grateful to Dr. Wayne Tworetsky for providing me with the video.

  4. There’s a good description of Mustard’s organic heart-lung machine in James S. Forrester, The Heart Healers: The Misfits, Mavericks, and Rebels Who Created the Greatest Medical Breakthrough of Our Lives (New York: St. Martin’s, 2015), 57.

  5. I’m grateful to Dr. Gersony for the “100 percent mortality rate” line; for a biography of Mustard, see Oktay Tutarel, “Profiles in Cardiology: William Thornton Mustard,” Clinical Cardiology 29 (2006): 424–425; also see Canadian Medical Association, “Mustard’s Operation,” Canadian Medical Association Journal 93 (1965): 372; Forrester, The Heart Healers, also covers Mustard’s career.

  Chapter 7

  1. For “done in lieu of the Blalock,” see this book, p. 245.

  2. On the percentages: as noted, Himmelstein had an over 50 percent mortality rate. For Kirklin, the rates progressed from an initial 50 percent on open-heart surgery to correct atrial septal defects, a rate that lowered rapidly as the 1950s ended and the 1960s began (see interview with Kirklin in Alan B. Weisse, Heart to Heart: An Oral History (New Brunswick, NJ: Rutgers, 2002]). For complex conditions like tetralogy, however, mortality rates remained higher; according to Malm et al., “An Evaluation of Total Correction,” the mortality rates among tetralogy correction in 1963 ranged from 16 to 35 percent.

  3. Gersony’s description of Gross’s early failures were confirmed by Abraham Rudolph.

  4. Sylvia Griffiths told me she only went to Cotuit once.

  5. On Lillehei’s drunkenness, see Denton Cooley’s 100,000 Hearts: A Surgeon’s Memoir (Austin: University of Texas, 2012), 244.

  Chapter 8

  1. See “Dr. Dorothy Hansine Andersen,” in Changing the Face of Medicine, US National Library of Medicine, National Institutes of Health, https://cfmedicine.nlm.nih.gov/physicians/biography_8.html.

  2. Additional notes on Malm are from Leora B. Balsam and Abe DeAnda, “Historical Perspectives of the American Association for Thoracic Surgery: James R. Malm,” Journal of Thoracic and Cardiovascular Surgery 146, no. 3 (September 2013): 501–503.

  3. John Norman, “Histrionics, Vignettes, and Quartets: A Syndrome of Stress in Heart Surgeons,” Cardiovascular Diseases, Bulletin of the Texas Heart Institute 7, no. 4 (December 1980): 339–343.

  Chapter 9

  1. The thumbnail history of the classical and early modern study of the heart in Chapters 9 and 11 covers so much history so quickly that it is inevitably full of distortions. The compacted history focuses on single well-known transfiguring men, like Galen, Vesalius, and Harvey, and tells the story as if it were one of straightforward progress; a closer view of the subject would reveal almost infinite complexities of progress and regress. Thanks to Daniel Brownstein.

  2. Egyptians, from Roy Porter, The Greatest Benefit to Mankind: A Medical History of Humanity (New York: Norton, 1999), 50; Crusaders, from Porter, The Greatest Benefit, 132; Al Nafis, f
rom Porter, The Greatest Benefit, 102.

  3. Shakespeare, Henry VI, Part 3, II:i, 82–88.

  4. For competition in Galen’s dissections, see Maud Gleason, “Shock and Awe: The Performance Dimension of Galen’s Anatomic Demonstrations,” Princeton/Stanford Working Papers in Classics Paper No. 010702, Stanford University, January 2007, doi:10.2139/ssrn.141427007.

  5. My discussion of anatomy from Galen to Leonardo da Vinci is largely drawn from Porter, The Greatest Benefit, 73–77, as well as from Charles Singer’s classic Short History of Anatomy and Physiology from the Greeks to Harvey (New York: Dover, 1957), and Thomas Wright’s excellent William Harvey: A Life in Circulation (Oxford: Oxford University Press, 2012), 30–31.

  6. For Servetus, see Porter, The Greatest Benefit, 184, which connects his burning at the stake to his hypotheses about anatomy. The extremely complex relation between Servetus’s ideas about the circulation of the blood and his heretical ideas (in both the Catholic Church and Calvin’s eyes) about the Holy Trinity is, again, one of those subjects well beyond the scope of this book.

  Chapter 10

  1. Menninger quoted in Sontag, Illness as Metaphor, 46–47; Schopenhauer in Sontag, Illness as Metaphor, 43.

  2. Kafka in Sontag, Illness as Metaphor, footnote 44.

  3. Frigyes Karinthy, Journey Around My Skull (New York: New York Review of Books Classics, 2008), 85.

  4. Average tetralogy at 75 percent, from Dr. Rush Waller at 2017 ACHA conference in Orlando.

  5. My thumbnail history of adult congenital cardiology comes from conversations with Dr. Ali Zaidi, Dr. Michael Freed, and Dr. Marlon Rosenbaum, all dates and numbers confirmed by ACHA.