Patrick Bouvier Kennedy: A Brief Life That Changed the History of Newborn Care

Bibliography

Acknowledgments

My deepest gratitude goes to James Drorbaugh, MD, William Bernhard, MD, and James Hughes, MD, who freely discussed with me their highly personal associations with Patrick Bouvier Kennedy, the details of which, before this volume, had never been spoken of publicly. The three physicians were at the center of the Patrick Bouvier Kennedy medical crisis as it unfolded. Their generous allotment of time for personal meetings, phone calls, and tape-recorded conversations has resulted in interviews printed in the rear of this book. Offering many unique details surrounding the life and death of Patrick Bouvier Kennedy, their substantial contributions to this book are immeasurable and my debt to them incalculable.

I have also benefited from the help and encouragement of other people. A special acknowledgment goes to Nicholas M. Nelson, MD (1922– 2014), whose death I mourned during the final stages of this book. I met Nick, a pioneer in neonatal physiology, halfway through the writing of this book. His critique of earlier drafts and enthusiastic encouragement combined to help propel the project forward. He was a beacon in the discipline of neonatal respiratory care, and I hope the final version of this book would have elicited Dr. Nelson's approval.

My deepest admiration also goes to Will Cochran, MD, a pediatrician at the Boston Lying-in Hospital (now the Brigham and Women's Hospital). Although Dr. Cochran happened to be on vacation when the Kennedy baby arrived, his generous input and anecdotal reflections on the care of preterm babies in the late 1950s and early 1960s were invaluable in allowing me to set the tone of the early Boston special care nursery.

Special thanks also to Dr. Welton Gersony, former Alexander S. Nadas Professor of Pediatric Cardiology at Columbia University and director of pediatric cardiology at Morgan Stanley Children's Hospital. As a pediatric cardiology fellow in 1963, Dr. Gersony's eyewitness account of those gathered around the president's baby embodies the kind of moment in which a writer takes great joy.

I am also deeply indebted to Avroy Fanaroff, MD, a Virginia Apgar awardee, coeditor of Care of the High Risk Neonate, and coauthor of Fanaroff and Martin's Neonatal–Perinatal Medicine, who kindly took the time to express his view on the impact of Patrick's untimely death on modern neonatal care.

I would also like to thank everyone who read all or part of my manuscript: Bob Baker, Lin Thompson, RN, Kimberly Cheng, RN, David Cheng, MD, Michael Indgin, Michael Lash, Carolyn Ward, Keith Kolber, MD, Michelle Henry, MD, Glenda Minjares, RN, and Mace and Carolyn Perlman. A special thanks also to Laurie Kney, for her graphic design work.

Also a very special thanks to Elizabeth Kaye, whose editorial eye for clarity and content helped me to shape this book. Her encouragement to stay the narrative course, while avoiding lengthy expositions, added immensely to the quality of the manuscript.

My tremendous appreciation also goes to Holly Montieth, my extraordinary editor, who not only regularly reassured me when I became uncertain but whose expert eye for detail and flow helped guide the book to its final presentation.

I also wish to acknowledge the numerous medical historians, scientists, and academics whose books and papers offered me the historical commentary necessary to support my research, all of whom are cited or listed in the rear of the book.

Finally, thanks to my wife, Judy McLaughlin-Ryan, for her patience and unflagging support during the writing of this book, as throughout our entire marriage. Judy was also my first draft reader and the first to point out my narratives gone astray. Her simple acts of keeping my health and well-being balanced throughout the writing of this book revealed a steadfast dedication to the vows of Holy Matrimony that we undertook some twenty-odd years ago. On the day we met, as now, there remains something deeply touching and appealing in her nature, and it is with honor and humility that I subject her to a similar loyalty affirming my marital promise until death do us part.

Introduction

In the summer of 1989 at three o'clock in the morning, I was standing inside a neonatal intensive care unit watching a baby nearing death. I was then, as now, working as a registered respiratory therapist specializing in newborn care; the baby, whom I will call Christy, was born at thirty-four weeks' gestation and weighed four and a half pounds, or 2,050 grams. She was only three hours old and breathing at a rate well past a hundred breaths a minute. Despite being on a ventilator and receiving 100 percent oxygen, the little girl's skin color was pale and blue. I held in my hand a small vial of fluid containing a milk-like substance that carried the trademark name of Survanta and was, at that time, a new drug. Created from minced bovine (cow) lung containing pulmonary surfactant used to treat infant respiratory distress syndrome, it had been in the making for more than twenty years. I squirted it directly into a breathing tube leading into Christy's lungs.

Within seconds, the baby's skin color went from blue to pink, and her breathing rate quickly descended into a more normal range. Standing at the head of the bed with me that morning was an attending neonatologist. We marveled at the rapidity of the drug's effect, at the way it had changed this mortally ill infant into a newborn flush full of life and health—and had done so within seconds.

Standing shoulder to shoulder with this veteran doctor, I could tell that he was as thrilled as I was by the baby's remarkable turnaround.

The doctor then remarked, The Kennedy baby died at thirty-four weeks' gestation, and look at this now!

I replied, The Kennedy baby? Who's that?

He was the president's baby boy who died from respiratory distress syndrome. He's the one who started it all.

Looking back now, the doctor's offhand remark about the one who started it all summarizes Patrick Bouvier Kennedy's contribution to newborn care research and would, twenty years later, lead me to write this book. Despite the fact that, for decades, researchers worldwide focusing on respiratory care of the premature infant would often cite respiratory distress syndrome as the disease that killed the president's son, more than fifty years since Patrick's death, no one has told the entire and dramatic tale of Patrick's doomed struggle for life, of his parents' consummate grace and courage in the face of tragedy, and of how his death came to impact modern newborn care.

Blessed with the enormous good fortune to acquire the very first, full-length interviews with physicians directly involved in Patrick's care, I use their firsthand testimony to add immensely to the riveting story of the event that started it all.

How It All Started

On August 7, 1963, Patrick Bouvier Kennedy was born the second son of President and Mrs. John F. Kennedy. The birth of the baby to an enormously popular presidential couple created an immediate national celebration, and its effect was felt worldwide. Three days later, it was announced to a startled public that Patrick, at thirty-four weeks' gestational age, had died from a common lung ailment known as hyaline membrane disease (HMD), now called respiratory distress syndrome (RDS).

The heavily publicized event provoked a strong worldwide political and social reaction. News of Patrick's death took precedence in all major American and European newspapers, prompting personal letters of condolence from countless heads of state and religious leaders, including Pope Paul VI. The Soviet news agency Tass, then an instrument for the promotion of anti-Western bias, compassionately included the tragic news in its daily broadcast. The White House sent out more than thirty-five thousand acknowledgments in response to cards received from people unknown to the Kennedys, expressing condolences over the lost infant.

Capturing the emotions of a public that loved its president and first lady, Patrick's death was soon lost to public memory only a few months later by his father's death in Dallas. However, the stage had been set. Patrick's death focused national attention on the malady that killed him, RDS, which, at the time, claimed the lives of twenty-five thousand babies a year in the United States alone. The scientific investigations that would follow the little boy's brief life would spark a revolution in newborn medical research, resulting in the saving of thousands of babies per year, a legacy that continues.

The Legacy of a Brief Life

What began as a book about the Kennedy baby's life would, by necessity, expand into the much larger field of newborn history. By including beginning chapters devoted to a history of newborn care, placing emphasis on the West, in particular, on America, my intent is to acquaint the reader with the larger social context in which the crucial moments of Patrick's life took place. The historical overview, however brief, suffices to help the reader gain perspective on how the prevention of infant deaths by RDS is a relatively new concept in clinical medicine.

Patrick's death in 1963 brought focus to a process of development that began in 1903 with the discovery of a lung ailment that was fatal for infants. Starting as a series of discoveries known only to a few scientists working within the narrow field of newborn lung disease, there was little physicians could do to intervene in the lung disease process. The government did not take the problem seriously, and the public was unaware of how many babies died as a result of RDS until Patrick's death in 1963.

RDS, in claiming its most prominent victim while drawing public focus onto the lung ailment, would also invigorate scientific investigation into its cause. The consequences of those actions would lead the National Institute of Child Health and Development (NICHD) to announce, in 2012, in a listing of long-range mission and scientific accomplishments, that since becoming operative in 1963 under the Kennedy administration, the NICHD highlights as its number one accomplishment [that] the survival rates for Respiratory Distress Syndrome have gone from 5% in the 1960s, to 95% today.¹

Because Patrick lived and died, many infants born today with RDS are no longer living under a death sentence. Today, countless infants who suffered from RDS have been spared and gone on to lead healthy lives as a direct result of Patrick's tragically brief but significant existence.

Overview

Although I was assisted by many special individuals, the writing of this book was foremost a solitary pursuit, an undertaking that spread itself over a long period of time. During this time, my keen interest in the project was augmented by my continuing work as a newborn intensive care unit (NICU) respiratory care practitioner based in a Los Angeles inner-city hospital. My goal in writing the book was to help clarify the link between Patrick Bouvier Kennedy's death and its impact on newborn lung research and how these studies would advance respiratory care of the newborn, leading to improved survival of the preterm baby.

In my attempt to address the book to a general audience, I paid careful attention not to inundate the reader with technical details. For the historian and those familiar with clinical newborn care, there are areas of the book where extrapolations of scientific and historical detail were avoided both to help the flow of the story and to minimize the inevitable misunderstandings such details would arouse in the general reader. Beginning with chapter 6 and continuing to the end of the book, much of my source material is taken directly from interviews I conducted, which are printed in the back of the book.

Because the history of newborn care touches so much human activity over such a large span of time, no single book could include everything and everyone, and so this book is not intended to be a complete treatise on the subject. For this reason, I apologize for any persons or aspects of newborn history that I may have omitted; for those wishing to investigate on their own, a bibliography of resource material is included.

The death of Patrick Bouvier Kennedy was a seminal event in the history of neonatal care. His death spurred the creation of what is now the Shriver National Institute of Child Health and Human Development, which accelerated research that has been translated from the bench to the bedside. Within a decade of his death, there was a much better understanding of respiratory distress syndrome, resulting in a more rational approach to therapy and better outcomes. The development of ventilators specifically designed for neonates and the introduction of CPAP [continuous positive airway pressure] dramatically improved survival rates, which increased even more with the introduction of surfactant therapy some twenty years later.