Instead of closing her hand around the tablets to swallow them, she looked me straight in the eye with a weary look of exasperation and disgust. Holding her gaze, she raised her hand upward, and with a flourish threw the DEC tablets forcefully, angrily, across the floor of the small room. She turned on her heels and marched out of the room. I never saw her again.
I was stunnned and, for a moment, indignant. Didn’t she know we were offering her the standard treatment, recommended by the experts at the WHO, for LF infection? Did she not recognize the efforts our CDC team had made to travel to Haiti and provide what limited care we could? How dare she waste those tablets when other infected patients could have benefited from them! Didn’t she know her lymphedema could get worse if her infection was not successfully treated? But the fire in her eyes soon made me realize that she understood, at a level that I had not yet accepted, that our drug treatment, the international “standard of care” from the experts who advised WHO, would do nothing to prevent her acute attacks or her leg from swelling further—nor would it reduce the stigma and social isolation that she was already experiencing. She had been offered pills before, with no effect. She knew that for her, and we would later learn for tens of thousands of other patients as well, DEC alone would not meaningfully change her disease. She was unimpressed by these foreigners who had encouraged her to come to the hospital clinic with the promise of hope, but instead only took her blood for tests, made a few measurements, and offered some pills that would be of little or no benefit. We were wasting her time. She knew she needed more than DEC—we just didn’t realize it yet.
An Eastern proverb says that when the student is ready, the teacher appears. This young woman had become my teacher. I could not shake her fierce gaze. She had opened my eyes and forced me to see that our scientific theories, academic publications, and travel to exotic places to do research offered little real hope to her or millions like her. My fundamental assumptions—not just about how LF does what it does, but also about what exactly I thought I was doing—needed serious rethinking.
When the student is ready, the teacher appears. The young Haitian woman prepared me to receive with an open mind the instruction of another teacher. Gerusa Dreyer is a dynamic Brazilian physician whose astute powers of clin-ical observation and compassionate care for thousands of patients led her to a new understanding of LF. She came to question the dominant theory that acute attacks were caused by the body’s own response to the adult worm. To Dr. Dreyer, many of these attacks looked just like common bacterial infections of the tissue known as cellulitis. Her research showed that breaks in the skin and sores on the feet and legs allowed bacteria to enter, and that poor drainage through the diseased lymphatic channels allowed the bacteria to flourish. In other words, the disease caused by the worm predisposed the patient to the bacteria, which in turn caused the acute attacks. That’s why DEC alone could never work in that young Haitian woman. In her own dramatic way, that’s what she was trying to teach me.
If acute attacks were due to bacteria, they might be preventable! Extend-ing her research, Dr. Dreyer showed that progression of lymphedema to elephantiasis could be halted, and in many cases reversed, by a simple regimen of hygiene and skin care (to treat and prevent the breaks in the skin that could allow bacteria to enter), movement, and leg elevation. She organized “Hope Clubs” to teach her patients self-care and to overcome their social and emotional isolation.
I arranged to travel to Recife, Brazil, to visit Dr. Dreyer and to see for myself what she was doing. All too aware that her message of hope went against the grain of what medical scientists thought possible at the time, she insisted on two things before she allowed me to visit. First, I must learn enough Portuguese to converse with and understand the patients as they described their experience. Second, if I was convinced by what I saw, I must promise to do what I could to bring these teachings and practices to Haiti.
A “Hope Club” happened to be scheduled on the day I arrived in Recife. I was astonished by the festive atmosphere and by the palpable sense of empowerment, community, and, yes, hope that pervaded the room. Many of these patients had advanced lymphedema, but they were animated, joyful, engaged. I spent several days in the clinic, learning from Dr. Dreyer’s team, speaking with patients, and learning her simple but profound lymphedema self-care techniques.
I was so deeply moved by this experience that I dedicated the next twelve years of my life to this cause. With Dr. Dreyer’s help, my colleagues in Haiti established a lymphedema management program there, along with Hope Clubs and support groups. Together with others, we did studies to demonstrate the effectiveness of these techniques, participated in lymphedema train-ing for health workers around the world, and pushed for this type of care to be considered an integral part of the WHO program to eliminate LF as a public health problem. No longer would we be handing out DEC tablets alone to treat lymphedema or elephantiasis.
It is possible—indeed likely—that I would have done none of this had I not experienced the defiant gaze of the young woman in Haiti. The power of these individual encounters, and the meaning they convey, are a rich source of inspiration for global health action. Global health is a complex, somewhat chaotic system of international agencies, governments, non-governmental organizations, and foundations, often with competing priorities. So much less would be achieved through these organizations were it not for the networks of trust, respect, and—why not say it?—love that join people together in common purpose. The qualities that motivate global action to relieve suffering are so often inspired and nurtured by the memory of a particular encounter with an individual.
During the past several years, what we used to call “international health” has been replaced by “global health,” which is grounded in the realization of human interconnectedness. The epidemics of HIV/AIDS, SARS (severe acute respiratory syndrome), and Ebola virus—to name only a few—have shown us how deeply interdependent our health and health systems are. In a real sense, the distinction between global and local has virtually disappeared. For example, Chagas’ disease, a parasitic disease spread by bugs that live in thatch roofs and walls, was once limited to Latin America. The debilitating heart failure and premature mortality caused by Chagas’ attracted little attention elsewhere. However, with immigration and global travel, Chagas’ disease is increasingly recognized as a public health problem in the United States and Europe. What was once a local problem now requires a global solution.
The miracle of global health lies in the power of an individual face, an individual encounter, to transform a heart, change a life, and inspire a career that alleviates human suffering on a global scale. Global health is an expression of this rich interplay between the faces and the numbers, individuals and populations, global and local, the whole and its parts. In the busy day-to-day work of global health, immersed in programs, numbers, and bureaucratic challenges, it is easy to lose sight of the faces. In the words of Catholic theo-
logian Gustavo Gutiérrez, we must continually drink from our own wells. The living memories of our individual stories make possible the refreshing waters of renewal and regeneration.
Spiritual teachers through the ages have pointed toward our human interconnectedness and the need to have compassion for all. To paraphrase the words of Mother Teresa, they teach us to draw the circle of our family ever more widely. Thousands of years ago, when humans still lived in small bands of hunter-gatherers, such a universal vision would have seemed incomprehensible, unnecessary, and even dangerous. It is still not an easy vision to practice. However, we now realize that adopting this vision is essential for the future of the planet. Global health is in the vanguard of carrying forward, in practical ways, this universal spiritual vision. It is this vision that is inscribed on the wall at WHO and inspires the 59 million people dedicated to global health care.
The face of the young Haitian woman with lymphedema remains with me still. I do not know what became of her. Did she e
ver benefit from the lymphedema management programs that were established in Haiti? I don’t know. I do know that, if she has children, they are growing up free from the threat of LF, as are millions more around the world, thanks to the efforts of a vast army of community health workers, government health officials, and non-governmental organizations. And now, hundreds of thousands of people with lymphedema in dozens of LF-endemic countries are learning the self-care techniques that Dr. Dreyer developed and taught.
I am grateful for what the young Haitian woman taught me and grateful for the millions of people from all walks of life whose courage, wisdom, and insight continue to inspire the field of global health.
To learn more about the work of global health, see:
Koplan, J. P., Bond, T. C., Merson, M. H., Reddy, K. S., Rodriguez, M. H., Sewankambo, N. K., & Wasserheit, J. N. (2009). Towards a common definition of global health. Lancet, 373, 1993–1995.
Addiss, D.G. (2013b) Global elimination of lymphatic filariasis: A mass uprising of compassion. PLoS Negl Trop Dis. 7(8): e2264. doi:10.1371/journal.pntd.0002264.
Addiss, D.G. Globalization of compassion: The example of global health. In: Gill S and Cadman D, eds. Why love matters: Values in governance. New York, NY: Peter Lang Publishing 2016; 107–119
8
Miracles in Their Own Time
As medicine advances, yesterday’s miracles can become today’s expected outcomes. Often, a miraculous event in its time accelerates our progress toward turning the mirac-
ulous into the mundane. The results of new research, the advent of new technology, and the accumulation of clinical experience all contribute to that transition.
The stories in this chapter reflect on miracles in the context of their period in history and with an eye toward the future of medicine. Indeed, when in the course of history a medical event occurs often determines the outcome of that event. The first essay is the dramatic firsthand description of Patrick Kennedy, the premature baby born to President John F. and Jackie Kennedy. Even the most powerful man in the world could not call forth a miracle before its time.
Other essays reflect on the evolution of medicine over time and illustrate the striking transition from miracle to everyday occurrence. Examples include heart disease, sudden infant death syndrome, inborn errors of metabolism, AIDS, breast cancer, and battlefield medicine.
It is most rewarding to know that as we push the enve-lope with each new advance in medicine, ample room for new miracles emerges.
Date of event: August 7–9, 1963
President Kennedy’s Baby: Born Too Soon for the Miracle
Richard Johnston Jr. MD
It was the summer of 1963, and I had begun the third year of my pediatrics residency training in July at Boston Children’s Hospital, Harvard Medical School. John F. Kennedy had been elected President of the United States in November 1960 and had assumed office in January 1961. He and his wife, Jacqueline Lee Bouvier Kennedy (Jackie), were parents of a daughter, Caroline, five years old that summer, and a son, John Jr. (“John John”), who was two.
My July assignment was in the newborn nursery at the obstetrical hospital, Boston Lying-In. It was a busy nursery, housing babies born to mothers at that hospital. Most of the babies were normal and healthy, but some had birth defects or were born prematurely, before a completed pregnancy. Babies needing surgery or special care were transferred to a nursery at Children’s Hospital across the street.
One of the most common and most feared complications of prematurity was a lung disorder called hyaline membrane disease (HMD), now known as respiratory distress syndrome. The condition is characterized by a glassy coat-ing (membrane) in the baby’s air sacs that obstructs the normal transfer of oxygen from the lungs to the circulating blood. Affected babies develop rapid, shallow, and noisy breathing, and a frightening blue-gray skin color as they struggle to take in enough air. Without treatment the affected baby is caught in a desperate battle that can end in death if his respiratory muscles and energy reserves wear down before the lungs improve.
There was no effective treatment for this disorder that summer, nor was there clear understanding of its cause. We knew HMD was more common in babies born by cesarean section and in boys. No racial or ethnic group was spared. My wife had delivered our first son nine months earlier, thankfully at full term. I knew well the intense feelings of expectation and anxiety evoked by the birth process, and caring as a resident for a preterm baby with HMD was a sad, frustrating, and anxious experience for me.
Early in my assignment at Boston Lying-In, I learned that the pediatricians there had experimented with placing several HMD babies that they felt would otherwise die into a high-pressure (hyperbaric) chamber located beneath the garden that was part of the Children’s Hospital grounds. Under increased pressure, the oxygen given a baby could pass easily through the obstructed lungs into the circulation. The chamber was normally used at Children’s to keep blood oxygen levels high during complicated heart surgery and as treatment for certain types of severe infection. The babies with HMD treated experimentally in this chamber quickly lost their blue color and relaxed their struggle as their blood oxygen reached levels several-fold higher than those of a normal infant. In a matter of hours, however, the babies’ condition had rapidly worsened, their breathing had again become shallow, and all had died.
On the first of August, I moved across the street to the oncology service at Children’s Hospital. By August 7, I was embedded in my responsibilities on this new service when we heard that Jackie Kennedy had delivered a boy by caesarean section at an Air Force hospital near the Kennedy family compound on Cape Cod. He was Patrick Bouvier Kennedy, born five and a half weeks prematurely, weighing four pounds, ten and a half ounces, with HMD; and, he was on his way by ambulance to Children’s Hospital. Shortly after his arrival at Children’s, the President landed by helicopter in the Fenway, a park area near the hospital. It was clear on Patrick’s arrival that he was in severe respiratory distress.
Early the next morning I was standing in the doorway of the nursery when the President came around a corner and nodded a quiet greeting. There was no smile. I think I had enough presence to respond, but I remember clearly the sense that I had been momentarily stunned. I thought it remarkable at the time that he was alone. He had been accompanied by very few Secret Service agents when he entered the hospital the evening before. Times were different then, but the lax security around the President and his apparent lack of concern for his safety would cost him his life three and a half months later.
Patrick’s condition deteriorated over the course of that day, and it appeared that he would die unless something more effective could be done. Hyperbaric oxygen delivery was deemed the only remaining hope, and he was placed in the chamber late that day. As with the other babies, his color returned to normal quickly, his respiratory distress dissipated, and his condition stabilized—until early the next day when his struggle returned and he died. A fellow resident told me that the President’s brother Bobby, the United States Attorney General at the time, had sat at the entrance to the hyperbaric oxygen chamber and grilled the residents as they came in and out caring for the baby.
I remember that Children’s Hospital was quiet and sad that morning. It felt to me that we had failed a fine young mother and father. There was no miracle here, not even for a President’s son.
Research that had begun a few years before Patrick’s birth had indicated that HMD was the result of deficiency of a substance in premature babies’ lungs. Subsequent basic research identified that substance as surfactant, a slippery lipid-protein mix that allows the lung’s air sacs to open and fill with air. Surfactant develops in the later stages of pregnancy; the smaller the premature baby, the greater the surfactant deficiency. Clinical research that followed the basic science defined the most effective preparations and strategies to replace the missing surfactant.
I believe that “medical
miracles” have a biologic basis that can be discovered through research. Discovering the basic causes of disease leads to their treatment. Even babies born much more prematurely than Patrick Kennedy are alive today because of the research that came too late to save a President’s son.
Patrick was born too soon, five and a half weeks before full term maturity would have made the risk of HMD negligible, and a few decades before the product of basic science and clinical research would have easily saved his life.
Date of event: December 1944, and 2013
Battlefield Miracles, from Generation to Generation
Paul A. Skudder, MD
December 16, 1944, began the Battle of the Bulge in bitter, near-arctic conditions of an unusually harsh Northern European winter. The German Wehrmacht (war machine) waited for near-impenetrable fog, snow, and freezing rain to send almost a quarter million soldiers, backed by all the panzer tanks the Russians hadn’t obliterated on the Eastern front, into a poorly defended segment of the American lines in Belgium, just west of Germany.
General George Patton and the United States Third Army’s heroism in saving the thousands of men cut off in the city of Bastogne, and the massacre of American POWs in Malmedy, are well known. Reversal of this attack took over a month, at a cost of 19,000 American soldiers’ lives, over a third of the death toll of ten-plus years of fighting in Vietnam, and many times the number killed in Afghanistan and Iraq in the recent wars. Seventy-thousand other American GIs survived being wounded in those bitter winter condi-
tions. A portion of them were treated for ghastly wounds at the 16th General Hospital, a freezing cold tent facility of 1,000-plus beds located just north of the “Bulge” itself, outside Liege, Belgium, near the German border.
Miracles We Have Seen Page 23
