Patients and families, grateful for the miracles they’ve received, may seek to channel that gratitude into meaningful action on behalf of others. Those actions can have dramatic impacts and help create miracles of the future. Three of the essays in this chapter describe such phenomena—the amplification of one miraculous outcome to create many more.
Two other essays describe young people, the beneficiaries of medical miracles in their own lives, who were then inspired to pursue medical careers that have benefitted countless others.
Date of event: 1995
Sharing the Miracle of Hope
Trevor J. Bayliss, MD
I never thought I’d end up being a doctor. I never even thought I’d survive long enough to graduate college. But today I am an oncologist, a physician specializing in the treatment of patients with cancer. Twenty years ago, I was a college freshman diagnosed with terminal cancer, given only weeks or, at most, months to live. My survival was a miracle, for which I’m grateful every day. This is my story.
* * *
I had been a star runner and ice hockey player in high school. Competing in those sports had become a passion and a part of my identity, and when I enrolled at Williams College I had plans to continue my athletics. But as soon as I began training with the cross-country team in the fall of my freshman year in 1994, I knew something wasn’t right: I was too easily fatigued, couldn’t maintain the times I had run in high school. The same thing happened when I tried to play hockey that winter. I was exhausted, no energy, and felt drained after every practice.
In the spring when I went out for track and field, I also noticed my abdomen was getting bigger. Others noticed, too. During a swimming pool workout with the track team, my coach called out, “You look like you’re pregnant, Bayliss.” Indeed, I did look pregnant, but it turned out the growth inside of me was my spleen, which had enlarged to massive proportions. The spleen is the organ in our body that filters our blood; when it gets clogged, it swells.
In the summer of 1995 a thorough medical evaluation discovered I had a rare (fewer than 100 cases each year in the United States) form of blood cancer, called T-cell LGL (for large granular lymphocytic) leukemia. I had surgery to take out my spleen, which the doctors said would make me feel better immediately, and it did. The surgeon told me it was the largest spleen he had ever removed, which for a naturally competitive guy like me, gave me a somewhat perverse sense of achievement. The extreme fatigue I had been feeling, the doctors explained, was surely due to the anemia caused by my blood cells being trapped in my enormous spleen, unable to filter through because of the leukemia cells that were clogging it.
Because most cases of this type of leukemia are very “indolent,” or slow-growing, my doctors didn’t feel I needed additional therapy at that time, in hopes the leukemia cells would remain dormant. I was put on a “watch and wait” plan, which was a difficult concept—knowing I had cancer inside of me, but doing nothing about it. Things continued okay through my sophomore year of college; it seemed I did have the usual indolent version of this leukemia. Although unable to participate in sports, I was feeling well overall. Yet I was always anxious about the idea of this disease lurking inside of me.
As my junior year of college began, friends began commenting that my lips looked a little bluish. One day I climbed half a flight of stairs in my dorm and found myself hunched over trying to regain my breath. I was startled by that event and went back to my doctor, who saw suspicious shadows on my chest X-ray, confirmed abnormalities on a chest CAT scan (a special type of X-ray), and suggested a lung biopsy. The biopsy found the leukemia had infiltrated my lungs and, by so doing, declared itself to no longer be “indolent.” Further testing found leukemia cells in my liver as well. “Watch and wait” would no longer be sufficient.
Unfortunately, my version of T-cell LGL turned out to be unusual in a number of ways, not the least of which was that it usually occurred in sixty-year-olds, and I was nineteen when I was diagnosed. But much worse, although T-cell LGL usually is either aggressive from the beginning or indolent throughout its course, tests showed that what was initially behaving as an indolent leukemia in me had transitioned to the aggressive form seemingly overnight. My oncologist said I needed to start chemotherapy immediately, a combination of four drugs that I tolerated pretty well except for a day of fever, predictable with each cycle of treatment, and some general fatigue. I didn’t have to be hospitalized for the therapy and I was still able to attend a couple classes during November and December of my junior year. But the cancer didn’t disappear on this chemotherapy protocol, and my doctors said a bone marrow transplant was my only hope of surviving this now-aggressive form of T-cell LGL.
I traveled with my mom to a famous cancer and bone marrow transplant center on the West Coast where I would receive the transplant. Bone marrow transplant replaces a patient’s bone marrow (where blood cells are made, and this type of cancer resides) with an infusion of bone marrow stem cells from a matched donor. Although I didn’t have a match in my family, the National Bone Marrow Registry located a match from an anonymous donor. Bone marrow transplant is a dangerous procedure for many reasons. Before the transplant, the patient has to have very intensive rounds of chemotherapy, much harsher than what I had received before, in an attempt to wipe out every cancer cell before the transplant. The chemotherapy also wipes out a lot of normal cells. I went through this treatment and became very debilitated, physically and emotionally. Following the intense chemotherapy, a patient must then have whole body radiation to wipe out his immune system so his own body won’t reject the transplanted bone marrow. Without an immune system, a patient is prone to serious infections. Finally, after the transplant, the new bone marrow itself can attack the patient’s body, something called graft-versus-host disease.
Following my chemotherapy, though, all of those concerns about the additional dangers of the upcoming bone marrow transplant became moot. A meeting was called one week before the scheduled transplant with me, my mom, the oncologist at the cancer center, and a nurse. The oncologist entered the room quietly and sat across the table from me. I could quickly tell by her awkward manner and the uncomfortable look on her face that this was not going to proceed according to plan. Something had happened. My cancer had not responded well even to the intense chemotherapy of the past weeks; it was now advancing in my lungs, reducing the amount of oxygen in my system. I needed to receive supplemental oxygen from a tube in my nose hooked up to a portable oxygen tank. And then the final blow: because of these new developments and the results of the latest round of tests, there was now a 95 percent chance the bone marrow transplant procedure, if performed, would fail and perhaps even kill me. There were no good options left. After a painful silence in the room, I asked the question cancer patients given terminal diagnoses often ask: “How long do I have?”
The oncologist’s answer: “Months, maybe only weeks.” As I absorbed the words I felt a lump forming in my throat, tears welling in my eyes, and I knew I had about three words I could get out without completely breaking down. I turned to my mom, who was obviously devastated by the news, and said, “Let’s go home.”
The night after my meeting with the doctor I lay in bed crying, for the first time accepting that I may die very soon. As I did, I surprisingly felt a peace come over me, a lifting of the fear. And just as quickly I found myself planning for the future. Initially it was only the immediate future of getting home and seeing my family and friends. As I flew home two days later, at 30,000 feet wearing oxygen, I replayed in my head that last meeting at the cancer center. I realized how hard it must have been for the doctor to say what she had to say, but at the same time, I found myself thinking, I could do that well. I could do that better, and with more compassion, than that doctor had done. As sick as I was, leaving there with no hope, that was the first inkling I had that I wanted to be a doctor, I wanted to help people with cancer. How impossible, even delusional, that felt at the time.
The oncologist’s answer to my “how long” was what we now call “evidence-based,” meaning that it comes from careful analysis of scientific data from published medical literature and from doctors’ own experience with their patients. It’s an average, a bell-shaped curve. At the middle of the curve, patients in my situation survived weeks to months, just as the doctor had said. But there was something about how the oncologist said it that disturbed me; I was not a statistic. There must be factors that determine which patients live longer than the average, and which live shorter than the average. As I wrote in the Dartmouth Medicine magazine several years later:
Perhaps it’s the biology of their cancer cells, or perhaps certain personality or attitude traits. I tended to hold to the latter view and believed that if I faced my illness forthrightly, meditated, visualized, and fought, I’d be among those who lived longer than average.
Some doctors stayed away from statistics, and I preferred that even more. The ones who used statistics wanted to place me right on the average and test my hope at each appointment. I understood that it was their duty to let patients know what they faced. I was even able to admit that my hope at times bordered on denial. But denial and hope are closely linked and, I think, often blur together.
Dartmouth Medicine Summer 2010
I returned without having the transplant that was supposed to have saved my life, the procedure that had been my only hope. I was going home to die. But, surrounded by family and friends, I couldn’t imagine dying. Throughout this ordeal, as serious as I knew my cancer was, I had never really confronted the possibility of death before. Sure, I had broken down and cried a couple of times, and in the back of my mind I knew things may go badly. But how could I die in my twenties? I really didn’t feel that badly; recovering from the assault of the chemotherapy, I seemed to be getting a little of my strength back. I knew I still had a runner’s healthy heart going for me. I saw my hometown oncologist and he agreed that I looked pretty good for a dying man. “You don’t look that sick.” I can’t tell you how important hearing that from him was to me, even if it was only meant to temporarily cheer me up. It was exactly what I needed to hear—and it was exactly how I felt. I didn’t feel like I was on death’s door. Indeed, “denial and hope are closely linked and often blur together.”
My hometown oncologist had spoken with an international expert in my rare cancer and had learned about a few patients with my type of cancer who had promising results with an experimental therapy using a medicine called methotrexate. In those few patients, the medicine had been given in relatively low doses and was well-tolerated. Methotrexate had been used for many years in patients with other conditions, including other types of cancers, but had never been studied in T-cell LGL. With nothing to lose, we decided to give it a try.
The results were dramatic. Within weeks I no longer needed my oxygen tube and tank, my blood counts were normalizing, and within a couple months there were almost no remaining leukemia cells in my blood. I went into a deep remission. To this day, seventeen years later, LGL leukemic cells can be found in my blood when viewed carefully under the microscope, but they are held in check.
My experience with my own cancer, and with the oncologist at the famous cancer center where I was told there was nothing more they could do for me, led me to my career as an oncologist. I graduated from Williams, actually competing at the NCAA National Championships as a senior on the track team. Just being on the track, able to breathe hard, able to breathe at all, was a victory. Winning the races I did was an unexpected bonus. I went on to Albany Medical College, and then did a residency and fellowship at Dartmouth-Hitchcock Medical Center in New Hampshire.
I am back to running for fun and in 5K and 10K races and have done a few marathons. My wife and I have three wonderful, beautiful sons. As an oncologist, I now care for patients with the whole spectrum of cancers; some of my patients are as young as I was when I was diagnosed. Every one of my patients pulls me back to my own experience, guiding me in how I speak to them and how I treat them. In a newspaper interview not too long ago, I said:
I think the biggest thing I took from my experience and try to apply to others is honoring their story and just trying to listen. When you listen that way and want to get to know who they are, I want to know how they feel when they heard they have cancer. If you enter each encounter from that mindset and remembering what it was like for me at each of those steps, to hear I have cancer, to hear I have no more options and being able to check back to that moment and think about it as I go into a room with a patient in invaluable.
USA Today, May 15, 2014
I see each day of my life as a gift, a miracle, and I try to help my patients see their lives that way as well. I know all too well how difficult that can be when in the throes of serious illness and receiving difficult treatments, but it’s become my personal mission in life.
To read the complete Dartmouth Medicine piece:
http://dartmed.dartmouth.edu/summer10/html/both_sides_now.php
To read the complete USA Today interview:
http://ftw.usatoday.com/2014/05/trevor-bayliss-williams-track-cancer-doctor-tbt
For more information about the National Bone Marrow Transplant Registry: https://bethematch.org/
Date of event: 2001–2003
A Disappearing Tumor Becomes a Source of Hope for Many
Bradley A. George, MD
While he was still in the womb, Brandon’s routine pregnancy ultrasound test showed a mass around his spinal cord. When Brandon was born, although the tumor was not visible from the outside, an MRI scan (magnetic resonance imaging is a way to see inside the body without using radiation) confirmed his parents’ worst fears: there was a mass around his lower spine that extended between the vertebrae (spinal column bones) into the spinal canal where the nerve roots run.
We explained to Brandon’s parents that this was most likely a rare childhood cancer called neuroblastoma, which originates in nerve cells. There are fewer than 1,000 cases of neuroblastoma diagnosed in the United States each year, and almost all of them occur in very young children. This can be a very aggressive, dangerous, and even lethal tumor, but as some kids get older, these tumors sometimes actually shrink or go away entirely. It isn’t possible to say with certainty which neuroblastomas will grow and spread and which will shrink or even disappear. Because of Brandon’s age and the location and appearance of the tumor, we felt Brandon’s neuroblastoma fit the category of tumor that had a good chance of spontaneously disappearing or “matur-ing” into a tumor that would no longer have malignant potential. He was additionally fortunate that the location of the tumor was at the lowest part of his spinal canal, beneath where the spinal cord ended, and therefore he was unlikely to have any problems with movement or bodily functions unless the tumor grew.
We recommended keeping a close eye on the tumor, holding off on surgery until we could determine whether it would grow or shrink. We explained that surgery in the spinal canal can itself be quite risky and could cause prob-
lems with nerve function, in addition to the risks associated with any surgery and anesthesia in a young baby—we felt careful observation was the best course for the time being. This is a difficult recommendation for any parent to accept. They know there’s a neuroblastoma tumor in their baby, they’ve read all about neuroblastomas, and they know these tumors can be very dangerous, even life-threatening, often requiring surgery, chemotherapy, and/or radiation. And although our past experience with cases like this, as well as published stud-
ies from other cancer experts, predicted a favorable outcome for Brandon’s tumor, we couldn’t offer a guarantee that the tumor wouldn’t grow or spread. If surgery was done now and there were no complications, Brandon might well be cured and not require any additional treatments. But, if we waited and watched, he might “cure himself,” sparing him the risks of surgery.
Brandon’s parents agreed, with understandable nervousness, to careful observation. Because the tumor wasn’t visible on the outside, we followed him with frequent MRI scans. The tumor appeared perhaps to be very gradually shrinking; at least we could reassure Brandon’s parents that the tumor wasn’t growing or spreading. But it wasn’t gone by any means. They knew there was still a potentially dangerous tumor inside their child’s body. Added to that was the fact that although Brandon seemed fine, there was nothing they could “watch” from the outside for reassurance on a day-to-day basis, and we didn’t have biopsy results to assess the exact type of tumor and “stage” of tumor we were dealing with—biopsy of a tumor in that proximity to the spine can itself be very hazardous.
When Brandon was eighteen months of age, we performed another MRI confirming the tumor was still there. At twenty-three months of age, in August 2003, Brandon developed fever and some bone pain, so we again repeated the MRI to make sure the symptoms weren’t due to tumor progression, but the tumor was still stable. At that point, Brandon’s parents began exploring the options for surgery. They contacted the excellent neurosurgery group at a major West Coast university medical center and arranged for Brandon to be assessed there for possible biopsy and surgery. Their first visit was in late August 2003. An MRI at that time again revealed a stable tumor. Brandon’s parents arranged for him to return to the West Coast university medical center in November 2003 for biopsy and/or surgery.
When they arrived in November, three months after the most recent unchanged MRI, and two years after the tumor was first diagnosed, Brandon had another MRI to help guide the surgeons for the procedure scheduled for the next day. The results stunned Brandon’s family and their doctors on the West Coast, who had reviewed all the previous scans and were preparing for surgery: the tumor was entirely gone, almost as if it disappeared mid-air on the flight from Atlanta.
Brandon’s parents considered this a miracle and, certainly, the timing of the tumor’s disappearance was remarkable and very fortuitous—just in the nick of time to spare the child the substantial risks of this type of surgery. But for those of us who had cared for Brandon in Atlanta, the miracles were just starting.
Brandon’s mom, Kristin, was a corporate attorney for a big law firm in town. She had spent the previous eighteen months in and out of our children’s oncology clinic waiting room, seeing all the kids who, like Brandon, had cancer. All types of cancer, few if any of which would “disappear” on their own. She met parents struggling with dire prognoses for their kids. Many of the kids playing with Brandon in the waiting area already had the severe telltale signs of chemotherapy or radiation or both. Others had undergone surgery or were about to.
Having a child escape the potential ravages of cancer and its treatment is more than enough to make any parent overjoyed and grateful. But, whereas most parents in that blessed situation would walk out of the oncology clinic with the relief of never having to confront those difficult days again, Kristin walked out of our clinic with a mission. First, she asked if she could help with fundraising for our program, which she did. A year following Brandon’s visit to the West Coast medical center, Kristin took a leave of absence from her law practice to become the Senior Vice President of Community and Business Development at a national childhood cancer nonprofit. She also became involved with a small, local charitable organization called Cure Children’s Cancer (CURE) that helped provide support for families of area kids with the disease. Following her early volunteer days with CURE, Kristin’s efforts became all-consuming. She never returned to her law firm, instead dedicating her life to helping find a cure for kids with cancer.
Three years after Brandon’s family’s momentous trip to the West Coast medical center, Kristin became the Executive Director of CURE, a position she has now held for nearly ten years. In that time, this small, local organization has become a national force in fundraising for children’s cancer care and research, raising millions of dollars each year. These desperately needed funds support our work with all types of cancer at our institution, but also support children’s cancer programs across the country. CURE also maintains its original goal of supporting families as they go through the difficult journey with their children. The CURE mission statement and vision statement summarize the organization well:
CURE Childhood Cancer is dedicated to conquering childhood cancer through funding targeted research and through support of patients and their families. CURE Childhood Cancer believes that childhood cancer can be cured in our lifetime.
Besides having had the privilege of caring for Brandon and other kids with cancer who now benefit by Kristin’s work, I have another, very personal connection to Kristin and CURE. My oldest son and a friend of his started an annual fundraising run in the name of a young man, Sam, who went to the same high school as our son. Sam was a promising athlete who tragically died of metastatic bone cancer. All four of my children have been involved with organizing the run over the past eight years. The funds raised from the run go to the Sam Robb Fund of CURE. This fund, with the help and guidance of Sam’s family and CURE, provides funds to support families going through their kids’ cancer therapy, and also provides full funding for a fellowship in pediatric oncology at Children’s Healthcare of Atlanta and Emory University. These fellows complete their clinical and research training with us and then join the world of children’s cancer-fighting doctors.
Brandon’s disappearing tumor was a miracle for his family. His mother’s work since that time has been a miracle for all of us treating kids with cancer.
For more about CURE:
http://www.curechildhoodcancer.org/#sthash.i786wfd7.dpbs
For more about the CURE Sam Robb Fund:
http://www.curechildhoodcancer.org/named-funds/cure-named-funds/the-sam-robb-fund/#sthash
.TLPbSnBY.dpbs
Date of event: Summer 1993
Helping Create Miracles for Babies of the Future
Richard F. Jacobs, MD
As a clinical researcher, I test potential new therapies for children that may or may not ultimately be proven to be beneficial. This usually requires randomly assigning some children to a group receiving the experimental therapy and others to a group receiving the existing, standard treatment. If there is no existing therapy, the experimental group is compared with a group receiving a placebo (“sugar pill”). The outcomes of the groups are then studied to determine if the new therapy was safe and effective compared with previous therapies or, if there are no existing therapies, compared to no therapy at all. Before any patient can be included in a research study, they must be thoroughly educated about the study, including all the potential risks. The patient (or parents, in the case of a young child) must then formally agree to participate in the research study. That process is called obtaining informed consent.
It has always amazed me how willing, and even eager, parents are to help us seek new preventions, treatments, and cures for children, not knowing if the research study we are asking them to consider will benefit their own child. In 1993, we were conducting a very important research study, as part of a National Institutes of Health research network, of a medicine to treat babies infected at birth with a dangerous virus called cytomegalovirus or CMV. It was long known that babies who contracted a brain infection with CMV had a high likelihood of permanent and often total deafness. This particular research study required insertion of a deeply placed IV catheter (tube placed in a vein) to give an experimental medicine for six weeks to fight the CMV virus. The medicine was known to be effective in adults with various types of CMV infections, and its side effects were also well known in adults. But the medicine had never been studied in babies over such a long treatment period.
In this study, babies were to be randomly assigned to either have the deep IV catheter inserted and receive six weeks of treatment with the medicine, or be assigned to a “no treatment” control group, which would receive no IV catheter and no treatment. Because the deep IV catheter carries its own risks, it could not ethically be inserted into babies merely to give a placebo. As a result, unlike many studies where the doctors, patients, and families are all unaware of which patients are receiving an experimental medicine and which patients are not, in this study everyone would know because the “no treatment” patients would not even have the deep IV catheter inserted. This meant explaining to parents, while obtaining informed consent, that their baby would be randomly assigned to either receive the research medication we wanted to evaluate for possible benefit or, because there was no standard treatment available for CMV infection, their baby would receive no treatment at all. Although all babies in the study, whether receiving the experimental medicine or not, would be given a very comprehensive follow-up, testing, and a detailed assessment of all potential outcomes, parents would immediately know if their baby did or did not receive therapy.
Obtaining informed consent from parents requires conscientiously providing all information and as complete a description as possible so they can make a truly informed decision regarding what’s best for their child. This great responsibility has always been an emotionally exhausting exercise for me. That is, until I met this particular family who made the process incredibly easy. I was explaining the CMV treatment study to them because their baby had CMV infection of the brain and was at high risk for deafness. Of course, as with all families, they wanted a treatment to help their baby and they asked complete and direct questions. But they started by saying they just wanted to help us answer the important medical questions we were addressing with the study, even if their baby was not one of those randomly assigned to receive the potentially beneficial medicine.
As it turned out, their son was randomly assigned to receive the experimental treatment and tolerated it well despite some challenges due to the side effect of depressed white blood cell counts, something we knew to expect from this research medication. When enough patients had been enrolled in the study and all the results were analyzed, the study did show that the experi-
mental treatment was effective in decreasing hearing loss and preserving babies’ hearing over time compared with the no-treatment group.
This wonderful family’s son retained functional but somewhat decreased hearing, and the family opted to have cochlear implants inserted to bring their son’s hearing up to completely normal levels. Every time I see his family, they hug me and tell me they are so happy to have helped prevent hearing loss for other babies like their son. The study was published in one of the leading pediatrics journals, and the parents even asked me for an autographed copy. While they are convinced the experimental medicine preserved enough hear-ing for their baby to be completely normalized subsequently by the cochlear implants, they are even more convinced of the benefits of today’s research for children in the future. This medicine and another newer medicine based on it have continued to show promise in reducing deafness in CMV-infected babies, and they also appear to possibly reduce other ill effects of the infection in babies, including developmental delay and brain damage.
I am constantly invigorated by the human spirit of those wanting to help answer questions for the benefit of future patients.
Date of event:1975
Making Miracles for Others
Celia I. Kaye, MD, PhD
I was providing consultations at a community hospital as a newly trained geneticist, a specialist in diagnosing and treating inherited diseases. Sarah was just a few months old, with severe, ongoing, and long-lasting diarrhea that had required hospitalization and IV fluids (given directly into a vein) for several weeks of her short life. Although we didn’t know what her diagnosis was, we did know she was failing. It was generally agreed that she was too small and fragile to survive, but we were still desperately trying to save her. Our goal was to keep her alive long enough to determine what was wrong with her in hopes that knowledge would lead to her treatment and cure. She was the first child to her young parents, who were terrified they might lose their baby and frustrated by our inability to help her. Since this was before the days we had the capability of giving adequate nutrition intravenously, Sarah was starving to death before our eyes.
Sarah had a range of problems outside of my experience. As a very young and relatively inexperienced “expert,” I was at a loss to figure out what was wrong with her. Doing what others in my position routinely do, I sought help from colleagues elsewhere and found many who, despite not even know-
ing this patient, gave of their time and energy to help from a distance. After talking to gastroenterology specialists (physicians treating stomach and intestinal disorders) and other genetics experts, we decided to try Sarah on a very new and still unproven type of baby formula that contained only the basic building blocks of nutrients rather than the complex nutrients found in standard baby formulas. We didn’t feel we had a choice—it was clear this baby would die if we continued standard formulas. It was a long and difficult trial, but Sarah ultimately was able to tolerate the new formula, gained weight, and was able to go home with her parents, much to their relief and ours.
This was only the first step of a long odyssey of trying to figure out what was wrong with Sarah, prompted by the emergence of many new problems as the years passed. Although her intellectual development was normal and she met her childhood milestones, Sarah always had difficulty with feedings and diet, and her growth was very slow. She developed unusual skin changes. In later years, an abnormality in her bone marrow occurred, resulting in not enough mature blood cells circulating in her body, perplexing the blood and bone marrow experts. Despite these many complications, Sarah continued to progress well in other ways, went to school, and ultimately on to college. She was always the “different one,” requiring lots of medical attention, missing school, looking smaller and frailer than her friends. Sarah’s parents never wavered in their love and support for her, despite the ongoing emergence of new medical troubles that always seemed to surprise the experts. Now Sarah is in her thirties, and I have still never learned the cause of her illness, and her future remains uncertain.
Although close to death when I first saw her, she “hung on” until we were able to find a way to feed her. Against all odds and all the experts’ predictions, Sarah lived. Of course, to her parents and to those of us taking care of her, this was a miracle. But perhaps an even greater miracle is how Sarah has responded to her numerous life-threatening medical developments and ongoing medical challenges.
Sarah has chosen a career helping children find their own normalcy when faced with chronic medical problems—problems, like hers, that never go away. She has had the energy and the courage to turn her own story into one that can help others, and she is doing this every day. She is determined to make the future brighter for other children who will always be different from their friends and classmates. For those kids, Sarah is now a miracle maker.
Date of event: 1956
A Dramatic Cure Leads to Many More
Michael S. Kappy, MD
Harley A. Rotbart, MD
Mike was a sixteen-year-old boy who had experienced a week of increasing numbness and weakness that was gradually ascending up his body from his feet toward his head. There are several very serious conditions that can cause these symptoms, including polio, lead poisoning, and a paralytic neurological condition called Guillain-Barré syndrome (GBS). He was admitted to a large community hospital over fifty years ago and treated emergently with injections of “British anti-Lewisite,” a medicine that was developed back in World War II to treat arsenic poisoning from chemical warfare. The same medicine was effective in other heavy metal poisonings like lead, and lead poisoning was one of the possibilities in this case. But, after many rounds of tests, Mike was ultimately determined to have GBS.
Mike went on to develop all of the dreaded complications of GBS, including paralysis and failure of the part of his nervous system that controls breathing. Early one morning, he suddenly went into cardiorespiratory arrest—his breathing and heart stopped. After a prolonged and difficult resuscitation, and the recognition that he could not breathe on his own, Mike was placed in an iron lung machine, named such because iron lungs were made of metal and could help a patient to breathe.
Iron lung machines are now obsolete because we have modern ventilator machines (also caused positive pressure ventilators) that can actively pump air into and out of patients’ lungs when their own breathing fails. But before positive pressure ventilator machines were developed, the only way to move air through the lungs of paralyzed patients was passively, using the iron lung (also called negative pressure ventilator). The iron lung is a body-size metal tube connected to a vacuum pump. The patient is placed inside the tube, which forms a seal around the patient’s body. The machine cycles through suction and non-suction phases, the pace of which can be controlled by the doctors. When the suction part of the cycle was on, the iron lung would expand the patient’s chest cavity, drawing air into the lungs; when the suction was turned off, the chest cavity would return to its resting state, expelling the air. Only the patient’s head extended outside the machine. Mike remembers being told that if he had been an inch taller, he wouldn’t have fit! There were no breathing tubes involved as there are now with ventilator machines that directly deliver air into the lungs. The machine functioned a little like a mouth on a straw, and the body was the straw—when suction was applied, air entered Mike’s lungs, and when suction was released, air was released. Iron lung machines were widely used to treat the most severe forms of polio, in which patients’ breathing muscles were paralyzed, often permanently.
The doctors treating Mike were desperately hoping that the successful resuscitation and breathing support he was receiving would allow him to recover, since most, but by no means all, patients with GBS slowly regain their muscle function.
Indeed, Mike gradually regained his ability to move and breathe over a three-week period, and he was then treated with physical therapy for several months, including a three-month stay in a physical medicine rehabilitation hospital. Over the ensuing several months, he regained nearly all of his movement functions. Mike went on to graduate from high school. The path he then chose for his career, after surviving his life-threatening illness and witnessing the heroic efforts his caregivers made to pull him through, is a remarkable example of giving back, and it illustrates how miracles can ensue from “paying it forward.”
Mike went on to college and then to medical school. During his residency training, he helped establish a free clinic in a depressed and underserved neighborhood in Washington, DC. Following his residency, he established an urban clinic in another underserved city, providing free and low-cost care to kids in need. But Mike didn’t stop there. Over the ensuing years, he helped establish a new children’s hospital, including a residency training program, and recruited faculty to teach new doctors the importance of public service in health care. His ongoing work included the development of programs for children with special health-care needs.
In recognition of his yeoman-like efforts on behalf of the neediest and sickest children, Mike was given a Distinguished Alumni Award from his college, an Alumni Citation Award from his medical school, and a Lifetime Achievement Award from the children’s hospital he helped to establish.
One courageous patient, saved by one iron lung machine and numerous heroic medical caregivers, led to a legacy of thousands of ongoing miracles. Mike’s life story taught us, and reminds us to teach others, the nearly infinite potential of each life saved.
Editor’s note: When I (Dr. Rotbart) told Dr. Kappy about this “Miracles” book project, he told me the incred-
ible story of a young boy surviving GBS thanks to an iron lung machine and many dedicated caregivers. That young boy was Michael Kappy himself, the co-author of this essay, who went on to the distinguished career described herein. Dr. Kappy noted that his story wouldn’t work for the book because the doctors providing care for him as a child were very unlikely to be available to write about it, now sixty years later. I asked Dr. Kappy if he would allow me to help tell his story, and if he would co-author it with me. I hope you’ll agree, this was a story well worth sharing on behalf of Dr. Kappy’s doctors, nurses, and therapists of so many years ago.