Miracles We Have Seen

by Harley Rotbart

  Four and a half years later, on February 23, 2009, Bishop Dolan, who had come in to pray for Jeanna as our experimental therapy was just getting underway, was named Archbishop of New York by Pope Benedict XVI. His Eminence, Timothy Michael Cardinal Dolan, was installed in the archdiocese on April 15, 2009.

  Date of event: 1985

  The First and Still the Most Miraculous

  Harley A. Rotbart, MD

  I was in the final month of my three-year fellowship in Pediatric Infectious Diseases when I was called to see Jonathan, a two-year-old former premature baby who couldn’t shake his pneumonia. It had started out looking like a routine case of benign winter viral lung infection, a common problem in young children, especially former premature babies. But instead of the typical week or two course of those infections, Jonathan’s pneumonia lingered for months, well into the spring. He initially required supplemental oxygen given through a tube in his nose. This should have been just a temporary treatment until his lungs healed. But whenever his doctors tried to “wean” Jonathan from the oxygen, he developed breathing distress, his lips turned blue, and the oxygen levels in his blood dropped.

  When I was asked to evaluate Jonathan for the cause of this persistent lung disease, my first thought was his doctors had called the wrong specialist. Infections don’t often cause chronic (long-lasting) lung disease in children. Before walking into his room for the first time, I reviewed in my head all the “usual suspects” for this type of problem. Cystic fibrosis, perhaps, or maybe an allergic form of pneumonia. I wondered if this could be an unusual appearance of asthma. Or, having been a premature baby, Jonathan might have a condition called bronchopulmonary dysplasia, a form of lung scarring resulting from treatment of immature lungs in babies born too early. None of those are due to infections, though, and I predicted my involvement with Jonathan’s case would be short-lived. There were a few rare infections I would have to investigate—fungus infections unique to certain parts of the country or elsewhere in the world, for example. I would have to ask Jonathan’s mother about their travel history. Pertussis, or whooping cough, can cause a persistent cough, but is preventable by vaccines. Of course, I would ask about Jonathan’s immunization history.

  After taking a careful history from Jonathan’s mother, doing a thorough physical examination, and reviewing all of his X-rays, I was almost certain this was not an infection—at least not one I had seen or read about before. I discussed Jonathan’s case with my infectious diseases attending (supervising) physician and presented Jonathan’s story to our weekly infectious diseases meeting, where all of our colleagues from around the city met to review inter-

  esting and puzzling cases. We agreed on a panel of tests to perform to rule out infection as the cause of Jonathan’s illness. During that next week, we tested Jonathan for all of the germs suggested as possibilities by the experts at the citywide conference. All the tests were negative. Our only remaining option for finding a cause and being able to get Jonathan off oxygen and back to a healthy toddler’s life was a lung biopsy. The decision to do a lung biopsy is never taken lightly—it requires general anesthesia and surgery, both of which come with their own risks in addition to those associated with cutting out a piece of lung tissue. Jonathan’s mother agreed with our recommendation for a lung biopsy, and Jonathan tolerated the procedure well and had no complications.

  Four days later, the biopsy results came back. The diagnosis was one I had never heard of, nor had anyone else on our team: lymphocytic interstitial pneumonia, or LIP.

  * * *

  I want to take a step back now for context. Jonathan’s biopsy was performed in the summer of 1985. The first cases of AIDS (acquired immune deficiency syndrome) in gay men had been reported in the early 1980s in New York and San Francisco. The cause of AIDS was still being debated—most suspected an infection, but not everyone agreed. What kind of infection it might be was completely unknown. In December 1982, the first suspected case of AIDS acquired by blood transfusion occurred in California. In March 1983, the United States Public Health Service (USPHS) issued a warning that individuals in high-risk groups should not donate blood. In December 1984, a thirteen-year-old Indiana boy named Ryan White was diagnosed with AIDS. Ryan was born with hemophilia, an abnormal blood condition that causes episodes of severe bleeding; treatment for those bleeding episodes requires transfusion of blood products. After Ryan’s diagnosis, he received national attention because of the community fear and panic he created simply by attempting to attend school. He and his mother helped educate the nation about AIDS. Tragically, Ryan died of the infection in 1990.

  The first approved screening test for the AIDS virus (HIV, human immunodeficiency virus) in blood products wasn’t approved until 1985. My patient, Jonathan, was born on March 19, 1983, simultaneously with the USPHS warnings about high-risk blood donors. As a tiny premature baby, he required numerous blood transfusions from donors who had given blood prior to the warnings. There wouldn’t be an approved test for screening blood products for another two years.

  * * *

  When the biopsy results showing LIP came back, we were stumped. What is LIP? This was in an era before the Internet, before Google. But as infectious diseases specialists, we knew a lot about the emerging AIDS epidemic on the coasts from the exploding medical literature on the topic, as well as from the hyperbolic media coverage the disease was receiving. We had never had a child with AIDS in Colorado. I called a colleague who had treated the first two adult patients with AIDS in the state and asked if he had heard of LIP. He hadn’t seen it yet in any of his patients, but knew of adult patients in San Francisco who had the condition. He put us in touch with one of those experts, and we sent the slides from Jonathan’s lung biopsy to him. Another two weeks went by before we heard that, indeed, Jonathan had “classic LIP,” and the most likely cause was AIDS, acquired from the transfusions he received as a baby.

  This was devastating news to Jonathan’s mother and to us. That same summer, 1985, actor Rock Hudson publicly disclosed he had AIDS before his death from the infection. AIDS was now a household word and a widespread worry. We and Jonathan’s mother and the rest of the reading world all knew AIDS was a fatal diagnosis. There were no known survivors of the disease at that point. The only treatment we had was for the complications of AIDS, not for AIDS itself. AIDS medicines weren’t approved for use in adults until 1987 and not approved for use in children until 1990, the year Ryan White died. Jonathan was the first child with AIDS in Colorado, and one of the very first in the United States. Jonathan was infected with the AIDS virus as a premature baby in 1983, first diagnosed with AIDS in 1985, and then went untreated for years until the first medicine became available. Based on everything we knew then, and everything we know even now, there was absolutely no chance of survival. None.

  We followed Jonathan in our infectious diseases and hematology clinics for several years after that, waiting for one of the inevitable lethal complications of AIDS. By then, several hemophiliac children in Colorado were diagnosed with AIDS, also acquired from blood products as had happened to Ryan White. Jonathan was intermittently quite ill and hospitalized numerous times. His lung disease persisted, and he developed another even more severe pneumonia due to a germ called pneumocystis. In many patients with AIDS at the time, pneumocystis was fatal. He survived it. But his survival became even more miraculous as life threw other horrific obstacles in Jonathan’s path.

  AIDS became one of the least of his problems.

  Profiled on Dateline NBC, Jonathan’s life story was shown to go from bad to worse. The local media covered Jonathan’s AIDS infection (“Colorado’s First Childhood Case”), which made him a local celebrity—and a local pariah. Like Ryan White in Indiana, Jonathan’s school attendance became an intense controversy. Neighbors shunned and even threatened the family. As the Dateline NBC episode detailed, churches refused entrance to the family and Jonathan was banned from the local swimming pool.
The stress on the family was enormous. Tragically, the interview also revealed even more

  unthinkable twists and turns—Jonathan’s mother’s suicide attempt, her decline into crack cocaine addiction, her abandonment of Jonathan and his brother, her imprisonment for drug dealing, Jonathan’s own bouts of depression. But thanks to his older brother and a saintly camp counselor, Jonathan still survived. Unimaginable.

  In the mid-1990s a breakthrough in AIDS treatment occurred using a combination of three highly effective AIDS medicines at once. Jonathan inexplicably, and impossibly, survived until then and was one of the first to receive those medicines.

  For me, this story came full circle today when I spoke to Jonathan on the phone. On first hearing his voice, I cried. I asked the mature adult voice on the other end if I had the right Jonathan, the one who was in our hospital in Colorado when he was just a little boy.

  “Yup, that’s me, man.” Jonathan is thirty-two years old now and runs a restaurant in Utah with his brother, the same one who was there for him through all the earlier turmoil in his life. Jonathan was married for several years and has a child, who is now eleven years old. Neither his ex-wife nor his child became infected. Jonathan is still infected with the AIDS virus, but is healthy and the miracle of his survival continues. He continues to be compulsive about taking his AIDS medicines and about maintaining a healthy lifestyle. He is in another long-term relationship with a woman and she, too, is uninfected.

  Jonathan knows how miraculous his story is—people have been telling him for years. More years than any other baby infected with this disease.

  To read the complete Dateline NBC interview:

  http://www.nbcnews.com/id/13756759/ns/dateline_nbc/t/miraculous-life-jonathan-swain/#.VcujRPlVhHw

  Date of event: February 2006

  Too Close to Home

  Denise Bratcher, DO

  “Miracles, in the sense of phenomena

  we cannot explain, surround us on every hand:

  life itself is the miracle of miracles.”

  —George Bernard Shaw

  As I rounded the corner to my office, I could see them already gath-ered in the hallway. My pediatric infectious diseases colleagues often congregate outside our offices to solicit each other’s opinions when we have tough cases. One of my partners and a fellow-in-training had been consulted emergently overnight. They began to share the details of the case: a previously healthy ten-year-old boy had presented with shock and unresponsiveness and was found to have bacterial meningitis, a severe infection and inflammation of the membranes covering the brain. As I heard “ten-year-old boy,” I cringed. An icy chill ran through my body as that description conjured up images of my own ten-year-old son whom I’d just dropped off at school minutes earlier.

  As pediatricians, we have learned to be caring and compassionate and to treat our patients as we would want our own children to be treated, and yet one of our survival mechanisms includes maintaining enough distance to remain objective—to remain healthy. Since I became a mother, I tend to have more difficulty maintaining that separation when the children are similar in age to one of mine. This was one of those times.

  It became clear, as my colleagues continued to share the details of our patient, that he was critically ill—and not likely to survive. As a result of the severe inflammation in his brain, he had developed seizure activity; he was showing abnormal posturing of his arms and legs, and one of his pupils was unresponsive to light—foreboding signs of increased swelling in his brain. In the pediatric intensive care unit (PICU), he was on a ventilator (breathing machine) and receiving aggressive treatment. The physicians involved in his care had already shared with the family that his prognosis was guarded and that he “might not make it through the night.” They told his parents that he was likely to sustain brain damage as a result of this severe infection—if he survived at all—and that continued swelling in his brain could result in death. The family had called their priest, who came to the bedside to read their son his last rites.

  After discussing what we could do to optimize his antibiotic therapy, we all felt the heaviness of this case as we started our day. I said a little silent prayer for our patient and turned my attention toward the rest of my day.

  Later, as I walked to get my morning coffee, I ran into a family friend. As I started to ask what had brought him to the children’s hospital, I instantly sensed he wasn’t himself. He began to explain to me, struggling to get the words out, “It’s Geoffrey. He has meningitis.” Tears instantly began to stream down his face, and I felt this typically jovial, big guy crumble as we hugged. Geoffrey, his son, was the ten-year-old boy we had been talking about in the hallway earlier, and he was a friend of my son. My husband and Geoffrey’s father were coaches on their youth basketball team. This amaz-

  ingly athletic, smart, freckle-faced, impish boy was the kid now fighting for his life in the ICU. Any healthy distance I had established earlier was suddenly violated by the realization of this patient’s identity and the need to console his father. The icy chill that I had felt initially was a harbinger of what this day would bring. I knew this kid, and I knew too much. This was too close to home.

  As pediatricians, we are keenly aware that our patients are someone’s son or daughter. We recognize and understand the fear that drives parental anxiety when a child is ill, and we do our best to allay those anxieties when we can while creating an honest perspective of our care. We revel in the joy and relief parents feel when their children get better and go home from the hospital. Sometimes, our patients do not survive, and every child we lose is heartbreaking. We feel the parents’ loss and grieve with them while understanding that we do not walk in their shoes.

  At this point, I was relieved to be able to leave Geoffrey’s medical care in the capable hands of my colleagues and be his family’s friend. Their church and school community held multiple prayer vigils; little prayers for Geoffrey punctuated my days and consumed my children’s bedtime prayers nightly.

  Geoffrey awoke from his comatose state five days later, on a Sunday morning, at exactly the time his family would typically have attended Mass—and just as his church was saying a collective prayer for him.

  Remarkably, and against all odds, Geoffrey started to turn the corner, requiring less intensive support daily. He was initially left with mild paral-ysis of the right side of his body, which eventually resolved with aggressive physical therapy and rehabilitation efforts. Exactly three weeks after he was admitted, he walked out of the hospital to go home. The boy not likely to survive made a full recovery.

  Geoffrey eventually returned to school and competitive basketball, ultimately playing varsity basketball for his high school team. During his senior year, the pediatric critical care physician who cared for him joined his family to watch one of his basketball games—a very special night for everyone. On every occasion I had to watch him play, the chills returned as I reminded my family that we were watching a miracle in action. Now, they were warm chills of gratitude. Geoffrey graduated from high school and now attends college, normal in every way.

  A picture of Geoffrey leaving the hospital on discharge day still hangs outside our PICU. Every time we pass that picture, it reminds me, and everyone who cared for him, that miracles really do happen.

  Date of event: 2000

  A Vacation Like No Other

  Richard Westcott, MA, BM, BCh, DRCOG, DCH

  I originally related the story of Jim in the British Medical Journal and revisit it now with the benefit of more than a decade of additional reflection on this case. This would be the first “miracle” in my practice, and nothing comparable has occurred since.

  Jim was a submarine engineer with years of occupational exposure to asbestos. He developed asbestosis, a chronic lung condition from inhaling asbestos fibers. Asbestosis is characterized by lung inflammation and scarring and can result in significant breathing problems, as it d
id in Jim. I worked closely with Jim and his wife, Sally, a former occupational health nurse, to help get a disability pension set up for him, as his shortness of breath and weakness made further employment impossible.

  As a general practitioner in the United Kingdom, I came to know Jim and Sally well over the years. I knew, for example, that Jim found his mother-in-law to be demanding and unpleasant, and I knew that Sally’s back injury, which prompted her early retirement, continued to cause her pain. When Jim became diabetic, he blamed me for not making an earlier diagnosis—I countered that I tested him with the first onset of his symptoms, but we argued a bit anyway, as we were prone to do. I knew from our frequent discussions that Jim and Sally had little faith in authority, politicians, or professionals, including me it often seemed. They also had no religious faith, a position I shared with them—I am an atheist. Jim and Sally were tough characters—“hardboiled” is how I described them in the British Medical Journal article—yet over the years I developed a grudging affection for this couple. It’s hard not to develop a personal relationship with patients in general practice when one is involved with so many serious and less serious illnesses of a couple and their family over the course of a lifetime. Jim and Sally were part of the tapestry of my career as a general practitioner.

  When Jim developed a swollen right breast, he came into the office and saw one of my colleagues in the practice, who asked Jim to come back for me to check the swelling in a week or two. Jim didn’t come back until many months later, when it looked for all the world as if he had breast cancer. Once more, he had cause for an argument with me about my missing something early on—that was just Jim. It frustrated us both even more when we had to repeat the biopsy several times before establishing a correct diagnosis. It turned out it wasn’t breast cancer after all, but mesothelioma, a dread cancer of the linings of the lung, also associated with asbestos exposure. The tumor had spread all the way through Jim’s chest wall and into his ribs and breast tissue.