Date of event: 1974
As if Nothing Much Had Ever Happened
Alan R. Spitzer, MD
Near the end of my second year of pediatrics residency, I was assigned to the pediatric intensive care unit (PICU) of one of the foremost children’s hospitals in the country. Patients admitted to the PICU were always difficult management problems and often extremely ill. Needless to say, as a young resident-in-training, my anxiety each and every day during this rotation was significant.
During the second week of the rotation, I was on call one night when I received a page from the senior resident notifying me that a young child was being admitted to my service who was becoming progressively obtunded (losing consciousness, difficult to arouse). Upon learning that the boy was approximately two years of age, I initially assumed it was going to be some type of ingestion of a toxic material that would need sorting out and immediate therapy. Toddlers tend to get into dangerous chemicals like cleaning fluids, pesticides, cosmetics, or their parents’ medicines and end up in PICUs around the country every day. This child was accompanied to the PICU by his parents, who told me he was never out of their sight and it was not possible he had ingested anything. I also learned from them that Michael (not his real name) had been running a moderate fever for about twenty-four hours, which they assumed was probably due to a developing cold. He and his two older siblings were always sharing their germs and getting each other sick. Earlier in the day, he had been very irritable and fussy, refusing to eat and crying almost constantly. Shortly after dinner, his irritability diminished, but Michael had now become progressively sleepier to the point where it was difficult to awaken him. His parents became concerned and brought him to our emergency room for evaluation, and from there he was subsequently admitted to the PICU.
I told the family that I would like to examine Michael and I might have further questions for them after I did his physical exam. They told me they would be here all night with him, as they had dropped their other two children off at their grandparents’ house. At that point, I turned to the child on the bed and I was immediately taken aback by his appearance. Not only was this child acutely ill, but his physical appearance resembled that of my own son, Stephen, so closely that I had to look twice to reassure myself that this was, in fact, another child and not my son. Michael’s hair color, skin color, and physical build were nearly identical to my son’s, and when I checked his birth date, he was born just a few weeks before my son. Pediatricians often say that one of the toughest parts of our job is that we “project” our own children onto our patients, sometimes identifying so strongly with their parents that it’s difficult to stay objective for the medical issues we have to confront. However, this was even worse—Michael more than just reminded me of my son, he looked just like him!
I could hardly imagine the profound anxiety that this family had to be going through to witness such a sudden, dramatic deterioration right before their eyes. On the remainder of Michael’s physical exam, in addition to the obtundation, I discovered he had significant stiffness of the back and spine, pointing to either meningitis (a bacterial infection of the covering of the brain) or encephalitis (a viral infection of the brain itself) as the most likely diagnoses. I sent blood tests to the lab and performed a spinal tap, inserting a needle between the vertebral bones of the spine to withdraw a small amount of the fluid that bathes the brain and spinal cord for additional tests. We began intravenous (directly into a vein) therapy with fluids and antibiotics. The blood tests confirmed there had been no ingestion, and the spinal fluid tests indicated encephalitis was the more probable cause. Some days later, a diagnosis of Eastern equine encephalitis (EEE) was confirmed. EEE is a rare brain infection caused by a virus and transmitted by the bite of a mosquito. It has the most serious consequences; the Centers for Disease Control and Prevention (CDC) reports that about one-third of patients die, and the ma-
jority of survivors are left with significant brain damage. Other than providing support for breathing, hydration, seizures, and brain swelling, there was nothing else we could do. To this day there is still no specific treatment for this infection; antibiotics don’t work against viral infections like this.
Michael’s initial hospital course was very stormy, with seizures, respiratory insufficiency (inability to breathe adequately) that required a breathing machine, and intermittent cardiovascular instability (an irregular and weak heartbeat). Each and every time I looked at this unfortunate child, who looked so much like my son, I became distraught, frantic with the desire to somehow make him well again. For his parents, I could not do enough, yet whatever I did never seemed adequate to me for what they were going through. Finally, after a few extremely difficult days when death always seemed but one step away, his condition stabilized and we were able to begin removing some of his acute life support equipment.
Unfortunately, although his body functions stabilized, he remained comatose. The supervising physician and I finally had to inform his family that, given the known history of this terrible disease, it was likely that Michael had suffered significant brain injury and would need supportive care for the remainder of his life. I could not imagine the grief that this family must have felt, nor could I envision how I would respond if those words were told to me about my own son. After another week, we made the decision, with his parents, to transfer Michael to our affiliated long-term care hospital where his needs could be better met and some planning undertaken with the family for the child’s grim-looking future.
I vividly recall as he left the PICU having a sense of profound failure. Yes, we had saved his life, but to what end? And for months afterward, each time I looked at my own son, I was so grateful for his good health, but I could never stop thinking about Michael. I would occasionally call and inquire about him, but the message was always the same—no change. Eventually, the nonstop bombardment of new responsibilities and new patients that befall a physician-in-training intervened and this boy faded somewhat from my mind, though he was never very far away. At moments of happiness and contentment at home with my own son, my thoughts inevitably drifted to Michael and his parents.
One day while walking through the hallway, I bumped into one of the PICU nurses who had cared for Michael during his stay with us. “Remember the boy with the Eastern equine encephalitis from a few months ago?” she remarked.
“Sure,” I said, “I’ll never forget him.”
“Well, then,” she beamed, “you’ll be pleased to know he apparently woke up this morning and said that he was hungry!”
I could not believe it. I rushed to find someone to cover for me and drove to the long-term care hospital. There I found Michael and his parents, the family overwhelmed with joy, tears flowing freely. He sat in his mother’s arms, sucking his thumb, and looking for all the world as if nothing much had ever happened, testimony to the superb nursing care that accompanied him throughout his illness. It was very difficult for me to control my own emotions, but I was thrilled beyond words. His miraculous awakening made it feel as if, once again, all was right with the world.
I saw Michael in clinic for follow-up for the next year with the neurology team, but his development, after a bit of a lag, soon proceeded apace and he rapidly caught up in his milestones. He didn’t need specialists any longer. His family decided to get his ongoing care from his own pediatrician, the true goal for all of us caring for the sickest of patients.
I never saw Michael again, but this experience has never left me. It reminds me to never give up hope when there is even a glimmer that something remarkable might take place. And to this day, when I look with pride at my son Stephen, now an adult with his own kids, I hope that Michael has rewarded his family with the same sense of joy that Stephen has always given me.
For more on EEE, see: http://www.cdc.gov/easternequineencephalitis/
Date of event: August–September 1977
A Blonde Blur
John W. Ogl
e, MD
She had been a previously healthy blonde two-year-old described by her parents as full of energy and the spark of life. She contracted a serious disease called hemolytic uremic syndrome in which a patient’s kidneys can gradually fail, and hers did. The disease is poorly understood, but the treatment requires dialysis to filter the blood from toxins until the kidneys hopefully recover. But the usually routine procedure to place a catheter for dialysis had complications and she went into shock, severely dropping her blood pressure. As a consequence of the shock she suffered a profound injury to her brain.
I assumed her care as she transferred out of the intensive care unit. She had almost no normal neurological findings: she did not move voluntarily, could not speak, and could not eat or drink. In response to touch and voice, she went into painful spasms. She was in deep coma and responded neither to her parents nor to her doctors. She had frequent seizures and had to be fed through a tube passed from her nose into her stomach. Ironically, although her brain was devastated by the procedure to treat her kidneys, they began working better. She developed many more complications, including severe stomach and intestinal bleeding and pneumonia. She needed transfusions, a tube in her chest, and frequent medications for elevated blood pressure. For weeks there seemed to be daily medical crises.
Her parents were told that their beautiful daughter’s brain would likely never recover from her injury and that she would continue in coma and eventually succumb to a seizure or an infection such as pneumonia. They politely and stoically heard all of the predictions and tried to cope with the implica-
tions. They were very attentive to their daughter, but very private, holding all of the staff at a bit of a distance. Remaining very persistent in their belief their daughter would recover, her parents were certain she just needed more time. Their questions for the neurologists were thoughtful and to the point, but they declined doctors’ suggestions for surgeries that would make their child’s breathing and feeding in a long-term care facility easier—they insisted on taking her home and providing her daily care themselves, in her own bedroom. They were willing to accept the consequences of whatever happened next.
This was my first year as a pediatrics resident-in-training. I had little experience with this type of case or with a family that declined physician recommendations for care. The neurology specialists, whose job it is to assess brain damage, commented on the highly unrealistic expectations of the family for their daughter’s recovery. Her parents expressed appreciation that I never questioned their decision to take their daughter home. As the parents requested, and with serious reservations about the wisdom of their decision, we sent her home; it was September. The nature of training being what it is, I went on to other clinics, wards, and hospitals, but I frequently wondered what happened to this little girl. Had she died as predicted? Had her parents given up on her recovery? Was she in a long-term care facility?
About four months later, I was working on the morning of December 24—Christmas Eve—when I was greeted by the parents, who had returned to the hospital for a routine follow-up appointment with the kidney specialists.
I did not recognize their gorgeous daughter, a blonde blur who came running down the hall. She had bitten off the tip of her tongue during one of her seizures in the intensive care unit months ago, and her “s” sound came out with a little hiss. She was otherwise the perfect spark of life her parents had described before any of this had started. I was too shocked to ask them about any of the details of their daughter’s recovery, and I never saw them again. I would love to know how that little blonde blur is doing now.
This is such a vivid memory for me, I can still “see” this child as if she were running down the hall toward me today. December 24 was the day I discovered miracles. To this day, I think about her frequently as I care for other difficult cases, whenever parents are hoping for their own miracle.
Date of event: 1972 or 1973
The Lazarus Child
Mary P. Glode, MD
I was a pediatrics intern in a large Southern city, when a previously healthy nine-year-old boy was admitted to the hospital with encephalitis, a very serious infection of the brain. We did every test we knew about at the time to try and discover the cause of his infection, but no cause was found. He stopped talking, stopped eating, and lapsed into a deep coma. We were all devastated that we could do nothing to help this child. We asked the chairman of the pediatrics department to please come see the boy with us. The chairman was a brilliant doctor, the person to whom we turned with the most difficult cases—he usually was able to come up with an answer and a plan. He reviewed the case and carefully examined the child, but could only reassure us that we had done everything we could, and there was nothing more that could be done. It was clear to all of us that our chairman did not think this child would recover from his coma.
Each day, we carefully assessed the child, examining him and reviewing the blood tests and brain scans, but he remained deeply comatose for weeks. We observed no apparent progress in his condition, and we were no closer to understanding the cause of the child’s illness. Then one day everything changed. It was a spring morning, many weeks after the boy had been admitted to the hospital. As we entered his room on rounds, the child suddenly opened his eyes and said quite clearly, “I’m hungry, can I have a hamburger?”
We were absolutely stunned. There had been no progress on rounds as recently as the night before. Ecstatic, we called the child’s mother, who was still at home that morning (since we made rounds quite early). Our next call was to our department chairman to tell him the wonderful news. He immediately came to see the boy and was speechless, but thrilled, also without an explanation for the child’s astonishing turnaround.
The little boy recovered completely over a period of several months and had no memory of his illness. In the years since, I have always referred to this case as the “Lazarus child” since it seemed to me that he had come back from death.
Date of event: February 2002
A Mother’s Voice, a Husband’s Devotion, a Patient’s Courage
Anthony Suchman, MD, MA
Mary Clark (not her real name) was a friend of my artist wife, Lynne, long before she became my patient. Mary was an engaged and creative guidance counselor in an urban public middle school and was well along her intended path to earn her doctorate and become a school principal. She and Lynne became friends when, in response to a racially charged altercation in the school cafeteria, they engaged more than sixty students in a large art project: creating murals for the school’s atrium that depicted their communities. They then developed a student-run business selling T-shirts, carry bags, and greeting cards bearing photographic reproductions of the murals and, with the help of several teachers, developed an entire sixth-grade curriculum around the business. As I said, Mary was engaged and creative, a beacon of light to her school, her family and friends, and her whole community.
One Friday, Mary started to feel unwell with body aches, a headache, and general fatigue. She called her doctor’s office and was advised to take a pain reliever, which helped temporarily. But by Monday her headache was steadily worsening. That evening, right in the middle of giving a presentation to her graduate school class, she felt so sick she had to excuse herself. She went out in the hall, fell, tried to get up, and lost consciousness. At the age of forty-two, Mary’s light had suddenly been all but snuffed out by an enormous stroke.
It turned out that Mary had vasculitis, inflammation of the blood vessels of her brain due to a disease called systemic lupus erythematosus (or lupus). The vasculitis damaged the blood vessel walls and made them weak. A large vessel had ruptured, resulting in the formation of an orange-sized pool of blood in her head that squeezed and distorted most of her brain. Mary was not brain-dead; part of her brainstem (which attends to basic tasks of body regulation) was still functioning but she was in a dense coma, completely unresponsive to her surroundings.
The doctors told Mary’s husband, James, that her chances of recovery were around 5 percent. As he told me later, he simply refused to believe that. Every night he stayed with her in the hospital, talking to her and encouraging her. He made sure that her hands, arms, feet, and legs were moved through their full range of motion every day to maintain their suppleness and flexibility, and to prevent the development of muscle contractures. But week after week, her outlook dimmed as she showed no sign of awareness and made no spontaneous movements. Still, he never stopped believing and the hospital staff never stopped supporting him in his hope. He read everything he could find about stroke and investigated all the latest experimental therapies.
One day, after Mary had been in the hospital for five weeks with no change in her condition, her mother called James to see how things were going, as she often did. It occurred to James to hold the telephone up to Mary’s ear; maybe her mother’s voice would rouse her. Why not? Let’s try anything, he thought. To everyone’s astonishment, when her mother said, “Hello,” Mary mumbled hello right back.
And with that Mary woke up. She had no idea how much time had elapsed. But she did know she couldn’t move her right arm or leg. And she couldn’t make her mouth speak, though she knew exactly what she wanted to say and could comprehend everything that other people said to her. It didn’t take her long to understand what had happened; she was determined to work her way back.
And work she did. Over the ensuing weeks, months, and years she applied herself full-bore to her physical, occupational, and speech therapy. James was always right there with her; he even fashioned a physical therapy gym for her at home so she could exercise more. She and James took encouragement from every gain, no matter how small, and then worked for more. James continued to read voraciously and found a variety of assistive devices and novel therapies. By then I had become Mary’s primary care physician; we all reviewed his discoveries and decided together which ones to pursue.
Miracles We Have Seen Page 17
