Miracles We Have Seen

by Harley Rotbart

  Date of event: January 2006

  The Miracle of Forgiveness

  Harvey Guttmann, MD

  It was going to be a routine procedure to help my patient swallow food with greater ease. We had known each other for a few years, but not particularly well. Hilda was in her late sixties and had struggled with severe asthma most of her life. I had seen her previously to dilate her esophagus (food pipe) when she was experiencing difficulty in swallowing. She would develop a narrowing of her esophagus every one to two years from stomach acid reflux (backflow of stomach juices up into the esophagus) and would come to me for a “stretching” procedure with a balloon-type dilator inserted into her esoph-

  agus through her mouth. I had performed this without any complications many, many times before, and at least three or four times on Hilda herself.

  That day, however, what began routinely ended up horribly wrong. Within a minute or two after the stretching was completed, and even before fully awakening from her anesthesia, Hilda’s breathing became labored and she clutched her chest in excruciating pain. It became quickly apparent that instead of uneventfully dilating the esophagus, the procedure had resulted in a serious tear. I watched in horror and disbelief as the emergency resuscitation “code team” of doctors and nurses was called over the hospital loudspeaker. They ran to our procedure room and placed both a tube through the chest wall and a breathing tube into the trachea (windpipe) of my patient, who a mere fifteen minutes earlier was joking with me prior to the procedure. She was quickly rushed to the operating suite and, because of the severity of the tear, the esophagus needed to be removed in its entirety.

  The ensuing weeks were a blur to my patient, her family, and to me. Hilda required the breathing tube for nearly two weeks after surgery and the chest tube for a month. One complication led to the next. I awakened each morning thinking of my poor patient and went to sleep praying for her recovery. I visited her and her family twice daily in the intensive care unit but could not communicate with her because of the breathing tube in her windpipe and the sedation that was administered to maintain her calm.

  When she was first able to speak to me, she was short of breath and uncomfortable but over the ensuing two-month hospitalization, her breathing slowly became less labored, allowing her the strength to talk. Although she inquired about the details of the complication, she never expressed anger toward me, and for that kindness, I was most thankful. As she continued to gain strength she would share her feelings during our daily visits, not only regarding her acute medical situation or her chronic breathing issues, but about her family struggles, her career, her life’s victories and disappointments. Her eyes twinkled with joy as I entered the room, and we both began to look forward with anticipation to those daily chats as the highlights of our day.

  My emotions were mixed and confused when the time arrived that she was well enough to leave the hospital. We had developed a relationship that soothed our souls. Each time we sat together in conversation, I could see her breathing becoming visibly more comfortable as the visit progressed. We shared the Jewish faith and, although neither of us was ritually religious, each Friday over the ensuing four years following that hospital stay, I would call her home in the afternoon to wish her a Sabbath greeting. When she answered the phone, I believed I could feel her smile through her shortness of breath, and by the end of each weekly chat, she was coughing less forcefully and her voice was much stronger—as was mine. We both began each Sabbath feeling spiritually and physically invigorated.

  But the years of illness, along with the added stress of the procedure’s tragic complication, took their toll on my patient’s ability to breathe. With the passage of time, I stood witness each Friday to the dwindling force of her breaths as they gradually became more labored. The initial improvements I observed early on during our pre-Sabbath conversations became less apparent to me as the years passed, despite the fact that our connection to each other became increasingly close.

  What began as a horrific and life-altering complication evolved into a miraculous and life-affirming bond of friendship. But, as her decline continued relentlessly, she required another admission to the hospital. It was then that she shared with me her feelings that the time had finally come for her to say good-bye. She could no longer fight so hard each and every day to fill her lungs with air, and it was time for her to transition to hospice care. With her family and me at her side, and with the help of her compassionate nurses, she slowly drifted toward unconsciousness and passed away comfortably, surrounded by those who loved her.

  Who could have believed that despite this tragic complication, she would survive the years, and how fortunate for us all that she could. Did those Sabbath greetings help gather and maintain her strength to live? Although I cannot ever be certain, I want to feel as if they had. They certainly gave me strength and comfort. And so, during her last days with us, I was honored to be able to wish her one final Sabbath farewell.

  To this day, each Friday as the Sabbath approaches, I close my eyes in reflection and offer my dear departed friend and patient another greeting for the miracle of forgiveness and gift of friendship that she gave me.

  Date of event: April 2000

  A Child’s Insight

  David Keller, MD

  The “Father of Modern Medicine,” Dr. William Osler, once said: “Listen to your patient. He is telling you the diagnosis.” As a pediatrician, I tried mightily to adhere to that guidance as I attended to the nuances of the lives of my patients in the small New England town where I practiced. I listened to many stories from my families. Usually, I was able to glean from them the information I needed to make a diagnosis. Before I listened to Bob, however, I hadn’t truly appreciated that pediatricians’ patients are not limited to just the kids in the exam rooms, but include their families as well. We have to listen to all of them.

  I first met Bob as he was entering elementary school. He had cerebral palsy, a movement and muscle problem that results from damage to a baby’s developing brain. This young boy also had speech problems and significant learning disabilities which, along with his cerebral palsy, were the result of a rocky start in life as a thirty-two week premature infant. His condition was not severe enough to need crutches or a wheelchair, but was bad enough to keep him from running with the other kids. He wore plastic braces on his lower legs to prevent his muscles from permanently shortening due to their chronic spasms. When he walked, it was obvious his condition would make it difficult for him if he ever wanted to participate in an athletic activity. His speech was hard to understand, and he had few friends.

  By second grade, it was clear that school was going to be a challenge. I spent many hours talking with his mother, working with her to get special-education services at school to supplement the physical therapy he was receiving to minimize the impact of his cerebral palsy. In fifth grade, we (his mother, the school, and I) decided that Attention Deficit Hyperactivity Disorder (ADHD) might explain some of the problems he was having in class. Kids with ADHD may have trouble paying attention, may act without thinking about what the result will be, and may be overly active. For reasons that aren’t fully understood, medicines that increase activity in most people (stimulant medicines) will help decrease hyperactivity in kids with ADHD. We decided to start Bob on stimulant medicine to see if it would have a beneficial effect on his ADHD.

  Throughout this time, I spoke with Bob as a child, thinking of his mother as the primary source of information about his progress. Even though I saw him and his mother frequently, I often “spoke past” him when addressing his condition with his mom. I still saw him as an awkward lad, with an odd affect, difficult speech, and a funny gait, who would always be a child dependent on his mother.

  In high school, Bob encountered new challenges in the education system, struggling in all subjects and failing despite medications and school support. When he came in for his annual physical, for the first time he re
fused the stimulant medications that had been prescribed. In the room with his mother, I heard her speak of being at the end of her rope. From him I heard nothing. I asked his mother to step out of the room, so that I could examine this teen-ager in privacy.

  “So, what’s going on?” I said as I began my examination. He said nothing. I probed further, “The pills never bothered you before.”

  “They don’t work,” he replied, “and I don’t want them around the house.”

  I stepped back from the table, surprised by his response. “Why not?”

  “She’s drinking again,” he replied, “and I don’t want her to start with the pills.”

  Suddenly, it clicked. In retrospect, his mother’s affect (a psychological term, meaning one’s outward presentation of inner emotions) was often a bit tipsy. I had written it off as stress. I knew that she had been divorced and suffered from depression. I didn’t know that she had a problem with drinking or pills. It had not occurred to me that her fifteen-year-old, special-needs son would realize that restricting his mother’s access to his stimulant medication was what he could do to keep her problem from getting worse. His insight gave me a chance to help him have a conversation with his mom that was long overdue. The ongoing dialogue they established helped them both in ways I could not have anticipated—certainly more than any change I could make in his prescription.

  Bob’s school performance improved. Now that we knew of his mom’s drinking, we were able to help her get treatment, and her drinking came under control. Bob was able to stay on his medication without worry that his mom would be tempted. All this was the result of the unexpected and, in my eyes at least, somewhat miraculous perceptiveness of a child to whom I had not given enough credit.

  Over the next few years, we decreased and finally eliminated Bob’s stimulant medication. At each visit, Bob and I always had a private conversation as part of the visit. I now knew to speak with him as a young adult, not past him as a dependent child. I respected his self-awareness and wisdom. After each visit, I always made sure to ask his mother how she was doing in her work on recovery, and she always thanked me for asking.

  Bob graduated from high school, an incredible testimony to his perseverance and maturity. Although he would still probably always need assistance in life, there was no doubt he was ready to transition to an adult world. I’m certain his intuition and understanding will surprise others as it had surprised me.

  Date of event: 2015

  Feeling His Pain

  Jeffrey S. Hyams, MD

  It was a routine follow-up office visit for Anthony, a fourteen-year-old boy I had seen for several years for eosinophilic esophagitis. This is a condition in which allergy to a food protein causes inflammation in the esophagus, the tube leading from the mouth to the stomach, causing difficulty swallow-

  ing. Anthony had been doing well on moderate dietary restriction when I last saw him six months previously. I asked him the customary questions about how he was doing, but could sense that I was not getting the whole story. As he was old enough to talk to me directly, without his mother participating in the conversation, I directed my questions to him.

  Over the next few minutes it became clear that while his esophagus was fine, Anthony was not. He was having abdominal pain, diarrhea, fatigue, and not doing as well in school as usual. I did the customary head-to-toes “review of systems,” methodically asking about any physical symptoms or other issues he was having. I then asked him more about his life, school, home, stresses, and the like, but really didn’t get much in return. Mostly he stared at the floor. Finally I turned to his mother, herself a nurse, and asked if she had anything to add. Anthony’s mom was the kind of person who was always smiling, but not today. She told me that her husband had been quite ill for many months with a yet-to-be-defined illness that had left him incapacitated. Their world had been badly shaken. He was being cared for at home but clearly the demands of his illness on her, and on Anthony, had been great. I was very fond of this family as we had shared stories of our lives on previous visits and I didn’t want to offer platitudes. I wasn’t sure exactly what was right to say at that moment, though I knew what I wanted to say.

  What I wanted to say was that I had lived in their shoes for many years with my first wife being progressively disabled, and then eventually dying, from multiple sclerosis. What I wanted to say was that I, along with my teen-

  age son, had been my wife’s caretakers and we saw the incremental impact of her illness on us. My son and I had experienced anguish, stomachaches, headaches, fatigue, and all sorts of bodily complaints. With great trepidation, I decided to share my experience. I was fearful that my story, with its very bad ending, would sound morbid to them and would make things worse. Would I just convince them that they, too, were on their way to a tragic conclusion? I only had a few short seconds to decide what to do.

  So slowly, and trying to hold back my own tears, I told them of our experiences. Details were not important, but substance was. I told them my son, who was in high school during most of the difficult years, had experienced similar health problems to those Anthony was now experiencing. I talked continuously for about fifteen minutes, which could have been a problem given the whole visit was only allotted fifteen minutes on my hectic patient schedule. Medicine today often doesn’t give us the time we need with our patients—there’s too much pressure to “move patients through.” But on that day, with my patient struggling with symptoms I was all too familiar with, time really didn’t matter at all. As I was speaking, Anthony affixed his eyes to mine and no longer was interested in the floor. His mother also listened intently, not only to see the effect of the story on her son, but likely thinking about herself as well.

  Looking back now I can’t remember the exact words I said, but in general I know I talked about loss, grieving, love, needing to carry on despite hardship. I talked about the “brain-gut connection” and how our minds and bodies are closely interconnected, and that thinking of them as separate entities often blinds us to the true triggers and causes of disease. There was a good explanation for Anthony feeling the way he was, and I believed it was unlikely he was suffering from any severe illness. We talked about strategies for coping with the physical and emotional demands, and the importance of caretakers taking care of themselves as well. That may be the hardest lesson of all for any of us, includ-ing me and my son, to accept. It is okay to give yourself a break. We talked about finding someone to talk to on a regular basis, the importance of exercise, being with friends, and getting away at times without feeling guilty. The mood in the room softened, the 900-pound gorilla released. We all breathed again.

  I wondered how things would go that night when they got home. Their reality would be the same. But would they be a bit stronger, and perhaps more accepting of the situation? Would some of the resentfulness or anger or fear or guilt that had triggered Anthony’s physical symptoms abate? Would they heed my advice about arranging for a therapist to help him sort through all of the emotions and turmoil compounding his adolescence—a period of life inherently filled with its own emotions and turmoil? This would test the resilience and inner fortitude of this young man as it did my own son in a very parallel situation.

  I felt exhausted after their visit. I hoped that my patient’s burden was less-ened, if only for a short time. In telling him of my family’s struggle with the mind-body connection, how the stress my son and I experienced had affected us physically, I reflected on how doctors must at all times be conscious of how very human we are, and how our own life stories can help, and be helped, by the life stories of our patients.

  But it was still early in the day and I had many more patients on my schedule, which was now even further backed up. As cathartic for me as the flashbacks to my own life had been that morning, I needed to put them aside, tuck them away in a drawer, and move on. I hope someday Anthony will get to a place where he can do the same.

  Date
of event: Early 2010s

  The Miracles of Grace and Patience

  Kathleen M. Gutierrez, MD

  “J” is just a little boy. At the time this is written, he has been in the hospital, hundreds of miles from his home, for seventy-six days and counting. His father is here, too, every day, twenty-four hours a day. J was born with a condition causing the bones in his skull to fuse together too soon, resulting in an unusually shaped head. He also has hydrocephalus, an abnormal collection of fluid in his brain resulting from a blockage of the normal drainage pathways for brain fluid. To remove the excess fluid from his brain where the pressure could cause further damage, he requires a tube running under the skin all the way from his brain to his abdomen. As if all of that wasn’t enough, he is hard of hearing and also requires a tube inserted directly through the skin of his neck into his trachea (windpipe) to help him breathe.

  As a result of his medical conditions, he has had a dozen major surgeries, forty or more minor procedures, and many hospital admissions since birth. Now, he is back in the hospital with a severe fungus infection. We—J, his father, his surgical and medical teams—have worked together through this long winter-through-spring hospitalization to battle the tenacious germ. A few times we have been optimistic that finally the two strong drugs and multiple procedures to clean out the infection resulted in cure. But our hopeful hubris is always short-lived as new areas of swelling arise on his battered young face, and the search for the germs’ elusive hiding place begins again. The bone and tissue in his forehead have poor blood supply, restricting our ability to get the medicines where they need to be. The drugs seem to have “stunned” the germ, which when removed from the affected areas no longer grows in the test tube, but we still see its face at random intervals when tissue is viewed under the microscope.

  Almost every physician on our team has cared for J at some time over these many weeks. Our weekly clinical care conference, where our doctors meet to share ideas that might aid in our treatments, inevitably begins with questions about J. “How is he this week?” “Are there new ideas or words of wisdom?” “What can we do to best help them?”