Miracles We Have Seen

by Harley Rotbart

  By now my patient was six months old and his mother had seen him only once since he was four months old. There was a flurry of activity to plan for the mother’s training in all of the care that her baby boy needed. On the big day of the training and the discharge home, the social worker came to us to tell us that she couldn’t advocate for the baby to be taken home. The social worker was upset because the mother had come to the office intoxicated and told the social worker she had sold the telephone for drugs. Without a telephone in the apartment, the mother would not be able to contact us if the baby’s condition worsened.

  The social worker told us that the mother was still in the social work office and did not want to come up to the pediatrics floor. The chief and the head research nurse rushed to the social work office to beg the mother to allow her son to be in the clinical trial of AZT. They were convinced that she understood it was voluntary and that the early results of AZT therapy were very good. They thought the mother was competent at that time to understand their cautions that AZT was not yet approved and there were unknown risks from the medicine. The chief was also certain the mother understood from that conversation that no child had yet survived AIDS. She signed the consent form with an X. Sometime later, she stepped out “for a cup of coffee”—and never came back.

  For my patient, now on the clinical trial and receiving AZT, the next six months were full of deteriorations followed by small gains. Each time the chief and the social worker thought conditions were right for the baby to go home with his mother, his status worsened. His mother promised to visit at least once a month, but never showed. No other family members were known to our social worker and no one came to visit, even for his first birthday. We had a birthday party for him, decorated his room, and brought candy and some small toys. A few months later, we deemed him to be in his best state of health ever. Once again, the chief and the social worker made arrangements to bring in the child’s mother, train her, have her take her toddler home and have a home assessment visit the following day. The social worker would confirm that the apartment was safe for a toddler and that our patient’s health wasn’t deteriorating. This time the mother showed up and was able to take her son home for the first time in almost a year. The follow-up visit was “acceptable,” but three days later he was in the emergency room with pneumonia once again. Blood tests in the ER showed that he had not been receiving his medications. The chief continued to insist that we not report this hospitalization as “medical neglect.” That way the mother could retain custody so that our patient could continue to receive AZT. If the mother lost custody, the government agency would probably rescind permission for the clinical trial and the AZT would be discontinued. The chief argued that our patient was unlikely to be healthy enough for another trip home in the foreseeable future. Even if the mother had custody, the chief emphasized that our patient would be in the hospital, safe under our care.

  Unfortunately, the chief’s prediction about the little boy’s health was correct and our patient deteriorated. He was transferred to the ICU where multiple simultaneous infections revealed that his immunodeficiency was progressing despite AZT. Today, we know that progression of HIV infection and AIDS almost always happens when only a single medicine is used, even when the medication is given as prescribed. Back then, AZT was not approved and it was the only experimental treatment for children. It became clear that the baby boy, now a “toddler” though he never walked, would die soon.

  I was examining our patient in his crib when the social worker shocked me by saying that his mother wanted to have an appointment with me and the ICU doctor. The mother wanted us to meet her family. I had cared for my patient for more than half of his life and had never seen any family other than his mother. Surprisingly, the mother showed up on time and sober. She brought her sister and a fifteen-year-old she introduced as my patient’s half-brother. The mother’s sister was an angry-appearing woman in a wheelchair with a below-the-knee amputation of her right leg. The teenage half-brother was stony faced, wearing baggy clothing, and kept his right hand in his pocket. I was frightened of him because I thought he might have a gun in that pocket. We went to the little boy’s crib so his aunt and half-brother could see him, possibly for the first time. The ICU doctor and I showed the family that our patient was unconscious and that his spontaneous movements showed he was in no pain. We described the function of all of the machines being used to maintain his comfort, and we talked about his declining health. Both the aunt and the half-brother appeared angry, so the mother said we should move to the family room away from the crib.

  The next moments are fixed in my memory. The mother said to her family members, “I brought you here to tell you a few things. First, these doctors and nurses have worked so hard to care for my son. I know there’s nothing they could do to prevent his death. Second, when he dies, I want him to have an autopsy. I don’t want anyone to suffer the way my son has. I’m telling you this now because I don’t know if I’ll be around when he goes, so you need to know this is what I want.”

  At this point, the aunt yelled, “I don’t want him to have no cut-up exam!”

  The mother said, “He’s going to have it. I will sign any forms. The docs need to know what happened to him so that other kids won’t suffer.” Then the mother looked at her teenage son who had not moved or made any sound. She asked, “Do you understand?” He nodded. Then there was a long silence as all three family members stared at the floor. Without any other word to us or to each other, they filed out and left the hospital. I found a quiet place alone and cried.

  About a week later our patient died. His death was peaceful and he had no pain, but there was no family present. After we declared him dead, the social worker produced the mother’s letter insisting on an autopsy. The autopsy was done promptly; the results were fascinating and instructive for us. About one month after our patient died, his mother insisted on an appointment so that she could understand the autopsy results. She arrived on time and sober. We thanked her for the kind things she said about us to her family. We described what we had learned from her son and how that would change how doctors will care for future patients. When she left the room she was crying, but with a Mona Lisa smile on her face.

  One month later, the social worker gave me a handwritten thank-you note from the mother. It had her real signature, not an X. I later learned that she spent the following six months talking to school groups about HIV and AIDS. Then she died from her own AIDS. Her thank-you note is a treasure I’ve kept for decades as proof that this transformation, this redemption, really happened.

  Date of event: Early 1990s

  The Tears We Shared

  Clara Escuder, MD

  She was a beautiful, petite baby, born into a very religious African-American family in the large East Coast city where I was in private practice. From the beginning we knew something was wrong—she held her fists too tightly clenched and had a very tiny mouth. We later learned Baby M had a genetic condition called trisomy 18, an extra chromosome in every one of her cells. I spoke with genetics experts at the university hospital and learned that Baby M’s condition was grave and most babies with this defect do not survive to their first birthday. I had never had a patient with this condition and rapidly became very bonded to this wonderful and loving family.

  Baby M had difficulty with feedings and gained weight very slowly. We discovered she had a heart condition, not uncommon in babies with trisomy 18. During those first days and weeks of her life, after a busy office day, I often spent time talking with her parents, discussing their concerns and fears. This was therapeutic for all of us—her parents were able to ask questions, cry, and express their deep love for their new baby. In turn, I was able to feel I was offering something to them when, in fact, there was so little I could do medically for their baby.

  My time with Baby M was very brief. She died at three months of age. Her heart couldn’t hold on any longer. The nurse I worked with
and I attended the funeral service at a local church, which was filled to overflowing with friends and family. There was such an outpouring of support and love, it was electric. Baby M looked as peaceful and beautiful as the day she was born, showing no evidence of the disarray inside her little body. We were the only non-African-Americans there, relevant only as an explanation of why I was noticed. Well, it wasn’t the only reason. I could not stop crying throughout the service. I sobbed and sobbed and sobbed. My heart was breaking for this family, and I felt I had not done enough for them or for their baby. I didn’t realize at the time how noticeable my anguish had been.

  Two years later I was notified by the university hospital that a family had requested I see their newborn baby boy in the nursery and asked that I become his pediatrician. As community pediatricians, it is not unusual to be called by the hospital to tell us of a new patient headed for our practice, but often that’s either by a random assignment by the hospital based on neighborhood, or following interviews with the family prior to the baby’s birth. It was unusual to be specifically requested by a family unfamiliar to me. I went to the hospital after office hours and met the new parents and baby boy—a handsome, robust little guy. I didn’t recognize the family and was sure I had not met them before. But the baby’s father said he had seen me before; he was the pastor at Baby M’s service, and he was also Baby M’s uncle.

  After his niece’s funeral two years earlier, Reverend E asked his brother, Baby M’s father, who that woman was who could not stop crying. His brother answered, “That’s our pediatrician.”

  The pastor told his brother, “The day I have a child, I want her to be our pediatrician.”

  During our training in medical school and residency, we often get the message, either directly or tacitly, that we have to be tough to get through the challenges and traumas of training and the practice of medicine. We need to separate ourselves from our emotions, never cry, “Be professional.” I learned with this dear family that tears and compassion are not a sign of weakness, but a sign of tenderness and caring and being human. The tears we shared, this family and I, created a lifelong bond between us. When my mother passed away twenty years ago, Reverend E came to the funeral with all three of his children—my patients—dressed in their Sunday best.

  I moved away from that city ten years ago, but Reverend E still calls me several times a year to say hello, to see how I’m doing, and to share the news of his now-grown children, Baby M’s first cousins, whom I had the privilege of caring for.

  Editor’s note: For another touching perspective on trisomy 18, as well as references for additional information on that condition, see the essay titled, “A Source of Light and Love” elsewhere in this book.

  Date of event: 1980

  A Child’s View

  Edward J. Goldson, MD

  In the practice of medicine, sometimes heartbreaking events take place. Adults, including caregivers and parents, often have trouble knowing how to respond to unexpected and potentially tragic circumstances. A lovely couple delivered their second, much-wanted and much-anticipated child: a full-term, good-sized, apparently healthy baby boy.

  Although the baby had the right number of legs, arms, fingers, and toes, and was breathing normally with a good heartbeat, the shock came quickly when the doctors and nurses took a closer look. The left side of the baby’s head was devastatingly deformed with a large encephalocele (a profound defect in the skull exposing part of the brain). The baby also had a large facial defect, a gaping opening extending from the mouth almost to the left ear.

  The doctors and nurses were saddened, understanding the implications of this horrific birth defect—multiple restorative surgeries with the possibility of brain damage, developmental delays, and even death. Needless to say the parents were devastated! After dealing with the immediate shock, the next question was how were they going to tell their five-year-old daughter about her brother, and should she even be allowed to see him? She had been so ex-

  cited to have a baby brother and couldn’t wait to meet him! Much discussion ensued among the doctors, nurses, social worker, and parents. Ultimately, the family decided their little girl should be brought to the nursery and intro-

  duced to her baby brother.

  With great trepidation on the part of all of us involved, the day arrived for the big sister, accompanied by her parents and the family physician, to visit the baby. The little girl didn’t seem to be much bothered by the adults who acted as if they were walking on glass shards as everyone entered the nursery. She curiously approached the bassinet, took a very thorough look at her baby brother, and said, “He’s cute!” There wasn’t a dry eye in the room among the medical staff observing the simple yet wonderful response of this lovely child.

  On that day, we were all reminded of the miraculous ability of children to teach adults how to be human and accepting.

  Date of event: 1997–Present

  The Miracle of Resilience

  Simon J. Hambidge, MD, PhD

  Some miracles are born out of tragedy. As a freshly minted supervising pediatrician at a large urban practice delivering care to low-income, uninsured, and vulnerable populations, I provided care to a newborn I will call Juan. He was a beautiful and healthy baby, his parents’ first child. His parents were not well-off, but his father worked two or three jobs at a time to support his new family.

  At the age of four months, Juan developed seizures and stopped reaching his developmental milestones. Although he was given a number of diagnoses, including infantile spasms (a severe type of seizure disorder) and cerebral palsy (or CP, a muscle and movement disorder), these were merely descriptive of his symptoms. We couldn’t determine the underlying cause of his condition, despite many, many tests. Early on, when Juan had only had a couple of seizures associated with fevers, I offered reassurance to the family, but my reassurances turned out to be false.

  By the age of six to seven months it was clear that he was not going to be the boy that his parents imagined and hoped for. Their pain was palpable. They wanted to know why this had happened to their son, and appropriately wanted everything done to figure out his diagnosis. One of my biggest challenges as a young pediatrician was dealing with the limits of medicine to provide the answers they were looking for. Throughout this time, they were never angry or resentful, and they kept their energy focused on what was best for Juan.

  Over the next nine years, although Juan had profound developmental delays, could not communicate verbally, and was confined to a wheelchair, his mother provided incredible care to him, and he was able to interact with her in simple ways. It seemed possible to tell his emotions, and the family did everything they could to make him happy, including exploring unconventional therapies, such as swimming with dolphins and riding horses. I saw him numerous times every year, and all our clinic staff knew the family well. I was always struck by the deep relationships both parents had with Juan, and how he seemed to be such a happy child despite his profound disabilities.

  As he grew older, his ability to handle his own secretions diminished, and he developed recurrent pneumonias from the accumulation of those secretions in his lungs. In his last year of life, when it became clear he would not survive much longer, I began to have conversations with his parents about alterna-

  tives at the end of life, and especially about the futility of heroic interventions (breathing tubes and breathing machines) when the lungs are so damaged that there is no possibility of recovery. Juan’s mother (who by this time was essentially providing home intensive care for him) understood this and did not wish to intervene further. But his father had a much harder time letting go, and for a time wanted “everything done.” One of my biggest learning experiences at that time was helping them navigate their different wishes. Both parents loved Juan deeply but were at very different points in their acceptance of his ultimate prognosis. By this time Juan required a breathing machine in the hospital.
Eventually, his father decided that he “did not want to see Juan suffer anymore” and the parents requested to have all mechanical breathing equipment removed. He died peacefully at age nine with family, physicians, and nurses in attendance. I was there that afternoon as Juan was taken off of his ventilator. His breathing slowed, and slowed some more, and he was serene and tranquil in his parents’ arms as he died. There were many tears—tears of sorrow, but also tears of happiness for a young boy who had been able to impact the lives of so many people, and to live to his maximum potential because of the love and devotion of his parents. Still, the loss of their beautiful boy and all the potential he embodied at birth was a tragedy for Juan’s family.

  Yet out of that tragedy emerged a miraculous resilience. I am still closely involved with Juan’s family eight years later, providing care to his three younger sisters. The oldest of the three remembers him; the other two were born after his death. But Juan lives on in all their memories, kept alive by a houseful of pictures and their family storytelling. And they are happy memories. His family celebrates his brief life and does not dwell on the many challenges he and they faced, or on their ultimate devastating loss.

  Juan’s life and death had an especially powerful impact on the oldest of his three younger sisters, the one who can remember him. She now attends a tough inner-city high school, but does well and is focused on her dream of becoming a nurse or doctor; she wants to specialize in pediatrics. If her memory of Juan can inspire her to pursue her dreams and become a pediatrician, ultimately caring for young children like her brother, that will be yet an-

  other example of the miraculous resiliency of this family in the face of tragedy.

  Being privileged to watch the family cope over all these years, it would be something of a personal miracle for me to see Juan’s sister become a pediatrician. I have told her I will mentor her in any way I can.