13. Bringing It Home

After a year and a half in Ethiopia, it was time to return to Stanford to complete medical school, this time alone, Irina and Misha having returned to the family home in Portland. Thereafter began a regular pattern of visitation with Misha. Misha spent part of the summer and winter holiday vacations in New Jersey with me at my parents’ home and later at all my future locations. Misha loved my parents and we all looked forward to those visits. Despite the four thousand kilometres between Portland and New Jersey, I was able to maintain a cordial relationship with Irina so that Misha could benefit from both families who loved her.

All I had to do to graduate from Stanford was a six-week clerkship in obstetrics and gynecology, some internal medicine outpatient clinics and a surgical subspecialty rotation in urology, plus some elective time. I began with the elective time, in which I cared for babies in the premature intensive care unit at Stanford University hospital.

The chief of the unit, Dr. Philip Sunshine, gave me serious clinical responsibilities, and we carried out an unpublished study on the establishment of diurnal variation in corticosteroid metabolism in premature infants. This required me to sleep in the nursery and take blood samples at regular intervals. I had to do my own analyses of the blood samples to measure the levels of corticosteroids produced by the premature infants’ adrenal gland. I accomplished the analyses under the supervision of Dr. Bob Greenberg, my role model as a pediatrician and scientist. Initially, I so wanted to be like him, a bench researcher, that I was willing to work in a dark room in the basement while I did the analyses. But I learned that I hated the laboratory, which was so central to his work. We kept up our relationship even though, in the end, I followed a different path. Bonnie and I feel fortunate to have spent time with Bob and his wife, Maggie, a few months before Bob died suddenly while watching a live college basketball game. I marvelled at his positivity and determination, even though he was on supplemental oxygen in the years and hours before his death. Into his nineties, Bob still had many plans for the future and continued to try to make the world a better place for children and families.

Dr. Bob Greenberg, my first mentor, in his late eighties.

Soon after my return to Stanford, I was paged to come to the pediatric outpatient clinic, where I met a woman who looked vaguely familiar. She was accompanied by a boy about three years old. She refreshed my memory of the case in which, as an early third-year medical student, I had played a minor, mostly observer role. Her ten-month-old boy had presented to Stanford with a huge liver and severe jaundice and pallor. I had done the initial assessment of the situation and presented my findings to my supervisor. On open biopsy it was clear that he had an aggressive, untreatable end-stage liver cancer, which also caused his severe anemia. His condition was destroying his red blood cells. My teachers determined that there was nothing to do. The abdomen was closed and the boy was sent back to his home in a rural setting with the admonition to love him the limited time he had left. Although medically I had nothing to offer, I had spent significant time supporting a distraught mother.

Here was that same boy, looking perfectly healthy. The mother had remembered me as a medical student and paged me to show me her apparently healthy son.

I was astonished. My jaw dropped, and I said: “What happened? How did you manage to get him well?”

She replied, “I found Jesus, and I divorced my abusive husband.”

“Good for you,” I replied. As young medical students we were more open and relatively unbiased. That is not always true. Some medical students, in their total identification with the “real medicine” they struggled so hard to learn, dismiss “soft” concepts, preferring “hard” science. A case like this can also shake the confidence of the learner and even cause him to question the very discipline he’s chosen. Many early learners prefer to dismiss the “unusual case” as a fabrication or aberration. At the time, I cannot recall being more inquisitive or introspective about this miracle case. I just accepted it.

At the mother’s insistence, a couple of fine needle liver biopsies were done. No evidence of tumour. Throughout my career in pediatrics, neonatology and, ultimately, family practice, I continued to be exposed to inexplicable cures, teaching me to be very careful about giving negative prognoses, even in the face of almost certain death or extreme disability. Giving an absolutely negative prognosis, I was to learn again and again, would demotivate the families of both small children and adults. Moreover, the plasticity of the human brain and the resilience of humans regularly proved the experts wrong, even when it was impossible to understand why patients got better when they ought not to, whereas others who ought to do well did not. What I was learning was that negative prognostication was something that families and loved ones never forgot, but a positive or even a wait-and-see-attitude, motivated the families and encouraged them to try to improve a dismal situation, which enhanced recovery. I wondered what this negativism was all about. Were we afraid to be wrong, to give false hope?

In my later practice, I often wondered why many of us tended to emphasize the negative, rather than the amazing capacity, from very small newborns to adults, to recover and thrive after birth trauma or severe accident. After all, if things go badly, you can always change your mind.

A better approach to family members of very sick and apparently damaged newborns or adults is to be modest, saying: “Although I am as concerned as you are, I have seen patients just as sick who recover and some who ought to and don’t. I can’t know in which category your family member will be. I do know that negative prognostication can lead to the family giving up and withdrawing, whereas families who engage with their sick family member enhance recovery.”

As a neonatologist in the 1970s, I shared other neonatologists’ great skepticism about the future for the very small premature infants in our care. Neonatologist Saroj Saigal has followed very small infants who weighed in the range of eight hundred to a thousand grams at birth for an astonishing thirty years. She compared them to a matched sample of babies of normal birth weight.1 Most of the tiny survivors live normal and productive lives, are married and have educational degrees. Some have minimal deficits and a few have severe deficits, but overall their quality of life as a group is comparable to the normal-weight newborns.

In her powerful book Fallen, Kara Stanley details the care her husband, Simon, received when he was in a deep coma after falling off a roof.2 On arrival to hospital by air ambulance, Kara was exposed to the first of many negative comments. The trauma team gave a dismal prognosis, employing the Glasgow Coma Scale.

This scale is good for getting an idea of prognosis for a population of patients, but it may not be useful for individuals. Simon’s result was 3.3, the lowest possible score.

After Simon’s craniotomy, Kara received a relatively positive statement from one neurosurgeon: “The underlying tissue beneath the bleed looked good. There is room to hope.” As this doctor spoke of hope, Kara remembers that his facial expression and body language conveyed anything but.

Soon after, a young neurosurgeon contradicted the senior neurosurgeon, saying: “Simon’s brain injuries are global and diffuse. If he survives, it is impossible to predict which areas of the brain might be affected, possibly all of them. The bleeding in his brain is extensive, and blood is toxic to neurons. Wherever there is blood, neurons have died. The underlying tissue does not look good. His brain is soaked with blood, like soup with neurons swimming in it.”

Other comments from physicians and nurses included:

But an ICU nurse said: “You spend days working with someone you are certain is hopeless. A few weeks later you meet them in the hospital hallways, awake and responsive. Then it all feels worthwhile.”

Kara, who is a fine writer, never paid much attention to negative prognoses. She filtered them out and fully engaged with Simon, even when he was in a coma. Although Simon is now paraplegic, he has recovered full use of his upper body and his hands. He is fully engaged with his family and is a well-regarded guitar player and singer/composer. He lives a positive and productive life. Simon’s recovery fit well with the many experiences that had shown me the importance of prognostic modesty in medicine.

As a medical student returning to finish my last year at Stanford medical school, I still had some elective time left. I took a six-week elective in the newborn intensive care unit. One of my responsibilities, which meant I was regularly on duty alone overnight, was to be in charge of premature infants in various states of illness. This was perhaps the first of a series of assignments where, because of my Ethiopian experience, faculty would give me more responsibility than was usual for a medical student or resident. Although I had “lost” a year from medical school while in Ethiopia, I was regularly promoted or advanced to positions of more responsibility, such that I did not lose any time at all.

In 1965, premature infants with hyaline membrane disease, called respiratory distress syndrome (RDS), were for the first time being supported with respirators. At Stanford, on Dr. Sunshine’s newborn unit, we adapted adult respirators for the purpose but only for the sickest. There were many problems with equipment that was designed for adults. We knew that the respirator tubing was too long for such small infants, whose weight was generally in the range of 1,200 to 1,700 grams. As well, the equipment was not sensitive enough for the task. But we did what we could. Neonatology was just developing as a specialty in those days. As the results were so poor with those early devices, most neonatologists resisted the use of respirators.

On duty one night, I became increasingly concerned about the well-being of one premature infant in respiratory distress. His condition was deteriorating. It was becoming more and more difficult for me to maintain the infant’s oxygen level. I had reached the limit of what the respirator could do. Knowing that I needed help, I looked on the list of covering attending physicians. At about 3 a.m. I called Dr. Marshall Klaus. I had never met him. Dr. Klaus arrived in good time and examined the infant and studied the blood oxygen results. Expecting some help, I was stunned to hear him say: “What do you think this baby is thinking?” I don’t remember exactly what I said, but I might have been a bit rude.

Dr. Klaus then said: “How do you think this baby’s mother felt when she had to go home and leave her baby behind?” I am sure that my response was less than positive. But I do remember vividly what he next said: “Mr. Klein, this baby is going to die and there is nothing further that we can do for him. Let’s think about what we can do to help his unfortunate mother.”

I could not relate to Dr. Klaus. I was still in cure mode. Dr. Klaus was looking at the big picture. At the time, I didn’t know that he was deeply involved with Dr. John Kennell in the care of premature infants, and he was about to publish one of the first studies on maternal-infant bonding. Developmentally, I was not in a mindset to appreciate Dr. Klaus, but it was not too many years later that I was consulting him regularly. He became one of my key mentors, a relationship that continued until his death in 2017 in his early nineties.