All That Moves Us: A Pediatric Neurosurgeon
am a pediatric neurosurgeon. That means I operate on children of all ages with brain and spinal cord problems. Those problems translate to tumors, blood vessel malformations, brain or skull development problems that need surgery, hydrocephalus, spina bifida, trauma; the list is long. I sew nerves back together if they are torn during birth using suture as fine as human hair. Some operations we do on teenagers on the verge of adulthood and some in the first week of life, including premature infants that weigh even less than one kilogram. I used to think that was small until I started doing spinal cord surgery on fetuses inside the uterus a few years back.
For the record, I don’t usually lead at parties with my work. When people outside the hospital ask me what I do, I tell them I work in healthcare. Then, over about five more questions, if they take it that far, the term “pediatric neurosurgeon” finally comes out. My wife tells me that nothing can bring a party to a halt like talking about the importance of car seats and bicycle helmets, especially if I start telling stories from work.
My father had wanted to be a doctor. I feel it is important that you know that before we get started. Well before I was born, he had considered leaving a successful career in business and entering medical school. It was risky, but as a Korean War–era National Guard pilot he was used to risk. Earlier in his life, just after air force flight school and before the start of his first job, he had worked with a family medicine doctor, and the experience never left him. The kind older doctor had given my father his own stethoscope after their time together and told him that he would make a wonderful doctor one day. I have that stethoscope now. There is a little inscription on the bell that has Dad’s name and “MD” after it. It’s like a relic from an alternate history. In a brief one-year push after leaving the working world, my father took postgraduate classes and passed entrance tests and came to the very cusp of getting himself there, but by then he had two small children and a wife at home and no way to pay for it or to make any kind of living for them. He tried. I’ve seen the letters detailing unsuccessful attempts to secure the finances necessary for tuition. So, over time, he set that dream aside. Then, years later, I was born, a third child, very unexpected. From nearly that moment on, it was his hope that I would be a doctor.
At least initially, I fully bought into that dream. As a child, a few times I found myself interested in other careers. I was fascinated by flight and wore my father’s flight helmet around the house. Taking that path, I was told, meant too much time away from family. Such irony now. Focus on what could be accomplished on the ground. I realized just how pleased my parents were when I wrote my grade school career essay on being a doctor.
Over time, like most teenagers and proto-adults, I decided to take a different path, make my own way. I became an English major and tried to focus on writing but somehow, somehow kept taking premed classes and did well enough on the MCAT to get into medical school. I studied Joyce and Yeats and Shakespeare in college with professors who had trained at Trinity College in Dublin and at Oxford, and I took creative writing from Barry Hannah one semester and Ellen Douglas the next. The former pinched the filters off whatever cigarettes he was chain-smoking at the time in our small by-permission-only class and gave me a B minus on my writing. The latter sat with me and helped me and later wrote to me in a copy of Black Cloud, White Cloud, “To Jay, whose works I remember with great fondness.” (And no one knows until right now that I turned in the same stories to them both.) Despite all of that, I looked up after boarding school and college and found myself in medical school living my father’s dream, and that was just fine. I thought maybe I was there to learn something about what it means to be alive. I really had no idea what was to unfold over the next twenty-five years.
I cannot even begin to count the number of people outside the field who told me not to be a neurosurgeon. You are nothing like them, they said. Neurosurgeons are tired and grumpy. Egotistical. They work too much. The patients do terrible. Everyone dies. At first, during my medicine rotation, I really liked cardiology. Listening to the heart and performing the physical exam became the hinge point on which all later decisions were based. Measured presentations, well-conceived plans. Did you know that you can diagnose aortic regurgitation by a bobbing uvula? Does anyone know that now? But back then we did. The men wore ties and the women wore scarves, and we slung our stethoscopes around our necks and diagnosed murmurs, rubs, gallops, squeaks, and rumbles as if we ruled each and every hall of the hospital. John Stone, the writer/cardiologist from Emory, had signed his book of essays for me when I was a first-year student and working in the cadaver lab. He said I smelled like formaldehyde. “To Jay, at the beginning…”
Three months later and I thought general pediatrics was terrific. The chief resident caught me coming in early one morning to feed the babies. If you feed the babies, you’re gonna do peds, he said. But it wasn’t all the babies. It was this one baby. He was by himself in the crib, no visitors ever. Born with an addiction to crack, I think. He was through the worst of it, but he was still alone. Other babies had family members come in every day, sit with them in rocking chairs. But not this one. I remember, even now, holding him in my lap early in the morning before anyone else would see me and looking down at his tiny head, the little ridge running down the middle where the bones overlapped under the skin. I would come in early to feed him and to try to let him feel what it was like to be safe. I just knew that I had so much love and support in my life to spare that it overflowed all around me, and I wanted him to feel just a little. But then after a few weeks, he was gone—discharged to where and with whom I was never told—and then I moved on to the next rotation, which was surgery.
Which is where I learned that I would definitely have to do something with my hands. I would stay and stay and stay, just to operate. I remember an attending named Dr. Reggie at the VA hospital during my third year as a medical student. Dr. Reggie would let me operate with him. Let’s see if Wellons was paying attention, he would say to his resident. Let him try those bowel stitches. And I was. So I did. Late one night, we saved a vet from renal failure by cutting off his leg, which was dying and knocking out his one good kidney. The complicating issue was that there was a metal bar in his femur because of an old fracture, and we couldn’t cut through it with the equipment we had in the OR at 2:00 in the morning. The electric blade was nearly vibrating me apart. So Dr. Reggie had the guys who work downstairs in maintenance help. They loved Dr. Reggie because he always treated them with respect. So he called them up into the OR in the middle of the night and asked them to find us the biggest saw they could and to sharpen it up and sterilize it while we waited. After a while, in was brought something you see contestants use in those two-person log-cutting contests. He and I went back and forth, back and forth, back and forth. There were sparks, I remember. The patient had to be awake but numbed under spinal anesthesia because he was too sick to go all the way under, the anesthesiologist concerned his blood pressure was too low and his heart couldn’t take it. I remember him looking over at me, from around the drapes as I was sawing, and he said, “Lord Almighty.” Then we were through it and my hands hurt but we saved him. I knew then that I wanted to save people.
Later, during my official surgery rotation, there was a pediatric general surgeon, Dr. Miller, who was beanpole tall and skinny, had alopecia totalis, no hair anywhere (they said), and was the busiest man I knew. He could do just about anything in the operating room. He had pulled more than a thousand coins out of kids’ airways and stomachs, and he saved each coin in one of those little books with the slots. (I still have one of those books from my own childhood, full of coins in paper coin holders with clear plastic windows.) Over time, Dr. Miller cataloged the coins he had pulled out and figured out which coin was the most commonly swallowed. Avoid those from the Denver Mint, I tell you. He would regularly give a talk about how statistics could be misused to find a meaningless answer. He would teach us exam findings and X-ray reading every day on rounds and in the OR. Every Sunday morning he would put on a formal lecture to the students and residents he called Sunday school. He was beloved, and I wanted to teach as he did and be beloved by my students one day just as he was. His daughter was in my medical school class; I met her when I inadvertently flicked one of my cadaver’s toenails into her grimy dissection coat pocket in the first month of class. Despite this, she became one of my closest friends, later a bridesmaid in my wedding. A few years ago, I left after my last patient in clinic one day to drive down to Mississippi to Dr. Miller’s funeral. When I walked in, she, her husband, and their four teenage children all broke from the receiving line to hug my neck, and we all stood there and cried together for a while because they knew how much Dr. Miller meant to me and what he stood for and what he did for thousands and thousands of children. And for me.
So, from cardiology I knew I loved the physical exam and from pediatrics the innocents (note, not innocence). From surgery, I was drawn to working with my hands and saving people, and from Dr. Miller, I learned that I wanted to teach and be valued by my students one day. I knew it was time to decide on my residency, but I also knew that neurosurgeons were burned out and not like me.
But throughout my entire time in medical school, I would watch the sea of people part in the emergency department (ED) and in would come the neurosurgery resident. They would do a quick exam, order a CT, speak calmly with the families, then methodically move on to the next emergency. Walking down one problem after another. The ones I met were tired and grumpy and worked too much and acted a little odd with everyone else—me too, at first. It was like they lived in a different world from the rest. But pretty soon after I began a formal rotation with them, they didn’t seem so odd anymore. They started teaching me about the brain and the spinal cord at any spare moment we could find. They would sit with me late into the night in the midst of the chaos of the ED around us and draw complex diagrams like the nerve innervation to the muscles of the arm or a rough drawing of the cranial nerves that I still draw for my students to this very day. The patients we took care of then had blood clots from car wrecks, spine injuries to fix, brain tumors we would take out, or all kinds of problems with their central nervous system that would take the patients, human beings just like you or me, nearly over the edge. And we would pull them back. Not always, but most of the time. I stayed at the hospital during Thanksgiving break of my third year of medical school just so I could work with the residents, and I remember feeling like I had two hands full of thumbs and was invincible at the same time.
For weeks, every time I would walk past the neurosurgery operating room, I would stop and look inside to see what they were doing. Not once or twice, but every time. One hundred percent of the time I would stand on my tiptoes to peek in through the little square window in the door. So, one day I decided that I would just see and I did see and I thought that I could connect with people and save people and teach people and be a neurosurgeon because I was like them in many ways, after all.
My first two years at Duke for my residency were a blur. That two-year blur turned into a six-year blur. How I had gotten to Duke from Mississippi in the first place remains a mystery, but had something to do with the fact that when I rotated there for a month as a medical student, I could work a long time without quitting, and if I did not know an answer, I would not make something up but would go find it out. The blurring of that time also comes from the fact that in the last year of medical school, on the verge of my journey into this remarkable life to be lived, my father became ill with ALS—amyotrophic lateral sclerosis—a relentless neurodegenerative disease leading to paralysis and death for which no surgery or intervention is available. I left him in Mississippi, and one year later, the busiest and most intense of my life to date, he was suddenly gone and I was left with a path stretching out in front of me. For all my uncertainty about how I would spend my life in medicine, it is but one irony that I would devote my career to trying to better understand the anatomical system that had failed my father. I know now that I would come to see him in the patients that I cared for, and also see myself in the families’ grief.
The reality of life-and-death choices quickly burns away any idealized idea of invincibility. I remember early on an attending telling me he wanted my asshole to blanch when I took care of his patients. He told me this while making a tight okay sign, his index finger circled tightly within the crease of his thumb and squeezing it tight enough to make the skin of the finger white—to be clear, the whole thing representing my own anus, blanching. Good gosh, where am I? I thought. We would work hours on end. I would fall asleep with food in my mouth while eating. I hit the same tree—thankfully on a slow curve—twice in a month while driving home well after midnight. I fell asleep operating. No amount of caffeine or adrenaline can counter the kind of tired you get after being awake for two nights straight on a routine basis. Now the term is “sleep deficit” when fatigue builds up like that over time. Back then, it was just how things were done, without question. You just persevered, or you either dropped out or were fired. As a resident, you find quickly that you are just trying to stay afloat in the rapids without drowning until all of a sudden you are done.
Amid that chaos of becoming a neurosurgeon, I was drawn to the cases that involved children. I watched as the pediatric neurosurgeons moved with the parents and the children from the anxious unknown of diagnosis through the delicate surgical interventions and finally into the relief of recovery. For the child, it was simply a chance to heal and live; theirs is the most innocent view. I hurt; now I hurt no longer. For the parent, it was the intensity of the emotions that come with the anguish of a life-altering diagnosis in your child and the trust necessary to allow another human being to intervene. For the surgeon, it was the opportunity to fundamentally improve, or even bring back, a child who is pure potential, for whom nothing is truly determined and all possibilities exist.
There is a word, “pluripotent,” typically used to describe stem cells, incredibly important microscopic structures within our bodies that have the ability to become nearly any other cell line—and this part is key—depending on the influence. Over the years of operating on child after child, often having a profound impact on their lives, feeling deeply blessed in order to have done so, and seeing them grow into adults, I began to feel that I was being called to help release that potential into the world, one patient at a time.
But something else happened during my training that influenced me to go into pediatric neurosurgery. I met more pediatric neurosurgeons—one in particular named Tim George. Because of a research project on brain imaging I had worked on with Tim at Duke, I went to a national meeting of pediatric neurosurgeons during my residency in order to present the work at the main session of the meeting. After a single day of hearing others speak at the microphone and meeting leaders and others who would one day become my mentors and then my peers, my wife, Melissa, a medical student at the time who had accompanied me to the meeting (her first too), turned to me and said, “You are among your people here.” Literally, that is what she said, as if I were in a group of tourists in Wales and had just found out that I was Welsh.
It turns out we’re a relatively small group. There are only around 250 or so of us across North America. Twenty percent of us are women, a higher number than for any other neurosurgical subspecialty. That number continues to grow, and we are clearly better off for it. Not surprisingly, we tend to the eccentric as well. At our national meetings when one of us begins to drone on and on at the lectern, there is a ceremonial gong that is enthusiastically banged, signaling Enough! I believe that we get along so well because we’ve lived the experience of taking care of kids who get well and kids who don’t. Parents who are grateful to you or never want to see you again. Hours spent in the OR negotiating with a higher power for the bleeding to stop, the tumor to finally peel out, or the brain swelling to go down. I’ll do whatever you ask, God, please. Just help me get this thing out.
Becoming a board-certified pediatric neurosurgeon requires an extra year after residency called a fellowship, and I decided to spend that year with a remarkable group led by a man named Jerry Oakes at the University of Alabama at Birmingham. He had been on faculty at Duke years before my time there and was highly regarded. Thankfully, there was much less conflict and more sleep in that year, despite the twelve-hour days. The hours spent in the operating room taught me many things, none more important as a surgeon than how the nervous system changes over time in its three-dimensional structure. The brain and surrounding structures of a premature infant are vastly different from those of an eighteen-year-old, and I came to understand the importance of time itself as the fourth dimension of anatomy, the sizes of structures, and the key relationships between them and the fragility of all of it growing, evolving, as a child ages. This would come to be a fundamental tenet of my teaching to the residents and medical students, and also a testament to the wondrous nature of the human nervous system.
Then you are done, eleven years after you graduated from college. Most wizened neurosurgeons would tell you that this time is when the real learning begins. When you are in charge, after you’ve finished your residency and become the attending, no one else scrubs in after you or walks in the hospital room or clinic room behind you. You are the one your patients and their parents trust; they see you as the way out of the nightmare that put them in front of you. I’ve been a pediatric neurosurgeon for nearly two decades now. I spent ten years in Birmingham and will soon complete ten years here at Vanderbilt. In the course of my career, I have done thousands of operations. Fetal operations are the most wondrous; trauma, when successful, the most gratifying. Tumors and vascular malformations are the hardest. Hydrocephalus the most routine, yet maddening when the smallest divergence from that routine brings about failure. I have made mistakes, have regrets, and also have some of the most wonderful memories that one could imagine. I have told families right before emergency surgery that I had to leave—this is not a sit-down conversation, I told one young couple after a ruptured brain aneurysm threatened their infant daughter’s life—I just couldn’t talk any longer, because I had to get into the OR to start saving their child. I’ve been yelled at, occasionally threatened when I couldn’t stop the inevitable, and each time tried to understand how hard it was for the parents. I’ve cried with the parents from relief and sometimes from sadness. I’ve cried in the locker room when no one else was there and the tears welled up from a place I thought I had under control.
Years ago, I was asked to be involved in a case of recently born conjoined twins connected in the back of the heads who were very premature, so small and fragile. One was starting to get extremely ill from necrotic bowel—the intestines had started to die off, which can happen in extreme prematurity—and the blood toxins were threatening the other infant. We decided to try an emergency separation. Minimal films, dying children, no time for the weeks of preparation a case like this would normally take. It was a Hail Mary if ever there was one. Through the skin exposure and the craniotomy and then the dural opening, we’d lost less than a thimbleful of blood. All was going well, the vital signs were actually improving under anesthesia. But then, after three hours of surgery, as we worked deeper and deeper to separate the brains by coagulating the hundreds of tiny blood vessels connecting the two children, there was a little more bleeding. And then from down deep in the two connected brains there was a lot of bleeding; so much and we couldn’t pack it off. The anesthesiologists were pushing blood into the twins’ IV, and then all of a sudden I was cutting the joined skull with scissors, all hope of delicacy abandoned, trying to get them separated so that my partner and I could each take one and stop the bleeding.
And then the bleeding stopped.
It stopped because all bleeding stops. They had both died, and I remember that I couldn’t see to sew and tears were falling onto the twin in front of me. I was sewing them up so that the parents could at least hold their babies one time, separated. We should have sacrificed the one for the other but we went for both and they were both gone and I still remember standing there unable to see.
For many years, I’ve kept an imaginary place just outside my vision, a plain field with very green grass. It came about out of necessity to give me a place to put these memories. When I would encounter something beyond comprehension, something that would cause me to question my faith or fill me with profound sorrow, I would sit quietly and think of that green field just outside my perspective. I would picture myself walking along the row of small mounds until I would find a new place, untouched. I would remove the sod and dig a hole in the ground and put the memory of that child whose story ended in sadness in a box. Then I would bury the box in the hole in the field and replace the sod and tamp it down to a little mound. Each time, I would do that. Then I would leave that green and walk back into life.
Then, in the summer of 2017, I watched as a CT scan scrolled on my computer screen as I had done thousands of times over the prior twenty-five years followed by a conversation about how it was a tumor and that there were different types, both benign and malignant, and that this looked malignant and we’d need to get some more images and then do surgery. This time, though, instead of my saying those things, it was me hearing them. There was a tumor the size of a racquetball in the muscle of my pelvis and upper leg, right over the nerve that controls your leg (How many times have I exposed that very nerve?), and it looked malignant, so I had a radical resection to take it out, and it did come out, along with some muscle necessary for walking around. Later I remember looking at it under the microscope with the pathologist so he could prove to me that it was benign, a one-out-of-a-million chance—the books actually said that. It was so odd to be looking at a part of yourself that had grown out of control. After the first surgery, there was a second to try to close the defect and then a third followed by strict bed rest. For ten weeks.
When you are on forced bed rest after having worked at warp speed for as long as you can remember, and you’re feeling a little sorry for yourself, suddenly you realize, Hey, it was benign, dumbass, and it was not in the brain or spinal cord or chest or gut but in the muscle of the upper leg and that you will walk again one day, with therapy, and you begin to feel like you made it through an existential threat and that makes you think back through your life a little. And I remembered John Stone’s note to me in the front of his book so many years before—“To Jay, at the beginning…”—and as I thumbed through that book while on bed rest, I thought about how I had gone to medical school to learn how to better understand life itself. And I thought of all the paths I had been privileged to cross since then, all the lessons I had learned.
It is not a surprise that we are all fragile. None more so than the littlest among us. The dark and unknown that we all face make us more so. But life wants to live, and I have learned that we are also extraordinarily resilient. None more so than the littlest among us. A child comes to us with a particular problem that requires intervention on the most sacred part of their being, the brain or spinal cord, those parts that make us essentially human. I most often feel that operating on them has had the effect of making me more essentially human, that as much as I have healed, I have been healed.
Now it is time to tell the stories of these remarkable children and our journeys together.
Prologue: The Littlest Among Us
Chapter 1: The Reminder
Chapter 2: Stitches
Chapter 3: The Brain and All That Moves Us
Chapter 4: Ninety Minutes from You by Ground
Chapter 5: We Have a Protocol for That
Chapter 6: GSW to Head
Chapter 7: Family Charades
Chapter 8: Rubber Bands
Chapter 9: Last Place
Chapter 10: See One, Do One, Teach One
Chapter 11: Conversations
Chapter 12: November-5411-Yankee
Chapter 13: Anger
Chapter 14: Bucket Lines
Chapter 15: Rupture
Chapter 16: On the Morning My Father Died
Chapter 17: Birth
Chapter 18: A Mississippi Nick
Chapter 19: Luke’s Jump
Chapter 20: Shock Waves
Chapter 21: Closure
Chapter 22: The Other Side
Chapter 23: The Whole Miracle
Epilogue: Millimeters and Trajectories
About the Author
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|Epub||July 7, 2022|
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