Forward by Arianna Huffington:
The title of this book couldn’t be more apt for what you’ll encounter in the pages ahead. As you’ll find out, there are no stories in this book about the brain that don’t involve equal contributions from the heart. And that’s because David Sandberg is as gifted a storyteller as he is a neurosurgeon.
As he writes, “performing surgery on the brain is unique. The brain not only controls the rest of the body, but it is also where our consciousness lives.” But it’s not where our full humanity lives. Drawing on his work as a pediatric neurosurgeon, Sandberg takes us inside many operating rooms, deftly explaining the high-stakes situations at hand. But he also emphasizes that many of his most meaningful moments take place outside the operating room, in clinics where he sees patients—as young as eight days old—before and after surgery, in emergency rooms where harrowing life-and-death decisions have to be made, and, especially, in communicating and connecting with families who are in the darkest moments of their lives regarding what they hold most precious: their children. Brain and heart. Life and death. Those are the stakes in all of these stories.
You don’t have to be a neurosurgeon to be humbled by the brain—an organ that, as Sandberg writes, “is infinitely complicated yet also unpredictable.” And you don’t have to be a doctor or a patient to be profoundly moved by Sandberg’s stories. Hope, loss, joy, heartbreak, grief—as Sandberg shows, these are all part of an average day for a neurosurgeon. But they are also qualities essential in all our lives, and reading this book puts them into stark relief.
Of course, Sandberg isn’t just a neurosurgeon, but a pediatric neurosurgeon. In chapter 3, he writes about helping families process the “unthinkable”—a fatal diagnosis, or that their child didn’t make it. “Parents’ worst fears are realized when they hear me utter dreaded words— ‘Your child has a brain tumor,’” he writes. Sandberg tells the story of a three-year-old named Diego, who was diagnosed with a malignant brain tumor that couldn’t be operated on. Nor would chemotherapy work. Radiation could be used, but that would only prolong life for a few months, which would be miserable. After hearing this grim news, Diego’s parents, after a day of reflection and prayer, tell Sandberg they’ve elected to forgo treatment and take Diego home. Sandberg expresses his sorrow, hugs them, tells them what great parents they are, and then, as he says he’s done many times in his career, “went home and hugged my own kids a little longer than I had the day before.” And after reading this book, you will, too. And if you’re not a parent, you’ll have the impulse to hug those closest to you. Life for neurosurgery patients in the emergency room and on the operating table is very fragile. But it’s always very fragile, for all of us, even if we take it for granted.
In fact, the lessons of Brain and Heart are universal and deeply relevant to all our ordinary lives. There are plenty of triumphs, like the story of Marcela, an eight-year-old from Honduras, which has many twists and turns before its unlikely and exhilarating conclusion. But it also hinges on a few pieces of luck so remarkable that the relief is tinged with thoughts of all the other children who weren’t fortunate enough to cross paths with Sandberg.
In pediatric neurosurgery, as in life, there is good news and there is bad news. For the latter, in those hard conversations with parents, Sandberg writes that he focuses on three key components: compassion, honesty, and listening. That’s a good guide for any meaningful conversation. When receiving bad news, Sandberg recounts, parents react in all sorts of ways: rage, denial, wailing, and silence. And each of these is deeply human and valid—there is no “right” way to process life’s most difficult challenges.
Sandberg also writes about work-life balance. Being on call as a surgeon often means demanding hours—as does the training in residency, when one hundred–hour weeks are common. He notes that the divorce rate at one neurosurgery residency program was over 100 percent— because some residents actually got divorced twice. But at the same time, Sandberg writes that he has never missed a family birthday or important event: “I encourage medical students considering a career in neurosurgery to understand the challenges of this road but to also know that it is possible to be a neurosurgeon and still have a wonderful family life.”
Prediction: You will come away from Brain and Heart with a greater appreciation of safety. If your children don’t wear a bike helmet now, they will after this book. Likewise, you’ll feel a sense of outrage at our gun laws after seeing the horrific downstream consequences through the eyes of a pediatric neurosurgeon. The book is also eye-opening about the issue of health equity, with some of the most heart warming and heartrending stories coming from Sandberg’s humanitarian relief missions to places like Guatemala, Mexico, Haiti, Peru, and Uganda.
A word of warning, however. Though this book is hard to put down, I would caution against reading it in public, as you will likely burst into tears regularly. Some of those will be tears of sadness, and some will also be tears of joy. And because of the aforementioned unpredictability of the brain, one can change to the other very suddenly.
Most of all, what comes through is Sandberg’s heart. As he shares, he didn’t plan on becoming a neurosurgeon—in many ways, neurosurgery seems to have chosen him. And we can all be thankful for that. What these stories lay bare aren’t just the riveting medical mysteries of the brain, but our essential humanity, and what really matters when everything else is stripped away. Sandberg writes that he’s come away with a better appreciation of a saying from the Talmud that his parents taught him growing up: “A person who saves one life is as if he saved a whole world.” We can’t all save lives in this way, but we can all make a difference to those around us. And you’ll be inspired to after reading this book.
INTRODUCTION:
I remember the very first moment I saw and touched a human brain. The exhilaration of opening up a skull and seeing the brain pulsating with every heartbeat is hard to describe. Knowing that the tissue I was looking at controls the amazingly complex functions of thinking, feeling, talking, seeing, remembering, and performing complex motor tasks—all that makes us human—blew me away. Almost thirty years later, the experience remains just as profound.
The allure of performing surgeries is only one component of the day-to-day experience of being a brain and spine surgeon for children. Many of my most meaningful experiences take place in the outpatient clinic, emergency room, or surgical waiting area where I communicate with families. In these locations, on so many occasions, I need to take a deep breath before walking into a room, sitting down, and having one of the most important conversations in the entire lives of those families. Before entering that room, I need to put aside everything else going through my mind—other patients I am caring for, other families or doctors waiting to speak to me, emails and phone calls waiting to be returned, things going on with my own family—and fully focus on the critical task at hand. I am aware that the conversation I am about to have will be remembered for the rest of their lives. Every facial expression I make and every word I choose may be critically important in guiding life-changing decisions.
On some days, I am the bearer of the very worst news imaginable to parents—that a child has died or has no hope of surviving a devastating car accident, a gunshot wound to the head, or spontaneous bleeding in the brain. I have told parents that their child may live but will never walk or talk again. Parents’ worst fears are realized when they hear me utter dreaded words—“Your child has a brain tumor.” Sometimes I have to give parents this news at the same moment as additional tragedies are occurring, such as the death of another family member in the same car accident or while another immediate family member is also dying of cancer. As a parent whose children are my whole world, I recognize how crushing my words are to these parents.
These conversations are never easy. In fact, many doctors choose non-pediatric specialties to avoid giving bad news about children. On the other hand, I also have the great joy of celebrating the most wonderful news with parents—that their child has made a remarkable recovery after a serious surgery or is cured of her brain tumor and will live a normal life. In fact, I give good news much more often than bad news, and these conversations are rewarding beyond measure. In a single day at work, I often experience a roller coaster of emotions—sharing the worst devastation with some families and the greatest exhilaration or relief with others.
Sometimes I face the challenge of helping parents make difficult choices about their child’s health when critical decisions are not black and white. All surgeries have risks and benefits, and existing medical knowledge has not defined the best path forward in all situations. In many cases, there is no perfect choice, and parents must choose between two bad options. For example, they might have to choose between waiting to see if a benign brain tumor will grow on its own and cause loss of a patient’s hand function versus undergoing a surgery that has a five percent chance of causing an immediate and devastating loss of this same function. The hardest part is that, so often, there isn’t an obviously correct decision, and the parents will never know the outcome of the opposite choice.
In each of these conversations, I recognize that every word I say is important, and I choose each one carefully. I try to be as compassionate as possible while being completely honest. It has often struck me that, during these conversations, parents hang on to my every word and try to process what I am saying but have no idea what is actually going through my mind. The purpose of this memoir of my life as a pediatric neurosurgeon is to openly share what I am thinking and feeling during each of these conversations. In the pages that follow, I tell the stories of patients who have changed my life and the joy, heartbreak, uncertainty, and physical and emotional challenges that come with performing brain surgery on children. I bare my soul, sharing with readers something they otherwise would never have access to—my private thoughts when I make the most complex choices that change the lives of my patients and their families forever. The reader will understand not only the demands and rewards of being a pediatric neurosurgeon, but also what I go through emotionally when I make agonizing decisions or give parents the worst news imaginable.
Why do I want to share my innermost thoughts and feelings when having a difficult or emotional conversation? First and most important, I think that it would greatly benefit families to understand what is going through the mind of their child’s doctor during these moments. I want families to know the truth—that even the most experienced doctors have fears and insecurities and sometimes make mistakes. I want families to understand the context of my thought processes by knowing what I went through during my training and what a day in my life is like. I want families to know what keeps me awake at night.
I want families to know how I emotionally process unpredictable outcomes, devastating surgical complications, preventable tragedies, and fatal diagnoses. My hope is that this knowledge will lead to greater overall understanding of their loved one’s condition and help them navigate the great challenges they face.
As an academician who trains the next generation of surgeons, I also wrote this book for medical students and trainees, particularly in surgical subspecialties. I hope that by reading this book, young physicians and future physicians will learn from my experience how to make interactions with families as positive as possible without sacrificing honesty. I hope that young physicians and surgeons will understand that they are not alone when they struggle to process the implications of bad outcomes and surgical complications. I am hopeful that medical trainees interested in clinical research will learn from my experiences as I have tried to develop new treatment options for a fatal disease. Finally, I share my thoughts on medical care in low- and middle-income countries based upon my many experiences volunteering abroad, and I explain how these experiences have shaped my worldview.
In describing what goes through my mind in the many situations I encounter, I often do so through the medium of sharing stories about patients. In some of these stories, I include patients’ real names. Of course, this is done with the permission of their parents and/or the patients themselves if age appropriate. In other stories, based upon the families’ request or my own judgment, I use a pseudonym. In all cases, whether I use real names or pseudonyms, I tell these stories honestly and without embellishment. I do so with the utmost admiration for my brave patients and their incredible parents who are struggling to make impossible decisions and process news that no parent should ever have to hear. I also do so with the most profound gratitude to these parents who place their trust in me to care for their precious children.
No medical specialty requires more intense training than neurosurgery. The profession is grueling and exhilarating in equal measure. Neurosurgeons are a small cadre of physicians entrusted to operate on the most complicated structure in the human body, yet Brain and Heart is a memoir that acknowledges the humility that comes with performing surgery on the brain. Even the best training and the most modern technology have limits in the face of the challenging diseases I treat. Trying to save the lives of children who have been injured by car accidents or gunshot wounds, brain tumors, or other devastating conditions is a highly imperfect science. In so many circumstances when treating these conditions, not all choices are clear. Sometimes the correct decision cannot be made based only upon existing medical literature, many years of experience, or discussing a case with colleagues. I have learned time and time again that my profession requires not only my brain, but my heart as well.
Excerpted from Brain and Heart: The Triumphs and Struggles of a Pediatric Neurosurgeon, by David I. Sandberg M.D. Pegasus Books, May 6, 2025