Martineau had gotten a CT scan of Janel’s brain and sent the file to me. I tapped the arrows on my computer keyboard to scroll through the gray images of the brain set against a black background. I’d looked at thousands of CT scans during the eighty-hour weeks of my recently completed residency. But this CT scan was unlike anything I’d ever seen. The ventricles—hollow cavities deep within the brain—were filled with a mass of abnormal tissue. It was enormous, about the size of a tennis ball. It was complex, its contour bulging out wildly in all directions, compressing and distorting the surrounding brain structures. It was described in the radiologist’s report as “lobulated,” “exophytic,” and “cystic”: multilobed, outwardly growing, and containing a fluid-filled component.
It was the largest brain tumor I’d ever seen.
I read Martineau’s email again. It said Janel was a student, age twenty-three. I presumed that meant he was in college, so his cognition must not have been affected yet by the tumor. I watched the video again. Janel was sitting on the examination table, which he would have presumably had to climb onto, suggesting he had good strength and coordination. How could he have been so mildly affected with just a tremor, a little trouble walking, and brisk reflexes? I went back to the CT scan, amazed at the size and extent of the mass. If he had only minimal symptoms, maybe it was a very slow-growing tumor and his brain had somehow compensated for its intrusive but initially indolent presence. Since he was only twenty-three years old, maybe it had been there since childhood, but without a CT scanner available until recently, it had been impossible to figure out why he developed progressive neurologic symptoms.
Martineau’s email concluded:
What can we do for this patient?
I wasn’t sure how to respond to him. Without surgery to remove the tumor, his patient would become progressively disabled and die. But there are no neurosurgeons in Haiti trained to perform complex brain tumor surgery. Even if there were, not even the brand-new modern operating rooms at HUM have the necessary high-tech equipment to safely perform such a surgery. And no place in Haiti has the resources necessary to provide specialized postoperative care for a patient after the deepest recesses of the brain are manipulated.
Had Janel been born just a two-hour plane ride away in the US—still far shorter than the drive from his home to Port-au-Prince—he would have never ended up with a tumor so advanced as to require such a complex intervention. He would have had a scan, a diagnosis, and surgery years ago when he first developed symptoms and the tumor was much smaller and could have been more easily treated.
Working in Haiti for two years, I had seen awful things. Patients with untreated epilepsy who were covered in bruises and burns from seizures that shook them to the ground or into a cooking fire. Patients with severe meningitis (an infection of the brain’s linings) who arrived too late for treatment and died of a disease easily treated in most other countries—and in many cases preventable by vaccine.
For patients with epilepsy, we could get their seizures under control with medications available in Haiti. Though the delays before appropriate treatment were often beyond anything I’d seen in the US, we could help many epileptic patients return to normal lives. For patients presenting late in the course of an illness like meningitis, there wasn’t much we could do: the setting and its limited access to healthcare left us powerless to effectively intervene by the time the patients made it to us.
My colleagues in other medical specialties talked about patients they saw in Haiti with conditions that could have been instantly and easily treated by surgery in the US but proved devastatingly disabling or even fatal without adequate resources in Haiti. Yet as a neurologist in Haiti, I didn’t think I had ever found myself in a situation in which I said, “If only I could get this patient to the US right now, I could make a big save.”
Sadly, even in my practice in the US, big saves in neurology are generally few and far between. We can treat the pain of migraines, the seizures of epilepsy, the shaking and stiffness of Parkinson’s. We can reduce the debilitating flares of multiple sclerosis and rehabilitate a patient after a stroke or head trauma. We can improve our patients’ quality of life, but rarely do we cure them of their underlying disease. Even when we make an impact, it’s usually not by means of high-adrenaline big saves like the ones made by our colleagues in trauma surgery or heart transplant surgery or emergency medicine. Sometimes, with diseases like ALS or Alzheimer’s, we’re powerless to do more than try to ease the suffering of our patients and their families as they face the disease’s inevitable, tragic progression. When I was a medical student and told one of my surgery professors that I was interested in neurology, he scoffed, “Diagnose and adios—that’s no fun.” It’s an exaggeration, of course, but diagnostics in neurology have always run ahead of treatments.
Looking back and forth between Martineau’s email, Janel’s CT scan, and the video of this otherwise healthy young patient, I saw the potential for a big save for the first time, not just in my work in Haiti but in the early days of my career as a doctor. Without treatment, progressive disability, suffering, and untimely death awaited this young man. But if I could somehow get him to the US for surgery to have the tumor removed, maybe he could be spared the loss of his walking, his thinking, and ultimately himself.
If anyone could help find a solution, it was my colleague and friend Dr. Michelle Morse. A brilliant young internal medicine doctor at Brigham with a tireless commitment to global health equity, Michelle cofounded a nonprofit organization called EqualHealth before she had even finished her residency. She rapidly rose through the ranks of PIH to become the deputy chief medical officer for their twelve-hospital network in Haiti and was part of the team that got HUM up and running. When I had reached out early in my residency to everyone I had met who was involved in global health to ask how a neurologist might help, Michelle was the first to reply, insisting that Haiti needed me most. Within a month, she had set me up on my first trip. When I saw her in Haiti I actually thought she was Haitian—she spoke Haitian Creole fluently, right down to slang expressions, proverbs, and even the facial expressions that accompanied them.
Michelle somehow manages to balance a radical critique of the inequities in healthcare with optimism that change is possible. Rather than try to change people’s minds through argument, she leads by example. When a colleague in Boston asked her to speak to a group of doctors and trainees on bias and diversity, she lamented to me, “Of course ask one of the only African American doctors on the faculty to talk about diversity!” But to her colleague, she said, “Sure, but it won’t be a PowerPoint, and it won’t be just one session.” Instead of giving a lecture, she brought patients to tell their own stories of discrimination they faced in the healthcare system in an eye-opening, purposefully uncomfortable, but ultimately redemptive session.
I called Michelle and was surprised when she picked up the phone. She was always coming and going between the PIH sites—Haiti, Liberia, Rwanda, Malawi. I was used to getting her voicemail, which simply said, “If you have received this message, I am probably out of the country, but you can reach me by email.” I told her I had heard from Martineau about an otherwise healthy young man in Haiti with an operable brain tumor causing relatively minimal deficits. Did she think we could get this patient to the US for care? If so, how?