The curious hole in the head that made me the subject of research throughout my life

I leapt into the world—a precipitous delivery, the doctors said—in a New York hospital in the dead of night.

In my first few hours of life, after six bouts of interrupted breathing, doctors rushed me to the neonatal intensive care unit. An intern doctor stuck his little finger in my mouth to test the newborn’s sucking reflex. I didn’t suck hard enough. Then they ran my 3.45kg pink body through a brain scanner.

And, amazingly, there was a huge hole in the left side of my brain, just above my ear. I lacked the left temporal lobe, a region involved in a wide variety of behaviors, from memory to emotion recognition, and considered especially crucial for language.

My mother, exhausted from labor, remembers waking up after sunrise with a neurologist, a pediatrician and a midwife at the foot of her bed. They explained that my brain had bled in the womb, a condition called perinatal stroke.

She was told I would never speak and would need to be hospitalized. The neurologist raised her arms to her chest and contorted her wrists to illustrate the physical disability I was likely to develop.

In those early days of my life, my parents wrung their hands imagining what my life, and theirs, would be like. Eager to find answers, they signed me up for a New York University research project tracking the developmental effects of perinatal strokes.

However, month after month I surprised the experts by going through all the typical steps for kids my age. I enrolled in regular schools, excelled in sports and academic subjects. The language skills doctors were most concerned about at my birth—speaking, reading, and writing—turned out to be my professional passions.

My case is highly unusual, but not unique. Scientists estimate that thousands of people are, like me, living normal lives despite having lost large parts of their brains. Our myriad networks of neurons have managed to reconnect over time. But how?

‘The worst participant’

My childhood memories are filled with researchers following me around with pens and clipboards. My brain was scanned several times a year, and I was subjected to various puzzles, word searches, and image recognition tests. At the end of each testing day, the researchers gave me a patch, which I kept in a tin by my bed.

When I was about 9 years old, researchers wanted to see how my brain would act when I was exhausted. Sometimes I would stay up all night with my mother, eating Chinese food and watching Katharine Hepburn and Spencer Tracy movies. The next day, I stumbled across the clinic half-awake and the scientists placed electrodes on my scalp. When long cables dropped from my head like Medusa’s snakes, I could finally fall asleep, blissfully unaware that the researchers were looking for anomalies in my brain waves.

Over the years, scientists realized that I was not like the other children in the study: I ​​had no disabilities to track over time. When I was about 15 years old, my father and I met in the cluttered Manhattan office of Ruth Nass, the pediatric neurologist who was leading the research. She questioned whether I really had a perinatal stroke. In any case, she frankly said that my brain was so different from others that I could no longer participate in the study.

I did not care. I had other things going on in my life, like starting high school, cross-country training, and dating. But I had also learned enough about neuroscience to be absorbed in the subject. When I was 17 and starting my senior year of high school, I wrote to Dr. Nass and asked if I could do an internship in her lab. She readily agreed.

One day in the lab, I asked if she could show me my study files. We entered a room piled high with plastic boxes, all filled with loose folders and papers. She picked up a folder and read it silently. Then, looking up from a piece of paper, she said, “You were the worst participant because you were perfectly fine! You threw away all my data.”

Nass, who died in 2019, and his colleagues have published many studies on perinatal strokes. In a 2012 paper, for example, they found that babies who experience these strokes have a higher risk of attention and behavioral problems compared to the general pediatric population. Many of these children — recruited from 1983 to 2006 in Southern California and New York City — suffered from seizures and muscle weakness on one side of their body. Most also had damaged or missing areas, known as lesions, on their left hemispheres, like I did. I assume one of those data points was mine.

I went to college and majored in neuroscience. After graduating in 2015, I spent two years working in a lab studying concussions. I spent hours in the MRI room, watching other people’s brains appear before me on the computer screen.

But I never thought much about my own brain until this spring, when I came across a story in Wired magazine about a woman like me: surprisingly normal, except for the lack of a temporal lobe.

eight interesting brains

The Wired article described an anonymous Connecticut woman who had no idea she lacked a left temporal lobe until she underwent an unrelated brain scan as an adult. In recent years, the article explained, she had participated in a research project led by Evelina Fedorenko, a cognitive neuroscientist at the Massachusetts Institute of Technology.

In April, I wrote an email to Fedorenko telling her about my missing left temporal lobe and offering to be a part of her research. She responded four and a half hours later, and soon I was booking a plane ticket from my home in rural Colorado to Boston.

We are currently eight participants in Fedorenko’s Interesting Brain Project, she told me. I didn’t know them, but four of us presumably suffered perinatal strokes, resulting in damage to the left hemisphere. Two participants have benign cysts in their right or left hemispheres, one had a stroke in the right hemisphere, and one had brain tissue removed from the left hemisphere because of a tumor.

“The brain has incredible neuroplasticity,” said Hope Kean, a graduate student in Fedorenko’s lab who is conducting the Interesting Brain study as part of her dissertation.

It seems that brain networks organize themselves in a particular way, but if you lose crucial brain regions as a baby — when the brain is still very plastic — those networks can be repurposed, Kean said.

I arrived at Fedorenko’s Cambridge laboratory on a hot July day. I lay down on a bed that slid into the narrow tube of the MRI machine, with a cage-like device placed over my head. Kean put a mirror on the helmet so I could see a screen on the back of the scanner. As the machine began to make its rumbling sounds, I remembered all the times I’d dozed off inside as a kid, lulled to sleep by those thundering chords.

On the screen, words flashed rapidly and a voice read them aloud, forming random phrases like, “Only a simple suggestion of heels is found in teen sandals.” Then the words would change into a random sequence of letters, creating incomprehensible sounds.

After the scan was complete, the researchers and I gathered around a computer screen, where I saw a slice of my brain for the first time. I stared in disbelief, surprised that my neural connections could have been redirected around that big oblong hole where my temporal lobe should have been, in the space behind my left temple and eye socket.

In the average person’s brain, the phrases I heard and read on the scanner would robustly activate the left temporal and frontal lobes, while nonsensical sounds would not.

The researchers’ studies found that the Connecticut patient’s brain had adapted by switching sides: for him, those phrases activated the right temporal and frontal lobes, according to a case study published in the journal Neuropsychologia.

My brain, however, surprised everyone once again.

A preliminary analysis of the scans showed that, even without a left temporal lobe, I still process sentences using my left hemisphere.

“I thought that any major early injury to the left hemisphere would lead to migration of the language system to the right hemisphere!” Fedorenko said. “But the science is really amazing. Surprises usually mean cool discoveries.”

One possible reason behind this finding, according to Fedorenko, is that my injury is primarily in the front part of my left hemisphere, leaving enough healthy tissue in the back for the language system to take root.

In the next few years, I will return to the lab for further tests, and Fedorenko hopes to recruit more people with unusual brains to participate in this study.

I still think about the study I participated in as a child and all the other children whose perinatal strokes left many of them severely disabled. For some mysterious reason, my brain evolved around the lost wolf, while theirs had a hard time doing so. Why wasn’t I born with developmental and cognitive problems, and they were? Why was my left side rewired to give me the syllables, words, and phrases that have so enriched my life?

It is these questions that make me grateful to be involved in this study—and to participate in research once again.