In 2009, Jennipher Dickens was volunteering as communications director for the Sarah Jane Brain Project, a New York City-based foundation for children who’ve suffered a brain injury. “It had been a typical morning,” says Dickens, a slim brunette, now 29. As always, she hadn’t slept well the night before and she’d had a hard time waking up and pulling things together to get her son to school. “So I was happy to sit down at my desk,” she says. “Writing always calmed me and helped me get myself organized.”
Dickens’s job that morning was to write a press release on Pediatric Acquired Brain Injuries (PABIs). She had reported on the symptoms many times: problems with memory, organization, and concentration; fatigue and sleep issues; mood swings, depression, and anxiety; and difficulty “reading people.” On that morning, she was writing about triggers: PABI is caused by traumatic events such as motor vehicle accidents and sports-related accidents … as well as falls, Dickens wrote in her press release.
She stopped cold. “I suddenly remembered a fall from my childhood,” she recounts today. “And then I began to wonder, Could that be the reason I’ve had so many problems — why I could never concentrate or organize myself?”
She couldn’t be sure. At that moment, all she knew was that she had to find out.
During the summer of 1993, when she was between third and fourth grades, Dickens was sitting in a movie theater watching Chitty Chitty Bang Bang when she realized her arm was in a cast — but she had no memory of breaking any bones. Two days earlier, while on a trip with her Windsor, North Carolina, church, Dickens had fallen out of a tree and fractured her hand, she learned from a parent on the trip. “I didn’t remember going to the hospital — or even being in the tree,” says Dickens.
Church counselors had called Dickens’s mother right away. “They were very good about that,” she says. But they never mentioned that she had also hit her head and lost consciousness for about 30 seconds. “Since I came to so fast, they were simply relieved that I hadn’t hurt my head.”
But her brain was injured. “I’d always been an A student,” she says in a soft but deliberate voice. “I remember I cried when I got a 92 once on a test — it seemed like such a poor mark.” Dickens wanted to be a doctor because her grandmother, with whom she was very close, had had a heart attack: “I wanted to be able to fix her if she got sick again.” But in fourth grade, she was no longer consistently a top student, and then in fifth grade, her grades dropped to C’s.
The counselors never mentioned that she hit her head and lost consciousness for 30 seconds.
The changes in her behavior and schoolwork came on so gradually, it never occurred to Dickens or her family that she was injured or ill. Her mother thought it was just preadolescence. Dickens herself assumed everyone else was having the same difficulties, but handled them better.
Her problems didn’t ease. After struggling through high school, Dickens tried college and failed — twice. “Anything that required memory did me in,” she says. “I also had a hard time socially, because I’m not good at things that are important at that time of life, like humor or pop culture references.”
Nonetheless, Dickens was a good writer, and in college she won an essay-writing contest that helped land her a job as a reporter with a local newspaper.
“In 2004, even my personal life seemed to be going right,” Dickens says, with an ironic chuckle. She began dating a corrections officer named DJ. “I thought he was the perfect gentleman, and so did my mother and grandmother. I remember how at my bridal shower he held an umbrella over each elderly woman as she came into the house so she wouldn’t get wet in the rain,” she says.
The two married. Then, in 2006, their son, Christopher, was born — five weeks early. “We arranged our work schedules so we would never have to put the baby in day care,” Dickens recalls.
A Mother’s Nightmare
When the baby was 6 weeks old, she noticed tiny yellow bruises on his face. Also, he became very fussy and developed a high-pitched cry. The doctor checked for a blood disorder, but the results were normal. Then, a week later, Christopher started twitching. By the time Dickens got him to the doctor the next morning, he was having a full-blown seizure. Tests at the hospital revealed bilateral subdural hematomas (bleeding on both sides of the brain) as well as six broken ribs — signs that the baby had been shaken. “This child has been abused,” the doctors said.
As it turned out, on at least five occasions while Dickens was at work, DJ had violently shaken Christopher: “He wound up going to prison for felony child abuse. I wound up getting a crash course in traumatic brain injury.”
Traumatic brain injuries (TBIs) can be devastating, causing bleeding and damage to delicate brain tissue. A penetrating wound — from, say, a gunshot — can hurt a specific area. But even a seemingly minor blow to the head from a fall or a kick in a soccer game can cause a concussion (also considered a TBI) and may change the way the brain functions.
At first, the baby’s condition was so grave, doctors didn’t expect him to survive. Then they just didn’t expect him to function. But after he’d spent two weeks in the hospital, they released the infant with a prognosis Dickens felt could be summed up in two words: “Good luck.”
“This child has been abused” the doctors said.
She spent the next two years scrambling to figure out the best way to care for Christopher. He was making progress, but it was slow; he was only babbling and lurching around by his second birthday. “I begged to get therapists to come out to our very rural area. I was always on the Internet to learn what I could do myself with him. I went to every conference I could afford,” she says.
At one conference, she met the New York City attorney who’d started the Sarah Jane Brain Project after his infant daughter had been violently shaken by a baby nurse in 2005. He invited Dickens and a friend whose child had also suffered a brain injury to a fundraiser for the foundation in New York City. While she was there, Dickens saw the therapy the attorney’s daughter was receiving. “The amount of care, the quality of the care….” Dickens says.
She had to get Christopher to New York City. Shortly afterward, she was laid off from her job at the newspaper (along with 40% of the company), and the two left North Carolina and moved in with a friend in New York. Within two weeks of enrolling at a school where he got occupational, speech, and physical therapy every day, Christopher was saying his ABC’s. Two months later, he was running and jumping.
For Dickens, however, the move was rougher. She’d hoped to find a job in New York City. But it was the beginning of the recession, and a lot of reporters were looking for work. “I didn’t have a college degree or big-city experience. My job hunt didn’t go so well. That’s the reason I was working at the Sarah Jane Project.”
An Increasing, Invisible Problem
Today, brain injuries seem to be all over the news. Between 10% and 20% of veterans returning from Iraq and Afghanistan have suffered a TBI. The NFL is paying $765 million to settle a lawsuit with more than 4,500 retired players who have brain damage, and the National Hockey League faces a similar suit. And parents of young athletes are growing concerned about the risk of concussions: Pop Warner, a children’s football program, saw participation drop nearly 10% between 2010 and 2012.
Despite the headlines, these injuries remain grossly under-treated. In cases as severe as baby Christopher’s, the long-term impairments can be so complex, so tangled, so subtle, and so deceptively like something else (ADHD, depression, anxiety, epilepsy) that coordinated treatment can be very hard to secure.
And that’s when an injury is obvious. More often, TBIs are invisible. When children are hit in the head during a hockey game or fall off a bike or snowboard, coaches or parents might do a quick check (“Does your head feel OK?”) and, when kids say they’re fine, be mistakenly relieved that there’s no head injury.
In 2009, the question for Dickens was whether anything could help her so many years later. She called Wayne Gordon, Ph.D., professor of rehabilitation medicine at the Icahn School of Medicine at Mount Sinai, a leading TBI researcher she’d gotten to know through her work. One of his many contributions to the field: pointing out the gross underreporting of the problem. The number of brain injuries each year, 1.7 million, includes only those tallied by hospitals; it doesn’t take into account TBIs that result in doctor’s visits or the myriad instances when a kid hasn’t told anyone that a blow to his head left him dazed. Gordon estimates the true annual TBI prevalence to be about 13 times greater than the official number — about 21.5 million.
When Dickens described her childhood fall, Gordon immediately scheduled her for an evaluation. Since TBIs usually can’t be seen via medical imaging, the only way to make the diagnosis is to assess a person’s cognitive function. So therapists spend hours testing everything from a patient’s reasoning ability to her recall of random numbers.
It took several weeks for Dickens to get her results. “As bad as my memory is, I remember every detail of Dr. Gordon telling me I had TBI,” she says. “The way I waited with my hands folded in my lap. The six-page report. The weird feeling of Yay! I’m brain-damaged! The waves of sadness for all the years I’d thought I was just a lazy, disorganized, bad person.”
At Dr. Gordon’s suggestion, Dickens enrolled in a clinical trial in which she received 12 weeks of classes in what she describes as “how to live with a brain injury.” The strategies don’t make her “normal,” she says. “But they make my life 1,000% more manageable, because I know what I need to compensate for.”
Among the things she learned is that it is hard for her to take in information just by listening. So now, when she watches TV, she switches on the subtitles. To assist her memory, she uses a reminder app on her phone and alarms for appointments.
Dickens was never able to find a job in New York and by late 2010 was running out of money. “I was scared to leave, because Christopher was doing so well and I’d gotten help there, too.” But she couldn’t afford to stay, so they returned to North Carolina.
It turned out that both were ready for the change. Today Christopher is 7 years old and in first grade at a local public school. He suffers from seizures, ADHD, insomnia, and some symptoms that mimic aspects of autism. He is also a talented figurative artist and loves music. “He’s in a Bob Marley phase,” says Dickens.
For her part, Dickens is enrolled in college for the third time. This go-round, she only takes classes in which the professors lecture with a PowerPoint display on a big screen. “Finally, I’m getting through just fine,” she says. She has finished the course work to be a certified nurse’s assistant and is thinking about becoming a nurse, “or maybe I can combine my writing skills with my interest in TBI.”
Today, Dickens is focused most on her son. But she’s also concerned about her relationships with other people. One symptom of TBI is impaired judgment, she says: “I married a man I thought was great. And he badly abused our baby.” She worries that she missed some critical signal — and that it could happen again.
Last year, she started dating a nurse she’s known for years. “I think I really got it right this time,” she says. “But I’m making sure. There are so many reasons I can’t be careful enough.”