A light inside: Coming back from a brain injury

EL PASO, Texas — Jaclyn Pellicotte reclined on the couch in her family’s one-story home on Trinidad Drive. A feeding tube gradually drained nutrients into her stomach as her dog, Coal, shifted in her lap. Her legs lay still under a blanket, thin from the loss of muscle, and her hair—once long and blonde, captured in dozens of pictures scattered throughout the house—was clipped short. It is slowly coming back—brunette this time—and, despite the odds, the young woman in the photographs is, too.

The 21-year-old’s eyes shone bright as she scrolled through her Instagram feed, watching old videos and giggling to herself. She was engrossed by posts prior to October 30, 2018—the day her life changed in an instant.

It was a Tuesday, and Jaclyn remembers nothing. But every detail still haunts her mother.

Sheri Pellicotte was on her way to Chick-fil-A, the one closest to the elementary school where she was principal, when her phone lit up with an unfamiliar number. It wasn’t ideal for Sheri to be gone during a school day, but it was her husband’s 53rd birthday, and the couple and their two children had planned to meet midday to celebrate.

Sheri was going to ignore the call, but at the last second, she picked up.

“Hello?”

The voice on the other line asked if she knew someone named David. Sheri replied yes, David was her daughter’s boyfriend. “Is everything OK?” she asked.

The voice said she was a trauma nurse at University Medical Center of El Paso. She told Sheri that David had been in an accident.

“Was someone with him?” Sheri asked.

“I can’t tell you that,” the nurse said.

Sheri’s chest began to ache. If there was a blonde girl with him, she said, that’s my daughter. Then she asked again, “Is David OK?”

“He’s OK,” the nurse said slowly. “But you might want to come.”

* *

Jaclyn had been riding in her then-boyfriend’s Jeep, shopping for a birthday present for her father. They were turning left into a parking lot off Montana Avenue, a main thoroughfare into the heart of El Paso, with three lanes on each side. Two of the lanes waved them through, but a Ford F-150 barreled through the third lane and struck Jaclyn’s side of the car, crushing it.

The blunt force shifted her brain to one side and caused massive trauma to her entire body. She was transported to the hospital where a team worked to keep her alive. They named her Mayflower until someone could come and identify her.

When Sheri and her husband, Dennis, rushed into the hospital waiting room, they were told that their daughter’s outlook was grim. Surgeons removed a section of her skull, called a bone flap, to reduce massive swelling in the right side of her brain.

Five days later, Jaclyn was still unresponsive and more pressure was building in her head, so they surgically removed the left bone flap, too.

Jaclyn remained unconscious and breathing on a ventilator, alive by the grace of machines. She spent November and December in the intensive care unit, eventually graduating to the intermediate care unit—one small step in the right direction.

“We were constantly talking to her,” Dennis recalled. “Jaclyn, wake up! Jaclyn, wake up! Jaclyn, can you hear me? Jaclyn. JACLYN.”

Jaclyn was considered to be in what’s often termed a vegetative state. Clinicians did not offer much hope, but her parents remained determined. They prayed incessantly.

“You’re going to speak life into our room and you’re not going to speak death—you’re going to give her that chance,” Sheri told people.

In December, surgeons decided that Jaclyn was well enough for them to reinsert one of her bone flaps. Soon after, family members thought they noticed Jaclyn tracking them with her eyes when they moved around the hospital room.

But that stopped as quickly as it started. Pressure and fluid had returned to her brain, so the bone flap was removed yet again. It was another of what had become numerous surgeries—a tracheotomy, repair of a broken femur, insertion of a feeding tube, insertion of a shunt to drain fluid.

By late December, Sheri and Dennis began looking into rehabilitation options. Their daughter continued to be unresponsive, immobile—but they would do anything for their baby girl.

Sheri put a call out on a Facebook page she’d been updating with entries about Jaclyn’s progress, asking if anyone knew of a good neuro-rehabilitation center. A few people suggested TIRR Memorial Hermann in Houston, and in an unlikely chain of events the Pellicotte family can only attribute to answered prayers, a spot for Jaclyn became available and they flew across the state of Texas on January 8.

“They said, ‘Bring her tennis shoes, bring her sweats—we’re going to dress her,’” Sheri said. “We thought they were crazy.”

But sure enough, the morning after the Pellicottes arrived at TIRR, a therapist walked into Jaclyn’s room, sat her upright for the first time in months, and put her in something other than a hospital gown.

***

Jaclyn was enrolled in TIRR’s Disorders of Consciousness Program (DoC), which works with patients who have severely impaired levels of awareness, including those in a vegetative or minimally conscious state. Most of the patients who enter the program have suffered a traumatic brain injury, sustained lack of oxygen to the brain, or a stroke. Like Jaclyn, they aren’t ready for a traditional rehabilitation program, but need to take the initial steps toward discovering their potential.

The DoC team works to assess consciousness, cultivate communication techniques, improve alertness, initiate mobility and help patients achieve the greatest quality of life possible. The team also provides specialized training and support for families and caregivers. Programs like these, which give patients a chance they may not otherwise have, are rare. Only 10 or so exist in the U.S., said Sunil Kothari, M.D., medical director of the DoC program at TIRR.

“We really do feel that we’re the last chance for many patients,” said Kothari, who is also an assistant professor of physical medicine and rehabilitation at Baylor College of Medicine. “We’re the last place they’ll go to or they have an option to go to … and so we take that very seriously.”

Historically, “unresponsive” patients were sent to long-term care facilities or withdrawn from life-support rather than enrolled in rehabilitation, said Katherine O’Brien, Ph.D., a clinical neuropsychologist at TIRR. But in 2009, a landmark study published in BMC Neurology revealed that nearly 41 percent of patients diagnosed as vegetative during a bedside evaluation were, in fact, conscious—they just couldn’t show it.

“A doctor might walk in and ask the patient to ‘Touch my hand’ or ‘Lift your leg’ or ‘Open your mouth.’ The patient doesn’t do it, but maybe the patient is sedated from anesthesia, maybe the patient is in excruciating pain, maybe they’ve been sedated from other medications, maybe they’re not attending to it because they’re upset because they’ve been sitting in a dirty brief all day,” O’Brien said. “Or, they’re trying to respond and the leg’s just not moving.”

Some medical experts argue that patients in this state who are not given the proper opportunity for rehabilitation have been denied basic civil rights.

“While this is surely an insurance issue and an access to care issue, it’s also a civil rights and disabilities rights issue. And it’s really a violation of the Americans with Disabilities Act to not treat these people in a way that allows them to maximally integrate into society,” said Joseph J. Fins, M.D., chief of the division of medical ethics and professor of medicine at Weill Cornell Medicine and co-director of the Consortium for the Advanced Study of Brain Injury. “Rehabilitation is a medical intervention, but it’s also a social intervention that gets people back into their homes and to their families and to their communities.”

The issue has gained momentum, so much so that in 2018, the American Academy of Neurology released new guidelines to address this specific patient population. Its No. 1 recommendation: patients with disorders of consciousness be referred to specialized, trans-disciplinary, acute rehabilitation centers, like TIRR, before entering long-term care.

“It was clear from the extensive evidence reviewed that many patients with prolonged disorders of consciousness demonstrate meaningful recovery of function that continues over a period of years, and approximately 20 percent eventually regain functional independence,” said Joseph T. Giacino, Ph.D., lead author of the new guidelines addressing disorders of consciousness, who is also associate professor of physical medicine and rehabilitation at Harvard Medical School and director of rehabilitation neuropsychology at Spaulding Rehabilitation Hospital in Boston. “The window for recovery appears to be substantially longer than previously believed, justifying referral to inpatient rehabilitation centers for aggressive multidisciplinary treatment unless contraindicated.”

Jaclyn was lucky to have had a window at all. On the day of the accident in El Paso, her brain showed no sign of activity. But the surgeon who was called in to remove her bone flap noticed a small spark after a second brain scan—a hint of life. With discussions about life support looming, he decided to operate and give her a chance.

****

When Jaclyn arrived at TIRR, her family witnessed the facility’s unique approach to therapy.

“To date, there is no mechanism using technology that can, with a high sensitivity and specificity, tell us that someone is conscious or not conscious,” O’Brien said. “The No. 1 way right now is behavior.”

Although TIRR does use advanced technology to support its efforts—including magnetic resonance imaging (MRI), right median nerve stimulation, trans-cranial direct current stimulation, and surface electromyography—the team relies on the industry’s “gold-standard” technique for detecting consciousness, known as the Coma Recovery Scale-Revised. This assessment monitors auditory, visual, motor and verbal function. Team members administer the test twice a week to every DoC patient, and they aim for a comprehensive approach. For example, an occupational therapist and neuropsychologist might administer the test at the beginning of the week, and then a few days later, a speech therapist and physical therapist will repeat the exercise, O’Brien explained.

“Each duo is combined with someone who is more physically based and someone who is more cognitively based, and you have four sets of eyes looking at the patient in a standardized fashion each week to assess them,” O’Brien said, adding that the assessment is only part of the ongoing daily therapy and rehabilitation regimen.

It’s an approach that’s proven successful. Kothari estimates that almost 90 percent of the patients they see who have been labeled vegetative are misdiagnosed.

Jaclyn was one of them.

Within the first few days, Jaclyn’s TIRR team confirmed that although she was seemingly unresponsive, she was, in fact, tracking with her eyes— and very much aware. They helped her into a chair and she moved her leg on her own ever so slightly. Soon, she could swipe the screen on her cell phone with her knuckle; then, she paid attention to a movie, moved her head and swallowed ice chips.

Her therapists learned everything they could about Jaclyn so that they could tailor their treatment to her interests. She had been pre-med at The University of Texas at El Paso, with hopes of becoming a pediatrician. She had loved her long hair, makeup, modeling and Snapchat. She was known as the most thoughtful, loyal and funny friend—a literal ray of sunshine in her tiny corner of the Chihuahuan Desert.

“There’s an object recognition test where you hold two objects up at once and ask the patient to identify one specific object to see if she can distinguish the two,” O’Brien explained. “It tells me that not only does she understand me, but she can see. For Jaclyn, we used her favorite ChapStick and a brush, because that was meaningful to her—it wasn’t just a random ball and a cup.”

Because she had been bedridden for so long, Jaclyn’s feet were pointed and stiff, so her therapists built her walking casts in the shape of wedges just so she could stand.

Over the next few months, Jaclyn grew stronger, more limber, more alert. She pushed bike pedals, ate applesauce, yogurt and pudding, hummed in an effort to speak. She smiled, but cried when she was frustrated. With the help of therapists, she stood up on two flat feet.

Not all progress was linear.

On March 4, surgeons in Houston attached both bone flaps back to her skull, but in April, her brain began to swell again and she later developed an infection near the incision from the surgery. Occasionally, she suffered small seizures.

But her young body pushed on. She kept humming. She smiled. She moved her legs, tried more food, lifted her head and began to use her thumb to scroll Instagram. She learned to wave hello and goodbye while moving her fingers, then she mastered the thumbs-up and the “OK” sign. She learned to say “I love you” by pointing to her eye, her heart and her parents, who remained by her side every step of the way.

O’Brien and Kothari said a large part of Jaclyn’s recovery should be attributed to her parents’ dedication and their involvement in her therapy. Both extended their leave from work so that they could live with her during her months in Houston. Her older brother, Jacob, came as often as he could, too.

“We believe strongly that the family’s observations are as relevant and valuable as the ones we make,” Kothari said, “partly because they spend more time with the patients, but also because they’re more likely to see or illicit behavior that might indicate consciousness.”

*****

On May 9, the Pellicotte family returned to their home in El Paso. Jaclyn moved back into her childhood bedroom, decorated with images of the Eiffel Tower.

“As soon as she gets better, we’re going to Paris,” Dennis said. “You can’t put things off.”

Jaclyn began therapy three times a week at a local NeuroRestorative, part of a nation-wide network of rehabilitation centers. She continued to make strides in her recovery, standing in a walking frame, playing tic-tac-toe with her therapist and giggling for the first time since October. She was told if she could unscrew the lid of one of her lip glosses, her father would serve as a model. Sheri said Dennis looked great in glitter lip balm.

In June, a local speech therapist reached out to Sheri and offered to visit Jaclyn once a week to help her eat, swallow, regain feeling in her tongue, and eventually, speak. She insisted on doing it for free, saying she felt called to help after reading about Jaclyn’s journey on social media. A few weeks later, in early July, Jaclyn started talking. Sheri called it “whisper-talking,” because it was very soft. But she said “I love you,” and not long after, began speaking in sentences. Her father realized that she grew louder lying down because of the pressure on her diaphragm. A tight hug, he discovered, could do the trick, too.

Little by little, Jaclyn continues to amaze her family. She is standing with more ease, walking in therapy and talking more loudly. She can hug, play catch from her wheelchair, and loves watching her old videos and spending time with her brother and his girlfriend, Jackie, who happens to be Jaclyn’s best friend.

Still, some days are harder than others. On a Tuesday in August, Jaclyn’s family went to lunch at a Great American Steak Burger near their home. Jaclyn ordered chicken tortilla soup, and Sheri broke off small pieces of bread for her to try. Sheri and Dennis cheered Jaclyn on—it was a breakthrough, chewing the soft bread and swallowing it—until their daughter’s face crumpled in anguish. Little by little, the pieces of bread fell out of her mouth. She had wanted to swallow them so badly, to make her parents proud of how far she had come, but she just couldn’t—not yet. So, there in the restaurant, surrounded by dozens of people on their lunch breaks, Jaclyn’s laugh turned to tears, and she allowed herself the indulgence of a good cry.

But her parents believe that someday, she’ll be back to herself, to 100 percent. Back to college, back to her friends, back to Starbucks and Body Pump class with her mother. After all, her parents said, she is the same girl who, at nine months old, climbed out of her crib and walked— for the first time—into the kitchen to find them cooking. Now, she is learning how to live all over again.

Not all patients who suffer a traumatic brain injury will recover, even if they have the opportunity to go to a rehabilitation program like TIRR’s. For these individuals, the focus turns to quality of life.

“We try to think about, in very concrete terms, for someone who may be minimally conscious, or fully conscious but essentially locked into their body—what would give them quality of life? And it may be as simple as making sure that they get out and feel the sun on their face, or the wind,” Kothari said. “Our job isn’t over just in terms of assessing whether they’re conscious or not and then doing everything we can to maximize their level of consciousness, but it’s embedding that into the larger framework of personhood and quality of life.”

For patients who remain minimally conscious, TIRR’s program can offer their families as much information about their loved one’s future potential as possible.

These families are in “a very traumatic situation, something no one really plans for, and I feel that by providing them the appropriate assessments and interventions, we can allow them to move forward with making really hard decisions,” O’Brien said.

Not all stories have a happy ending, she added, but every patient has a right to a chance.

* * * * * *

On August 3, 2019, Jaclyn Pellicotte turned 21. Her family had planned a party to celebrate not just her birthday, but how far she’d come over the past 10 months. They expected more than 100 people to attend, but then that morning, as Sheri was out running errands and picking up the cake, a man with a semi-automatic rifle entered the Wal-Mart a few miles from their home and opened fire, killing 22 people and wounding dozens more.

Sheri, on a day of celebration for her daughter’s life, knew the pain each of the families with slain or injured loved ones felt. She knew they were starting a new journey in their lives, an agonizing journey that requires strength, positivity, love.

“We know that Jaclyn is a miracle, there are no other words for it,” Sheri said. “When we were at TIRR, we saw all the pictures in the hallway of the people who had been there. I would touch a spot on the wall and tell Jaclyn, ‘This is your wall. You’re going to be one of those miracle stories just like all of these other people.’”

One day, Sheri and Dennis plan to return to TIRR. They want to donate all of Jaclyn’s rehabilitation equipment to other patients—she’ll no longer need it, they explained— and of course, they want to say thank you to everyone who helped them come so far.

The Pellicotte’s don’t know it yet, but TIRR has already picked out a spot for Jaclyn’s portrait.