Doctors realize ‘the brain is not hardwired’
ple who take all of their meals by feeding tube. Ngo refilled the spoon; Nick grimaced.
“That face,” Danielle said, and laughed. She came behind him and rubbed his back as Ngo pressed the spoon to his pursed lips. He turned his head again, retreating from it.
“Don’t run away from me,” she said. “Come on. Think frappé.”
A year earlier, at that hour, that’s probably what he would have been sipping. Every morning on the way to work, Nick, a sheriff ’s deputy, used to pull into the drive-through at McDonald’s and order a large caramel frappuccino, blended twice, with whipped cream.
“Don’t forget, that’s what we’re working toward,” Danielle reminded him as Ngo dumped another spoonful of carbonated water into his mouth.
Nick held it. For five seconds. Ten.
“The longer you wait, the more chance that it has to go into your airway,” Ngo said. “Pull it down, I don’t want you to choke.”
A second later, a loud gulp. And another groan.
“Good job,” Danielle said, patting him on his back. One swallow at a time, she told him. That’s how he was going to get better.
That morning, he had only eight more to go.
A year ago, each time Nick sipped a frappuccino, nerves in his mouth had sent information about the drink — its taste, temperature, thickness, volume — to his brain’s sensory cortex, which in turn fired messages back along specific neural pathways, simultaneously triggering his windpipe to close, his tongue to push the liquid to the back of his mouth and the muscles in his esophagus to contract, forcing it down his throat.
Almost no deliberate thought required.
Now, swallowing required excruciating effort. Nick’s mouth might have been sending taste and temperature signals to his brain, but the return message — the electrical currents that trigger the tightly choreographed ballet — was being sent back along damaged and broken nerve fibers. Nick might manage to push water to the back of his mouth, then struggle to squeeze it down. And if the signal from his brain to close his windpipe failed to reach his throat, he’d find himself hacking water out of his lungs, putting him at risk of pneumonia.
That’s just swallowing. Billions of different nerve fibers — about 100,000 miles’ worth — carry messages from the brain to direct legs to stand, hands to move, eyes to blink. A couple of decades ago, most neuroscientists believed those brain connections, once broken, could not be restored.
“We now know that’s not the case,” said Phil Horner, a leading scientist in the emerging field of neuroplasticity — the study of how the brain wires and rewires itself.
At his lab, two blocks from TIRR at Houston Methodist’s Center for Neuroregeneration, Horner and his team spend a lot of time thinking about what’s happening inside developing brains and how that might unlock treatments for those damaged by trauma or disease. When a baby’s learning a skill — say, swallowing off a spoon — the child’s brain is forging neural connections with each sip. Connections that, over time, grow stronger.
“We’ve come to realize that the brain is not hardwired,” Horner said. “Even an aged brain can forge new connections. The question is, How do you harness that?”
One proven method is on display daily at TIRR. Every time a patient is lifted out of bed and stood upright, Horner said, the brain’s motor cortex is activated. The return message telling leg muscles to move might get scrambled or delayed, but over time, the activity could spur the brain to rewire itself — forming new neural pathways through healthy brain tissue. Like a toddler learning to walk.
That’s one reason patients who have been labeled vegetative and denied rehab rarely get better, Horner said. If the body doesn’t move, the brain doesn’t have a chance to remake itself. “Lying in bed all the time is the worst thing for a patient in that condition,” he said.
Scientists in his lab are studying other ways to stimulate brain healing, particularly in patients who have suffered a stroke. Some techniques sound like science fiction: gene therapies that would trigger broken nerve fibers to regenerate. Wearable devices that would transport brain signals to specific areas of the body, bypassing damaged neurons. Brain cells modified with a lightsensing ion found in seaweed, which could be activated with surgically implanted fiber-optic lights — a way of tricking new neural connections to form.
“There’s a whole world of promising new research,” Horner said. “We’re no longer dealing in the theoretical.”
Earlier this year, French researchers announced that a man who had spent 15 years in a vegetative state began showing signs of awareness — the ability to follow an object with his eyes and turn his head when asked — just a few days after scientists electrically stimulated key areas of his brain.
In 2016, UCLA researchers used an ultrasound device to kick-start brain activity in a 25-year-old who had been in a coma. One day after doctors focused ultrasonic waves on the man’s thalamus — two walnutsize bulbs in the center of the brain that play a central role in consciousness — the patient started to blink on command. Three days later, he was gesturing to answer questions.
Although those discoveries show promise, researchers caution against drawing broad conclusions based on one or two cases. It might be years, or even decades, before electrical stimulation is considered a safe and effective treatment for severe brain injuries.
For now, physical rehab — the daily work at TIRR — is the only proven method to help stir consciousness.
But it doesn’t work the same for everyone.
In the evenings last spring, after the therapists had gone home for the day, Danielle liked to cuddle next to Nick in their hospital room and watch movies. Like old times, almost. Then she would kiss him and tell him good night.
“I’ll be in that bed right over there if you need me.”
Back in February, he had needed her. Several nights in a row, he had woken up frantic and moaning. Each time, Danielle had gone to him and stroked his head. “You’re safe. It’s OK. I’m here.”
Usually, he would fall back to sleep after a few minutes, but Danielle was worried. She told the neuropsychologist, Katherine O’Brien, that she thought Nick was having nightmares. Until then, Danielle and Nick’s parents had requested that nobody talk with him about the shooting in Baton Rouge. They worried it would be traumatizing.
O’Brien, an assistant professor of rehabilitation at Baylor College of Medicine, suggested Nick’s family finally ask him what he remembered. “He might be ready,” she said. They agreed. O’Brien first asked a series of simple questions, to make sure Nick was answering consistently that morning. He leaned his head forward for “yes” when she asked if he had two sons. To the right for “no” when she asked if two plus two equals five. He knew his last name. The month. That he was in a hospital, not a church.
She moved on to the serious stuff.
“Nick, do you know why you’re at a hospital?” Head forward, yes. “Nick, did you have a stroke?” Head right, no. “Were you in a car accident? Did you have a heart attack?” No and no. “Were you shot?” Yes. He knew. Of course he did. Danielle and Nick’s mother, Mary, wanted to know what else he remembered.
This time, Danielle did the asking: No, he was not sad or depressed. Yes, he was angry. No, he did not see the shooter coming. No, he hadn’t been sitting in his car when he was shot, a false detail that had been reported in the news. Yes, another police officer had taken him to an ambulance. Yes, he remembered the ride to the hospital. Yes, he went to heaven and met God when his heart stopped. Yes, he felt like he was getting better every day.
“Nick,” Danielle said, asking a final question, “do you believe you are going to walk and talk again?”
There was little hesitation, as he dipped his head forward.
She believed it, too.
Hope is what drives every family that comes to TIRR, but progress can be fragile.
Kristina Guilbeau remembers telling doctors her goals for her sister, Mandy, after she arrived at the rehab hospital three years ago: Like Nick’s family, she hoped that her sister would learn to walk and talk again. That she would be able to sing along to her favorite Taylor Swift songs. Eventually, she believed Mandy would leave the hospital and go to work as a Realtor, just like she had planned.
“Looking back,” Kristina said, “I know that I was naive.”
Mandy, now 32, had likely fallen asleep while driving in August 2014 before she careened off an overpass near Memorial Park. She wasn’t wearing a seat belt, and her body was tossed through the windshield. She was fortunate to have
landed on grass, and that a cyclist had come along less than an hour later.
Her family sobbed in the waiting room the next day when a neurosurgeon at Ben Taub Hospital told them the damage to Mandy’s brain was so widespread she would never recover. Kristina fell to the floor crying. Hours later, she made a pact with her parents and her youngest sister: They were going to do whatever it took to bring Mandy back.
Three months later, at TIRR, they had their breakthrough. Mandy moved her left hand. Soon, the therapists had her pressing yes or no on an iPad screen to answer questions. No, she did not have two brothers. Yes, she had two sisters. No, her mother’s name was not Susan. Yes, it was Brenda. Yes, she was in the room with her.
Kristina kept waiting for the next leap forward, but it hasn’t come. If anything, Mandy has regressed following repeated bouts of pneumonia and other physical setbacks. She’s likely still conscious, according to doctors, but is no longer able to show it, no longer able to communicate.
Today, Mandy lives in Cypress with her parents, who, like many families in their situation, have drained their retirement accounts to pay for her care. Her dad handles her tube feedings and medications. Her mom keeps her bedding clean and coordinates medical appointments. Kristina comes by to bathe her younger sister and work with her on rehab techniques they learned at TIRR. Her 9-year-old daughter and 6-year-old son sometimes help; other times, they lie with Aunt Mandy and watch cartoons. On Sunday mornings, church members come by to pray over her. This is their new normal. Kristina still prays Mandy will walk and talk again someday. But for now, she has simpler hopes. If they could just get Mandy communicating again — even through blinking — maybe then she could tell them if she had an itch that needed to be scratched. Or maybe she could let them know when she wanted someone to change the channel on the television.
“It’s hard because I’m getting used to her like this,” Kristina said recently, gripping her sister’s hand. “At first, we could still hear her voice in our heads, and now … this is Mandy. We’ve had to accept that.”
On a cloudless spring afternoon in Houston, Danielle steered Nick’s power chair out the back door of the rehab hospital and into the parking lot. She noticed him squinting in the sunshine and slipped a pair of orange Oakley sunglasses over his eyes. Before the shooting, Nick never went anywhere without his signature shades.
“Nick, are you ready to drive?” his occupational therapist, Ashley Broadwater, said.
A technician had attached a head-control system to his power chair, one they hoped would help Nick become mobile again. He would be able turn the chair with a tilt of his head to the left or right. To go forward, he’d only have to lean his head back.
Another therapist set up blue obstacles.
“OK, Nick, I want you to turn left,” Broadwater said.
After a few seconds, he turned his head right, and the chair began to spin in a circle. Broadwater stopped him and again asked him to turn left.
“There you go,” she said, as Nick leaned his head that way. “Now I want you to push your head straight back.”
It took a few prompts before Nick complied. He leaned back, finally, and the chair began to roll forward. But instead of weaving through the obstacles, he plowed right into them.
“It must be more fun to hit them,” his dad, James, joked. “Look out, he’s coming for you, Ashley.”
Thirty minutes ticked by as Nick swerved and spun. It was difficult to tell how well he was controlling the chair, and Broadwater was having a hard time getting him to respond to her directions.
“Are you awake?” she asked at one point, after guiding him onto the sidewalk.
With severe brain injuries, some days are better than others. On afternoons like this, when a patient seems less alert, less aware, doubt can creep in. Dr. Sunil Kothari, Nick’s rehab physician, hears it all the time from family members: Is he really getting better? Or is he regressing?
Insurance companies begin asking the same questions within days of patients arriving at TIRR, and then they continue to ask, demanding on a nearweekly basis that the hospital provide proof of improvement to justify a medical bill of more than $100,000 a month.
By spring, the company that manages Nick’s insurance plan began signaling that his time at TIRR would soon be running out. But just before each deadline, doctors managed to point to a new breakthrough — new movement in his arm, more strength in his legs — to buy him more time.
What would his family do if Nick stopped making progress? His parents’ home in Baton Rouge had been destroyed in the historic flooding there weeks after the shooting. Danielle had no place to take him, no idea how she would care for him if she had to go back to work. People had donated about $40,000 by then to help pay for Nick’s future medical care, but that wouldn’t be nearly enough.
After a few minutes watching him spin aimlessly that afternoon in his power chair, failing to respond to Broadwater’s prompts, Danielle walked up to her fiancé and leaned close to his face.
“Hey, look over here, Nick,” she said, lowering her voice. “I know this is hard. I know you’re tired. But I need you to focus. Can you do that for me?” No response. “Nick, I need you to wake up,” she said, and plucked the sunglasses off his face.
As she did, Nick jerked back suddenly and cocked his head to the side. His wide eyes locked on Danielle. Almost like he was annoyed. Then he smiled.
“I see you,” she said, laughing. “You’re awake now.”
Minutes later, Nick was back in the parking lot, zipping around in his chair, getting reacquainted with the feeling of sun on his skin and a gentle breeze through his hair.
Coming Wednesday: Part 4 Life worth living