Then, on November 3, 2000, a stroke erased the first 13 months of her life.
Her parents were out of town. They'd traveled from Olathe to Honolulu to celebrate their fifth wedding anniversary. Olivia was staying with Jeff's parents, Doris and Clifford Johnson, at their Raymore home.
When Doris looked in on her before heading to work, Olivia was sleeping soundly. An hour later, Clifford peaked in on his granddaughter.
"She was all rigid, and her little arm would jerk every now and then," he recalls.
Soon, Olivia was surrounded by doctors in the Children's Mercy Hospital emergency room.
Her eyes were open, Clifford says, but she wasn't present. When he quacked like a duck a game they often played she didn't respond.
Over the next few hours, hospital workers shuttled Olivia from brain scans to blood tests to two spinal taps. When Michelle walked into the intensive care unit after a rushed return across five time zones, Olivia was in the middle of a seizure.
For 48 hours, physicians didn't know what was wrong with her. Then they gathered the family in a conference room and, pointing to a darker section on the scans of Olivia's brain, told them it had been a stroke.
Jeff went home and began scouring the Internet for information about her prognosis. "But I quit looking," he says. "It freaked me out. It looked like a pretty bleak picture, as far as her future."
With extensive therapy, doctors said, Olivia would regain the use of her now-weakened left side. If she was lucky, when she started kindergarten in four years, the other kids might never know the difference.
"I just assumed, she's going to end up being normal," Doris says.
Now 7, Olivia wears bright-pink glasses, and her blond hair is pulled up in a high ponytail that bobs back and forth as she races around the living room. Sporting a red Nike tracksuit, she tells her grandma to watch as she jumps. Bored with the Legos scattered across the floor, she pounces unexpectedly on her grandfather as he sits on the couch.
"Hey, monkey," he says.
"I'm not a monkey. I'm a puma," she replies with a grin.
She's also one of a tiny number of children who have had a surgery that's inconceivable to most people outside the field of neuroscience. The stroke permanently disrupted delicate connections in Olivia's brain. As she grew older, that damage led to daily seizures that robbed Olivia of her playful independence and her ability to learn kindergarten concepts. Eventually, Jeff and Michelle Johnson realized the only alternative for their daughter was the most terrifying one.
Three out of every 100,000 children suffer a stroke before they're 18. Approximately 10 percent of those strokes are fatal. Even if a child survives it, a stroke is a brain killer.
"If you look at a brain scan months later, you'll see a hole where that tissue was lost and will never come back again," says Dr. Bradley Schlaggar, a pediatric neurologist and professor at Washington University in St. Louis.
After 17 days in the hospital, Olivia started what would be years of physical therapy.
Her memories from life before her stroke told her that she knew how to walk; her therapists insisted that she learn how to crawl first. At times the Johnsons had to confine the energetic toddler to a laundry basket to keep her from using the couch to pull herself up before she was ready.
Five months after the stroke, she was walking again.
When she turned 3, she started preschool at Rolling Ridge Elementary School in Olathe. Aside from the brace on her left leg, Olivia was just another kid who was writing her name, learning to read and getting ready for kindergarten.
All that progress was wiped clean again in 2004.
The brain is essentially a complex network of connections, so the stretches of stroke-induced dead ends made Olivia's brain behave erratically. As a result of that disjointed wiring, the seizures kept coming.
For three years, they were controlled by medication. Then, one evening in March 2004, Olivia was sitting in front of the television when her body suddenly began to spasm more intensely than her parents had ever seen.
The seizures had taken a hold that the medications couldn't pull loose not Topamax or Keppra or Phelbatol. Not even all three combined at the maximum dosage.
As the next year dragged on, Olivia began having seizures every day. Some lasted as long as half an hour. Michelle quit her job to watch her.
"You couldn't leave the room because you didn't know what would happen," Michelle says. "I remember she was in front of the TV one time and hit the side of the entertainment center and bloodied her nose. Or she'd be running, have a seizure and just hit the ground."
Worse than the black eyes was her cognitive decline. Suddenly she couldn't write her name anymore.
"She quit progressing," Jeff says. "She wasn't able to retain anything. She was there physically, but she wasn't really there."
They went through nine medications. They investigated a small machine that tapped into a nerve in the neck to disrupt seizures with electrical impulses. They learned about a special ketogenic diet nearly identical to the Atkins regime that starves the brain of sugars.
Then Doris Johnson picked up a book by Dr. Ben Carson, director of pediatric neurosurgery at the Johns Hopkins Medical Center in Baltimore. Carson, a writer and physician, is a sought-after motivational speaker thanks to his personal journey from inner-city Detroit to one of the nation's leading research institutions. In the medical profession, he is renowned for reviving a radical procedure that most physicians abandoned in the 1970s: the hemispherectomy.
Removing half the brain.
Carson performed his first hemispherectomy in 1985. Today, only half a dozen institutions in North America perform the surgery with any regularity. One of them is the Cleveland Clinic. Olivia's neurologist at Children's Mercy suggested that the Johnsons take their now 5-year-old daughter to that sprawling medical complex in Ohio just for an evaluation.
"I remember being like, 'OK, we'll go up there, but if they say she should have this surgery, I'm going to say no way,'" Michelle recalls. "I thought, You're not doing that to my child. That's just crazy." If there's one thing they drill into the minds of future neurosurgeons, it's that brain tissue must be preserved at all costs. Electing to remove an entire hemisphere? They don't teach you that in med school, says Dr. William Bingaman, vice chairman of the Neurological Institute and head of the epilepsy surgery section at the Cleveland Clinic.
Bingaman says he performs more hemispherectomies than any other doctor in the United States about 40 a year. His patients come from all over the world for a radical procedure that is still regaining the confidence of physicians.
The concept of removing such a significant portion of the body's most vital organ is nearly 100 years old. Walter Dandy, a Johns Hopkins researcher, removed a patient's right hemisphere to eliminate a malignant brain tumor in 1923. The patient survived, but the surgery didn't prevent the cancer from coming back.
The procedure fell out of favor, Bingaman says, until the 1950s, when doctors started using it to treat debilitating epilepsy in children. The idea was to remove the part of the brain that was the source of the seizures. But in the 1960s, many patients suffered complications. In some, the remaining half of the brain began to shift into the empty space. In others, the brain started to hemorrhage, or fluid built up in the empty cavity. But as technology advanced, hemispherectomies became a viable option again in the mid-'80s.
That option is open only to kids, though. The brain grows and gains mass for about the first seven years of a child's life, and subtle changes continue to shape the brain for the next 10 years. Surgeons believe that only children younger than 16 can rebound physically after a hemispherectomy.
In September 2005, Michelle Johnson missed her stepbrother's wedding, and the family drove the 13 hours to Cleveland. For five days, Olivia sat in a hospital bed, her head hooked up to a monitoring device that kept track of seizure activity. At the end of the week, doctors said Olivia's best chance was a hemispherectomy.
"If we wanted her to lead any kind of normal life, she'd need this surgery or the seizures could actually kill her," Michelle says.
It was a long, silent ride home to Olathe.
"God, I had a hard time," Michelle says. "I would cry a lot thinking about her head being cut open and her brain removed."
The Johnsons didn't worry that their daughter would die. The mortality rate is less than 1 percent, and in seven years of surgery, Bingaman had never lost a patient. But because there was so much activity in her brain scans, doctors could give Olivia only a 60 percent chance that the surgery would cure her seizures.
The day before Thanksgiving in 2005, Michelle cut Olivia's long, blond hair and donated it to Locks of Love. Then she and Jeff tried to explain to Olivia what was about to happen.
"We just told her a couple of days before that she was going to have a boo-boo on her head," Michelle says. "But those seizures, I don't have any clue what they did to her, but they just affected her a lot. She didn't understand what was about to go on."
On December 8, 2005, less than two months after her 6th birthday, Olivia woke up at 5 a.m. at the Cleveland Clinic Guesthouse and took a shuttle to the P Building at the sprawling surgical center. Her head was shaved and secured in a three-pronged skull clamp. Bingaman describes the surgery as a painstaking archaeology dig. With a purple marker, he draws the long incision line, curving around the side of the skull like a reverse question mark. To get to the brain, Bingaman must cut through four protective layers.
With a scalpel, he slices through the scalp. He peels it back to expose an oval-shaped temporalis muscle, which contracts to move the jaw when it chews. He carefully carves through the deep-red fibers, setting the sliver of muscle aside to be reattached later.
Arriving at the skull, Bingaman puts down the scalpel. With a high-speed air drill, he cuts a 4-inch-by-4-inch door through the bone. Under that shelter, the brain has only paper-thin protection a gray membrane called the dura. With the scalpel, Bingaman breaches that layer as well.
Once he has pulled up the dura, Bingaman sees his first glimpse of the brain. Healthy brain tissue is a creamy tan, with a texture that's a little softer than Jell-O.
Olivia's brain was different.
Her stroke had burrowed a hole, like a tunnel, that was now filled with clear spinal fluid. Around it, the scar tissue was stiff and ghostly pale. That's the tissue Bingaman was after.
Instead of cutting it out with his scalpel, Bingaman used a device that looks like a small flashlight, which uses ultrasonic waves to dissolve the tissue. Then he sucked the matter out of the brain cavity.
"The brain itself is pretty suckable," he says.
Eager to save any sliver of healthy brain matter, he melted away all but a small section of the frontal lobe. Next, he directed the small tool to the parietal lobe until that tissue disappeared.
Then he moved on to the temporal and occipital lobes. Finally, he came to Olivia's corpus callosum, a complex network that ties a healthy brain's two hemispheres together. Careful not to damage the healthy half, Bingaman snipped that connection; with the right hemisphere gone, Olivia's corpus callosum becomes a biological bridge to nowhere.
He poured saline solution into the now-vacant space on the right side of the cranium. If Olivia was lucky, that space would be constantly replenished by her body's natural production of spinal fluid. If too much fluid built up, she would need a shunt to direct the liquid elsewhere.
Bingaman began to reconstruct the brain's protective layers. He stitched the dura back into place, retrieved the chunk of bone and, with titanium staples, sealed the door in her skull. He replaced her chewing muscle and finally smoothed her scalp back into place.
Downstairs, in a waiting area, the Johnson family watched their buzzer the type that restaurant hostesses hand diners waiting for tables. At 2 p.m., it vibrated.
The surgery was over, but Bingaman couldn't declare it a success.
The only proof would be the passage of time. For a patient who makes it through the first year without seizures, the chances that they will return drop to 10 percent. After five years, the chance becomes almost negligible.
"I can't make that time pass any more quickly," Bingaman says.
He deals with the inner working of the human brain every day. But he's still mystified by it. "It's a huge thing to remove half the brain," he says, "especially because we don't understand how the other side compensates."
But it does. Physicians can tell families like the Johnsons that hemispherectomies work. What they don't know is how the brain reorganizes itself when half its matter has been replaced with spinal fluid and empty space. Schlaggar and his team at Washington University in St. Louis are trying to figure that out.
In the late 19th century, French scientist Paul Broca discovered that a patient with an injury to his left frontal lobe could understand what people were telling him but couldn't form words to respond.
Building on Broca's discovery, Dr. Carl Wernicke, a German neurologist, found that a patient with an injury to his rear parietal lobe had the physical ability to speak but couldn't comprehend language.
Thanks to those early discoveries, Schlaggar says, scientists understand that certain areas of the brain control certain aspects of human function.
Nobody has studied a group of kids with hemispherectomies long term. But researchers have been able to draw some broad conclusions about what Olivia can expect.
The right hemisphere controls the left side of the body. Remove that area of the brain, and a patient's left arm and leg will weaken. Such patients also lose half their field of vision in both eyes. Because she had the right side of her brain removed, Olivia can't see the world to the left.
A child who has had her right hemisphere removed can quickly regain her ability to speak or understand language, but she loses the emotional aspects of language. Subtleties in humor or sarcasm or change in tone may never register with Olivia.
The right hemisphere is also more involved in understanding spatial relationships, says Jordan Grafman, Ph.D., chief of cognitive neuroscience at the National Institute of Neurological Disorders and Stroke in Bethesda, Maryland. Take out the right side of the brain, and that patient is less likely to be a champion chess player or a point guard who is able to anticipate a player slicing to the basket.
Without the right side of the brain, patients may be less at ease in the world because they can't predict what will logically come next in a sequence of events.
"If you're in an office with a door, you already know what's outside that door. It's stored in your brain," Grafman says. "But sometimes, for people who've had surgery on the right side of their brain, they have no access to that knowledge. What's outside the door is of some concern because they don't know what's on the other side until they open it. That elevates anxiety."
But the brain isn't like other organs, such as the heart or the lungs, that serve one function in a predictable way. It has ways of getting around chinks in its system.
And fortunately for kids, their brains are more adaptive.
As strange as it sounds, Olivia was lucky that the stroke damaged 90 percent of her right hemisphere. That allowed her brain to evolve in a different way, cashing in on its plasticity. Schlaggar describes the functions of the right hemisphere as likely able to migrate meaning that some of Olivia's right-brain functions could have moved to her left hemisphere before her surgery.
But Grafman cautions that plasticity can stretch only so far. Something has to give.
"It's like real estate," he says. "Basically, you've got a certain amount, and you have to devote it to something. And when you do, it leaves less room for something else."
He says that Olivia could surprise her family with the skills she'll regain.
"But she's not going to look and be like a child that never had a hemisphere removed. Anybody who suggests otherwise is misleading," he says. Retraining the brain takes years of therapy and countless hours of physical strengthening and repetitive exercises. Olivia took those first steps toward recovery at the Rehabilitation Institute, a brown-brick building at 30th Street and Baltimore in Kansas City, Missouri. More than a year later, kids are following Olivia's example as they recover from hemispherectomies. On a frigid January morning, the tiny lights on Zachary Meier's black tennis shoes blink as he walks with a slight limp into the therapy room. The 6-year-old has a buzz cut, and a soft pink scar etches a letter T through his short blond hair. The incision is still flecked with black stitches.
Two months ago, Bingaman removed Zachary's right hemisphere to stop life-threatening seizures provoked by a brain malformation. Since December, Zachary and his dad, Jason, have driven down from St. Joseph several times a week for hours of therapy.
Settled at a long table in the waiting area, Jason is ready for his half-day stay at the institute. He has a Bible with a faded leather cover sitting at his left elbow and a binder of religious worksheets open in front of him. Jason says Zachary's seizures were so severe that the little boy would stop breathing. Worse, the seizures didn't simply run their course; the only thing that would make them stop was to administer rectal valium. They were relieved to discover the option of a hemispherectomy.
"My wife and I are both Christians, and we had several months to pray about this," Jason says. "We really had peace about it."
Down the hall in the therapy room, therapist Petra Wolf starts Zachary's session by massaging his left arm with lotion and stretching his back. As she works, his gaze darts around the room at the colorful posters on the wall, the baskets of mini Koosh balls, the little girl in the striped tank top who wails as her therapist extends her leg into the air.
Wolf carefully wraps Zachary's arm in a yellow, cartoon-decorated sleeve. "Do you want to do bubbles or the mailbox or the basketball?"
Barely moving his lips, Zachary whispers, "Basketball."
She holds a pingpong-ball-sized basketball above his head, and Zachary's arm rigidly shoots up to meet it. His fingers grab the toy with ease, but once he lowers his hand, Wolf has to gently pry it from his grip. Over the past few weeks, the strength in his shoulder and upper arm has improved, but his tense grip is a sign that his grasp-and-release skills still have a way to go.
Wolf hands him small, plastic fruits and vegetables that are divided into two pieces. The toy foods are held together with a shred of Velcro that's barely the size of a thumbtack, but Zachary's eyes narrow behind his wire-rimmed glasses, and his lips purse with effort as he tries to pull the pieces apart. If Olivia's experience is any indication, such fine dexterity in his fingers will be one of the most difficult skills to regain.
Zachary moves onto a blue square puzzle with a picture of a tiger. There are only six pieces, but the 6-year-old presses his lips together in concentration as he fits each into the cardboard slab. It's not the first time he has attempted the tiger puzzle. Wolf says it's a challenge for kids like Zachary and Olivia to relearn how to think things through.
"You or I would look at the piece and see what's on it and think, Oh, this matches this. But someone who's had this type of head injury won't look at it. They'll just put it in, and it better work."
Zachary has several more therapists to visit today. But each session will be informed by what the staff at the Rehab Institute learned from Olivia. She was the first hemispherectomy patient they had ever seen.
"We did do some research and look into it because it was like, whoa, they did that?" Wolf says.
Wolf and Olivia worked first on strength and awareness. With her arm supported by a splint to keep it straight, Olivia would crawl around the therapy room looking for toys and puzzle pieces that Wolf had strategically placed to her left side.
"In the beginning, you had to kind of show her how to play with the toys," Wolf says. "You have to kind of teach them how to pretend again. Everything becomes more concrete for them."
They moved on to playing dress-up so that Olivia would remember how to put on a shirt and pants. Once she regained more flexibility in her fingers, they progressed to brushing her teeth and writing her name.
By the time she was discharged in mid-2006, Olivia was working on riding a tricycle and responding to "who" and "what" questions.
Much of her school day is still devoted to therapy. But, Jeff says, the difference between her life before and after the surgery is remarkable.
"Now we can let her go out in the backyard and swing on the swing set," he says.
"We can let her take a bath and actually walk out of the room and get a drink of water," Michelle adds.
"Now she's got a chance to learn. She might go to college," Jeff says. "Before, getting through high school may not have happened."
Still, challenges and uncertainties hang over the young parents. Gradually since the surgery, they've weaned Olivia off her cocktail of medications. But she will continue to take Topamax until the end of 2007 to make sure the seizures don't return. Even then, Jeff wonders how the years of medications taken at such high doses will affect his growing daughter.
If Grafman has one piece of advice for the Johnsons, it's that the most vital aspect of recovery after this surgery isn't physical; it's social. Her young classmates are either considerate of or unaware of Olivia's uniqueness. But Michelle knows that the 7-year-old's greatest challenge may be adolescence.
"I worry more as she gets older," Michelle says. "Kids can be so mean." The oldest hemispherectomy patients are now in their mid-20s. Jill Scherler is 24. She started having seizures in 1984. For a year and a half, her doctors in Walters, Oklahoma, a town of 2,610 residents in the southwest part of the state, couldn't tell her parents why.
At the end of 1985, Kim and Stan Scherler took Jill to Johns Hopkins for an evaluation. On January 15, 1986, doctors removed her right hemisphere. It was only the third hemispherectomy there since Ben Carson reintroduced the procedure.
Over the telephone, Jill's speech is clear but measured. She answers questions literally and without elaboration.
Her memories begin with therapy.
"I guess it felt strange to not use my left arm anymore, but you find other ways to do things," she says. "I can tie my shoes one-handed, which wasn't easy. And, of course, opening a can of beans was difficult. But then they came out with a one-handed can opener."
Her parents waited an extra year to send her to kindergarten, but once she started school she stayed with her class through her senior year at Walters High School. Graduation, Jill says, was one of her proudest moments.
Kim says living in a small town was a blessing: All the kids had grown up with Jill, so her high school years went smoothly. If kids asked why she walked with a slight drag on her left leg, or why her left arm curved in front of her stomach instead of swinging at her side, or why the fingers on her left hand seemed frozen into a single unit, she told them, "I was born healthy, but at the age of 2, I started having seizures and had the right half of my brain removed."
She says most were amazed that they could be carrying on a conversation with a girl who had half a brain.
Now, Jill is a college student at Cameron University, studying to be an elementary school teacher. Between going to classes and volunteering at her church, she hangs out with her friends, plays spades on the computer or works through Sudoku puzzles.
She's not sure how she feels different from her classmates or whether she does at all.
"I think about it every once in a while, but my only downfall is I can't drive," she says matter-of-factly.
It's been more than 20 years since the surgery, but Kim Scherler still hopes her daughter appreciates the dilemma their family faced.
"You know, I still hate it for her, that she had to go through that," Kim says. "But on the other hand, we've explained to her that we did what we had to do to save her life." It's been more than a year since Olivia had her last seizure, but sometimes Michelle has moments of panic. "If I feel her jerk, or just a movement I'm used to feeling when she was having a seizure, I still have that fear," she says. "And I don't know if that will ever go away."
Getting through the day can be a challenge. When she's excited, Olivia is a perpetual-motion machine. Spending her afternoon inside on a chilly January day, she races back and forth across the living room. "One, two, three, four, five!" she shouts, punctuating her count with two-footed jumps and flips of the light switch.
Grinning, she launches herself onto the couch before hunkering down into her mother's lap.
"You've been a stinker from day one, haven't you?" Jeff says with a wry smile.
Olivia grins and points her finger at him as if in admonishment.
"Give me five," he says.
She reaches toward him with her right hand.
"No, with lefty," he says. "Give me lefty."
Reminding her to use the left side of her body isn't the only postsurgery refrain in the Johnson household. Olivia still needs constant reminders to relax.
"She doesn't have a self-calming mechanism," Jeff explains. "That's a right-hemisphere thing."
So they've taught her to sit and count to 10 or sing a song quietly. When she gets riled up, she is prompted to say "deep breath" to remind herself to settle down.
Michelle is lucky if Olivia sleeps until 3 a.m. before waking up to play. Most nights, she barely makes it past midnight before she needs to be lulled back to sleep.
Olivia is still too young to understand what happened to her, but her grandmother has prepared an introduction.
"Olivia's Story, by Grandma Doris Johnson" is a nine-page journal detailing her granddaughter's experience from the day of her stroke to her first follow-up at the clinic in December.
Olivia will know that the night before her surgery, she ate lasagna cooked in the hotel microwave. She'll know that the same day that doctors switched her from codeine to morphine, she asked her mom for McDonald's french fries.
She'll read that on December 15, "The adults are starting to get punchy. Daddy was filling out some medical history for Olivia this morning and wrote that she had a 'hysterectomy' instead of a 'hemispherectomy.'"
Even with that as a starter, Michelle isn't sure when she'll sit down with Olivia and explain how she's different from other kids.
She's not sure what she'll say.