A Mother’s Love, A Daughter’s Courage

A Mother’s Love, A Daughter’s Courage
By LINDSAY PETERSON

peterson@tampatrib.com

Reprinted with permission from the Tampa Tribune

TAMPA – Everyone wore red, white and blue. But to Karyn Pingel, no one looked quite like her 12-year-old daughter, Corbyn, in her sparkly, navy blue sweater, blue jeans skirt and matching red shirt and socks.

Karyn caught Corbyn’s eye and, with two fingers, lifted the corners of her mouth to indicate “smile.” Corbyn smiled, but she was distracted.

She was the youngest among the 50 people being honored in Orlando that bright October morning. They had been picked from hundreds to carry the Olympic torch in its relay from the 1996 site in Atlanta to Salt Lake City, where the Games begin in February.

As the mayor spoke of “the people who inspire us and bring us together,” Corbyn peered through the crowd for a glimpse of one person, singer Howie Dorough of the Backstreet Boys, there to congratulate the torch runners.

Corbyn could barely speak at age 3. For years she required leg braces. She only recently mustered the strength and skill to perform a cartwheel. All she wanted was to be a girl like any other.

The mayor spoke of “obstacles and overcoming.” And Corbyn finally caught sight of Dorough.

Karyn watched a grin spread across her daughter’s face.

As Karyn looked in shock at images of her baby’s brain, the surgeons at Tampa General Hospital stared at her, waiting for an answer.

About 18 hours earlier, her daughter had suffered a major seizure. Tests first showed blood in the infant’s spinal fluid, then revealed the monster lurking in her brain, a slowly leaking sac of blood about the size of an adult thumb.

Every passing second put 7- week-old Corbyn in greater danger. If the aneurysm weren’t removed, Corbyn would certainly die, but chances were slim she would survive the surgery.

The doctors asked again: “What do you want us to do?”

Silence.

Karyn, 18, turned to her father, sitting at the table with her husband and her mother, who were also barely comprehending events.

“OK, Ron,” surgeon David Cahill said to Karyn’s father, “either we’re going to do this or we’re not.”

Ron Kaufman was a doctor, an internist, and vice president of health sciences at the University of South Florida. He knew all the risks.

He had been with Karyn when Corbyn was born, on his own birthday. The baby, his first grandchild, had just learned to smile. He pushed his emotions aside.

“If we do nothing,” he thought, “then Corbyn will die. But if I permit her to go through this, she may die anyway, and Karyn may end up feeling more guilty. But if the surgery succeeds, what’s the result? A disabled child? A serious emotional burden to the family for the rest of their lives?”

“Surgery’s her only hope,” he told his daughter. “We have to give her a chance.”

With Karyn’s nod, the doctors spun into action, and a stack of papers appeared before her for signatures. She was finishing at the intensive care front desk when the nurses wheeled Corbyn past. They paused for Karyn to say goodbye.

“All I saw was this very small, helpless little body,” she said recently. “I thought it was the last time I’d see her alive.”

Karyn doesn’t remember much about the next nine hours, beyond the pacing and peering down the hallway toward the operating room. She swung between fear for her baby and fury over her loss of control.

Corbyn’s birth had focused Karyn’s life. She had been aimless and easily bored when she entered college early, looking for a greater challenge. Then she got pregnant, and a clear, purposeful course stretched out before her. She took good care of herself, and the Caesarean-section birth went well.

Now this. It made no sense.

When the operating room doors burst open, nurses rushed out pushing Corbyn in a special crib. She was alive, but Karyn barely recognized her.

Tubes covered her face and body. She was pale and still, like a strange doll. She smelled of medicine, bandages and tape.

What Karyn didn’t learn until later was that the nurses had been warned, “Don’t get attached to this one.” She also learned later that Corbyn’s aneurysm had burst – she’d had a stroke – as soon as the surgeons opened her skull. They had kept her alive and clipped the artery to stop the blood flow, but the damage was massive.

If Corbyn wakes up, pediatricians told Karyn, she may be blind, deaf, and severely mentally and physically disabled.

Karyn refused to believe it. She had never let anyone dictate the terms of her life, and she wasn’t about to start now. She sat with Corbyn through the night.

And Corbyn hung on.

Karyn was there when her daughter’s eyes opened, and at that moment, she said, she knew.

Karyn had started a diary after Corbyn was born Nov. 30, 1988, and in the first entries she talked about Corbyn in the third person. But after the stroke seven weeks later, she began writing directly to her child.

“You are a brave, strong, little girl! We all love you,” she wrote when Corbyn came home a week after surgery.

“In the car, you just babble continuously,” she wrote March 19. “You do the same `talking’ in the mornings. We put pictures & toys in your crib so when you wake up, you see them and `tell them all about it.’ ”

April 12: “When I shook your star rattle in front of you, you actually reached for it. AND GOT IT!”

No one had explained this to Karyn, but she and Corbyn had two powerful allies in time and nature.

A baby’s brain holds more than a billion neurons, the nerve cells that direct every human thought, every movement.

These neurons set up shop in certain places to carry out their specific duties. But how well they perform depends on how well they reach out and connect. And this depends on the world around them, the stimulation they get from a shaking rattle or a smiling face saying “da da.”

Millions of Corbyn’s neurons had been wiped out, not only when the aneurysm burst but also when doctors clipped the artery, a major conduit that feeds neurons throughout the brain.

Still, millions were left. And as Corbyn entered this critical time in her brain’s formation, Karyn was there.

As Karyn watched her baby’s every move, she saw Corbyn wasn’t using her right hand, arm and leg. This wasn’t surprising considering the damage was on her brain’s left side. So at 3 months, Corbyn began therapy.

The therapist “got you to play with a ball,” Karyn wrote April 27. “I rolled it to you and you pushed it back with your right hand! I was so proud of you!”

“I watched you while you played,” she wrote July 30. “You can do almost everything now. You can … switch the plate from mirror to bear, squeak the dog, move the cat.”

On Nov. 17, “I finally saw you get yourself into the sitting position! Now you can stand, cruise, get back to the floor, crawl, sit, roll. You are such a big girl now!”

Overall, Karyn recorded mostly good news that first year. She left out details of her marriage breaking under the stress. And she didn’t make much about Corbyn’s delays. But by 18 months, Corbyn still wasn’t walking. She could take a few steps, but only if she had something to hold onto.

“We were never sure she’d be able to walk,” Karyn said.

A Struggle For First Steps And Words

By now, however, Karyn had help. She had met Ryan Pingel on a blind date and had seen right away that he adored both her and Corbyn.

Karyn and Ryan cared for Corbyn together. They bathed her every evening, wrapping her tightly in a towel. And while wrapped in her terry-cloth cocoon one night, Corbyn took two steps before toppling.

Karyn cheered. “Can we get her to do that again?”

They tightened the towel, and Corbyn took a few more steps. So they began experimenting, loosening smaller towels little by little. It didn’t work. Always, as the towel fell, Corbyn sat.

In the meantime, Karyn’s mother was coaching Corbyn, too. On July 20, 1990, as Karyn wrote in her diary, “Grandma held you by your overall straps, then let you go. We all yelled, `We have you!’ And you kept walking.”

In 1992, after Karyn and Ryan married, they moved to Indiana for him to do postgraduate work in biology at Purdue University. They enrolled Corbyn in a preschool program that included therapy. Karyn was summoned to the school almost immediately.

The therapists explained that Corbyn had been trying to tell them something, but they couldn’t figure it out. Corbyn repeated it to her mother, and Karyn repeated it to the therapists.

“We didn’t understand a word,” one of them told Karyn.

“You’re kidding me,” Karyn said.

The therapists looked at each other. Then they looked at Karyn. By 3, they explained, children should be intelligible to most people. To everyone but her parents, Corbyn spoke gibberish.

Her parents knew the stroke had damaged the area of the brain controlling movement on her right side. Now, they realized, she also had lost an area controlling her grasp of word sounds, the core of communication.

An evaluation showed Corbyn was using only about five sounds, and she was using them in the wrong order.

Speech therapists began coaxing her to say new things. Lamb. Box. Rat. Using toys and whatever else worked, they searched for ways to get her to repeat certain sounds, over and over.

As damaged as it was, Corbyn’s young brain had the power to restructure itself. The human brain retains this ability into old age, but it’s never more pliable than in the first years.

As the therapists encouraged Corbyn to speak, they forced her brain cells, or neurons, to fire again and again. At first they may have fired into darkness. But not for long.

When a neuron reaches out and gets no response, if it’s stimulated enough, it will forge a new pathway. It’s as if the neuron calls, “Hello. Hello. Is anybody there?” And finally another responds.

“I’m here. Come here.”

The responding cells may have been designated for another purpose, but they’ll do the job they’ve been “recruited” for.

Karyn was so happy the day she watched Corbyn say something to another little girl and the little girl say something back.

Improvement didn’t come easily. Corbyn’s brain damage made her throat so sensitive, she choked on nearly everything she ate except macaroni and cheese or tiny pieces of hot dog. Her balance was so skewed, it took her two years to learn to swing.

But the therapists awed Karyn.

“They helped Corbyn and showed me what to do,” she said.

Watching them, she found her own future. Imagine how much more she could help Corbyn, she thought, if she became a therapist.

How Hard Should Corbyn Be Pushed?

Karyn and Ryan returned to Tampa to be close to her parents and USF, where she began classes in speech therapy.

Corbyn learned to read as her parents read to her nightly. She loved “Stellaluna,” the story of a baby bat who gets lost, is found by birds and has to learn the bird ways. She asked for the book so often that Karyn began calling her Corbaluna, then just Luna.

She walked, but with a limp. A brace encased her ankle and leg to keep her foot from flopping. Even with therapy, her right hand remained bent at the wrist, with her fingers frozen in an awkward-looking fist.

Still, her mother treated her like any other child. She was determined that Corbyn progress with her peers through the grades, and at home she made Corbyn exercise, clean her room, do other chores and study.

“She didn’t have a hall pass for life,” Karyn said. “If you expect a lot from a child, they’ll give a lot.”

Karyn’s father disagreed.

“You push too hard,” he said. Let her be. It’s enough that she’s alive.

It wasn’t enough for Karyn. She wanted more than the “functional” label 9-year-old Corbyn was about to get from therapists who were satisfied she could dress herself and manage other basic tasks.

But to keep the public school services she still needed to move forward, Corbyn would have to take a series of tests, including a measurement of her IQ. Karyn dreaded that part. If Corbyn’s IQ was low, she didn’t want to know.

Corbyn’s IQ turned out to be normal. The shock was what the other assessments showed.

Corbyn works with “enormous persistence and effort [but] feels very vulnerable to others, that they will hurt her,” said the psychologist. She “feels angry and sad about how hard she needs to work and worries about the work she will need to do in the future.”

Corbyn told the psychologist a story about a girl “who had a weird bump on her head. She got it clipped and felt pretty good but mostly sad. She couldn’t do anything but work.”

She also told a story about a girl with no friends.

The girl cried, “and her mother gave her a tissue that made her into a swan. But the girl still felt like a `duck’ and stayed that way for the rest of her life.”

Karyn was devastated.

“What have we done to her?” she asked.

Karyn and Ryan began searching for ways to make Corbyn feel successful. They enrolled her in a horseback riding program. They also found a county track program for disabled children.

And Corbyn discovered she could run.

She walked with a rough gait. But she ran with ease. The momentum smoothed her movement into a natural, even flow. When she ran, no one stared or mocked her. She was free.

“It makes me feel happy,” she said.

Corbyn worked around her unresponsive right hand, finding one-handed ways to tie her shoes and zip her jeans.

To get in and out of her house, she set down her books, opened the door with her left hand, picked up her books and stepped out, then set down the books again and pulled the door closed.

Her mom was thrilled to see Corbyn manage that series of actions, because her stroke had damaged the area of her brain coordinating her ability to plan and complete multistep tasks.

But each year brought new demands.

Fifth grade, from the first day, was a mountain.

For the first time, Corbyn was required to change classes, for language, math and science “blocks.” The shy, self-conscious girl reeled as classmates poured into the Schwarzkopf Elementary halls, jostling to their destinations. She didn’t know whether to turn right or left, take this hallway or that.

She came home crying.

Keep trying, Luna, her mom urged.

But soon she came home crying again.

Her brain couldn’t yet process information as quickly as her class work required. Eraser swipes, pencil taps, coughs all assaulted her fragile concentration. Teachers noticed the lapses, and one day, one of them decided a special lesson would get her to focus. The teacher waited until Corbyn looked lost, then called on her with a question.

Corbyn, already feeling friendless, was humiliated.

Karyn was furious. She demanded the school put Corbyn in a program of smaller classes. But still, Corbyn couldn’t focus. She couldn’t comprehend her lessons, even with the help of tutors.

Cold doubts flooded Karyn. Maybe her father was right, she thought. “Maybe she’s hit a wall. Maybe this is the best she can do and I’m expecting too much.”

Corbyn sometimes hated her body, particularly her right hand, but she trusted her ability to think. Now her mind was betraying her.

“I was thinking maybe I’m going backwards and getting worse. Maybe I’ll never get it,” she said. “I called myself bad things. … `Stupid and dumb,’ basically.”

Succeeding now required Corbyn’s brain to perform more complex feats. Certain areas had to work with others to combine and relay signals at a faster rate than ever.

Karyn’s natural defiance rose again. She knew Corbyn’s brain had the power to reorganize itself to work around the dead neurons.

“I know my child can learn,” she said.

Coaxing Those Neurons To Fire

By now, Karyn had a master’s degree in speech therapy. She worked with people worse off than Corbyn. So she became her daughter’s after-school tutor.

Every day she got home by 2:30 p.m., when Corbyn came through the door, washed up and sat down to her books.

“She knew this was her last chance,” Karyn said.

Together they did her homework using different techniques. For math, Karyn dumped out a pile of Fruit Loops and worked out the problems in 3-D. She cut up slices of bread to show proportions.

For reading, Karyn and Corbyn went to the public and school libraries and found the shortest books on the fifth-grade reading list: “Bats,” “Frogs,” “The Girl Who Loved Wild Horses.”

At first, Karyn read the books to Corbyn. Then they got more and took turns reading pages. Finally Corbyn was reading whole books by herself.

As the months passed, Corbyn’s grades rose. One day she came home with news. On her classroom wall was a picture of outer space, with students’ names on space capsules that moved forward as each collected reading list points.

“I’m in the lead,” Corbyn crowed. “I’m in the lead.”

She made it through fifth grade, and Karyn put her in summer school to keep the momentum going. But sixth loomed. Middle school. Lots of children, lots of changes.

Karyn and Ryan worried these hurdles would be too high and they would have to consider a return to fifth grade or a special school. The prospect left Corbyn shaking her head no, no, no.

The first day at Walker Middle, Karyn waited for the call, either from Corbyn or the school. It came, from the school.

Corbyn was doing fine.

And she kept doing fine, right through to the memorable day when she realized something had changed. She was different.

“I knew what was going on,” she said. As the teacher spoke, “I knew what she was talking about. I was taking notes and keeping up. I went, `How is this possible?’ ”

It was possible because, again, Corbyn had nature on her side.

Just before puberty, the brain sprouts new fields of neurons, mostly in the area of the brain responsible for reasoning and self-control. There’s vast growth, then a pruning process as the brain turns to building the connections the child is using. Neurologists like to say, “Neurons that fire together wire together.”

Corbyn made the sixth-grade honor roll every semester.

Showing Corbyn Her Potential

Corbyn’s closest friends remained her family, even though her mother could be a drill sergeant and her kindergarten-age brother, Aaron, bugged her when she tried to read or play video games.

“She’s a loving, happy girl,” her grandfather said. But he knew she was self-conscious about her leg and hand. He worried she was becoming a solitary child.

One day, while reading one of his medical journals, he saw a reference to a new kind of therapy. He gave the article to Karyn.

“This is for Corbyn,” he said.

The research showed it worked with people even years after their strokes. Karyn, immediately interested, contacted lead researcher Edward Taub at the University of Alabama at Birmingham.

Taub’s idea, built on years of his own and others’ research, is that limbs become useless after strokes not so much because people can’t move them, but because they don’t. They learn to depend on the healthy muscles. If those muscles are restrained and the patient is forced to use the disabled ones, the brain makes new connections.

Several centers across the country were testing the technique, called constraint-induced movement therapy, so Karyn began searching for one that would take Corbyn as a subject. The girl didn’t meet any of their criteria.

Finally, Karyn found a researcher in Konstaz, Germany, who had been working with Taub.

Now she only had one person to convince.

Corbyn had learned to protect herself from risk. She liked to be safe in her bedroom, surrounded by her miniature horses, pop music posters and Harry Potter books. She read, drew, or used the computer outside her door to fashion towns with her city-building computer game. She wrote fantasy stories listening to ‘N Sync, O-Town, the Backstreet Boys.

She exercised faithfully to keep her leg limber. As she grew, her spine curved, hiking her right hip upward. Without constant stretching, she would lose her smooth running gait.

It was different with her hand. She’d given up on that. The fine motor movements of the hand and arm are among the brain’s most complex and difficult to repair.

“This is not going to work. Nothing else has,” she said when her mother suggested the therapy. Her hand had become a dumb thing, not really part of her. “It didn’t listen before,” she said. “What makes you think it will now?”

Asking More Than Ever Before

In an airplane about to take off from New Jersey on Feb. 8, Karyn looked at her husband and children and thought, “This is nuts. Why am I chasing halfway around the world?”

The answer was the same as always.

“I had to try everything I could for my daughter. I know I have mommy guilt. I know I’ll always feel like I did something that caused her stroke. I know I didn’t, but I can’t stop trying to fix it.”

The therapy demanded more of Corbyn than she had ever been asked before.

Her left arm was straitjacketed into a sling, and for six hours a day therapist Sabine Koelbel coaxed, cajoled, urged and begged Corbyn to move a peg on a board, reach for a glass, pick up an orange.

“I thought my head was going to explode,” Corbyn said.

At the end of the first day, she fell into bed at 6:30 p.m. The next day brought more of the same. Corbyn with her frozen hand hovering over a peg or puzzle piece.

Relax, Sabine said. Trust your hand. Concentrate.

On the third day, Corbyn’s hand floated over a stumpy red peg about an inch in diameter – and rotated to the right.

It rotated.

It had never done that before.

Over the next four weeks, Corbyn worked with Sabine to learn to open her hand, grasp an object, pick it up and set it down. She did it again and again with a glass, a hairbrush, pieces of a puzzle.

“It was stressing,” Corbyn said. But fun. “I was smiling the whole time. I couldn’t believe it. I was thinking, `It’s doing all these things.’ ”

No more stupid hand. It became “OK hand.”

Corbyn’s not sure what happened. Even researchers can’t explain precisely what changes in the brain during constraint-induced therapy. But whatever happened, it happened as it should.

To Corbyn, it was “like magic.”

Not perfect, of course, and still work. But she came home transformed.

“She went from `I can’t’ and `It won’t’ to `I can and I will,’ ” Karyn said.

In April, Karyn heard through a stroke support group that the U.S. Olympic Committee was looking for people to relay the torch on its journey from Atlanta to Salt Lake City. It asked for nominations of 100 words or less.

Karyn knew exactly what to write.

“My daughter, Corbyn, truly embodies the inspirational spirit of the Olympic Movement. … Although we were told she would not walk, talk, see, or hear, Corbyn has proven everyone wrong. … Corbyn attends a regular middle school, runs track, rides horses and is a talented artist. Corbyn has proven that she has a champion’s determination to overcome the greatest of adversities. Corbyn constantly strives to improve and be an inspiration to all who know her.”

It was one of 7,200 winning essays from 210,000 submitted. Corbyn is among nearly 90 people who will carry the torch Dec. 7 and 8 through Central Florida.

Corbyn’s not sure what she thinks about the honor. It’s a little embarrassing, she said. And she’s concerned about running with something in her hand.

“I usually run freely,” she said.

But she’s practicing with a special weight called a “heavy hand.” It’s nearly 2 pounds, about the weight of that torch.

When she was introduced with the other runners in Orlando, she heard a 1996 runner try to describe the excitement. “You see it coming,” the woman said. “And you just grab it and take off.”

Corbyn’s family can’t help but worry about what’s still coming her way. How she’ll manage the increasing complexities of life. Driving. Managing a checkbook. Holding a job.

“Whatever she does,” her grandfather said, “she’ll make her own world.”

Right now, she’s writing a story about a girl version of Harry Potter. She has been thinking lately she may have a bit of the wizard inside her.

Karyn has no doubt. She saw that little wonder the minute Corbyn opened her eyes in the infant intensive care unit at Tampa General Hospital.