Christina finds her voice

Posted: May 23, 2010

In an emergency room earlier this year, a young woman listed her symptoms, then explained why, if a CT scan were done, doctors would see that half her brain is gone.

The note-taking nurse nonchalantly nodded before mentioning how, years ago, she read about a little girl who had the same surgery.

That's her, the woman's mom replied.

The little girl with half a brain is still how many people remember Christina Santhouse.To some, it's who she will always be.

Christina Santhouse in her student teaching assignment

Christina is 23 now. Today, she graduates with a bachelor's degree in health sciences and a master's degree in speech and language pathology from a small private Catholic liberal arts college near Wilkes-Barre. She plans to become a speech therapist.

A fitting career choice, since the Bristol Township resident has found her voice again. 

The one she hasn't heard since she was 8 when she contracted a rare childhood infection.

Within six months, violent seizures that shook her body more than 100 times a day forced her into a wheelchair. The only cure was the scariest operation imaginable.

Doctors removed the right half of Christina's brain to stop Rasmussen's encephalitis?from first paralyzing, then killing her. She was the 59th child ever to undergo the last-resort surgery at Johns Hopkins' Children's Center in Baltimore.

The surgery saved her, but it took the only life she knew. Her left arm was left mostly paralyzed. She lost peripheral vision in one eye. Her left leg was crippled. It also killed her self-confidence.

She became the little girl with half a brain and an uncertain future.

The right side of the brain controls thinking skills such as problem-solving, reasoning, memory, organization and problems with communication. In most cases, once removed, the remaining healthy brain takes over the tasks of the missing side.

But that transfer isn't automatic or 100 percent guaranteed.

Christina would have to re-learn the most routine activities people do without giving them much thought. And some things, doctors warned, she'd probably never do again.

Their caution was understandable. In 1996, people didn't know what long-term outcomes to expect with a surgery that today remains a rare, last option. So they didn't set such high expectations.

"They were assuming that it wouldn't be possible," Christina says. "But I don't stop at "No.' "

An obstacle is only an untried opportunity, something life has plenty of. Not that turning obstacles into openings is simple or painless, but most people never saw Christina's struggles, only her successes.

No one would think less of her achievements if she took an easier way.

But shortcuts aren't her style. They only make you stick out, when all you want to do is fit in.

Besides, her brain works fine. Just differently than yours.

FEELING DIFFERENT

Christina Santhouse before the surgery

Looking at Christina, you see a woman with sunshine-colored hair, eyes like the spring sky and an ice-melting smile. Maybe you notice her left arm doesn't move and she walks with a slight limp.

Physically, Christina hasn't changed much over the years.

At barely 5 feet tall, people still mistake her for a kid — the nickname stepdad Albert "Pops" Catarro still uses.

Not long ago, she went to a chain restaurant near her college wearing a baseball cap. When she sat down, the waitress asked if she wanted a children's menu.

In a way, Christina had two childhoods.

Lynne Catarro doesn't remember her daughter before she got sick.

That girl — the standout soccer player, popular student and Brownie who was halfway to a green belt in karate— died a long time ago, she says.

The first few years after the surgery, Christina's personality changed something that Lynne, a special education teacher, expected. People with traumatic brain injuries — even as a result of surgery — often have changes in behavior, personality, moods and even sense of humor, doctors and therapists say.

Christina became more stubborn, impulsive and withdrawn, Lynne says.

She had the same smile, though.

"I really grieved who she was and rejoice in who she became," Lynne says.

Following her surgery, Christina faced months of healing and rehabilitation. She had to adjust to a new body that didn't work the way it did before.

"You have to figure out who you are again," Christina says.

She had to learn how to sit up, walk, speak and learn in new, unfamiliar ways. Try fixing your hair, folding clothes, using a knife and fork, fasten a bra, even putting on socks using only one arm. See how long it takes to finish. How fast you get tired.

Two months after surgery, she returned to school part time, but the learning never stopped. At home, her parents turned the ordinary into a lesson. A pizza dinner was a chance to reinforce fractions.

Every night, Lynne would re-teach Christina the day's school lessons to reinforce them. Christina would re-write the assignments, use flash cards, read the textbook, listen to the lesson on tape — and then read it again.

Every special education planning meeting, Christina was there. Lynne insisted on it. Why shouldn't she have a say in her education. She had to learn how to speak up for herself.

Besides, how was Lynne supposed to explain to teachers how Christina tied her shoe one-handed? 

She didn't know. Christina did.

One memory that often repeats in Lynne's mind is the first day that her daughter came home from a math tutoring lesson.

"Mom," Christina said, "I'm not the only one who needs help in math."

Christina made the honor roll throughout high school, but Albert Catarro admits the family worried that college wasn't in Christina's academic future. When she was accepted, they didn't want their fears holding her back.

"You hoped and pushed, but there is a lot of doubt," he says. "It was a hard time to go through."

At Misericordia University, Christina skipped the parties. She took summer classes. She studied, studied, studied. She made the dean's list every semester.

"She worked as hard as anybody I've met," Albert says. "She always thought ahead, anticipated things and worked hard."

Academically, Christina shined. Socially, she often stalled.

Christina Santhouse on her high school bowling team

After Christina got sick, people were afraid of her. Her social circle shrank to a handful of lasting friends. One parent told Lynne that her daughter couldn't play with Christina anymore. Parents worried her illness was contagious. It's not.

Doctors are unsure what causes Rasmussen's. Some believe it may be autoimmune-related. The brain becomes chronically inflamed, destroying brain cells. Untreated the disease literally eats the brain.

Growing up, Christina was painfully self-conscious of her body. She was the only player on her soccer team that wore a helmet; she replaced her favorite sport in fifth-grade with one-handed bowling. Her paralyzed arm and leg slowed her down and made her stand out.      

She looked different at that age when girls worry about their appearance enough without the added burden of orthopedic accessories and everyone at school knowing that you're that girl with half a brain.

Social awkwardness is one reason Lynne wanted her only child to attend a college away from the home — and the parents who sheltered her. She had to learn how strong she is.

At Misericordia, for the first time in a long time, Christina was just another student. No one on campus knew her life story before they knew her.

Other than an episode at the freshman picnic, which a local TV news crew crashed seeking an interview, she led a typical college life with roommate dramas, study anxiety, new found freedoms and responsibilities like teaching girls in her dorm how to do laundry.

She joined the campus ministry where, in her senior year, she was picked as one of its leaders. She served as a peer advocate for freshmen and an orientation leader. She joined the National Student Speech, Language and Hearing Association.

At college, people didn't question why she limped or what was wrong with her arm. Not right away.

"If they asked me, they knew me already, so they were interested in me," Christina says.

People she doesn't know well still ask what happened to her. With them, she simply says she broke her arm or sprained her ankle skiing.        

HER VOICE

That Christina pursued a career that involves speaking surprises no one who knows her. She first talked about her life in fifth grade before an audience of aspiring teachers.

Over the last 15 years, she has been interviewed for TV shows, newspaper and magazine articles; she has spoken at schools and professional conferences like the presentation on hemispherectomies and their effect on language skill development she made at a national conference of speech and language pathologists last November.

Truth be told, Christina once hated public speaking. The attention made her uncomfortable.

But Lynne believed it was important she share her story. It reminded people that differences, whatever they are, don't make you less human. They make you more unique.

Lynne also knew that talking would help Christina find her voice.

Now, Christina will help others find theirs.

On a sunny spring school day, Christina spoke in tongue-twisters.

This particular morning, her focus is "S" sounds with her students at Oliver Heckman Elementary School in Middletown, one of three local schools where she does graduate fieldwork.

She sees one or two students typically in 30-minute intervals. They usually play games like the one Christina invented the night before.

Pick a card out of the bucket. Say the word, nice and slow. Use it in a sentence. Decide if the word belongs in the spring, summer or both. Finally, they use the word in a sentence again and include the word "summer" or "spring."

Second-grader Matt Klinewski pulled out his word.

"What did you find?"

"Thee-weed."

"Push up the tongue, pal," she said, pointing her index finger up.

"Seaweed is in the ocean in the summer," Matt said.

"Sssssummer," Christina replied, again, pointing up her finger.

Another girl rushed through her syllables. Her tongue flew forward creating a "th" sound.

Slow down, Christina told her.

One girl picked a card with a picture of sandals.

"Can I say flip-flops?"

No. How many "S" sounds are in sandals?

Two, she answered.

"I want to hear both of them."

Christina did, rewarding the girl with a high-five.

Speech therapy wasn't the first career Christina considered. She wanted to be an occupational therapist but lacked the sheer physical strength the profession requires.

A high school career test recommended she pursue speech and language pathology, social work or become a nun. Speech therapy interested her the most. She knew how frustrating it is when you can't express yourself.

In her sophomore year, Christina was accepted into Misericordia's speech language pathology program, but when she got a 77 on her first test, an instructor suggested that she should let him help her pick another major.

(This wasn't the first time people doubted her. Years before, at a high school open house, an instructor who recognized Christina's name told her parents to take her home. She said the only career she'd have is answering telephones.)

Christina politely rejected the professor's advice. Speech is the career she wanted.

"He didn't know who he was messing with," she says.

She studied harder. She stayed after class. She went to see the professor during his office hours. She sought tutoring. She passed the class.

Last December, Christina finished her course work and next started graduate fieldwork through the Bucks County Intermediate Unit. She has a caseload of 75 children — 50 at Heckman alone, where her supervisor is speech therapist Pat Mervine.

During her senior year of high school, Christina volunteered after school helping Mervine work with students who had speech and language difficulties. The experience cemented her career path.

Mervine kept in touch with Christina while she was at college. When Christina asked to do her clinical experience with her, Mervine didn't hesitate.

Christina is among the best student clinicians she has worked with, Mervine says. Her professionalism is impeccable. She arrives at Heckman an hour early, so she has time to catch up with the piles of paperwork that come with the job.

"She basically comes in with the custodian," Mervine says.

Christina creates games that assess students' speech and language progress, as well as keep the kids interested. Interest is critical when the goal is completing 50 to 70 sound drills each session.

The time she spent on the other side of the therapy table as a child will benefit Christina as a speech therapist, Mervine believes.

The kids she has worked with now have mild to moderate problems. But she could be assigned students with profound disabilities, where she'll face parents who may be having trouble dealing with their child's challenges.

"She will bring something a little different because she has been there," Mervine says. "She certainly knows what to expect."

Sometimes, her students ask what happened to her arm.

She used to just change the subject. But lately, she'll tell them her arm was injured during a surgery and the brace helps it, much like when people wear glasses so they can see better.

QUALITY OF LIFE

Last week, Christina started an internship at St. Mary Medical Center in Middletown where her supervisor is Loretta Dugan, a senior speech pathologist who was part of the hospital team that worked with Christina for two years after her surgery.

As a child, her speech trouble involved higher-level cognitive functions: memory, attention span and her ability to focus on a task, Dugan says.

"In an 8-year-old, that is hard on a good day," she says. "Today, she will say to me, "I know I was tough,' and I'll say, "I know. That is what got you through.' "

At St. Mary, Christina will work directly with stroke patients, traumatic brain injuries, oral cancer patients or people who have trouble eating and swallowing, Dugan says. She'll diagnose and treat communication disorders and educate patients and their families about treatment options.

The relationship between speech therapist and patient is an intimate one, Dugan says. She also believes Christina will offer patients compassion, empathy and firsthand knowledge.

"She'll bring that experience and more," Dugan says.

Specifically, she brings hope where people may feel there is none.

Just look at her, Dugan says: "She is the possibility."

Christine isn't the first hemispherectomy patient who has graduated college, but she likely is the first to earn a master's degree, according to Dr. Patti Vining, a professor of neurology in pediatrics at the Johns Hopkins Children's Center, who is familiar with Christina's case.

Less than a half dozen former Hopkins patients have achieved it among the 130 who've undergone the radical surgery there, Vining says.

"A small handful, but a good handful," she adds.

As part of a quality-of-life study, Hopkins researchers are following hemispherectomy patients as they move into adulthood, Vining says, and the initial data could be ready next year.

"We need to understand what the full outcome is," she says. "Are they getting advanced degrees? Are they marrying and having children? If others aren't doing well, what help do they need?"

Lynne Catarro still gets calls from parents facing the same scary choice that she did. The questions families have don't change. Mostly, they want to know how Christina has thrived.

Christina was lucky, Lynne says. Lucky her parents are educators who know how the system and education laws work; lucky she was right-handed; lucky her grandparents knew how to research therapies and treatment options; lucky she had a community that supported the family.

Most importantly, she was lucky that people around her refused to let her give up. They pushed her. 

They encouraged her. They let her fail, so she'd know the feeling of overcoming a challenge.

"You can't say no, even if in the front of your mind you're thinking, "The doctor says it can't happen,' " 

Lynne says. "Being submissive was never a help."

On a recent morning, Lynne walked past her daughter's room and saw the dresser and bed had been rearranged.

How did you do that?

Christina replied using her hips and thigh for leverage.

Other times, Lynne passes the bedroom and sees Christina cutting pieces of paper for the sound 

games that she uses — scissors in one hand, the paper gripped between her toes.

How much faster and easier would it be if Lynne just cut it out for her?

But Christina won't bite, even when Lynne offers.

"I remember her filling out the application for college. Now, she is filling out her application for a job. 

She is exactly where she is supposed to be in life," Lynne says. "Who knew what you could live without?"

SO BE IT

Christina understands that she will never understand why her life unfolded the way it has. Some things people aren't meant to know. So be it.

Life isn't easy for most people. Just do your best with what you have.

Sometimes, she wonders what her life would have been if she never got sick. But then her mom wouldn't have taken a leave of absence from her teaching job and they never would have met Albert.

Besides, right now, her life is pretty awesome.

She is walking better since she recently started using a wireless, electronic stimulator device on her leg that treats people with a condition called foot drop, which happens when a person can't lift the front part of the foot.

Besides collecting two college degrees, she received one of the four prestigious speech and language pathology awards given to Misericordia graduates. She passed the state teachers' certification. She is job hunting.

There is nothing she can't do.

Except, she says, scratch mosquito bites on her right arm.

Jo Ciavaglia can be reached at 215 949-4181 or jciavaglia@phillyBurbs.com or twitter: @jociavaglia