Posted: Sunday, February 14, 2016
Twenty years ago, 8-year-old Christina Santhouse woke up in a Maryland hospital and faced her first day with only half a brain.
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| Vince Paravecchia and wife Christina |
During those early weeks, her progress was one day at a time and one step at a time. Literally.
Would the seizures that pounded her body every 10 minutes stop for good? Would she ever be able to walk? Would she be able to dress herself?
Hopes and goals were added as her recovery progressed.
Would she be able to return to Immaculate Conception School in Bristol Township? Could she earn a high school diploma?
Milestones like going to college, having a career and marrying and becoming a mother were low on the family's wish list because the possibilities seemed so remote.
Two decades later, Christina holds bachelor's and master's degrees. She's a speech and language pathologist, working with kids who need extra encouragement to find their voices. And nearly 18 months ago, she added another milestone to the list -- one that came with a new last name.
Christina, who's now 28, married Vince Paravecchia, now 32, following a whirlwind romance that started when they met in a Bible study group.
On the surface, they are complete opposites. She's a blue-eyed blonde; he has dark eyes and brown hair. She's all about routine and structure; he's laid back and spontaneous. She's an only child. He has four siblings. She's usually an hour early for everything; he's consistently 20 minutes late.
But those differences are minor, the couple said. Their strong religious faith and sense of family are what play the biggest part in their love story.
“From the very moment I met Vince, I felt like it was divine intervention,” Christina said. “God led me to the Bible group. He led me to Vince, and he is continuing to lead our lives.”
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| Christina age 8 |
Scientists don’t know what causes Rasmussen’s encephalitis, the rare inflammatory disease that Christina had. It most frequently occurs in children under age 10, destroying the brain, causing severe seizures, loss of motor skills and speech, paralysis and eventually, death.
Within months after she was diagnosed, Christina experienced more than 100 violent seizures a day. Medications didn’t work. The seizures left her in a wheelchair as she grew weaker.
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| Christina the day before her brain surgery |
Lynne Santhouse, a single mom at the time, said she felt there was no choice. She would do anything to save her child.
The 14-hour surgery was performed Feb. 13, 1996, by then pediatric neurosurgeon — and current Republican presidential candidate — Dr. Ben Carson at Johns Hopkins Children's Center in Baltimore.
The surgery is so risky it’s almost never performed today, said neurologist Dr. Christopher Skidmore, who's Christina's current doctor. Skidmore, a physician at Thomas Jefferson University Hospital in Philadelphia, said Christina is the first patient he has seen with an anatomic hemispherectomy.
While long-term medical studies have found the last-resort surgery is successful in stopping or reducing seizures, it does result in permanent changes.
Hemispherectomy patients experience at least partial paralysis. Christina's left arm is paralyzed, she has no peripheral vision in her left eye, and her left leg is partially paralyzed. Because the right side of the brain also controls skills such as problem-solving and communication, Christina experienced speech problems after the surgery.
Years of painful, frustrating physical therapy followed, to retrain her body, help her relearn everyday tasks and rebuild her life. Her family was beside her for every step, stumble and success.
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| Christina age 13 |
“I lived for the moment,” Christina's mother said. “When you go through something that tragic, you go day to day.”
Stepfather Albert Catarro, who Christina calls Pops, had dated Lynne for three years when Christina became sick, a situation he said cemented their father-daughter bond.
Saving Christina was the sole focus for him and Lynne and their large extended family, Albert said. They knew the surgery had high risks and unclear expectations, but anything beyond stopping the seizures was an extra blessing, he explained.
But the blessings never stopped. One by one, Christina hit her rehabilitation milestones -- and exceeded many of them.
She went back to school and took up bowling, which she excelled at. After graduating from high school with honors, she earned her bachelor’s and master’s degrees. For the last six years, she has worked for the Bucks County Intermediate Unit.
“She did it on her own,” Lynne said. “I do believe if it wasn’t for her personality, she wouldn’t be where she is today.”
Watching Christina never give up is what Albert said inspired him to finish his doctoral degree. “I've learned more from her than I can put into words. I couldn’t be prouder,” he said.
Not long after buying a home in Lower Makefield nearly four years ago, Christina saw a notice in her church’s Sunday bulletin for a weekly young adult Bible study group. She was told that group was disbanding, but she was directed to a thriving group that met weekly at St. Andrew Catholic Church in Newtown Township.
Christina said she was looking to get more involved with the church and expand her circle of friends. She wasn’t looking for a boyfriend. Truth is, she wondered if there was a guy out there who loved God as much as she did.
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| Vince and Christina |
Then Vince walked into her first meeting with the St. Andrew group.
Christina was immediately smitten by this man in the brown sweater. She spent the rest of that first meeting casually casting side glances and shy smiles his way.Vince noticed her, too. "I sure did," he said.
But for weeks after Christina joined the Bible study group, the two didn’t even exchange hellos.
Then, one day after she finished work at Lafayette Elementary School in Bristol Township, she walked past the gym. She peeked in and saw Vince, who runs an after-school program there in addition to working with troubled children in Morrisville. Too shy to say hello, Christina kept walking.
A few more weeks passed before they ran into each other in the school hall. This time, they exchanged hellos. Later that night, Christina messaged Vince on Facebook.
The next Monday, Vince encouraged her to join the rest of the Bible study group for a post-meeting powwow and the two ended up sitting next to each other.
Four months later, they went out together for the first time to a performance of “West Side Story” at William Tennent High School.
But this was no ordinary first date. Christina brought her parents, her grandmother, Mary Lou Tantum, and her uncle Joe’s family. After the play, they all had dinner together at a Warminster diner.
At the diner, Christina's grandmother said she realized Vince was someone special to Christina because of the attention he paid to the entire family as well as to her granddaughter. He even pulled the paper wrapper off Christina’s straw for her, Mary Lou recalled.
“He was that thoughtful," she said, adding that she thought at the time: "This is the real deal."
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| Christina and Vince on their Wedding Day |
The rest of the courtship was sonic quick. Christina and Vince went from strangers, to friends, to dating, to engaged, and then married within 19 months.
The speed surprised her mom. “I didn’t think anyone else could take care of her. I didn’t think she could do it without me,” Lynne said.
It wasn’t until months of knowing each other that Vince learned Christina was missing half her brain. He said he had no clue there was anything physically different about her.
“I seriously never noticed. I think that’s because it doesn’t define her to me,” Vince said, adding that he's glad Christina is the one who told him everything about the surgery and her recovery.
“It enhanced our love story,” Vince added. “Throughout my life, I never felt totally complete. Now I do. I think that whole mantra 'your wife is your better half' is true.”
Every once in a while, he'll try to zip his jacket one-handed to get an idea what Christina goes through every day because of her paralysis.
“I usually give up after a couple seconds,” he said. “I don’t know how she does it, quite frankly. It’s crazy. I’ll never understand how she does that. I’ll never understand how she does half the stuff she does with one hand.”
Christina’s neurologist said she's not only healthy for an adult hemispherectomy patient, but for any woman her age.
“She is on the far end of the 'doing amazing' scale,” he said. “She is doing outstanding. If you were ever to trying to convince a family considering the surgery it would almost be unfair to show Christina, because she has done so well.”
What's next for Christina? She'd like to have a baby.
“We’ll see if God blesses us, but for now, we’re just incredibly happy with our life together,” Christina said.
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| Christina is devoted to St.Theresa |
She and Vince said they're not worried about passing on Rasmussen’s encephalitis to the children they pray they’ll have together.
It’s an incredibly rare illness and it’s not hereditary. But if God gives them a child with special needs, so be it, the couple said.
“We’ll just love them unconditionally. Be their 'encourager' and support system until they can find their own wings, just like my mom did for me," Christina said.
“I feel the same way,” Vince added. “I don’t worry about that at all. We’ll deal.”
Twenty years after her surgery, Christina believes her illness was a blessing. She isn’t sure she'd be as compassionate and empathetic otherwise.
And while she doesn't know if people still think of her as the girl with half a brain, Christina believes what other people think isn't important. It's what she thinks about herself that matters.
“My life has surpassed all my wildest dreams. There are just blessings that are poured into my life and I would never trade my life for anything else,” she said. “I have an amazing life that is not defined by my brain.”
Jo Ciavaglia: 215-949-4181; email: jciavaglia@calkins.com; Twitter: @JoCiavaglia
