Social Cause: A Life in Motion

10 Oct 2011, Posted by admin in Packages, No Comments.

Social Cause: A Life in Motion


A Kentucky woman spreads the word about shaken baby syndrome, which nearly took the life of her 3-year-old granddaughter.

Story by Hannah McCartney; photos and slideshow by Lauren Purkey

Hillary Rose Jarboe coos at the cold, wet feeling of red acrylic paint dripping off of her fingers and onto her desk in an activity room at the Redwood Rehab Center in Ft. Mitchell, Ky. The paint pools and smears on the paper that covers her desk, which is the only one in the room with an official nametag and a seat affixed to the table.  And art time is the only time of day the therapeutic gloves come off of Hillary’s busy 3-year-old hands; she can wiggle them as she pleases. Her fingers wander to her mouth and trail across her forehead and cheeks, leaving red streaks. She rubs her fingers on the paper — not to create art, like the other children, but to feel something. Anything.

Hillary is also the only child in the room wearing a helmet; it’s covered with Disney princess stickers. But unlike other young girls who love princesses, she can’t sing the words to Aladdin’s “A Whole New World” and she doesn’t have her own personal worn-down set of plastic princess heels. In fact, she doesn’t even have a favorite toy.

What she does have is a permanent bump on her skull, and three therapists she’s been working with for two years. She’s only been walking for a few months, and her speech is limited to coos, laughter and giggles. Her gloves help straighten her bent fingers so she can eventually learn to use pens, pencils, paintbrushes, silverware — any tool or utensil that requires dexterity, which the rest of us take for granted. Without them, Hillary’s little fingers become crumpled, turning her hands into two scrunched wads of paper. She still needs help feeding herself.

When Hillary was seven months old, her mother’s boyfriend shook her, causing severe brain trauma. Now she suffers from cerebral palsy and retinal hemorrhage. Although her condition is commonly referred to as shaken baby syndrome, the proper term is pediatric abusive head trauma — a clarification made in 2005 by the American Academy of Pediatrics. “’Syndrome’ makes it sound like an accident,” says Sandra Jarboe, Hillary’s grandmother and legal guardian. “The term ‘pediatric abusive head trauma’ makes it sound more like a violent form of abuse. Shaken baby syndrome is no accident.”

The damage to the brain is devastating, Hillary’s doctor says. Imagine a seven-month-old baby in the backseat of a car going 60 mph when the vehicle veers from the road and crashes into a tree. The baby dies on impact. Another seven-month-old is shaken by a frustrated adult in a moment of lapsed patience; her brain is jumbled around the inside of her skull and she survives — but just barely. The effect on the brain is the same, but the shaken baby — if she lives, and many do not — battles for her life.

It’s easy to forget this when you see Hillary smiling, giggling and joyfully wandering around in circles in her grandparents’ Northern Kentucky home — a dabble of drool, a crooked, toothy smile and a certainty in her step. She’ll lie on the floor, using the muscles in her legs to move her body around; it makes her feel something.  She wiggles herself across the room, keeping that same blank, wide-eyed stare.

Hillary curls up on a mat at her daycare center. This is often the position that she chooses to sleep in at night.

To her grandparents — Sandra, 46, and Ted Frohlich, 48 — Hillary is the miracle child.  Doctors predicted she would be a vegetable, and warned that her brain could stop at any time. Even now, two years later, they’re still giving the Jarboes the same warning: “Any time.” Sandra and Ted say they take life day by day with Hillary. “When people ask me about Hillary’s future, I honestly can never give an answer,” Sandra says. “Anything could happen.”

Sandra and Ted became Hillary’s legal guardians four days before her first birthday, after she’d spent almost five months in and out of hospitals and in medically fragile foster care (foster care for special-needs children who require 24-hour attention and presence of a doctor).

And boy, is Hillary a handful. She requires near constant attention, and unlike most 3-year-olds, she can’t be silenced with cartoons or a new Barbie doll. Luckily, though, she rebounds quickly. “She goes to bed and wakes up with a smile on her face, no matter what kind of day she’s had,” her grandmother says. “Most kids with severe brain trauma aren’t like that. They’re usually severely agitated.”

Five days a week, Sandra takes Hillary to the Redwood Rehabilitation Center’s daycare, where both disabled and “normal” kids play together, make art together and roll around on the floor together, if the mood strikes them so. The fact that Redwood is integrated is one of the main reasons Sandra chose to take Hillary there. “Ted and I are trying to give her a normal life so she doesn’t feel out of place, and still be able to get her the care, equipment and therapy she needs,” Sandra says. And despite the helmet and special desk, Hillary seems to fit in just fine.

The art of a 3-year-old’s power of manipulation, it appears, has not been lost on Hillary: “If I tell her she can’t do something, she’ll look at me and smile and try to give me a kiss,” says Danielle Lauer, the lead caregiver in the center’s Toddlers Advancing to Preschool (TAP) room, who has worked with Hillary since she first came to Redwood in June 2009. In their nearly two years together, Lauer has learned how to predict Hillary’s reactions and cope with her sometimes persuasive or stubborn temper.

During free playtime, Hillary and her classmates may roam about the classroom and gallivant as they please. But while the other children chase each other or dump out toy buckets, Hillary typically keeps to herself. Other children occasionally grab her hand or hug her, but Lauer says she’s never seen Hillary initiate interaction.

Physical TherapyWhen Sandra picks up Hillary from daycare, she brings her home to a room chock full of stuffed animals — it’s an explosion of pink that any 3-year-old girl would envy. Surprisingly, not much in the Jarboe home is “Hillary-proof.” It doesn’t have to be, Sandra says. Hillary can safely crawl up and down stairs, and knows where the furniture and chairs are. And although Hillary’s doctors and grandparents don’t fully know the quality of her vision, they believe she can see outlines of objects and faces. It’s been enough for her to get by.

Her grandparents have learned to get by, too. Sandra, a home health aide, works with the disabled and elderly; her husband works the night shift in maintenance at a local plastics production plant, and often trudges through 8 p.m. to 8 a.m. shifts. That means there’s very little “family time.” Ted sleeps when Hillary and Sandra are up and about. “Ted and I actually had a life before Hillary came home,” Sandra says with a sigh. “I can’t remember the last time we went out, just the two of us. It just doesn’t happen.”

Sandra and Ted don’t hire babysitters because they don’t trust them. And although Hillary’s mother is still in the picture, she rarely visits; Sandra worries she’s still involved with the man who shook Hillary — the man sitting in jail, waiting for parole. He still insists he never shook her.

Sandra never trusted him; she even told an employee with Every Child Succeeds, a child-development program for first-time parents, to be on her guard. “’Please, watch him,’” she’d said. “He’s going to hurt one of them.’” Although she had her suspicions, Sandra never imagined those words would come true. But even now, two years later, the phone conversation she had with her daughter on that fateful day still haunts her. “I’ll never forget: Hillary had the phone up to her ear and I’d go, ‘Hillary, it’s Mammaw,’ and she’d always make a cooing noise. That was her little thing with me and when she did, I knew she was OK,” Sandra recalls. “I asked her mom if she was going to bring Hillary over that day and she said,  ‘Mom, he’s got to learn how to take care of her if we’re going to be a family.’”

But it was the phone call that came later that night, around 10 p.m., that changed everything. “Mom, I need you to come to the hospital,” Sandra’s daughter said. “Hillary’s in a bad way.”

In the years since, Sandra’s crusade to save Hillary has evolved from a personal to a public one: She speaks at local high schools and public venues focused on brain trauma and child abuse about the dangers of shaken baby syndrome, hoping to prevent the kind of judgment lapse that forever changed Hillary’s fate. “Hillary needs my voice,” Sandra says. “Survivors need my voice.”

Sandra confesses that she is far from being computer-savvy, but her laptop gives her that voice. She’s created a detailed PowerPoint presentation that is packed with information about shaken baby syndrome. It’s a virtual scrapbook, too, chronicling the life of the brown-haired little girl with the curled fingers through a timeline of pictures, backed by the accompaniment of syrupy sweet pop songs. Hillary’s personal favorite? “The Climb,” by Miley Cyrus. The 3-year-old couldn’t possibly fathom the lyrics, but they couldn’t be more apt in her life: “The struggles I’m facing / The chances I’m taking / Sometimes might knock me down / But, no, I’m not breaking…. Ain’t about how fast I get there / Ain’t about what’s waiting on the other side / It’s the climb.”

As if on cue, Hillary perks up as Sandra plays the PowerPoint presentation on her home TV. The Miley Cyrus song begins to play, and it’s one of the few times Hillary has been completely quiet and still. She puts her hands on the TV screen, smiling and listening intently. Sandra smiles, too, like any proud grandmother would. “Nobody can tell me she doesn’t know that’s her song,” Sandra says. “She knows.”

It is, indeed, a climb.

Even when lying down at home, Hillary is constantly in motion.

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