Sunday, 26 December 2010

SBS: Oregon: DiNucci Family copes with anguish, lifetime of disability

Mara Stine
(news photo)  Jim Clark / The Gresham Outlook

Ashley DiNucci was car shopping with her father when she saw a chubby baby gleefully biting its toes.
In this moment, she truly accepted that her own baby, also just a few months old, would never reach such a milestone.
At just 6 weeks old, Rockell DiNucci was shaken by her father, Brandon DiNucci, in September 2007. While being raced to the hospital in an ambulance, she stopped breathing a block from the family’s Gresham home.
Doctors at Doernbecher Children’s Hospital said the baby was not viable. She’d never breathe, eat, talk or walk unassisted. Due to the extreme swelling of her brain and bleeding, most of her injured brain had turned to spinal fluid, or “melted away,” as doctors described it.
Neurologists likened it to a leaf that dries up.
If you hold it by the stem and blow with enough force, the leaf is stripped away while the stem remains.
In Rockell’s case, her brain stem in the back of her brain remained intact. But the rest disappeared.

Lucky to have survived

Although there is no official central registry of shaken baby statistics in the United States, an estimated 1,200 to 1,400 babies die or are injured by being shaken every year, according to the National Center on Shaken Baby Syndrome.

About a quarter of those children die, while most of the others sustain permanent brain damage.
This spring, Time magazine reported a significant increase in cases of Shaken Baby Syndrome since the nation’s recession began.
Researchers, led by a Pittsburgh child-abuse expert, analyzed data on 512 cases of head trauma at children’s hospitals in Pittsburgh, Cincinnati and Columbus, Ohio, and Seattle.
The number of cases had increased to 9.3 a month as of Dec. 1, 2007, compared with six each month prior to that date. The rate had remained steady since 2004.
Experts say the increase correlates with the recession and resulting financial stress parents may be under.
Rockell’s grandfather, Jim Kaufer, doesn’t believe the economy was a factor in his granddaughter’s abuse. Brandon DiNucci, 20, pleaded guilty to first-degree attempted assault and was sentenced to five years in prison in March 2008. He is scheduled for release in 18 months, after which he can’t see Rockell for a year.
Jim says DiNucci doesn’t have an anger problem.
Instead, he said the man he considers a “gentle, soft beautiful kid,” was so eager to prove what a good parent he was that he took on too much and snapped.
His drug use also was a factor, Jim said.

Miraculous recovery

Despite Rockell’s grave prognosis, she stunned doctors by breathing and eating on her own.

Her family rejoiced. Rockell’s grandparents dubbed her a miracle baby and were convinced she’d make a full recovery. “When they’re that young, you hear them make a sound and you say, ‘See, they’re cooing. They’re going to be fine,’ ” Jim said.
At first, Ashley also shared in their optimism. But as Rockell grew older, reality set in: Rockell would never grab her toes, let alone suck them, like that baby in the car dealership.
Rockell, now 3, has had five brain surgeries. Her right eye is a prosthetic and doctors think she can only detect light with her left eye. She has about 20 small seizures a day. She also can’t stand or sit on her own.
“Things have been much more of a challenge than we ever imagined,” Jim said. To help Ashley care for her, Lisa, Rockell’s grandmother, quit her job with Food Services of America, where Jim also works as a sales representative.
Rockell can roll from her belly onto her back, but otherwise can’t really move. As a result, her mother and grandparents spend a lot of time holding her, almost like a rag doll.
To prevent her hips from dislocating, Rockell spends a few hours a day strapped to a “stander” that her mother built for her.
Rockell sees a physical therapist twice a week, but insurance only covers 24 visits a year. That leaves 80 uncovered visits, totaling $16,000 a year. Insurance also won’t pay for the $10,000 specialized walker she needs if she’ll ever be able to walk. She also needs a special chair to help her posture, but insurance won’t pay for that either.
Jim recently partnered with a local coffee roasting company that has agreed to sell a few select blends as a fundraiser for Rockell’s ongoing medical care.
Because of the long distance between Rockell’s physical therapist in Milwaukie, the family has moved out of its Gresham home – where they lived for 26 years – and into a house in Happy Valley. It’s just 10 minutes from Rockell’s physical therapist, who is confident the girl will walk someday.
The mere mention of it brings a smile to Lisa’s face. Ashley, however, is much more guarded with her optimism.
“It’s too depressing to live for the next day thinking she’s going to get better, only to see it not happen,” she said.
“We’re not giving up, but we’re realistic,” Lisa said. “You just do everything you can. You can’t ever give up.”
After all, the girl is absolutely adorable. She loves to be held. She has fantastic hearing.
“Bionic,” Jim calls it. And she’s got spunk – she pretends to fall asleep if she doesn’t like what’s on her plate.
“She knows happiness. She loves music. There are times when she breaks into a smile and you know she’s experiencing joy,” Jim said. “Will she ever be like Kaikoa?” he asked, gesturing toward Rockell’s 2-year-old cousin playing with her on the floor. “God only knows. She’s going to be whatever she’s going to be, and we love her for every inch that she’s got.”

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