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Living with brittle bone disease a daily challenge

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By Barbara Rutledge

She heard it when it happened. Waltavous Massey, 21 months old, was playing on the bed when he fell off. When she heard the crack, Waltavous’ mother, Alexis Massey, wanted to run. Waltavous’s father, Walter Massey, picked him up.

“All I could think about was that my baby had broken his neck and his bone was sticking out,” Alexis said.

But it wasn’t his neck. It was his leg.

The Masseys will likely face similar incidents for years to come. That’s because Waltavous, like his father, has osteogenesis imperfecta (OI), also known as brittle bone disease.

Alexis is protective of her two children, Waltavous and Wyquan, 7.

Either Alexis’ mother or mother-in-law watch Waltavous while she and Walter are at work. She doesn’t feel comfortable putting him in the care of someone not familiar with OI. Even while she’s at work Alexis worries about Waltavous having an accident.

“It’s on my mind all the time,” she said.

So it came as a shock when the Department of Social Services and law enforcement were called to the hospital’s emergency room where the Masseys had taken Waltavous for treatment after his fall.

Medical personnel were concerned because of the nature of the toddler’s injuries.

As she told me her story I listened as I do with everyone who calls with issues, concerns and complaints. During these conservations I size up what we can and can’t do as a newspaper. Are the concerns newsworthy or are they personal feuds with a business or an individual?

I tried to be sympathetic yet objective. She was upset – upset because someone would think that she would hurt her child. I told her that from a third-person point of view that I understand her concern, but at the same time her son’s welfare was the top priority.

Several months ago we published a story about a 1-month-old girl in intensive care with bleeding on the brain. Officials attributed the injury to shaken baby syndrome.

Hospital personnel have both a medical and legal responsibility to report suspicious injuries. Waltavous’ leg fracture fell into that category.

Ginger Wirth, clinical director of Springs Memorial Hospital, said there is a medical obligation to report suspicious injuries.

“Anyone in health care is mandated to protect the patient – be it a child or an adult,” Wirth said. “There’s no vindictiveness, no malice. It’s up to DSS to determine the validity of the claim.”

Janice Chapman, county director for the Lancaster County Department of Social Services, could not verify nor if deny if there was a complaint. But Chapman echoed Wirth’s statement.

“We have to follow the law,” Chapman said. “All the reporter (person making claim) has to do is suspect child abuse or neglect and report in good faith. It doesn’t mean they are always true. But we have to go through the same format with each allegation.”

DSS collects information and determines if there is enough evidence to prove the complaint. Chapman said out of all the complaints, 32 percent are found to be true abuse or neglect cases. An investigation takes about 45 days.

Massey said she is supplying Waltavous’ doctor records and other requested documents.

“I had to be escorted out of the hospital because I was so upset,” she said. “I was in a daze. I couldn’t believe I was accused of hurting my child.”

I felt for this young mother. And I know it was a dilemma for everyone involved.

Even OI physicians and researchers say that OI Type 1 injuries are often confused with child abuse. Waltavous was diagnosed with OI Type 1 at six weeks old.

OI is caused by a genetic defect that affects the body’s ability to make strong bones, according to the Osteogenesis Imperfecta Foundation. A lack of collagen production causes fragile bones that break easily.

The OI Foundation estimates between 20,000 and 50,000 people in the United State have the rare disease.

The Masseys have had to educate themselves about the disease. Wyquan doesn’t have it. Alexis is pregnant and knows there is a possibility this child, like his father and brother, will also have this rare disease.

Walter, who works for the city of Lancaster, has had to deal with OI for most of his life.

Alexis said her 25-year-old husband has had numerous broken bones and has pins in his knees.

Having to contend with Waltavous’ disease and his preponderance to fractures is frustrating for the Masseys.

It is also deja vu.

“It’s like we are reliving his (Walter’s) nightmare,” she said.

It is hard not to be sympathetic to the Masseys. And health officials have a job to do. But they all have the same goal.

Responsible parents plus responsible health-care folks equal a protected child.

That’s an equation you can’t argue with.