Self-sufficient and going strong at 77, with spina bifida

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Two years ago, Bob Vosburg rolled into the wheelchair lab at Pitt's School of Health and Rehabilitation Sciences to see about a new seat cushion. While he was there, he gained an important piece of information that had eluded him for most of his 76 years.

A doctor in the clinic told him the name of the condition that had caused his lifelong disability -- spina bifida -- and that he might be one of the oldest people in the region with the condition.

"For the first time, I knew what I had," said Mr. Vosburg of New Castle.

Of course, he always wondered what exactly had caused the weakness in his legs. When he was born in 1930, doctors told his parents that his difficult breech birth injured the nerves in his spine.

"Those were the dark ages of medicine," he said.

Despite not knowing the name of his condition, he learned how to manage it during an era when it was far more difficult to do so than it is today. Now 77, Mr. Vosburg is a rarity: He can describe what it was like to be a child with a disability in those days and what it's like to age with a disability today.

Babies born with serious problems in the 1930s often were not expected to live, let alone reach old age. Doctors told Marion and Robert Vosburg of Scranton that their newborn son might live about five days. If he survived, they said, he would need a wheelchair his whole life.

Fortunately, leg braces, crutches or a cane have provided sufficient support for most of Mr. Vosburg's life. He didn't opt for a wheelchair until he reached his 50s and, by his description, "ran out of gas."

"My parents would not accept what the doctors told them as 'the end,' " he said. They were just "ordinary people," he said, but they sought out the best resources they could find. Their seeking led them to Pittsburgh, to what was then called the Industrial Home for Crippled Children (now The Children's Institute). They enrolled their son as a residential student when he was just 4 years old.

The "Home," as he still calls it, was founded in 1902 to care for and educate children with physical disabilities. By the time Mr. Vosburg arrived from Scranton in 1934, the Squirrel Hill facility had served hundreds of children and was about to open a new addition with a therapeutic pool.

His parents regarded the opportunity as a blessing, but it was also a sacrifice for them. As an office worker for a coal company and housewife, they certainly could not have afforded to pay tuition, said Mr. Vosburg, who assumes that his tuition was paid for by charity. In order to bring the family closer together, his father took a job with a coal company in Bobtown, Greene County, near the West Virginia border -- 80 miles away from Pittsburgh rather than 300.

Mr. Vosburg lived at the Home until he was 9. Memories from that period abound. The superintendent, Miss Frances E. Shirley, still looms large, as do the housemothers assigned to the separate boys' and girls' units. The frustration of having to eat everything put on one's plate. Piano lessons. Annual trips to Kennywood, which provided photo ops for the Pittsburgh newspapers.

"I knew every nook and cranny of the building," he recalled. Yet, when he attended a reunion in the early 1970s following a major renovation of the facility, very little was familiar. "I toured the whole building and did not see one thing I recognized." He searched in vain for the long flight of stairs that occupied an important place in his memory. "Where were they?"

He was tickled when a woman he didn't remember eagerly approached him at the reunion, "You're Bobby Vosburg," she exclaimed. "Hey, you were such a little guy."

The missing staircase could well be a metaphor for the steps "Bobby" made at the home. Perhaps ironically, the biggest changes in him did not involve his disability, but his attitude toward it.

"I walked into the home with two braces and a cane, and I left five years later with two braces and a cane," he emphasized. His disability had not changed, but he was a different child when he left the home, and not just because he was older.

"A seed was planted there," he said. "Very subtly, the people there made you self-sufficient. That's the biggest thing they did. In your own mind, you felt that you were not different from anyone else. They sent you back into the real world. I went back and didn't miss a beat."

He remembers blending in with his classmates in regular school when the family returned to Scranton. "I became a leader of kids I hung around with. I was treated no differently [than other kids] and wouldn't have had it any other way."

He graduated from high school and then Penn State, where he often trekked with his cane from one end of the campus to the other. Not long after college, he joined the New Castle News as sports editor and later became managing editor. He retired from a 40-year career with the paper in 1994. He met his wife, Phyllis, in New Castle. They have an adult daughter.

An auspicious meeting

The doctor Mr. Vosburg met at the wheelchair clinic two years ago was Brad Dicianno, a physical medicine specialist (also known as a physiatrist). The meeting was auspicious for both men. Mr. Vosburg learned that he could obtain services from UPMC's Adult Spina Bifida Clinic, which Dr. Dicianno heads. Dr. Dicianno gained a new patient who could teach him how people with spina bifida age.

Spina bifida, Latin for "split spine," is a birth defect in which the embryonic neural tube is not fully closed, resulting in an incompletely formed spinal cord. Individuals with the condition experience some degree of dysfunction in the spinal cord and the nerves associated with it. The most common locations of these problems are the lumbar and sacral areas of the spinal cord. In some individuals, spinal cord abnormalities are visible through a skin opening on the back.

Worldwide, spina bifida is one of the most common birth defects, affecting one to two live births per 1,000. In the United States, the rate is lower -- 7 out of 10,000 live births. In recent years, studies have shown that taking folic acid supplements prior to conception decreases the incidence of spina bifida by 75 percent.

UPMC's Adult Spina Bifida Clinic, which also treats adolescents, was established in 2003. It's one of five specialty clinics of this type in the nation and draws patients from Pennsylvania, Ohio and West Virginia.

The very existence of a spina bifida clinic for adults is a new development. Not so long ago, spina bifida was considered a pediatric illness, and patients would simply continue to see their pediatric physicians into adulthood. The average life span for an individual with the condition was 30 to 40 years, with renal failure as the most typical cause of death.

Because of improved medical care, especially urologic management, people with spina bifida are living long lives and changing the way medical professionals think about the condition, said Dr. Dicianno. Older people with spina bifida are now experiencing many of the same problems as the rest of the aging population -- heart disease, obesity, certain cancers. Bob Vosburg, in fact, has been treated for prostate cancer.

Dr. Dicianno said that Mr. Vosburg, his oldest patient, has taught him about the complications that occur with aging. "He's given me an appreciation of my own specialty, how we can coordinate care and make sure that everyone communicates."

Looking back

When Bob Vosburg looks back on his childhood, he sees two key influences -- the home in Squirrel Hill where he was taught to believe in himself, and his parents, who went to great lengths to make sure he received the best possible treatment.

"I have no idea how my life would have turned out otherwise," he said. "Maybe just the same, but I have to believe that it had an effect.

"Back then, many kids like me were stuck in a closet. I had parents who didn't want to stick me in a closet."

What's better now, he says, is the medical advances and technology that allow doctors to look inside and see what's in there and how to treat it. "But sometimes they can't do a whole lot more, even though they can name it."

The Adult Spina Bifida Clinic is at UPMC South Side Hospital Heart Station. For information, call 877-647-3438.

Correction/Clarification: (Published Feb. 21, 2008) The subject of this feature on living with spina bifida, Bob Vosburg, is 77 years old. A headline that originally accompanied this story in Feb. 20, 2008 editions was incorrect.

Tina Calabro writes on disability issues. Her e-mail address is tina.calabro@ .


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