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A role model for kids with disabilities Spina bifida patient goes to medical school in hopes of helping children

  • Chicago Tribune
  • Published Tuesday, March 26, 2013, at 9:34 a.m.

— Born with a birth defect, Sarah Bauer made countless childhood visits to the spina bifida clinic for checkups.

She’d fidget in the waiting room filled with kids in wheelchairs, then undergo tests on her leg muscles and answer a battery of questions about her ability to walk.

Back then, the visits to Chicago’s Fullerton Avenue were mandatory. But recently she found herself in the office without an appointment – this time, dressed in a white lab coat with a stethoscope in her pocket and standing alongside doctors who used to treat her.

A fourth-year medical student, Bauer will graduate from Loyola University medical school in June. She says a part of her drive has been a desire to help children like herself.

“I was a kid who was scared in the waiting room, scared in the clinic, scared in the operating room,” says the 26-year-old, who walks with a limp so slight that it’s barely noticeable. “People comforted me. … I wanted to comfort others when I could.”

Bauer learned during Loyola’s Match Day ceremony recently that she will spend her residency at the Medical College of Wisconsin in Milwaukee. It was an important step in a long journey.

Born in February 1987 with a small, dimpled bump on her back, a tiny Bauer was referred to David McLone, a pediatric neurosurgeon. At an appointment 10 days later, McLone looked at the lump before telling her parents that their first-born child had spina bifida.

Spina bifida – which means “split spine” – is a defect that can cause neurological disorders and affects the body, sometimes leaving people paralyzed or restrained to wheelchairs and braces. It affects 166,000 people in the U.S., according to the Spina Bifida Association.

McLone explained the unfamiliar term by drawing a spinal cord with a lump on the flimsy piece of white paper that covered the exam table. Bauer’s mother, Susan, still has that sheet.

“I was scared out of my mind. I had no idea what this meant, no idea what to expect,” says her mother, 55. “I thought, ‘Is my daughter going to walk?’ ”

But Bauer, of Buffalo Grove, Ill., was lucky in one sense – she had a milder form of the disorder, and McLone had previously operated on at least 50 others with the same kind of spina bifida.

He knew the little green-eyed girl had every chance of leading a normal life if he removed the scar tissue wrapped around her spinal cord. So she underwent surgery at 5 weeks old and grew up like any regular kid, playing basketball, volleyball and softball.

Then, around the time Bauer turned 12, she started walking differently. She tripped over her left foot and dragged it, her mother said.

Other problems popped up, too. She once stepped on a piece of glass in the kitchen, but didn’t feel the sharp shard in her foot. Another time, she broke her big toe, but only noticed it when it turned black and blue.

McLone and other doctors broke the news that Bauer needed another surgery, which could risk making things worse. A nervous Bauer peppered them with questions.

“She was very upset. She cried. Who would want to look forward to surgery?” her mother says.

After the second operation, doctors had Bauer lie flat on her stomach for five days and instructed her to stay at home for two weeks. Then 13, she discovered she could no longer run or compete like she once did. Her athletic career dwindled. “I just tried to find something else to do,” she says.

A third surgery to fix her foot in high school helped her walk better, but also meant she had to wear a big green plastic cast below the knee and then a white brace for six months.

In college, when classes were held on the other end of the University of Illinois at Urbana-Champaign campus, Bauer relied on the bus. She knew the schedule by heart. If she and friends stood for a long time, she sometimes sat down and took a break.

On days when the disorder reared its ugly head, a young Bauer sometimes cried and blamed her spina bifida. Her mother gave her a few minutes to let the tears flow.

“I always acknowledged that it’s OK to cry, it really is OK to cry, but you can’t let it stop you,” her mother says. “You’ve got those couple of minutes to feel sorry for yourself, and then you’ve got to move on.”

Science – specifically biology – became a passion when she could no longer play sports. Part of her curiosity stemmed from her own experiences. Doctors like McLone also had a big influence.

Once a year, Bauer made an all-day visit to the spina bifida clinic at Children’s Memorial Hospital, now Ann & Robert H. Lurie Children’s Hospital of Chicago.

When she looked around the waiting room, she saw other children diagnosed with spina bifida who needed help walking. Often, she was the only one who could stand on her own. She wondered: How did she get so lucky?

Inside the exam room, some of her doctors were all business, rattling off a list of questions to her parents, hardly stopping to look at the little girl in front of them. Others looked Bauer directly in the eyes as they thoughtfully addressed her questions. That interaction made her feel important.

A molecular and cellular biology major, Bauer initially hesitated about applying to medical school, thinking her physical health might regress again. But then she talked to McLone, who pointed to a woman with spina bifida who chairs the University of Michigan’s Department of Neurosurgery.

“That gave me some good encouragement,” she says. “He definitely showed me that that was not a good reason to not pursue medicine.”

Since starting medical school, Bauer has twice shadowed McLone, 75, in the spina bifida clinic. He says the future doctor is a role model for children with disabilities and can easily relate to them because of her background.

“I’m very proud of her,” says McLone. “She did this on her own. I had very little to do with the fact that she stuck to it.”

Shortly after the recent ceremony, Bauer hugged her boyfriend, who will be working at the same Milwaukee hospital. Her family stood by as her mother struggled to hold in tears.

“Could I have ever dreamed this? No,” her mother says, recalling the ups and downs of the last 26 years. “My daughter. The doctor.”

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