Pediatric Neurosurgery

Caitlin's fierce drive takes on life's obstacles

Two people talking while seated

Caitlin Tobin has been blessed in countless ways perhaps no more so than with an uncanny ability to knock down any obstacle in her way.

To be sure, Caitlin is incredibly charming and poised, but her drive and relentless determination are unmistakable. So is her constant concern for others.

She might be small 4-foot-3, to be exact but she is mighty. Most people simply think she is a little person and that’s just fine with Caitlin. Behind the “curtain” however, lies a complex medical history that is known only to family and a few close friends.

“I don’t talk much about it because I want people to know me for me not my disability, surgeries or hospital stays,” she said.

What puts a big smile on Caitlin’s face is anything relating to education not only her own, which includes a looming graduation from Cornell College (Iowa) with majors in English Literature and American History but the need to treat schooling as a right for all children, especially those with disabilities.

Slated to begin graduate school this fall, Caitlin hopes to earn a Master of Library Science and ultimately a Ph.D. in children’s literature. Having spent so much time as a child healing, she occupied herself by reading constantly. The library was kind of her nearby Disney World.

“That’s where I could just let myself be me,” she said. “I hate to see libraries being de-funded because every kid needs a space like that, especially those who, like me, couldn’t do a lot of other things.”

Something was wrong at birth

Without a hint of a problem during her mother's pregnancy, Caitlin’s long healthcare story began at birth, when something clearly was wrong with her legs. “They didn’t look normal and would not move at all,” said Caitlin’s mother, Aimee Tobin of Madison.

After their baby was whisked away for batteries of scans, X-rays and tests, Aimee, her husband Dave and Caitlin soon became “frequent fliers” at American Family Children’s Hospital and its predecessor, UW Children’s Hospital.

“Caitlin has a rare combination of spinal deformities known as spina bifida occulta with spondyloptosis,” said Bermans Iskandar, MD, a UW Health pediatric neurosurgeon who has known Caitlin since birth.

When Caitlin was just 5 weeks old, Dr. Iskandar performed a complex lumbar fusion operation on Caitlin, which included untethering her spinal cord. Her recovery was lengthy and included support from a ventilator for 11 days. To ensure proper healing, she wore a cast that spanned from her armpits to her toes.

“Since Caitlin was so small and her bone so immature, we had to use suture material instead of metal to hold her bone together,” Dr. Iskandar said. “I was convinced we would have to go back and operate again months or years later, but thankfully this was not the case.”

Many other pediatric specialists soon entered the Tobins’ world, including orthopedic surgeons, endocrinologists, urologists and rehabilitation specialists.

At one point, the Tobins were told it was unlikely Caitlin would ever move her legs. Her cognitive abilities were not impacted, but they didn’t yet know this for sure when she was a baby.

“When Caitlin was 2, Dr. Iskandar told us they knew about 80 percent of what was wrong with Caitlin, but the other 20 percent would consist of surprises,” Aimee said.

Caitlin apparently took Dr. Iskandar’s words to heart in the best sense, because she has defied the odds repeatedly usually making her parents extremely proud, but occasionally a little peeved by her stubbornness.

A stubborn streak helped her defy the odds

With the help of a walker, Caitlin took her first steps around age 2½. By age 5, she ditched the walker and crutches except for longer distances. To improve her mobility, Caitlin underwent several hip, leg and foot surgeries by the time she turned 8.

“The first one I remember was a hip surgery in second grade,” Caitlin said. “I couldn’t move for two months. My hair, which was quite long, got very matted. My grandma brushed it out, but it was so gross.

With plenty of help from her parents and grandparents, Caitlin stayed on top of her schoolwork throughout elementary and middle school. A huge setback, however, befell her during junior year of high school. A tear in her left hip cartilage combined with persistent pain on her right side made it impossible for Caitlin to walk. The pain was excruciating.

“This required major surgery during which the orthopedic surgeon repaired the torn cartilage and reconstructed the hip bone all to get her walking again,” Aimee said. “Unfortunately, the recovery was very long, and she was pretty miserable.”

Caitlin’s friends were focused on graduation and college applications. Meanwhile, she said, “I’m wondering if I’ll ever walk again.” It took a year, but Caitlin finally recovered and resumed walking. She also has a wheelchair, which she uses intermittently to this day.

When they think back on the past 21 years, Aimee and Dave are incredibly grateful for the care Caitlin received from so many UW Health physicians, nurses and therapists.

“Everyone at UW helped soften the blow not just for Caitlin but for us,” Aimee said. “Dave and I are form Maryland and had always planned to move back, but once Caitlin was born, we couldn’t even think of leaving her care team in Madison.”

To stay or leave for college?

An incredibly gifted student, Caitlin naturally pursued college plans. Her parents heartily approved, but being nervous about the idea of their daughter functioning independently only if she stayed in Madison.

“I really wanted to go away to school,” Caitlin said. “I found a small school in Mount Vernon, Iowa, Cornell College, and I just fell in love with it. My mom and dad took me for a visit, assuming I’d see how impractical it would be to live 2½ hours from home with my disability.”

Caitlin wanted to test herself and get out of her comfort zone. Aimee, in particular, resisted until she finally ran out of reasons not to let Caitlin go away to school. “When you have a kid with a chronic medical condition who keeps beating the odds, you give in on some things,” Aimee said.

Caitlin got her wish. The challenges, however, surfaced immediately.

“I was nervous. I was homesick, especially the first semester,” she says. “As much as I wanted to push myself, I also worried about getting hurt or sick or having to go home. I also need to plan ahead because many places are still not accessible for disabled people. And then my mom made me text her after every meal because I have a life-threatening food allergy.”

The texts were cryptic I’m alive and I ate but got the job done.

By sophomore year, things improved dramatically. She found her people and her growing sense of independence. As a junior, she was driving her own Honda Fit around town and across state lines, thanks to Dad’s addition of pedal extenders and seat cushions to compensate for her size.

Leaving was best decision for the long term

Now a senior, Caitlin knows that leaving Madison was the best decision she ever made.

“I just love my school,” she said. “I also know that getting a few hours away from home gave me the confidence I need to take on the challenges I will face throughout my life.”

Caitlin’s younger brother, Jack, a Madison West High School senior, treasures the close relationship with his sister, whom he never thought of as “different.”

“People ask me what it’s like growing up with a sister who is disabled,” he said. “I tell them, 'I don't know.' "

In addition to maintaining a near-perfect GPA in college, Caitlin is editor-in-chief of the literary magazine, plays oboe in the band and orchestra, works in the writing studio and volunteers at a local elementary school.

While COVID-19 has temporarily put her college graduation (and Jack's high school commencement) on hold, Caitlin is excited about what lies ahead.

“I don’t mind being a role model for other kids with disabilities,” she said. “If your disability motivates you to work even harder to be viewed for your ability rather than your disability, there are no limits to what you can achieve."