Kyle Gospodarek is fascinated by “biological art,” specifically with the brain. In fact, those pieces cover the walls at his Indiana University Northwest office.
But, one piece is more personal to Gospodarek: a light-up shadow box showing CT scans.
“That’s me,” Gospodarek said, pointing to the scans. “You can see my actual name and information somewhere.”
Gospodarek, an assistant professor of clinical family medicine at IUN, has hydrocephalus, a medical condition defined by the buildup of cerebrospinal fluid in ventricles deep in the brain, according to the Mayo Clinic, which can make ventricles bigger and put pressure on the brain.
Since his diagnosis, Gospodarek has had nearly 70 surgeries. But, he hasn’t let hydrocephalus define him, and Gospodarek was determined to go through medical school and now uses his experience to teach and advocate for those who also have the condition.
Gospodarek was diagnosed with hydrocephalus at six years old after an aneurysm ruptured around his brain stem, he said. The aneurysm was formed from a connector tissue disease, and when it ruptured, it ultimately clogged up the brain’s ability to reabsorb fluid.
However, Gospodarek wouldn’t have known about the aneurysm unless a 27-inch television fell on his head, an event his neurosurgeon at the time called “a blessing in disguise.”
“I’d always put my feet up on the entertainment center, and I’d lie there and watch TV. My mom yelled at me about it so many times,” he said. “I would rock it back and forth, and one time, it just went too far, slid off and nailed me in the head.”
Gospodarek ended up in the hospital with a skull fracture and concussion. During imaging, doctors found the already existing aneurysm before its rupture.
“When that thing ruptured, I was very fortunate to make it out of there alive, let alone actually walking and talking,” he said. “I mean, the doctors had my parents prepared to teach me how to walk again, talk again, eat, everything like that at six years old.”
Donna Gospodarek, his mother, said from the beginning, his diagnosis “was very, very, very hard and emotional.”
“We almost lost him,” she said. “His journey has been very difficult with many surgeries that almost took him from us. … It’s the hardest thing we’ve been through throughout our lives.”
Since then, Gospodarek has had 68 surgeries, including eight before his seventh birthday. Doctors did a couple surgeries to try to divert the fluid but weren’t successful, he said, so they had to put in a shunt, which is a tube that drains built-up fluid from the brain to another part of the body, according to the Mayo Clinic.
His ninth surgery was on his seventh birthday to replace his shunt.
“I actually have a picture floating around here somewhere of me blowing out candles with a nice, big, white bandage right on my head,” Gospodarek said.
After that, Gospodarek didn’t have another surgery until he was 15 years old and began having chronic headaches, which led to a shunt revision and nine more surgeries.
Donna Gospodarek said, over the years, their family developed a routine. They’d have bags packed and ready in case they had to go to the hospital.
“We had to be ready at a moment’s notice,” Donna Gospodarek said. “But now we’re more lax about it. … I think part of that is because he’s not a child any more.”
Hydrocephalus has also impacted Gospodarek’s educational journey.
Two days before he was set to go to college, Gospodarek had a shunt infection. He was in the neurological intensive care unit for two weeks, and he rethought his college plan, choosing to complete his undergraduate education at Purdue University Northwest’s Westville campus, where he graduated from in 2010.
During his time with Indiana University’s School of Medicine, he had 20 total surgeries.
While in medical school, Gospodarek had “a pretty significant brain surgery,” where he ended up having a hemorrhagic stroke. The stroke was in a spot of his brain stem that’s in charge of reception and touch for the right side of his upper limbs.
“I had to take a year off school, learn how to be left-handed, ultimately, and then do a lot of occupational and physical therapy to get back to a decent level of function,” he said.
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Gospodarek thought he would be a medical doctor, but when it came time for him to get matched for a residency position, he experienced a shunt malfunction. He delayed his match for one year but faced more complications and had to pull out fully.
“During that time, I got a hold of one of my old professors here, who asked if I would be interested in a position teaching the clinical components of the new curriculum,” Gospodarek said. “It seemed like a good stopgap measure, so I took her up on it. While I was here, it just really felt right and like something that blended everything I was passionate about in terms of medicine.”
Donna Gospodarek is in awe of how much her son has accomplished.
“He’s happy as can be, and he’s teaching medicine,” Donna Gospodarek said. “What more could he ask for?”
Josh Mangum, IUN assistant professor of anatomy, cell biology and physiology, said he’s worked with Gospodarek since July 2020. The two teach first and second year classes and collaborate together, Mangum said.
Mangum said Gospodarek is “very open and honest” about hydrocephalus, which helps when teaching as well.
“I think oftentimes it’s seen as something that’s going to slow an individual down,” Mangum said. “But Kyle has always been the complete opposite of that. He’s always punctual, always on time, always willing to help out the students. I think he provides a really great humanistic example of the condition. … He’s unstoppable.”
In addition to teaching, Gospodarek is also involved with the Hydrocephalus Association, a nonprofit organization dedicated to finding a cure. He attended the organization’s national conference in Indianapolis July 23 through 25.
“It’s the most incredible part when I finally feel understood by a handful of people,” Gospodarek said. “It’s just such a neat experience. It’s really fun at my age because I want to be able to see all the kids with the condition and talk to the parents of those kids, especially just to reassure them a little bit.”
Michael A. Williams, professor of neurology and neurological surgery at the University of Washington, also serves as the medical co-chair of the association’s conference. Williams said it’s important for people to learn about hydrocephalus because patients’ cases are all different.
“It’s what can sometimes be called an invisible disease or invisible impairment,” Williams said. “Some of them, depending on their circumstances, might have some cognitive difficulties.”
Because of the nature of its symptoms, some people might not recognize hydrocephalus, Williams said. For example, some symptoms in cases might include trouble with balance when walking, difficulties with thinking and memory, or trouble with bladder control.
“That doesn’t automatically mean they have hydrocephalus, because there’s a lot of other things it could be,” Williams said. “But it might be hydrocephalus.”
As of now, the only effective treatment for hydrocephalus has been shunt surgery, but Williams said research is being done — at an IU lab in Indianapolis — that makes him optimistic for the future.
“The possibility of medical therapy for hydrocephalus is on the horizon — it could be within the next 10, 15 or 20 years,” Williams said. “We have seen progress that we never expected, and a lot of that is actually the result of the Hydrocephalus Association. They’ve been really supporting patients and families for more than 40 years now, and they’ve had this big push for research, especially in the last 20 years.”