Jeff Heaton turned to research when his wife, Tracy, suffered from left-sided facial paralysis following brain surgery.
“I wanted to make sure she had the best options and the best care,” says Jeff, vice president of Artificial Intelligence Innovation at Reinsurance Group of America headquartered in Chesterfield.
Get a fresh take on the day’s top news
Subscribe to the St. Louis Daily newsletter for a smart, succinct guide to local news from award-winning journalists Sarah Fenske and Ryan Krull.
This research led to the creation of Dynaface, an open-source platform used to quantify facial paralysis recovery that was developed jointly by Washington University and Johns Hopkins University.
Going back to 2021, Tracy started to experience balance issues, headaches, and ear pain.
“I kind of attributed all that to the stress from being a teacher, my schedule, and things like that,” says Tracy, a Spanish teacher at Parkway Schools. “It wasn’t until I was watching television that I noticed that when I turned my head to one side, I really couldn’t hear anything.”
After speaking to her primary care doctor, she was referred to Gateway Ear Nose and Throat that May to check her hearing. Soon after, an MRI revealed the problem: an acoustic neuroma, otherwise known as a benign brain tumor that grows on the nerve that connects the inner ear to the brain.
From there, she was referred to an otolaryngologist or ENT surgeon at Barnes-Jewish Hospital. Doctors found that her tumor was large at 3.7 centimeters, and would need to be removed; if the tumor continued to grow, doctors said it could reach the brainstem and cause seizures.
“He told me the size and said it was ginormous,” says Tracy, noting that doctors usually catch these types of brain tumors when they’re mere millimeters. “That’s when the whole odyssey started.”
That August, surgeons were able to successfully remove the tumor. However, there was loss of electrical communication with Tracy’s left facial nerve—leaving her unable to move the left side of her face.
Initially, Tracy was focused on making sure she could go home; doctors checked things like balance and cognition, and she easily passed all tests with flying colors. She just looked different. “I just remember always trying to avoid mirrors whenever I had to go to the bathroom,” she says. “But I always had this expectation that it [the facial nerve] would just re-establish contact, until it didn’t.”
By September, nothing had changed.
At one moment on her way to Starbucks that same month, Tracy realized she might be stuck with her facial paralysis. It was a discomfiting feeling.
“I remember even telling Jeff that I didn’t feel suicidal, but I would not have felt sorry if I hadn’t woken up from surgery,” she says. “That’s how low I felt.”
Jeff, however, was busy looking into possible solutions.
Fortunately, he already frequently reviewed medical research journals as part of his job at RGA, which specializes in life and health insurance. This helped immensely when doing his own research to support Tracy’s recovery, which led him to Dr. Kofi Boahene at Johns Hopkins—a facial plastic and reconstructive surgeon with expertise in facial paralysis and other areas.
By October, the Heatons were on a plane to meet with Dr. Boahene in Baltimore for a consultation. He told them that Tracy would need a nerve graft or reanimation surgery. In January 2022, she underwent the procedure.
And Jeff wasn’t done. Using photos that Tracy took of herself daily during her recovery to track improvements, Jeff used artificial intelligence to identify facial landmark points on images and measure changes in facial symmetry over time.
While the first facial-recognition models he tested automatically corrected Tracy’s asymmetry because they had primarily been trained for use on non-paralyzed faces, Jeff accounted for the bias and rewrote the software to accurately track facial paralysis instead.
“Then I was able to really start to measure it [Tracy’s progress],” he says.
At Tracy’s next appointment with Dr. Boahene, Jeff provided objective measurements of Tracy’s recovery via an AI-based algorithm that analyzed daily photographs of her face and tracked improvements in facial movement and symmetry over time.
Not long after, Dr. Boahene had Jeff join his institutional review board—using his technique to track progress in other patients at Johns Hopkins.
“I basically joined his research team, so to speak, so that I could see their data and be cleared to do that, and we created Dynaface,” says Jeff. The AI tool allows others to track and document their recovery just like Tracy did.
Since then, Jeff has coauthored two medical journal articles on Dynaface. In addition, he worked on a Dynaface iPhone app that’s freely available for download.
For Tracy, all that effort paid off. By the spring of 2022, Tracy’s smile was starting to return, progression anyone could see over time thanks to Dynaface.
“It makes me feel really good to know that we’re providing hope for people that might be in a dark spot,” says Tracy.
Today, the video of Tracy’s progress that demonstrates how to use the application has been viewed over 300,000 times, and patients with Bell’s palsy and acoustic neuromas have contacted the Heatons about Dynaface—including two RGA employees with acoustic neuromas.
“Knowing that Dr. Boahene will use the information through Dynaface to help work with other doctors and show them new ways to measure facial paralysis and progress takes a really horrible situation and turns it into something for good,” says Tracy. “It helps redeem those dark days that I had.”
The Heatons also feel proud that their story started in their hometown, St. Louis.
“I feel very privileged and honored to help,” says Tracy, who’s from St. Charles County. “The fact that my story is being used, it doesn’t just end in St. Louis; it’s continuing with a ripple effect.”
They’re also pleased to see the collaboration between Washington University and John Hopkins. Research from the Dynaface project is now also part of the course Jeff teaches at WashU, where he’s an adjunct professor who specializes in AI.
“It’s amazing the level of medical care that we have here in St. Louis with Barnes,” added Jeff, who’s from Affton.
More than anything, Tracy cherishes her husband’s determination to help her recovery.
“It just shows the depth of his love and concern going through some of the darkest times of my life,” she says.
