MADISON, Wis. – Dani Hansen has always had a clear vision of her future as a wife and mother, even after losing her eyesight three times, including during her second pregnancy.
“We really had to babyproof the house,” she said. “We even put bells on our son since he can be an escape artist,” she said. “But my husband and I always made it work.”
In late December 2018, Hansen came home from work with what seemed like a common cold. A couple of hours later, she developed a fever, and blisters started forming on her skin. When her condition worsened, her fiance rushed her from their home near La Crosse to the local emergency department.
She was transferred to University Hospital, where she was eventually diagnosed with Stevens-Johnson Syndrome, or SJS, a rare, debilitating, and potentially life-threatening disorder of the skin and mucous membranes. While the exact cause of Hansen’s case isn’t known, SJS is typically the result of an adverse reaction to a medication or to an infection. Hansen was taken to the UW Health Burn and Wound Center and placed in critical condition, with significant skin loss all over her body.
“I was in the burn unit for 44 days, including Christmas and my birthday,” she said. “I was intubated for 15 days, and I lost most of my skin, along with all my hair and fingernails.”
In addition to severe blistering and burning, she also experienced swelling in her mouth, throat, and face, as well as extensive scarring on her eyelids and corneas. To create a treatment plan to protect Hansen’s eyes, Dr. Lee Faucher, medical director of the UW Health Burn and Wound Center and professor of surgery at the University of Wisconsin School of Medicine and Public Health, called upon eye care experts from UW Health, who recommended that Hansen receive amniotic membrane transplants. The amniotic membrane is the innermost layer of the placenta, which can be applied to the surface of the eyefor both physical protection of the wound and to promote healing, according to Dr. Sarah Nehls, a cornea specialist at UW Health.
“Due to their anti-inflammatory and anti-scarring properties, these grafts are an innovative way to trigger a rapid wound healing process,” said Nehls, who is also a professor of ophthalmology and visual sciences at the UW School of Medicine and Public Health. “Dani’s case was so severe, however, that the grafts couldn’t entirely prevent ocular surface scar tissue from forming.”
During her weeks in the burn unit, Hansen received skin grafts and medications, which allowed her body to heal and regrow her missing skin and hair. When she finally returned home in February 2019, hidden behind dark sunglasses, she was highly sensitive to light and nearly blind in her left eye. Hansen’s first course of action was to visit an eye care provider in her hometown. The plan was to improve her vision by fitting her right eye with a scleral lens, a custom-fit, large, rigid contact lens. However, the scarring in and around her eye made that impossible, and her doctor recommended that Hansen undergo plastic surgery. She was referred to Dr. Cat Burkat, oculoplastic surgeon, UW Health, who operated on Hansen in August 2019.
“Our goal in this surgery was to release the extensive scarring to the eye and repair Dani’s eyelid which would allow her to be able to wear a lens comfortably,” said Burkat, who is also a professor of ophthalmology and visual sciences at the UW School of Medicine and Public Health. “This began a series of surgeries to restore her vision, and I was impressed how Dani remained optimistic each step of the way.”
Through early 2020, Hansen continued to work with her local eye care provider, however, they were unable to get the lens to fit well due to continued scarring. Her doctor recommended she receive a stem cell transplant to heal the fragile cornea. In the spring, she made an appointment to see Nehls. Before Hansen could make that appointment, she developed a bacterial infection in her right eye.
“That infection damaged her cornea and required an emergency surgery,” Nehls said. “While we were able to stabilize the eye temporarily, the damage was significant, and it became clear we needed to switch our treatment to focus on Dani’s left eye.”
In March 2021, Nehls performed a stem cell transplant on Hansen’s left eye, utilizing tissue donated by Hansen’s sister to patch the damaged cornea.
“I was nervous to ask my sister Amanda to go through with the donation,” Hansen said. “She was incredibly generous and just wanted to take care of me; I am incredibly grateful.”
Once her eye was healed from the surgery, Hansen was finally fitted with a scleral lens for her left eye by Dr. Amy Walker, an optometrist at UW Health.
“We hoped that the combination of the stem cell transplant and this new lens would be the key to restoring Dani’s vision,” said Walker, who is also a clinical assistant professor of ophthalmology and visual sciences at the UW School of Medicine and Public Health. “While she regained her vision for several months, she ended up developing a cataract in her left eye.”
By the time she got married in October 2021, Hansen was once again blind. She took this setback in stride thanks to the support of her husband and her ‘seeing-eye dad.’
“My dad told me I could have bad days, but not bad weeks,” she said. “My husband has been by my side this whole time and always encourages me to be as independent as possible.”
A month after the wedding, Hansen had the cataract removed, and her vision was clear. She returned to work in 2022 and even celebrated the birth of her first child, Clay, later that year. When she became pregnant with her second child in 2023, things changed again.
“My pregnancy was hard on the stem cell transplant, and my body ended up rejecting it,” she said. “Eventually, the cornea in my left eye perforated and began leaking fluid.”
The next months were a continuous cycle of repeated perforations and repairs, with Hansen’s family driving her between La Crosse and Madison for appointments. Despite everything, Hansen’s vision worsened, and by the time her daughter Aubrie was born in February 2024, Hansen was once again blind.
As Hansen adapted to her new role as a mother of two without vision, her care team researched innovative treatments to restore her sight. After extensive research, they discovered a procedure successfully performed in Europe, involving a stem cell transplant using cells from a patient’s own cheek. In May, Nehls led the team that performed the surgery to harvest Hansen’s mucosal cheek tissue and transplant the tissue in her left eye.
“Dr. Burkat and I were hopeful this would bandage the surface of Dani’s eye so she could then have a corneal transplant,” Nehls said. “Dani knew it would take several months before a transplant could be attempted and was patient with the healing process while caring for her newborn daughter and an active toddler.”
In the months following the surgery, Hansen’s left eye continued to heal, and by September, the care team determined she was ready to undergo the cornea transplant utilizing a prosthetic cornea. Nehls was assisted by Dr. Yao Liu, glaucoma specialist, UW Health, and Dr. Amol Kulkarni, retina specialist, SSM Health, and clinical associate adjunct professor of ophthalmology and visual sciences at the UW School of Medicine and Public Health.
“Dani’s eye needed a complex three-surgeon procedure to successfully transplant a new prosthetic cornea, called a keratoprosthesis, to allow for restoration of her vision,” said Liu, who is also an associate professor of ophthalmology and visual sciences at the UW School of Medicine and Public Health. “We are very fortunate because Dr. Nehls is the only surgeon in Wisconsin who performs keratoprosthesis surgery.”
After nearly a dozen surgeries on both eyes, Hansen was on her way to seeing clearly for the first time in six years. which meant embracing life with her baby girl in a whole new way.
“It was incredible! I got to experience having a new baby all over again,” she said.
Hansen relies on eyeglasses but is thrilled to be able to see the world clearly, and so is her young son.
“He grew up helping me find things on the floor and helping me put on my shoes. Now that I can see, it’s all about ‘can you see me mommy?’ because now I can,” she said. “I told Dr. Nehls that I didn’t need to drive again, I just wanted to see my children and play with them; because of the entire team, I got that.”
Hansen continues to travel to Madison to monitor the fit of the scleral lens in her left eye, and her treatment plan is focused on keeping her left eye healthy. She is hopeful doctors can perform the cheek stem cell transplant and corneal transplant on her right eye in a few years. Hansen calls her journey the ultimate roller coaster ride of emotions and credits her surgical team at UW Health for refusing to let her give up, no matter how difficult things became.
“Thank you isn’t enough for everything they’ve done for me,” she said. “It wasn’t just doing the basic medical care that they do every day. It was being there to comfort me, and not giving up on me or giving up hope. They helped me keep on fighting.”
