Four years ago, breathing was easy. No pain – everything felt normal for Michaela Davert.

"My scoliosis is pretty severe, but surgery is so incredibly dangerous," said the now-22-year-old from Bay City, Mich., in a video on her YouTube channel. "It doesn't affect my quality of life. Therefore, I'm not going to do anything about it."

That feeling, however, didn't last.

Davert has osteogenesis imperfecta, a genetic disorder also known as brittle bone disease that affects around one in 20,000 Americans. It's common for patients with her condition to develop an abnormal curve in the spine, or scoliosis, that can worsen over time, says Michelle Caird, M.D., pediatric orthopaedic surgeon and chair of the Department of Orthopaedic Surgery at University of Michigan Health.

"The scoliosis can increase in severity from micro-cracks in the bones that allow the curvature to happen, and from bigger compression fractures," Caird said. "This can encroach on the heart and lungs' abilities to function on their own."

Looking for options, Davert spoke with several surgeons about the possibility of a spinal fusion surgery. The procedure involves connecting rods and screws to fuse the spine into a stronger position.

All of them told her it was too risky.

"They were worried that I would come out of the surgery relying on a tracheostomy because of my respiratory conditions at the time and how long I would need to be under anesthesia," Davert said. "There's also the risk of becoming paralyzed. They told me living with what I had was the best decision, and that was incredibly discouraging."

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Davert's care team at U-M, led by Caird, shared the same concerns. She leads an osteogenesis imperfecta clinic at the hospital, which brings together physicians from nearly 12 specialties to develop a multidisciplinary treatment for the rare disorder.

"Michaela and I had long discussions for many years about whether we should address her scoliosis surgically," she said. "But we hoped that through surgery we could stop the progression of that curve and give her some internal support. I know we have such a great team that is really expert in critical care, and together with Michaela we made the decision to go ahead with the operation."

The surgery

The process of preparing Michaela's spine for a spinal fusion required extra care and coordination. Davert had nine screws placed in her head connecting to a ring and gentle weights called a halo traction.

The halo device is similar to those used for patients who break their neck. In Davert's case, it slowly stretched her spine to improve her curve as much as possible before the operation.

The spinal fusion itself is made more difficult by osteogenesis imperfecta, says Hugh J.L. Garton, M.D., M.H.Sc., pediatric neurosurgeon at University of Michigan Health C.S. Mott Children's Hospital. The bones in Davert's spine are small and brittle, so positioning her for the operation required extreme caution.

In late 2020, Caird and Garton performed the operation. Davert woke to promising news one day later.

"It truly went better than anyone expected," she said. "They had no scary moments in the surgery. Many of my friends who undergo a spinal fusion also need a blood transfusion, but I did not. I just remember waking up feeling so much joy, and I'm just really, really grateful."

Michaela used to need her arms to support her breathing, and now her spinal fusion can support her, Caird says.

"I really do think that it's had some positive impacts for her, and I'm hopeful it will help her live a very long, comfortable life," she said.

Sharing the journey with thousands

Davert's friends, family and care team were not the only people pleased with the outcome of the procedure. Nearly 39,000 others followed along, subscribing to her YouTube channel, "FunsizedStyle."

The channel started as a fashion vlog geared towards young women with physical disabilities who are underrepresented in the beauty industry. As more subscribers grew interested in her osteogenesis imperfecta, Davert created more personal content.

"There is just not a lot of information about osteogenesis imperfecta, and most people don't know someone with it," she said. "So, I just share my life experiences, and a lot about my scoliosis journey. I know people personally who have had the spinal fusion, but nobody really documents it publicly. So, I thought, 'It would have been nice to have seen that and have some fear taken away.'"

Since the procedure, Davert has posted over a dozen videos sharing intimate details of her recovery process, which typically lasts more than a year. She also started an osteogenesis imperfecta and scoliosis online research fund through U-M Health.

"I want to raise money and hopefully see a day where no one else has to make these incredibly scary and life-altering decisions," Davert said. "It's been very humbling to be able to turn this pain I've experienced into a bigger purpose."

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