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news News Friday, December 6, 2019 Friday, December 6, 2019 1:47 PM - Friday, December 6, 2019 1:47 PM

Vivian's brittle bones receive specialty care

Vivian's brittle bones receive specialty care

Vivian’s mother knew that what her young daughter was experiencing was not typical. For years, Vivian's mother, Dorota, tried to find answers. Physicians at another children’s hospital in Chicago tested for everything from hydrocephalus to spina bifida. But they were all ruled out. 

“If Vivian hurt herself, she would not stand on her leg. I had a deep feeling there has to be a cause of all of this,” said Dorota. Vivian also had low muscle tone and hypermobility (when joints easily move beyond normal range), and her head was growing rapidly. In addition, Vivian had an abnormal walk and deformities in her ankles and feet.

Dorota continued to pursue treatment for Vivian, but the mystery deepened, and some clinicians questioned her persistence. “No one listened to me. The medical teams told me it was possibly in my head,” Dorota said. But she knew it wasn’t. When her daughter complained of back pain, pointing to the area, they tried physical therapy and eventually X-rayed her spine. Dorota said the orthopaedic doctor didn’t see anything in the images, but a radiologist later detected multiple compact fractures in her vertebrae.

Vivian was 4 when the diagnosis finally came. She has osteogenesis imperfecta (OI), also known as brittle bone disease. Children with OI typically have dozens of fractures while growing up. Dorota went online, searching for more information about her daughter’s rare disease, and connected with a parents’ group from the OI Foundation. When she mentioned she was from Chicago, Dorota said the referrals came immediately. “You have Shriners Hospitals and Dr. Smith right there,” she recalled hearing.

Peter Smith, M.D., is a pediatric orthopaedic surgeon who is nationally recognized for his expertise in treating children with OI and other rare bone conditions. In addition to seeing experienced medical care providers, Vivian has access to advanced technology that can help monitor her brittle bones, such as the DEXA scanner. This machine is helpful for pediatric patients because it captures images faster and uses a lower dose of radiation. The hospital also provides psychological support to help Vivian with pain management.

The family’s experience at Shriners Hospitals for Children — Chicago was different from the start. “The staff at Shriners Hospitals said, ‘We want to hear from you. You know your child the best,’” Dorota siad.

Vivian, now 7, continues to receive care from the Chicago Shriners Hospital OI team. Although she has had more than 40 bone fractures, she doesn’t let those tough breaks slow her down. One of her favorite activities is competitive swimming, and she is the Illinois multi-ability state champion in several events.

“I now tell all my friends, everybody, to come to Shriners Hospitals for Children — Chicago for orthopaedics,” Dorota said. “My daughter loves coming there. It feels like a family.”

Vivian wearing swimming medalsVivian with Spiderman