One Life: Amanda Shadowens

D-H Patient Amanda Shadowens

Thirteen-year-old Amanda Shadowens is a typical teenager. She likes to giggle with her friends, play with the family dog and talk endlessly on her phone. But Amanda, who stands 4 feet 4 inches tall, was born with a rare form of dwarfism, chondrodysplasia punctata, in which the skeletal bones don’t form correctly. “I’m not small,” says Amanda, “I’m fun-sized.” Head-to-toe skeletal x-rays were sent to specialists at Cedars-Sinai Medical Center in California, a leading research facility on skeletal dysplasia, but they were unable to type Mandy’s dwarfism, or predict what her family could expect in the years to come. They could only say that Amanda was “truly unique.”

As a baby, Amanda wasn’t able to crawl because she couldn’t lift her head; by age three, she was wearing glasses and bilateral hearing aids; by the age of seven she had her first spinal fusion surgery and was in need of another. Concerned about pressure on Amanda’s spinal cord and the potential risk of paralysis, Dartmouth-Hitchcock (D-H) spine surgeon, Sohail Mirza, MD, MPH, and Children's Hospital at Dartmouth Pediatric Neurosurgeon David Bauer, MD, advocated using the new Center for Surgical Innovation (CSI), a state-of-the-art, real-time, multimodal imaging facility, designed to solve difficult surgical problems. “For difficult cases like Amanda’s,” says Bauer, "this increases the safety of the operation dramatically.” Mirza added, “With CSI’s intraoperative imaging, we’ll be able to use small screws not designed for the spine or children with dwarfism, and put them exactly where we need them.”

In what was the first pediatric case in CSI, Mirza and Bauer teamed up for a two-part spinal fusion procedure to get Amanda out of danger, out of her neck brace and back to being an active teenager. Following a 20-hour surgery on August 7, 2014, Amanda’s fusion was complete. “She’s safer getting around now than she has been in the last year and a half, says Mirza. At her two-month checkup Amanda would declare, “They did a really good job with me.”  As for Amanda’s dream to one day ride a horse, Bauer says. “With some therapy, I think she’ll get there.”

View a three-part video of Amanda’s CSI journey

Part One

Part Two


Part Three