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LaNaysha, 12

Northern Neck | Services: Orthopaedic Surgery

Taking Care to be a Kid

Twelve-year-old LaNaysha Savoy has already broken both of her legs twice, spent a total of 16 weeks in two different body casts and recently broke her hip. LaNaysha, who enjoys practicing basketball and watching wrestling, isn’t an extreme athlete or stunt woman though. Three and a half years ago, after her second leg break, LaNaysha was diagnosed with osteogenesis imperfecta, a congenital disease causing extremely fragile bones. Because there is no cure for osteogenesis imperfecta, the best treatment is safety and prevention since even everyday activities can lead to broken bones.

LaNaysha’s mom, Rachel King, had an uneventful pregnancy and uncomplicated delivery and no indication of her daughter’s condition until LaNaysha fell in the grocery store when she was nine and broke her right leg, two years after an accident that broke her left leg. The first break was treated at a hospital near LaNaysha’s home in Kilmarnock, Va., but after the second break, Rachel took LaNaysha to see a specialist at Children’s Hospital of Richmond at VCU (CHoR), where she met Victoria Kuester, MD, Assistant Professor, Pediatric Orthopaedics, Department of Orthopaedic Surgery, CHoR.

“I suspected osteogenesis imperfecta because LaNaysha had multiple long bone fractures after minor fractures, which is unusual,” said Dr. Kuester, who also noticed that LaNaysha’s bowed legs and triangular-shaped face were consistent with children with osteogenesis imperfecta.

Dr. Kuester referred LaNaysha to a geneticist at CHoR who confirmed the diagnosis.

A Multi-Disciplinary Approach to Treatment

Osteogenesis imperfecta is caused by genetic defects that affect the body’s ability to make strong bones because of decreased or poor quality collagen, part of the body’s connective tissue around which bones are formed. While there are multiple forms of osteogenesis imperfecta, there are four main types, each of which presents at different ages. In addition to the symptoms displayed by LaNaysha, other traits can include hearing loss, brittle teeth, short stature, loose joints, respiratory problems and a tendency toward spinal curvature. An estimated 20,000-50,000 individuals in the United States are affected by osteogenesis imperfecta.

After their first meeting, Dr. Kuester placed LaNaysha in a body cast for eight weeks, and the fracture healed well. Dr. Kuester continued to manage LaNaysha’s care, seeing her at least once a month to provide options including exercise and calcium-rich vitamins for strengthening her bones. After LaNaysha’s third fracture, Dr. Kuester surgically implanted a metal rod in LaNaysha’s leg to prevent future breaks. Six months later, LaNaysha and her mother chose to have a rod implanted in her other leg to prevent fractures of those bones. (While rodding is a common treatment to strengthen bones and prevent future breaks and deformities in children with osteogenesis imperfecta, it does not prevent fractures above or below the rods.) This past summer, Dr. Kuester surgically implanted screws near LaNaysha’s hip after she fell in her front yard and broke that bone. After each fracture or surgery, LaNaysha has also received extensive rehabilitation through physical therapy near her home.

Because LaNaysha sustained multiple fractures in a short period of time, this fall, Dr. Kuester referred LaNaysha to one of CHoR’s endocrinologists to be evaluated for medical treatment to strengthen her bones. LaNaysha, who travels three hours round-trip to get to CHoR, benefits from the hospital’s multi-disciplinary focus and team of physicians.

“Children’s Hospital’s physicians work together really well,” said Dr. Kuester, who provides surgical treatment options as the hospital’s only fellowship-trained, full-time pediatric orthopaedist. “I have no hesitation calling another physician for advice. We want the best for the kids.”

To expand CHoR’s pediatric orthopaedic services, Children’s Hospital Foundation has pledged $1.7 million over three years to enhance the program, including the recruitment of a second pediatric orthopaedic surgeon and nurse practitioner. This funding support will help provide pediatric orthopaedic coverage 24 hours a day, seven days a week for pediatric trauma patients, serve more children by increasing clinic and surgical volume in Richmond and starting satellite clinics in Williamsburg and Fredericksburg, improve education for local pediatric orthopaedic medical residents, and develop additional subspecialty clinics for conditions like scoliosis or limb deformity.

“The Foundation’s support is tremendously helpful,” said Dr. Kuester. “Having another doctor will help us grow our pediatric orthopaedic services, do more research and become more specialized in some of our practice areas.”

Despite the hospital’s distance from home, Rachel said she doesn’t mind the commute because she knows her daughter enjoys seeing her doctors and is getting great care. "The doctors have helped explain LaNaysha’s diagnosis and how to manage her care at home," Rachel said.

A Typical Pre-Teen

Although LaNaysha’s condition prevents her from playing team sports, she enjoys shooting a basketball on her own and is a huge wrestling fan. Like most pre-teens, she also likes to play video games, watch the Twilight movies and shop for shoes. A seventh grader at Lancaster Middle School in Lancaster County, LaNaysha likes doing science experiments, drawing and playing the flute in her school’s band.

“I wanted to play the trumpet,” LaNaysha commented, “but mom wanted me to play an instrument that was lighter.”

“I tell her to have a normal childhood—just to be careful,” said Rachel.

After each broken bone or surgery, LaNaysha’s physical therapist, who she currently sees twice a week near her home, helps her progress from using a wheelchair to a walker to a cane then to walking unassisted. Her therapist also encourages LaNaysha’s artistic talents and gave her a sketch book to hone her skills. She has even had some of her artwork displayed at school.

“Always believe in yourself, and try new things everyday,” said LaNaysha, who is a good role model for her three-year-old sister, Joniyah. “I’m so thankful to my family and friends for encouraging me each day.”

Rachel echoes LaNaysha’s sentiments and supports her daughter every step of the way.

“I want her to do the best she can in whatever she decides to do,” Rachel said.

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