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Much More Complicated Than a Fracture: Pediatric Treatment for a Rare Bone Condition

The most trying period in Penny Doerge’s young life started with what seemed to be a non-event.

“When Penny was four months old, she rolled off of our bed. We didn’t think anything was wrong – she seemed fine, “ recalls Penny’s mother, Kate Doerge of Manhattan. “Twenty four hours later she was inconsolable and just wouldn’t stop crying.” Penny’s pediatrician told Mrs. Doerge that the injury appeared to be more than just a fracture and recommended that she immediately take her young daughter to Hospital for Special Surgery.

David M. Scher, MD, Associate Attending Orthopedic Surgeon, examined Penny and took x-rays, concluding that her injury was indeed much more complicated than a fracture. Dr. Scher told the Doerges that Penny had congenital pseudarthrosis of the tibia.

This rare condition, in which a spontaneous fracture fails to heal, affects only 1 in 500,000 infants. Dr. Scher put Penny in a cast, but told Mrs. Doerge and her husband, Chad, that the cast alone would not heal the bone. He suggested they see Roger Widmann, MD, Chief of Pediatric Orthopedic Surgery, who would best be able to guide them through what would be a very long healing process.

Dr. Widmann concluded that an operation was necessary and closely monitored Penny’s progress as she spent a year in and out of the cast, until he felt the bone was strong enough to withstand surgery.

Before performing the complicated procedure, which involved running a rod along Penny’s tibia and another across her fibula, Dr. Widmann spoke with Kate and Chad Doerge about the possible outcomes of the surgery. The worst-case scenario would be that the bone would never heal and, after several surgeries, they might have to consider amputation. Or, if the surgery went well, Penny might still need to undergo limb-lengthening surgery, as well as additional surgical procedures, to facilitate the healing of the bone.

“Dr. Widmann really prepared us for what was ahead of us,” recalls Mrs. Doerge. “We would have never gone anywhere but HSS for this procedure, because we knew this was where Penny would receive the best care possible.”

Dr. Widmann performed the surgery and Penny – at 15 months old – remained in a full body cast for three months. When the body cast was removed, an x-ray showed that the bone appeared to be healing and growing. Still, Dr. Widmann didn’t want to give the Doerges false hope. Three months later, the bone had, in fact, healed and new bone had grown. Penny began physical therapy and started to walk.

 
 

Penny's right leg was affected by tibial pseudarthrosis (top left and top right) and treated with tibial and fibular rods (above left and above right).

Penny is now two years old and leading a normal life. “She is running around with the other kids, swimming – it has been a total miracle for us to watch what has happened,” says Mrs. Doerge. “We feel so fortunate that we have been in such incredible hands.”

“Penny was never treated as a condition or a case study – everyone treated her as a human being,” says Mrs. Doerge. “From Drs. Widmann and Scher to the nurses, pediatricians, the guys in the cast room, and the physical therapists – everyone took an interest not only in Penny’s case, but in her personally. They have been so supportive in her development and recovery, and I think they are as proud of her healing as we are."

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