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Zarah’s Bracing Story: “Listen to Your Child”

Posted on by Sarah Cunzolo, CPed, COA, CFo

When Aisha Mawusi was pregnant with her daughter and went for her first ultrasound, doctors told her that one of her child’s legs looked shorter than the other. When Zarah was born in July 2017, what they saw on the ultrasound was confirmed—her left thigh was significantly shorter than the right.

In technical terms, the condition is called proximal femoral focal deficiency or PFFD, a birth defect in which the upper part of the femur (thigh) bone and hip socket are either malformed or missing, which causes one leg to be shorter than the other.

A month after Zarah was born, Aisha went to see Dr. Richard S. Davidson, an attending pediatric orthopedic surgeon at Children's Hospital of Philadelphia (CHOP) who focuses on limb deformities, foot disorders and PFFD. Dr. Davison told Aisha her medical options to address Zarah’s PFFD, which included hip surgery, as well as optional surgeries to either lengthen the leg or transform it for a prosthesis.

In leg-lengthening surgery, the surgeon cuts the bone of the limb and attaches a device that slowly moves the two ends of the bone apart. As space opens up between these two ends, new bone grows to fill in the gap. Zarah would have to undergo several rounds of lengthening over the course of several years, with months-long periods of rest in between. Aisha didn’t love that option—it sounded like a lot for a child to have to endure. 

“It’s a good solution but in my case I did not want that,” Aisha says. “She was only 1 at the time. It wouldn’t have started till she was 5, and she would have to be out of commission for a good portion of the year. As a child, that’s unrealistic. I feel like she’d be wasting her whole childhood.”

Another option was to surgically transform Zarah’s ankle into a knee and create a prosthesis for the lower half of her leg. That, too, involved major surgery and a long recovery time.

A Non-Surgical Alternative for PFFD

A year later, when Zarah was undergoing physical therapy at CHOP, Aisha met Lauren Levey, CPO, MSPO, who is the practice manager at the Boston O&P CHOP clinic.

Lauren told Aisha that surgery was not her only option—she could try bracing for Zarah. While bracing would not lengthen her shorter leg, it would enable her to walk more easily, and potentially prevent other problems in her hips and spine from walking with different leg lengths.

Zarah got her first brace in 2019, and she loved it. Her first brace was novel, because Zarah’s foot was still too small for an actual prosthetic foot. She was also too small for some of the heavier prosthetic parts. Lauren worked with a prosthetic foot manufacturer to build a specialty part that attached to the back of the brace for Zarah.

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