Just Keep Dancing: Limb-Lengthening Offers Alternative to Amputation for Patients Like McKenna

Born with an incredibly rare hip condition, McKenna underwent a complex limb-lengthening procedure that saved her leg and got her back to center stage.   Eleven-year-old McKenna Capps is a dancer through and through. From jazz and hip-hop to contemporary (her favorite), she loves it all and can even remember choreography without music. She's so light on her feet, you’d never guess she’s danced her whole life with a rare hip condition.

When Vanessa and Shane Capps adopted McKenna in 2013, they knew their baby was born with a hip condition, which they believed was something fairly common and easily treatable, like hip dysplasia. However, her first doctor’s visit revealed a very different diagnosis: congenital femoral deficiency (CFD), a complex limb deformity with varying severity. For McKenna, it led to her left leg being significantly shorter than her right, a discrepancy that often requires amputation and the use of a prosthesis to treat.

While PFFD is rare - affecting only 1 in every 200,000 children - the Capps’ situation is even rarer: They already know someone with the condition who's not just a family friend but a nurse practitioner at Atrium Health Levine Children’s Brenner Children’s Hospital - and who, it just so happens, knew of an innovative surgery that could save McKenna’s leg. 

Like Walking for the First Time

Sheila Mason, DNP, was 5 years old when she first met McKenna’s parents. Their families became friends through church, and Sheila was even the flower girl in Vanessa and Shane’s wedding. 

Nurse Practitioner Shelia Mason with patientBorn with PFFD, Sheila had her leg amputated as a child. Today, she’s a pediatric orthopaedic nurse practitioner at Brenner Children’s Hospital in Winston-Salem, NC, and cares for children undergoing limb salvage procedures and children living with limb loss. 

When the Capps family first came to Sheila for advice on McKenna’s diagnosis, she knew she could help – both to provide a safe place for McKenna to navigate limb differences as she grows up, as well as to point the family to the best and latest treatment options. 

“I understood the fears they would have regarding her treatment options and the impact to her quality of life in childhood and as an adult. However, I also knew that management options were vastly improved through medical research and innovation. This allowed me to offer them hope and resources to choose the best treatment option for her family,” says Sheila.

When Sheila was a child, amputation was one of the primary treatments for individuals with significant leg differences. Today, children like McKenna have another option: innovative limb preservation techniques, including a magnetic-powered limb-lengthening device. Once this rod is surgically placed inside the bone, patients place a special computerized magnet on top of their skin to lengthen the rod - and in turn, their limb - about a millimeter every day. 

In addition to offering this complex limb-lengthening treatment, Brenner Children’s Hospital has the most extensive pediatric orthopaedic program in western North Carolina, with an entire team specialized in treating children with limb differences. 

“These are not simple conditions. It takes years of education and training to develop skills and knowledge to address them. That’s exactly why we have pediatric surgeons, nurses and providers specialized in complex limb-length differences and spinal deformities. These are not things we ‘dabble’ in - it's what we do day-in and day-out,” says Michael Hughes, MD, a pediatric orthopaedic surgeon at Brenner Children’s Hospital. 

Born with an incredibly rare hip condition, McKenna underwent a complex limb-lengthening procedure that saved her leg and got her back to center stage.   Backed with this knowledge – and the peace of mind that Sheila would be by McKenna’s side every step of the way - the decision to choose Brenner Children’s Hospital was easy, even if it was a drive from their home in Tryon, NC. “It’s further away for us to go there, but we haven’t even considered anywhere else. Brenner is just great,” says Vanessa, adding that their care team connected them to resources like Ronald McDonald House to ease the stress of traveling.

At age 3, McKenna had her first procedure, a surgery to realign her hips. As she grew, the difference in the lengths of her legs was becoming larger, making activities like running, jumping and even walking painful. But because the best time to perform limb-lengthening procedures is during the growing years, McKenna’s doctors waited until she turned 11. And in July 2023, it was time. “I was nervous about the surgery, but not who was doing it,” says Vanessa, adding that she trusts Dr. Hughes and his team 100%. 

Less than two months after the limb-lengthening procedure, a mere 50 days, McKenna’s left leg had grown an inch and a half. Instead of standing on tiptoes, both her feet now rest flat on the ground. Though she’s been dancing for years, her family says that in some ways it’s been like seeing their daughter walk for the very first time.

Without Missing a Beat

Born with an incredibly rare hip condition, McKenna underwent a complex limb-lengthening procedure that saved her leg and got her back to center stage.   After months on the sidelines, McKenna rejoined her friends in the studio last Christmas. She is healing quickly after having her limb-lengthening device removed and has a national dance competition in July. A few weeks later, she’ll have surgery to correct a curve in her spine, caused by scoliosis not related to CFD.

After that, McKenna will be free to move - and move on. “I have the same hopes for McKenna that I do for all my patients: that someday she’s able to move on with her life and forget about us,” says Dr. Hughes. 

For spunky, sweet McKenna, the future is bright - and the world, her stage.