Innovating Care for Children With Limb Discrepancies and Deformities

Limb discrepancies and deformities present at variable severities, posing unique challenges and risks to clinicians. Congenital anomalies may require multiple, staged surgeries over time, and post-operative management and therapy are often rigorous and vital to surgical success. At Nicklaus Children’s Hospital’s Orthopedic, Sports Medicine and Spine Institute, our team serves this vulnerable patient population.

“These are lifelong disabilities,” says Daniel Ruggles, DO, FAOAO, pediatric orthopedic surgeon at Nicklaus Children’s, who specializes in treating pediatric limb deformity. “Early recognition and intervention help lead to an optimal outcome.”

Intervention often begins prenatally. When an ultrasound detects a congenital anomaly, such as clubfoot or other longitudinal deficiencies, Nicklaus Children’s orthopedic surgeons will meet with the expectant parents. During this meeting, the surgeon educates parents and helps them mentally prepare for the specialized care their child will need. Expectations get discussed and — most importantly — the team gives families hope.

Appropriate Intervention

Many families come to Nicklaus Children’s for limb lengthening or deformity correction with the assumption that there is only one treatment option for their child’s condition. Meeting with the orthopedic surgery team at Nicklaus Children’s provides a different perspective.

“Patients and families always have options,” Dr. Ruggles says. “Even for rare disorders, we provide nonsurgical and surgical approaches, and we actively engage parents in the decision-making and treatment process.”
Prior to initiating surgical or nonsurgical intervention, the team works with parents to set realistic goals. In the case of limb deformity, goals include creating an anatomically straight leg by normalizing the mechanical axis of the limb. Limb-lengthening efforts aim for residual discrepancy less than 5 to 10 millimeters (mm). All treatments target an outcome that optimizes function.

“Most importantly, we want kids to feel better and parents to feel their child’s quality of life has improved,” Dr. Ruggles says. “Our ultimate goal is to let a kid be a kid.”

To that end, the limb disorders program provides families with comprehensive options. These include:

• Internal limb lengthening. The surgeon implants a telescopic PRECICE^® device within the patient’s bone marrow canal. A handheld remote control activates a magnet in the device, causing internal gears to turn and, with a virtually painless process, lengthen the bone. Compared to external leg-lengthening frames, PRECICE is safer, gentler and better tolerated by patients.
• Hexapod External Frames. Today’s hexapod frames have evolved from the original devices introduced decades ago and allow more accurate correction of complex multiplanar deformity. Modern versions include integrated motors that automatically move the fixator frame, thus promoting gradual deformity correction without any patient involvement. The patient may wear the hexapod for a few months, depending on deformity severity.
• Upper extremity correction. Although most limb lengthening and deformity correction occurs on the lower extremities, upper extremity issues also occur. Whether congenital or trauma-induced, upper extremity issues are resolved using similar techniques as those used on the hips and legs.

Taking a Team Approach

Every morning, the pediatric orthopedic team meets to discuss patient cases. Treatment plans are confirmed or modified, and clinicians from various subspecialties speak into cases as appropriate. When a child requires surgery, surgeons collaborate to ensure a successful outcome.

Because limb-lengthening treatments are often complex and affect multiple areas of a patient’s well-being, families have access to a multidisciplinary team that includes:

• Athletic trainers
• Endocrinologists
• Nutritionists
• Occupational therapists
• Orthotists
• Physical therapists
• Physician assistants
• Prosthetists
• Psychologists

To ensure confidence in a child’s diagnosis and treatment plan, team members are quick to encourage second opinions.

“Patients with complex medical conditions will see many different specialists throughout their care journeys,” Dr. Ruggles says. “It’s important that families know they have options, and a second opinion allows them to make informed decisions about their child’s treatment.”

Keeping Pace

Currently, PRECICE is offered only to children of a certain size and weight and typically limited to patients age 8 and older. Within the next year, Dr. Ruggles anticipates a new, modified PRECICE that will allow internal limb lengthening for children as young as 4 to 5 years old. Additionally, new advances in biologics promise to speed or strengthen new bone growth for pediatric patients.

As these new technologies prove effective, they’ll provide new options for patients at Nicklaus Children’s.
“The last few years have brought tremendous advances,” Dr. Ruggles says. “It’s an exciting time to be in this field.”

To refer a patient to Nicklaus Children’s Limb Lengthening and Deformity Correction Program, email our physician liaison team.