Liz first came to Nicklaus Children’s Hospital’s Limb Lengthening and Deformity Correction Program in August 2022 at age 8. Born with achondroplasia, the most common form of dwarfism, Liz’s primary complaint was limited reach due to her short arms, an issue that diminished her quality of life. Liz’s disproportionate humeri, or upper arm bones, complicated common activities of daily living, such as combing her hair and tying her shoes. Following lengthy consultation with Daniel Ruggles, DO, FAOAO, pediatric orthopedic surgeon at Nicklaus Children’s, a treatment plan was developed.

“Our goal was to lengthen the humeri to a point that Liz could realize improved function,” Dr. Ruggles says. “Of course, there is a limit to limb lengthening, especially at such a young age, but we aimed to add an additional two inches.”

Identifying Liz’s Candidacy

Prior to recommending limb-lengthening surgery, Dr. Ruggles spent time getting to know Liz. He offers the same courtesy to all patients who come to him with achondroplasia and are considering limb lengthening. These early conversations provide a glimpse into the specific limitations experienced by patients due to short or disproportionate limbs. Understanding this allows Dr. Ruggles to learn what meaningful improvement would look like for the patient and increase patient awareness of the possibilities and limitations of surgical intervention.

“Liz wasn’t worried about her short stature, and she could have lived a happy life — with some limitations — without undergoing any surgery at all,” Dr. Ruggles says. “However, she yearned for greater independence, and her parents wanted her to be able to care for herself.”

These goals convinced the team at Nicklaus Children’s that Liz was an ideal candidate for simultaneous limb-lengthening surgery of both of her arms with external fixator devices. Bone lengthening is a well-established, but complicated, procedure that requires specific training and experience. Because of her young age, Liz was not a candidate for internal bone lengthening, a newer technique utilizing a special telescopic device that can be used in adolescents and adults. 

Reaching Toward and Reaching Goals

Surgery took place on January 23, 2023, and included the following:

• Dissecting the radial nerve to protect it from damage during the gradual lengthening process
• Performing an osteoplasty, or precise incision through each humerus bone to allow distraction and new bone growth
• Placement of an external fixation device on either side of each humerus bone

One week after surgery, the lengthening process began with Liz’s parents making multiple small adjustments to the external fixator at home, guided by a daily program provided by Dr. Ruggles. Liz also had intensive physical therapy multiple times each week, a mandatory aspect of limb-lengthening procedures.

“Children who undergo limb-lengthening surgery must keep the affected limb moving to reduce the risk of joint problems,” Dr. Ruggles says. “If the joints grow too tight, we’re forced to stop the lengthening process prematurely.”

Such premature stoppage prevents patients from achieving their lengthening goals. Liz’s ongoing and willing compliance helped her avoid joint contractures and kept her lengthening on schedule. Though the frames are bulky and inconvenient underneath shirts and jackets, Liz was not fazed. She continued with her daily activities, even attending school throughout the process and engaging in all normal activities that did not put her at risk for damaging the frames.

Three months later, Liz reached her lengthening goal. After the newly created bone had consolidated and strengthened, the external fixators were removed, approximately five months after the surgery.

“This brought her one step closer to functioning in the world on her own,” Dr. Ruggles says. “She now has no limitations as far as what she wants to do with her arms, and she looks very proportional as well.”

Customized Care for All

Dr. Ruggles tailored Liz’s treatment program to meet her specific needs, an approach that is used for all patients who turn to Nicklaus Children’s. This commitment to personalized care is particularly noticeable in children who undergo leg-lengthening procedures.

Recent advances in medicine complement this personalized approach. As lengthening technologies evolve and new options come to market, patient-driven decision-making is becoming the new standard. There is no longer a single treatment option that families must either accept or deny; rather, they’re given multiple options and together with Dr. Ruggles, choose a treatment plan that they feel best meets their needs. As a result, patients and their family members have more input than ever regarding the path forward.

Optimizing outcomes in limb lengthening requires knowledge of the new technologies available, but it also means providing a multidisciplinary approach to patient care. An ideal program provides individualized care plans that may utilize additional resources, such as nutrition, endocrinology, physical therapy and psychology consultation, while appreciating the unique nature of the relationship between clinician and patient.

“Limb-lengthening is more than just a surgery,” Dr. Ruggles says. “It’s a long journey, and there must be a strong relationship between the clinician and child, because that relationship is instrumental to success. It’s a very time-consuming process that requires a personal touch, and the surgery is just one step along the way.”

Email our physician liaison to refer a patient for limb-lengthening services at Nicklaus Children's.