“He only has four toes on his right foot.”
This is one of the first things Ellen Jeffers heard from her husband, Brian, shortly after their fourth child Clark was born in 2014. “I was perplexed and concerned,” says Ellen.
They took Clark to an orthopedist when he was 1 week old, but the doctor didn’t express any concern over their infant’s lack of a 10th digit.
But, when he was about 6 months old, Clark’s oldest sister Anna—who was 11 at the time—repeatedly said to Ellen that she thought her little brother’s right leg was also shorter than his left.
“Sure enough, she was right,” Ellen says. “We visited our orthopedist and he confirmed that, but we left without a diagnosis.”
In search of a second opinion, more specifically from doctors who were familiar with limb length discrepancy, Ellen turned to Jill Flanagan, MD, Orthopedic Surgeon at Children’s Healthcare of Atlanta.
Clark had his first appointment with Dr. Flanagan at 9 months old, and she immediately confirmed he had fibular hemimelia, a condition Ellen had never heard of but affects about 1 in 40,000 births. Clark’s right leg was approximately 1 inch shorter than his left.
“Although fibular deficiency is a relatively rare condition, it is not rare for the experienced comprehensive limb deficiency team at Children’s.” Dr. Flanagan says. “And, despite the difference in his limb lengths, Clark is a normal, healthy boy. It is my job for Clark and his family to believe that statement.”
To consider a person with a limb deficiency for reconstruction, certain criteria is necessary. The patient needs to have relatively functional joints and a “reasonable” amount of limb length difference to overcome. In addition, there needs to be a good rapport between the doctor and family, because communication is critical.
Limb reconstruction surgeries and lengthening procedures also require a unique skill set. The surgeon needs to be skilled and experienced about the nuances of these surgeries, and there needs to be an experienced physical therapist who understands the goals of physical therapy.
“Children’s has the providers that have the expertise to allow Clark’s limb lengthening be a success,” says Dr. Flanagan.”
It was determined that Clark was an excellent leg lengthening candidate for reconstruction and leg lengthening surgery.
He underwent SUPERankle surgery on Oct. 6, 2016. “His ankle was not completely straight, so I first performed an ankle surgery to better align it,” Dr. Flanagan explains. “His anticipated final limb length difference is less than 3 inches to overcome, which is a great enough difference that needed treatment, but not too extensive of a difference that lengthening would not be possible.”
Clark had his second surgery on Jan. 3, 2019. His right leg was placed in an external fixator that uses cranks to help grow the bone. The procedure involved breaking Clark’s tibia, and each morning and night, the cranks on the external fixator are turned, pulling apart the healing bone. These small movements allow the bone to grow longer because the bone is slowly separated during the healing process.
Ellen says Dr. Flanagan did a great job preparing her family for the surgery, but they were still a little worried, because they knew how intense the procedure could be.
But, Clark was off his pain medicine in less than two weeks and immediately began physical therapy at Children’s at Fayette. Between Jan. 9 and Feb. 24, 2019, Clark’s tibia grew 34 millimeters.
“The whole process is absolutely miraculous,” Ellen says. “The external fixator is this large contraption, but Clark can still walk around. In fact, we have to keep him from running, doing karate kicks and other crazy things.”
“Limb lengthening on children is an extraordinary experience,” Dr. Flanagan adds. “Children have an amazing ability to adapt, in many instances, better than adults. While applying an external fixator to a 4-year-old child may seem crazy to some, it is the perfect time for Clark. He is excited about getting his leg longer, especially before starting kindergarten, and he has not let this external fixator slow him down.”
When the external fixator is removed, a rod will be placed through the newly grown bone to help stabilize it. Clark will once again have physical therapy and wear a cast for about a month.
“It’s just been amazing to see how well he’s done,” Ellen says. “And while the days seem long when you’re counting down, it’s gone by faster than I could have expected.”
Ellen also couldn’t be more pleased with her family’s experience at Children’s. “They have been amazing. Every little thing they’ve done, they have taken the patient into consideration first. There’s nothing that can take the anxiety away completely from your child having surgery, but I do feel like every single person we’ve come in contact with at Children’s has been wonderful to work with and super at caring for Clark.”
Children’s comprehensive limb team was specifically designed to care for patients like Clark. They have the expertise for every facet of care, from surgery to therapy and everything in between.
Clark will have a second leg lengthening procedure when he’s finished growing, so between the ages of 14 and 16. Until then, Clark will continue to enjoy sports, playing with his siblings, dinosaurs, Captain America, “Star Wars” and being his spirited, tenderhearted self. And Ellen hopes she can continue sharing Clark’s story and help parents have a better understanding of what fibular hemimelia is.