OBSOLETE: Fibular hemimelia, bilateral

Bilateral fibular hemimelia is a rare birth defect in which both fibula bones (the smaller bones on the outer side of the lower legs) are partially or completely missing. Because this condition affects both legs, children are born with noticeable shortening and bowing of both lower limbs. The feet may also be affected, sometimes with missing toes or an abnormal ankle joint. This condition is present at birth and is usually detected during pregnancy on ultrasound or immediately after delivery. The severity can vary widely. In milder cases, the fibula is only partially absent and the leg length difference is modest. In more severe cases, the fibula is completely missing, the leg is significantly shortened, and the foot and ankle may be very unstable or malformed. Because both legs are involved, walking and mobility are significantly affected without treatment. Treatment depends on the severity and may include limb lengthening surgeries, reconstructive procedures to stabilize the ankle, prosthetic devices, or in some cases, amputation followed by prosthetic fitting to allow better function and mobility. A team of orthopedic surgeons, rehabilitation specialists, and prosthetists typically manages care. Note: This Orphanet entry is marked as 'OBSOLETE,' meaning it may have been reclassified or merged into a broader category of fibular hemimelia or limb deficiency conditions.

Bring these to your next appointment

• Q1.How severe is the fibular hemimelia in each leg, and what does that mean for treatment options?,Would limb lengthening surgery or amputation with prosthetics give my child the best long-term function?,How many surgeries should we expect over childhood?,What physical therapy will be needed, and how often?,Are there any associated conditions we should screen for?,Can you connect us with other families who have gone through this?,What kind of mobility and activity level can we expect as my child grows up?

Common questions about OBSOLETE: Fibular hemimelia, bilateral