Callan's Cause
Welcome to our page, where we share insights and experiences related to our son's medical condition. Our goal is to provide support, information, and a sense of community for families facing similar challenges. We hope you find valuable resources and encouragement as you navigate this with us.
Thank you for joining our community!
What is Fibular Hemimelia?
Fibular Hemimelia—also known as fibula deficiency is a congenital (present at birth) condition in which part or all of the fibula (calf bone) is missing. The fibula is the smaller, outer bone of the lower leg. Fibular Hemimelia is a rare birth defect also causing foot deformities, and knee deformities. Fibular Hemimelia is a very rare disorder, occurring in only 1 in 50,000 births. Bilateral fibular hemimelia (affecting both legs) is even more rare. It is currently unknown why Fibular Hemimelia occurs.
The foot deformity is one of the biggest issues with fibular hemimelia. The foot deformity is related to the abnormal ankle joint as well as missing parts of the foot. The extent of ankle joint deficiency may range from a relatively normal ankle to a very unstable, abnormally-shaped ankle with limited mobility.
Treatment Options
The treatment options for FH are usually extended lengthening / corrective surgeries that are done throughout childhood as the child grows. We were told between 15-20 different surgeries would be needed related to the severity of Callans deformity. The other option is amputation and in our case with how severe both of his legs were it was the best choice in order for him to have the best quality of life with the least amount of surgeries and pain. Each case and condition varies a ton and none are completely alike.
Ultrasound photos of each leg / foot.
Our Story
At 21 weeks gestation we went to our anatomy scan at which we were told there was an abnormality to Callans lower extremities, at that point our OB was unsure as to what it was fully and thought it could have been club foot. They wanted us to have a more in depth ultrasound done at a high risk doctor in Danvers, MA. Upon our ultrasound with the high risk doctor she saw right away that it was Fibular Hemimelia and was able to show us what they were concerned about. As first time parents we were already so scared and this doctor decided one of the first things she would recommend was termination of our pregnancy due to it seeming so severe which terrified us. For the next few weeks we scrambled to have additional blood work, genetic testing, amniocentesis, and an extensive scan of the baby's heart to see if there was anything more concerning with our baby, or if we could see what caused this disorder. In our case Callan was born with no Fibula bones, only Tibia bones in each leg causing severe shortening and abnormalities to his legs and feet, on his left foot he only has 2 toes and 3 on his right foot. All of our tests showed there was no reason this happened and completely at random that his bones didn't develop.
My entire pregnancy nothing was concerning for our baby. He was always moving all around and all our doctors / nurses always joked about his personality already showing. At 37 weeks we delivered Callan safely via C-Section. We had an amazing care team supporting us the entire time. Most of the doctors and nurses hadn’t seen this condition either so it was a new experience for all of us. It was really important for Zack and I to be alone at the hospital to give us both time to process and be able to see Callans legs. His legs were extremely fragile for the first few weeks and we had to be very careful during changes. We met with our surgeon at Mass General to have x rays done and a hip ultrasound when he was 2 months old so that would have a baseline for his care. We have amazing doctors at Mass General that have been overseeing Callans journey, we will have a more definitive timeline for his surgery around 14 months. We knew in our hearts we were chosen to be his parents no matter what, his diagnosis was scary but it didn't change how excited we were to meet our baby. Every day our boy shows us how resilient he already is and will be, he shows us how strong he is and we have no doubt he will truly surprise us all growing up. Callan is the happiest and always smiling. We couldn't be more blessed to have such an amazing support system within our families and friends. Callan is so lucky to be loved by so many.
