At my 20 week anatomy scan for my younger son, I heard a line that changed my life forever. Your son is missing a bone in his leg. Angelo was born with a limb difference called Fibular Hemimelia, a rare condition that occurs in 1 in 40,000 births. This condition is not genetic and the cause is still unknown.
Three weeks after this diagnosis, I was placed on strict bed rest for 106 days due to having an extremely short cervix. Being hit with two curve balls at once, I tried to maintain a positive mindset at all times. I didn’t know conditions like these existed in the world. This was something that had to change.
We were advised very early on to seek out experts for his limb difference. Where we were living at the time had only one reported case so we knew there was homework to do. I joined support groups on Facebook where I asked for doctor recommendations. The community was supportive and helpful with each question I posted. We made it our business to take Angelo for second and third opinions. Depending where these doctors were located, we attended some appointments in person, and the others were met virtually on Zoom. We knew that major surgery was on the horizon therefore we wanted to find the right fit of doctors for him.
What is Fibular Hemimelia?
Fibular Hemimelia occurs when there is a full or partial absence of the fibula bone. Angelo is completely missing the fibula bone in his right leg, causing his tibia bone to grow at a slower rate. His doctors at the Paley Institute in West Palm Beach, Florida told us that he would have a 6-inch total length discrepancy at full potential growth, and would require multiple lengthening surgeries over time. This also meant that since his doctors were in Florida, we would have to relocate for three months at a time for each surgery. Not an easy task, but something that had to be done in order to receive the best care and treatment.
Angelo completed his first leg lengthening when he was 22 months old. For six months, he wore an external fixator, which is a metal apparatus that is screwed into the tibia bone with bolts and pins. He then consolidated with a hard cast for one month, making the entire process seven months long. Within that time frame, his doctors were able to lengthen the tibia 2 inches. He received physical therapy five days a week, and we supported him with additional exercises at home. He will have to repeat the same process again two more times in order to gain the remaining four missing inches.
Limb Difference Awareness
April is Limb Difference/Limb Loss Awareness Month. This is not widely known, and is something I want to change. When I started this journey in December 2019, I noticed that there weren’t many leg-lengthening stories being shared with the world. I felt completely alone, lost, and isolated. Yes, I had the support of my family and friends, but what I really needed the most during that time was the person I am today. I needed someone who had already walked the path, full of knowledge with personal experiences to share.
This is what has motivated me to document and share our journey with the world. I have made it my mission in life to continuously spread awareness and advocate for the rare condition community. By supporting parents and families on their own personal journeys, we can experience the highs and lows together. Realizing you’re not alone is a powerful thing!
About Jenna Cohen
Jenna Cohen is a Parent Coach and Limb Difference Advocate. She is the proud mother of two boys, one who was born with a rare condition called fibular hemimelia. She has made it her mission to spread awareness for the rare condition community. By supporting parents and families on their journeys, they are able to experience the highs and lows together. Follow Jenna on Instagram and TikTok @iam_fearfully_made, and check out her YouTube channel!
