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Going great lengths: a mother and son’s journey with fibular hemimelia

by Jenna Cohen
fibular hemimelia

The diagnosis

“Your son is missing a bone in his leg… you should terminate the pregnancy” were the words my specialist muttered that changed my life forever. At my 20-week anatomy scan, it was discovered that Angelo was missing the fibula bone in his right leg, because of an extremely rare condition called “fibular hemimelia” that affects one in 44,000 children. The moment the news was delivered, my ears began ringing and my body froze. The world around me stood still. This was something you read about in magazines or depicted on television. I never imagined this could become my son’s reality.

I knew in my heart there was something out there that could help him—I just didn’t know where to begin. In a time of panic, a friend suggested I join a fibular hemimelia Facebook support group. I was extremely scared and nervous to face the reality of this condition head-on but knowing that Angelo wasn’t alone brought me tremendous peace. Within these support groups I asked questions, looked for advice and requested doctor recommendations. Based on what I read, I knew major surgery was on the horizon so getting additional opinions was a must.

The right fit

After discovering the success stories of many patients, we found the right fit for Angelo and his condition. We initially met with the doctors via Zoom, since we did not live in the same state as them. and travelled to meet in person once Angelo turned one. It was at that appointment that the doctors gave us Angelo’s total leg length discrepancy and his timeline—something that wasn’t revealed to us before.

It was determined that Angelo will have a total six-inch leg-length discrepancy and would require three leg-lengthening surgeries over time. They projected that the first set of surgeries should be completed over the next year. His second surgery at the age of four or five and the third surgery in his early teens. This, of course, could all change depending on his progression.

For each surgery, we would relocate so Angelo could receive the best care for his condition. In January 2022, Angelo had his first procedure called the “SUPERankle” surgery. The purpose of this surgery was to correct the range of motion in his ankle and foot since it was limited. One month later, Angelo’s external fixator was attached to his right leg to lengthen his tibia bone. Fear of the unknown was put behind us as we began his new chapter in life.

The lengthening process

The external fixator is a device that is bolted into the tibia bone and foot through metal rods and pins. The fixator has six struts with dials at the top that are turned daily to lengthen the bone. We were given a schedule that informed us how many turns each dial would make per day. 

It was a very stressful and painful process for both Angelo and myself. It’s very hard to watch your child go through something like this. But knowing what the outcome would be kept us moving forward.

Angelo attended physical therapy five days a week for one hour during his 11 weeks of lengthening. His physical therapist assisted by stretching his leg daily and had him complete exercises that targeted specific areas in his leg. We were also given a set of exercises to complete at home. X-rays were taken every two weeks to determine new bone growth. His doctors would thoroughly examine the bolts and pin sites for any type of infections and give recommendations for us to follow for the next few weeks.

When we weren’t at our daily physical therapy appointments or doctor visits, we would explore our temporary home by taking long walks in our wagon, car rides to different parks and visited special landmarks. Luckily, we had family that lived locally who always came along for the ride. It was nice for Angelo and me to see familiar faces and to have their support during this challenging time.

Post leg-lengthening

Once Angelo completed his 11 weeks of lengthening, we were able to head back home for the consolidation period. The external fixator remained on Angelo’s leg during this time. Even though we did not have to attend physical therapy, we continued working on his exercises daily.

Angelo’s external fixator was removed in August 2022. He wore the fixator for a total of six months and gained two inches of new bone growth in his tibia bone. He was then “hard-casted” for one month. Once the hard cast was removed locally, x-rays were taken and sent to his doctors. They recommended starting physical therapy right away since the right leg was extremely stiff. He currently attends physical therapy and will be re-evaluated in April 2023 to see if his goals were met. Angelo will meet with his doctors in person at the one year post-lengthening mark where they will examine him and discuss his next steps.

We need your help

Did you know that April is Limb Difference Awareness Month? If we weren’t directly impacted by a limb difference, I don’t think we would have been made aware of what individuals like Angelo experience on a daily basis. 

We are asking that you help us spread awareness not only during the month of April, but each and every day. People with limb differences are strong, unique and inspiring individuals who contribute so much to society and the world around them. Help us get them the acknowledgement they deserve! 

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