This has been one of the most trying years of our lives. Having a baby is not an easy task and our story does not end there. During my second trimester screening we not only found out we were having a boy, but we were completely devastated to learn there was an issue with his development. I will never forget the doctor entering the room asking the nurse "Which side?" He didn't have to say anything to us; the question and his tone said it all. Something was wrong. I want to share our story of Sawyer's journey. I hope to bring awareness, and help other families in similar situations.
We found out over the remainder of my pregnancy that Sawyer had a problem with his right foot. Our doctors did many tests while I was pregnant to find out what was going on, but could not give us an exact answer. It was not until Sawyer was born and checked out by many specialists that we had a conclusive diagnosis. Sawyer has Fibular Hemimelia, which is a longitudinal fibular deficiency. That's a lot of big words so let me break it down. You have two bones in your lower leg the tibia (large bone) and fibula (small bone). A person with Fibular Hemimelia is missing part of or their entire fibula. In Sawyer's case he is missing part of the fibula, which resulted in partial foot growth. Our doctors could not tell us why or how it happened, but we do know it's not generic. In our case it was also an isolated incident meaning it does not affect anything else mentally and physically, which we were very thankful for.
There are two avenues for treatment: leg lengthening and foot reconstruction or amputation and prosthesis. In Sawyer's situation he did not have a weight bearing foot so there really was only one option for us. At the age of eight months Sawyer had a Boyd amputation. He is left with part of his heel and will be able to walk short distances without the use of a prosthesis. Currently we are in the process of getting him fitted for his first prosthetic leg. The goal is to have him up and walking on schedule with other children his age.
Everyone deals with things differently and I really struggled with the
news. When I was pregnant I cried on my way to work most mornings. Once I
had Sawyer I cried when I thought about how unfair this all was. He is
an innocent baby boy, why him? I was very lucky to find a wonderful
psychologist who helped me with my feelings. She told me what I was
going through is similar to mourning the death of someone. The loss of
the life you thought they would have. What helped me most was talking to family, friends, and researching what was going on with Sawyer. I found salvation in hearing other family's stories. It was one reason I decided to tell our story on this platform. I believe it's not something to be ashamed of and have come to the point where I was ready to tell our story. We are all different in our own ways. Although some differences show more on the outside then the inside it does not make us any less of a person. Sawyer is an amazing little boy and has a very bright future.
From left to right: This picture was taken soon after Sawyer's surgery at 8 months. Sawyer's cast went right past his knee and his leg was bent to keep the cast from slipping off. As you can see it did not set him back. He moved, played and adjusted to the cast. The center picture is at 9 months and the image on the right was taken at 10 months when the cast was off.
