Carter was born on March 15, 2000 in Logan, Utah. Carter was a cuddly baby from the start! He was born at six in the morning and we held him all day long. That evening as Carter's dad, Jason, was changing his diaper he noticed that his right leg was short. I told him that all babies are just squished, but he insisted. We called the newborn nursery and they sent someone down. The nurse looked at his legs and then said we should call the doctor. That was a terrible feeling! Our doctor came quickly and sat with us for a good part of the night while we cried. We were so worried about Carter because our doctor thought he most likely had some sort of syndrome. The first night was scary just because of the unknown. The next day, after running some tests, they told us he had a bone deficiency and they arranged for us to meet with a pediatric orthopedic doctor. After meeting with that doctor we realized that Carter's childhood would be filled with many surgeries.
To date, Carter has had 5 major surgeries and several other procedures . This includes leg lengthening and hip reconstruction. Unfortunately, Carter has endured many complications that have been very painful. The worst was when he fell at the Aquarium, broke his leg (and the metal rod in his leg), and went to the hospital in an ambulance. Through it all, Carter has remained happy and positive. He smiles and waves each time he is rolled into surgery while I fight back tears. Carter is also very determined and he runs around the neighborhood and rides his bike with all of the neighbor kids. He rarely complains that his leg hurts even though I know it does. Sometimes he wakes me during the night and asks for a pain pill because his leg is hurting too badly to sleep. Those times break my heart and I remember what he goes through on a daily basis.
Carter needs to be treated by a doctor who is highly specialized. Because of the rarity of his birth defect it is hard to find a doctor who has treated many children with the condition. We have been in contact with a doctor in Florida who has extensive experience treating Congenital Femoral Deficiency. We are forever grateful to the doctors and nurses who have treated Carter up to this point. Next month our family will make the trip to Florida for our first consultation at the Paley Limb Lengthening Institute. We are planning a surgery for August, but we have to commit to living in Florida for four months after the surgery in order for Carter to receive intensive physical therapy. We'll keep you updated...
POSTED BY MOM