I remember the day so well. It was March 15, 2010. Chris's birthday. We were so excited for that ultrasound we could hardly wait! I was ready to start shopping for our little one. I just wanted to know if I would be buying shabby chic or sporty stuff! We happily found out we were having a little boy. Chris was over the moon. I was happy and nervous. What was I going to do with a boy?! I can't braid his hair or paint his nails!! Chris was very sweet and said that I would be just fine. It would all come natural and little boys love their mommys. He was so right :)
After the ultrasound we went and waited for my doctor to come tell us he was perfect and we would see her in a few weeks. When she finally came in the room she said everything looked great, except for one thing...his right femur was growing about 5 weeks behind his left one. I wasn't sure what she meant because I didn't know this could even happen. She then started to explain that she wanted us to go to the University of Iowa Hospitals for further testing. Chris and I just looked at each other and we were so confused. What was going on? Why was his leg not growing? Was it going to catch up to the other one? Would our little boy be able to walk? Did the ultrasound tech measure wrong? We asked most of these questions and our doctor didn't know what to say. She finally said that she wasn't sure what was going on. She had been doing this for 6 years and "had never seen anything like it". We were devastated.
After googling "unilateral short femur" for 2 weeks and finding very little, we finally had our appointment in Iowa City. We had another ultrasound and met with a wonderful prenatal doctor, Dr Santillion, who sat down and talked to us for a long time. He was unfamiliar with what was going on and admitted he had never seen this before either. He advised us to do some further testing to rule out any chromosome abnormalities, such as Downs Syndrome, or any infections that could have possibly caused this. I had an amnio that day and they took 3 viles of amniotic fluid. (I didn't watch but Chris said the needle was very long!) Within 24 hours we had ruled out Downs Syndrome and within 2 weeks we got the rest of the results and everything came back completely normal! All of this was great news but we still didn't have an answer. Why was his leg shorter? Dr. Santillion did some reserch and thought it was most likely PFFD (Proximal Focal Femoral Deficiency) Which basically means delayed calcification of the bone. Thats why it wasn't growing as fast as the other femur.
After that visit, Chris and I had 4 more ulrasounds in Iowa City to monitor the growth of his legs. They grew at the same rate throughout my pregnancy except the right one was half the size of the left. In the meantime, I switched OB/GYN doctors to Dr. Pickering. He was amazing from the first visit and even though he had never seen a baby with PFFD, he made an effort to learn about it. We did too. There isn't a lot of information out there but we found a website that gave us hope. It was an orthopedic surgeon's website who specialized in fixing rare birth defects of the bones, such as PFFD. Finally, someone who knows SOMETHING! We had felt so alone and no one could tell us anything so when we saw this website we were very happy. There were people of all ages going to this guy and singing his praises. His name is Dr. Dror Paley and he is the answer to our prayers!
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