News from the Orthopedist

Owen had an appointment with his orthopedic surgeon on Tuesday. This was the first official appointment to discuss and deal with his leg length discrepancy. Of course we have known about the LLD since he was 5 days old and learned more when he was about 2 months old. We thought we were dealing with a congenital short femur and knew that he would require a leg lengthening surgery. Because the surgery needs to be coordinated around his growth pattern and growth spurts it will likely be when he is between 8 and 10 years old.

This was the appointment at which we were to begin measuring the length of the femur. He had a baseline x-ray, which unfortunately showed not only that the left femur is 2 cm shorter than the right, but that his left tibia is also short. I was devastated. I did not expect to go there and receive news that yet another thing was wrong with my Little Man. Dr. Casey, his orthopedist was not all that surprised and I guess I really shouldn't be either. The discrepancy has always been obvious in the femur and not so obvious in the tibia (it is 1 cm short) but we were never told that his tibia was unaffected. At this point he is much to young to consider lengthening, but this makes figuring out how to go about it even more difficult. There are what seem to be 100 different options. To name a few, she may have to lengthen the femur and the tibia, just the femur, lengthen both twice, lengthen both once and then shorten the "long" leg a bit. There are complex growth formulas which she will use in conjunction with measurement on x-rays to decide what to do. The bottom line is that it is going to be a long time before we know anything, and it is weighing heavily on my mind.

The good news: she was thrilled that he is walking and that he did so as early as he did. She said the strength is equal in both legs, he has done a wonderful job compensating for the discrepancy and she believes he will continue to do so. That brings me to the next issue: heel lifts. Since the surgery can't be done until he is much older, it will be necessary for Owen to have a heel lift on his left shoe. We were expecting that to begin now since he is a full-blown walker, but for many perfectly reasonable and understandable medical reasons that I will not bore you with, she wants to wait. I didn't want to wait and thought about arguing with her about it, but she was able to validate her reasoning and convince me that it is better to wait. We go again in 6 months for more x-rays and measurements. At that time we will revisit the possibility of beginning the lifts. At the very latest we will start with them when he is 2.

More good news: His hips are both still in perfect position and are looking great. Also, the bone quality and composition in the left leg looks just the same as in the right. That means it is just the length discrepancy and not something worse or more complicated that we are dealing with.

This is the main reason I have been hesitating to post. I didn't know how to talk about this latest development. I didn't know how much to share or what to say. What it has come down to is that this is my outlet, writing is my therapy and I have always been very honest about my emotions and feelings. Ok, so we got some unexpected and bad news, but we also learned that it is not the end of the world, it is still fixable, and there is plenty of good news to be thankful for. Don't get me wrong, I am thankful, eternally thankful and grateful. I am also angry, confused, sad and just upset and frustrated. I hate having to watch my baby go through this, I hate that he has to deal with this. I want what is best for him. I don't want to have to wait, I don't want him to have a disability to deal with for years to come, I don't want to watch him struggle. I don't want to go back every 6 months for more x-rays and to be told that the discrepancy is now larger, to continue to be fitted for new heel lifts each time he outgrows a pair of shoes. I guess what I am trying to say is that I am having a hard time with all of this. I am blessed to have Owen, I wouldn't give him up for anything in the whole wide world. It is just hard to watch your baby go through hardship, it is hard when there are things that you cannot fix no matter how good of a mom you are. It is a terribly helpless feeling.