We’ve gotten a lot of questions about if and/or when Knox will need surgery. The short answer is that he will need several surgeries, but not likely for at least another year or two. According to the MRI he had in October, Knox’s right hip did not develop correctly, which is to be expected with PFFD. He also is missing his fibula in his lower leg (fibular hemimelia), which is commonly associated with PFFD as well.
Our first priority will be to try to fix his hip. This has to happen regardless of route we take to get him a functioning leg. The hip can’t be done until he is a little older and his cartilage has calcified into bone, so likely when he is 2 or 3 years old. During that surgery, the doctors will also try to stabilize his ankle. This isn’t as important as his hip, since his ankle will be supported by the brace of the prosthesis. Ironically, Knox’s knee is perfectly functional, but he can’t use it because it is only a an inch or so away from his hip, due to his very short femur.
Assuming the surgeons are able to fix his hip and stabilize his ankle, Knox will have a surgery called a rotationplasty when he is about 5 years old.
Now, when I tell people what the rotationplasty surgery entails, I get this particular look that often seems like an amalgamation of pity, sadness, horror and amazement. To be honest, the first time we learned about it, I probably had a similar reaction. But now, I think it’s awesome. And it’s the solution that will give Knox the most mobility with the least amount of suffering, which is the equation that matters most to us.
In a rotationplasty, the knee is removed, and the remaining leg is removed and reattached 180 degrees, so that the foot is facing backwards at the same level as the knee on the other leg. The main reason to do this is that a backwards ankle functions very similarly to a knee, essentially making the person a below-knee amputee. This option will allow Knox to use less energy than if he were an above-knee amputee, and he will bear his weight on his foot, which is much better than putting all that pressure on a stump from an amputation.
Some people have asked if we can forgo surgery and just leave Knox’s leg “as is.” Unfortunately, that’s not an option. Knox’s leg is too short for a shoe lift to help, and he would not be able to control a prosthesis with his foot and ankle as they are now. Other people have mentioned leg lengthening. Knox’s femur is too short for nearly all surgeons to even consider this. There are a few doctors who specialize in extreme cases like his, but even attempting leg lengthening would mean numerous surgeries with long and painful recoveries spanning many years if not decades.
Also, I always try to keep in mind that most children who have rotationplasty surgery have it because they have osteosarcoma — bone cancer. They are dealing with a life-threatening illness on top of the surgery. We feel thankful that Knox is not sick. We are reminded of that sweet fact every time we are at Children’s Hospital with him and see the little ones who are fighting for their lives.
For now, Knox’s surgeries are far enough in the future that it’s easy to keep this perspective. My guess is that when the time comes, it will be much, much harder.