Oscar is interesting and people want to know why and exactly what he has. I understand that and so, since Oscar's condition is so rare and each case of PFFD and FH is different, it is sometimes confusing to others so I've put down the answers to the most common questions I get asked about Oscar.
1) Where's his foot?
He still has his foot. Sometimes seeing him wear his prothetic people think he no longer has a foot. His foot is in the AFO (Ankle Foot Orthotic) which is above pylon with the false foot. We have not made our decision on keeping his foot but we are leaning towards lengthening. He will have surgery when he is two on his hip, knee, and ankle. After that surgery we will have a better picture of what we intend to do.
2) What toe is he missing?
I can't tell you what toe he is "missing" because nobody knows. He is not really missing a toe as much as missing an entire ray of the foot. A typical foot has five rays, each one ending in a toe. Oscar has a four ray foot.
3). Is his leg broken?
His leg is not broken. The bend you see is just the way his tibia formed without his fibula. It does not hurt him to have his tibia like that. He has was born that way.
4) Does his leg cause him pain?
His little leg causes him no pain on a daily basis. He cries sometimes as all kids his age do for various reasons. It is not because of pain in his leg. If it did cause him pain I doubt he would do all things that he does.
strongest big toe!
5) Did he have surgery?
He has had no surgery yet. The mark you see on his little leg is a dimple, a trademark of fibula hemimelia, not a scar from surgery.
6) Can they fix his leg while he is young so he won't remember?
Oscar's condition cannot be fixed with one simple surgery and his leg will never be completely like his typical leg. He will require many complex surgeries over his childhood for him to have both feet on the floor, sometimes requiring cast, fixators, wheelchair, etc.
7) Does he have a knee?
Yes, he does, it's just a couple inches from his hip since his femur is so short. All his joints are slightly malformed and they don't quite work like the ones on his typical leg. We hope to have them corrected when his is age two with SUPER surgery on his hip, knee, and ankle.
8) Why was he born this way?
This is a hard one for me. While there is no known cause for this congenital deformity, I have often wondered this. I have since made peace with this being a random occurrence but its hard not blame yourself especially when you first find out. You knit pick even the most minuet detail of you pregnancy. You get angry when you see shows where people pop out "perfect" babies even though they took no care of themselves while pregnant. You think "Why my baby?". Will finding the reason why change the fact that your child has this? No. When I look at Oscar, he is not mad that is the way he is, he does not pity himself, he just deals with it. That is one of the many lessons Oscar has taught me. While we may never know why, in the end, it really doesn't matter.
