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Her Diagnosis just doesn't seem right to me

Hi All
I am glad to have found this site and have been reading all the stories and looking at the pics of all these cutie pie babies. So I thought I would share my story and see if I could get any input.

My daughter Isabella is now 5 months old, almost 6 mo. She was born 2 months early and I knew before she was born that her femurs were short. At my 22 week US it showed that her femurs measured at 16 weeks. They sent me for level 2 US, and it read the same short femurs. They were consistently behind but showed growth. My last US lasted over 1 hr and was painful. And she was born about a week after that. Even at that appointment the doc tried to convince me that I should consider not having the baby. That she could have all kinds of problems besides the femurs. Needless to say I listened to myself and others and to God and had the baby. She is beautiful. Her legs are little and it is just the femurs. They xrayed her at the hospital that she was born and their conclusion was that her femurs were broke. She was also born with a cracked rib. But they said that she would be fine that there were no other problems and to see a specialist. She was in the NICU for a month and 3 days after she left we were at Child. Mem in Wisconsin.

They put her in a pavlik harness ( although the hospital that she was born in said she did not have hip dysplasia) for hip dysplasia. The harness was on for 3 months and supossidly did no good. So they took her out and scheduled her for a surgery to go in and see if she even had hip dysplasia. During this time she also went to genetics and they concluded that she did not have OI, which was a blessing. But they could not figure out what was going on with the femurs. Also radiologist (8-10) at this point can not agree on whether these femurs are broke or bowed.

Since I was getting mad I took her to Shriners in Chicago. They xrayed her and did a little moving around of the hips and legs and came to the conclusion that she had PFFD. I was glad to finally have a name to it. They were really great and informative and helpful there. They gave me this website to look at and learn. But the more I read and see, it seems to me that this is not what she has either. She was diagnosed with Bilateral Pffd. Both of her femurs are short ( a bit more than half on one side and less on the other ). The bowing or breakage of the femur on the right side is worse thatn the left. She also has the opposite of club feet. Her feet hyperextend up. They gave us exercise for that and the stretching is working, her feet normally go out to the side. Her right foot is almost straight and the left is getting better. Her legs are in the frog position and she has a flat back ( thanks to the harness I was told ), plus she has abs of steel. None of her other limbs are short or behind.

Other than these femurs she is perfect. I asked about the limb lengthening and they said that she would not need it that she would be fine. That didn't seem right to me. That they would fit her with Prosth.when it was time and that she would use her own feet to walk in them. I can't help but notice that most of the people here have straight limbs that are short, or the lower leg is curved. I have made appointments for her at Childrens in Chicago and also with the Skeletal clinic there.

Something in me is telling me to keep going because it is not right yet. I admit I cry when I watch her, and I apologize to her. Although they say it is nothing that I did, just a fluke. I have noticed now that the difference in her legs is getting bigger. Her left leg is looking more "normal" and the right is still looking like her thigh is to small. I just need some advice and am I right to keep looking for answers? I see that some of you have catagories of this and they did not put her in one. I almost feel like I was told things to keep from asking more questions. And I had a lot. Any advice would help. I have been looking on the internet and there is really not a lot out there about this. But my search goes on. Thanks everyone sorry this is so long. One more thing, a reason why I am so worried is because she has the potential to be 6ft tall. I am 5'8" and her dad is 6'5". PLEASE HELP. Also Shriners told me that she is to young to be diagnosed with Hip Dysplasia ( is this true ). They said that the harness could have done harm to her instead of good. The doctor at Shriners said that as far as he was concerned the hips were fine.

My son has unilateral PFFD. Carter's femur has always been bowed near the hip. This created a host of problems when we started lengthening the femur 18 months ago. He ended up fracturing his leg and so they decided to straighten his femur. The doctor told us he did a super hip, I'm not sure if that was part of the straightening or something else all together (his femur does not "sit" right in his hip socket). Now, when you look at his leg his thigh is much straighter but his knee turns in toward the other leg. His foot on the PFFD side is smaller and turns outward. Anyway, I just thought I'd let you know about a kid with PFFD and some of the issues you talked about. I hope all goes well with your daughter.

Yes, you are right to keep asking questions. As parents it is our job to take care of your babies. From what I've read pffd is very unique in each person, so I would think several opinions might make you feel more at ease. We saw 5 specialists and chose to go with Dr.Paley. He was the only one (that we saw) who didn't hum and ha over our son's condition. As well as the only one who had answers for all of my questions. I'm sorry the doctors have put such an extra emotional burden on your family. We had the diagnosis when Cody was 9 days old and that was hard. His left femur is class d pffd, no fibula bone, and his foot sounds like your daughters'. As the doctor says- it is an extreme double whammy. He is almost 8 months old and starting to pull up and almost crawling. That brings good tears to my eyes. Keep your head up, cry when you need to, follow your gut instinct, question everything, and dote on your daughter. We can exchange e-mails if you like. Wendy H

Hello! my daughter was also placed in a Pavlik Harness one week after birth. I did ample research on it and it can cause NO HARM. Also, when we finally met with Dr. Paley he confirmed that he is not sure if the harness helped but he definitely knows it could not hurt. SO, do not worry. Also, the more oppinions you seek the better you will feel about your decisions. Your daughter will be fine no matter what and she will adjust to anything. I know this is a very hard time. Eva is 14 months and I still have moments when I am sad but they are very few and far between. So, hang in there, ask lots of questions and, if you can, go see Dr. Paley in Baltimore.

Your daughters condition is very similar to my sons. He is now 11. He did crawl, but on his hands and feet. He walked at 21 months. He has had no medical intervention, just a shoe lift. He does not have hip sockets, his left femur is curved, and slightly shorter than the right. He is about 6-7 inches shorter than the other kids in his class.
Your baby girl is a gift from God, just like my boy. Things were hard for me also, but I would not change the way my boy is. It took me years to accept this, he hea taken his condition with stride, and he is an inspriation to all who know him. God does not take away without giving something in return. Caleb (my son) sings, draws, and wants to become a doctor (I think he will). He also goes to Shriners in South Carolina, they have been good to us. God bless you and your baby girl.