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My lovely 4 year old

My daughter was diagnosed at birth with what we thought was a femur fracture. She was not in pain and that made the doctors and surgeons wonder about thier diagnoses. It took us almost a year to finally get a definitive answer on what was really going on with Kayla. After three long drives to childrens hospitals the Shriners hospital in Kentucky told us the news. It felt great to finally be able to understand what was happening and not happening to my little girl. On the other hand I was completely devistated. How was she going to get through this and how was I going to be able to fully support her and make some of the hard decisions that the doctors said would await me in her future? I wondered and worried constantly if I had in somehow harmed her while in utero. Did I eat, drink or smell something that could have hurt her. I was pretty sick in the early half of my pregnancy and I was waitressing untill two weeks before I had her. Was there something in the restaurant that I worked at that hurt her? All of these were no. I was healthy. I didn't smoke, drink or do any drugs while or before I got pregnant. I went to all doctors appointments and if anything I made more than I needed just to make sure everything was okay. My son had been a large baby ( 9lbs. 14 ounces 22 1/2 inches long) and the hardest thing I faced with him was having tubes put in his ears and I was an absolute mess the whole 5 minute surgery. How was I going to deal with this? I cried for about two months. I picked up my pride and started asking questions. Why, was my new response for everything that the doctors said and still to this day I still reply with "why?". Kayla has unilateral pffd in her right leg. Her femur is bowed and shortenend and has not been growing. She currently wears a 2 1/2 inch lift on her shoe and wears an afo brace. She gets around pretty good but sometimes have difficulty manuvering her foot around oon stairs and such. She will walk with out the brace but not for long periods of time and pretty soon she will not be able to at all because the difference is getting to be larger. How do you finally make he decision to let a surgeon remove part of your childs leg. I cannot bear to hear the doctors telling me that I should start making a decions about Kayla's procedures and future appointments. I cry everytime. I feel horrible about signing the consent and I cannot do it. I thought I was stronger than I really am. I try to not let it bother me when she is there or I put on a strong face when Kayla asks me what I am going to do for her boo-boo leg as she so cutely calls it. Does anyone have suggestions? I want the best for my daughter but the more I hear that I need to deicde the more I feel backed into a corner and less able to put what really matters ahead of my apprehensions. I do not care what she looks like but I work in a hospital and I have seen poor outcomes from surgery and I have unfortunalty been on duty when a child never woke up from a long procedure. I need help and advice from any and all who have been through this. How long should I wait and hope things will change? Does anyone know of any doctors who have tried other procedures. Kayla does not qualify for lengthening of any shape because of shape and difference of length between the two legs.


Why is she not eligible for lengthening? There are children with a lot larger difference who are able to get lengthening. Have you seen Dr. Paley in Baltimore? Make sure you do all your research before you make a final decision.

But, most importantly please know that your daughter will be more than OK. She will adjust to which ever form of treatment you choose. This is so much harder on you than it is on her. Please know that these little kids are so resilient!!! Try not to be upset, I know it is hard. My daughter is 9 months and she was diagnosed when she was one week old. She has a short femur. Her femur does grow, but not as fast as the one on the left side. We have decided to have Dr. Paley lengthen her leg when she is a bit older.

Hang in there! Your daughter is a beatiful angel and she will be FINE.


Obviously the right time has not arrived or you would have some peace about the decision. It is not a surgery, which can be done too late or too early. I was 7 when my amputation was done because my parents were assured that leg lengthening would not become a reality in my lifetime. Eight years later it became almost routine. My parents made the choice when I started having pain. My dad was never comfortable with the choice so he had mom sign the papers....dads can be such wimps! I have no regrets for what they did. I'm active and have a typical life. Consider telling your daughter, "It’s not time to do anything yet and I will let you know when it is getting close to time". The unknown, rather than a desire for a change, may trigger her questions.

Kids have strange ideas. I thought my parents would return me like they had returned a broken radio to Wal-Mart for another. I thought this until I was almost 8 years old and they had no clue. I knew I had a "birth defect" and I knew "defective" items get returned. Plus I was in a hospital with lots of foster and adopted children so I figured when I couldn't be fixed enough, then they would leave me at the hospital. I still struggle with the term "birth defect" and prefer "disability from birth" or "congenital disability". I tell you this story just to show you that kids need lots of information often, even if the answer is, "I don't know" or they create their own.

Dr. Paley and Dr. Standard are the best. (Batlimore, Maryland) Sini Hospital

My son "Joshua" (8yrs) - had

1. Super knee (age 5)
2. Femur alignment and Femur lenghting Leftleg 2.3inch(age 6)
3. Tubia aligment (age 6)

My son is doing great, but it was a long road.
I moved to Maryland for 9 months and 6 month of appointments (checkups) xrays, etc... from Texas to Maryland.

There is no better place.

The Hackerman-Patz House is "a home away from home —designed with the patient in mind".

My story is long so please ask away..


Please have "Faith"

I feel the same way you do. Its such a confusing time for us parents to deal with, especially when you have a doctor that knows just as much as you do about your childs' condition. As I was reading your blog I was wondering if it was my blog that I had written and just forgot about because I have the same thoughts as you do. As a fellow parent with a child that has pffd I can tell you that you just have to have faith that God will work everything out in time, just trust in him. He will give u the strength for u and your little one. Remember that God will never give you something he doesnt think you can handle.
I wish there was some way that our children could all meet each other just so they wouldnt feel like they are the only ones going thru this, that would probably be good for us parents too because we are going through it with them. Anyways just get as much knowledge as u can, get second and third opinions before u make a big decision for your little one but no matter what she will be ok because our children are stronger than we can imagine.

I would also suggest getting an appointment with Dr. Paley in Baltimore if you can.
You wrote that your daughter is 4 yrs old and has a 2 1/2 inch shoe lift.
My daughter is 2 and has a 3 inch (or so) shoe lift now and will likely undergo lengthening when she is around 4 years old. In other words, by then, her leg difference will be greater, and yet she is eligible for the lengthening.

We were very encouraged by our visit to Dr. Paley - his experience and confidence, providing us another serious option to consider.

Good Luck to you