If you are new to PFFD - I recommend starting with the PFFD book

What we're doing

We recently started the surgery process with our daughter. We are using Dr. Stevens at Shriner's/Primary Children's hospital in Salt Lake City (we live close by).

It was pretty scary to do the first surgery (hip osteotomy 2 weeks ago), but it went very well, and we were very pleased. We have a long road ahead of us, but we are hopeful/confident everything will work out well in the lengthening process. It was almost as scary and nerve racking as when she was born, and we couldn't figure out what the deal was (you all have gone through that, it appears).

Incidentally, our daughter has a class B difference that sort of went to a class C over the first 3 years since the hip was not properly aligned (and thus she is not able to take advantage of all her growth plates). We are opting for the lengthening. To lengthen, they have to first realign the hip. Thereafter, they will perform a leg lengthening each year.

Tibia hememlia

Does anyone have a bowed legged like the photos i have attached of my son? Did anyone NOT choose amputation? I am feeeling so torn on what is the "right" descion to make. We plan to fly to Dr.Plaey to get a second opinion, but my heart feels like ampuation would give him the best chance for an active childhood, with out many surgeries. Thanks all


Thank You for all of your support

I really wanted to take a moment to thank everyone that has emailed my and posted comments for my husband and I to read. I have been so over emotional this last week that I have not even been able to write anyone back and post anything. My little baby is getting bigger and bigger each day and I just cant even think of how my life would be without her. Here I am being so unhappy about her condition I sometimes....well most of the time forget how lucky we are to have her. She is God's gift to our family and instead of being so sad about what she has facing her and her life I need to remember how happy I am that her is here with us.


First of all let me start by saying that my son is a bilateral arm amputee and has PFFD in his left leg. All the doctors that we have seen told us the only option we have is to amputate his foot. But, my son recently saw Dr. Paley. He has greatly changed our outlook on Landon's future by giving us other options. Landon's has PFFD class C. His hip was not completly formed but Dr. Paley said that he could do a surgerical procedure and fix the hip. Has anyone ever had this. Next Dr. Paley informed us that he could reconstruct his foot and correct it (he is missing the ankle and pinky toe and also missing the fibula). Has anyone ever had this type of surgery done? Even better he can do this all in one surgery.

Newborn looking for doctor in Michigan or near by

My baby is just one month old and has PFFD affecting her right leg. It hasn't been classified as a,b,c,or d yet. She has a fully developed leg with foot, but missing her knee cap and the femur and tibula are smaller and the femur is bent. It appears to function like her other leg. Any advice while we impatiently wait for our apt with Dr. Ingles in July at Mary Free Beds Limb Def. Clinic in Grand Rapids Michigan. I am struggeling to stay positive. I am scared for all that she will have to go through, emotionally and physically. If anyone has any recommendations of doctors in Michigan for treatment or near Michigan please let me know.


Thanks for the prayers everyone, Tom has been in and screamed going under and screamed coming out!, but we have finally got a proper diagnosis and treatment plan.
Toms right hip isnt formed at all!, and his femur hasnt grown so he shall continue to wear his prostesis, i have had my tears that the miracle hasnt happened, but also im so pleased he wont have to go through the hospital visits that he is so desparatly terrified of.
As i have said to my family, please dont be sad as Tom copes fantastically well, and enjoys life the way he is, and as long as he is happy , so are we!
Tom is an amazing child that teaches us something everyday, We all love him so much and i think if truth is known, its only us that sometimes has upset thoughts and bad days

We Leave Tonight

Hey all,
we leave tonight to travel to the city for toms appointment tomorrow morning,we are staying in a hotel, id like to say im excited about staying at a hotel as we never do!, but the truth is im worried sick and feel sick to go with it,can anyone who reads this just say a little prayer for Tom and us for while hes under general anestetic, if they get time, thanks a lot
love and best wishes Sally-ann

My Little Angel....

My first and only child Kalyn was born on 03/01/06. I was told during pregnancy that my daughter was a dwarf and or had a broken leg. It made for a very emotional pregnancy. My little girl was born and taken from me immed. and put into "Baby ICU" for 8 days. No one could figure out what was wrong with her left leg..we were sent to Shriners and within a short amount of time they diagnosed my little baby with PFFD in both legs and Fibular Hemimilia in both legs as well. She also has 4 toes on each foot (it made for an adorable birth certificate). I am writing this with tears in my eyes bec/ she is now 3 months old and the bigger that she get the more real her condition becomes to me. I just dont understand how I am suppose to teach her how to be ok with this since I dont even know how to be ok with this..I felt like my husband, myself and my family were the only ones going through this until I found this site. I am so happy to have read the letters from so many. I am so worried that she is going to have a harder life than other kids. I know that I should not say this is not fair since life isnt fair but it just isnt. No child should be born with problems..I would really like to be in contact with others that have children that have PFFD and children that have grown up with PFFD. I am having a very hard time with this. I dont think that I will have any other children bec/ I am afraid that he/she will have the same disorder that Kalyn does. She is the love of my life and I will do anything for her. She is my little angel. "God only gies special babies to special people that can care for them".


Hi hope i find everyone well,
The date for Toms hospital appoinment is approaching the 8th June, i was just wondering if anyone had gone through an Arthrogram at all, and if anyone could let me know what to expect, and outcomes?

My best gift arrive on Christmas day...

Hi my name is sonia and i am the mother of a beautiful little girl named kiara. Kiara was born at full gestation and we found out that she was missing a toe the day she was born christmas day December 25 of 2000, to our surprise Kiara wasn't just missing a toe she was also missing her fibula in her right leg and she had a small bowing and also a shorter femur. Since then I did all the research i could, we visited Children's hospital in Boston and we drove up to shriners hospital in Springfield. We opted to have physical therapy at home and kiara started to walk with a shoe lift at age of 16 months old, She had a small surgery at 11months old to release her tendon and again at age 3. She is now 5yrs old and after meeting with several doctors we decided to do her first leg lenghtening of 8cm. Its a road that its hard to walk on but so far kiaras leg has grown almost 2cm, she has pain and pin care is far from fun...


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