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I am the mother of a 28 year girl who was born with PFFD. At the time of her birth ultrasound was not being used that frequently and I had no problems so none were taken. It was a total shock when she was born with a very short leg. The orthopedic doctor came in and told me that she would probably have to have her leg amputated and she would probably not walk. Of course we were devastated but after consulting with a pediatric ortho we were told this was not so and she would lead a pretty normal life. She was just a beautiful litlle girl and we took her home and loved her. Our son was 3 at the time and he just loved his baby sister. She walked with the help of a prothesis at 18 months and then when she was 4 years old she had the Van Nes Rotation. She has always been a very determined strong willed child and she showed many of us that she could do anything. She was an excellent student at school, started playing the violin at age 4, piano at age 6 and singing. She went to NAIT and was the poster girl for their magazine as well as advertisement on the buses. She graduated with honors in Accounting but decided she wanted to pursue teaching with specializing in Music. She graduated with distinction and has a wonderful job teaching 425 elementary students in a public school in Edmonton. I can't imagine our life without her - she has exceeded all expectations and has taught me so much as well. When she was going to school I never covered up the fact that she had an artificial leg. In fact we always brought her "legs" to school for show and tell. The kids never teased her or made fun of her. She was always well respected because we were so open to letting people understand her disability. We belonged to the CHAMP organization which helped very much in the early years. Many children in the organization are born with many limb abnormalities and they lead very productive lives. CHAMPS is still helping with the cost of extras that aren't covered by Alberta Health. When my daughter was born there were only a couple of people who had the Van Nes Rotation so it was a very big decision to make for her but she has been very grateful that we did make that decision. Her foot acts like an ankle and she has a pretty good gait. The kids at her school now even say when she is wearing a dress and they can see the prothesis -" our teacher is wearing her leg today."
I just want anyone that is expecting a new baby and finds that they are faced with PFFD to please send us a message so we can get in touch with you. Both my daughter and I would love to talk to you and see how living without a limb is not the end of the world. In fact my daughter has always said it has made her a stronger person and I can't tell you how it has changed my life.


Hello Roberta, thank you for your story all of these are so helpful. My daughter (Ella) is 10 weeks old now, and I too have a son who is 3 years old (Ethan). We are researching and trying to make the best decision as possible for our daughter. With the Van Nes procedure your daughter had is her foot on backwards? We also have the option of the Leg Lengthening and foot amputation as well. Was the Leg lengthening available back when she was an infant?

I was going crazy when I found out, but this blog has HELPED so much with everyone's stories and information. Thank you again for your note.

Christa Clawson feel free to add me to face book if you are on it.

Hi, Our daughter will turn a year on the 3rd aug and I did go completely crazy when I found out what she had.... It is a really big situation to deal with as parents because we are taking the decisions for them... Rosaly our daughter is now trying to stand up on her own even though she has a 6 cm difference between both legs...she is adorable and at age 3 she will get the lenghtening and straightening of the femur bone surgery and I am confident this is going to work. Have they told you that this surgery was a possibility for your daughter? I know how you feel and this website is helping me a lot too.

Marc Is this surgery that Rosaly will be receiving the same as the Leg lenghtening that happens everything she grows with the large brace on her leg.

My daughter is 6. When she was 15 months old she had a symmes-boyd amputation on the right side because she was not eligible for lenghtening. She has been wearing a prosthesis since she was 18 months old. She does everything my two older kids do. She has been having alot of trouble here lately and I am not sure if it is due to her growing or the prosthesis itself. Her femur bone is almost nonexistent. She will be having a surgery with in the next year to fuse her knee and to stablize her hip. We have also been very open about her leg. And when she started school, weel even before she started, we went and talked to the other children so they would understand. Before she went, we went to her sisters classrooms and talked to them. We go to Shriner's hospital for Children for all of her needs.

My name is Kari and this July my son will be born with a short femor, one bone in his lower leg and club feet. Here, in Tulsa, OK, they know very little about it and they want to send me to a shriner's hospital. I will seek treatment for his club feet right away but should i wait to do amputation until he can make the choice? I don't know if he would qualify for limb lenghting and mutiply surgeries far from my family doesn't sound too good right now. I'm interested in hearing about different options and how kids born with PFFD feel about their parents medical decisions now that they are grown up. Every time I see my other kids doing things I wonder if my soon to be born son will ever do those things. I want to do what is best for him but I'm not sure what that is right now and probaly won't know until after he is born. Also, I'm not sure how to tell my family about my son's condition. My husband knows, of corse, but my parents and our other kids (ages 7 and 4) do not know. Any info would help. Thanks.

Physical disabilities like PFFD are rarely life threatening so you have a life time to make big discisions about treatment. Collect info, give birth, enjoy your child and let your child show you what is needed and not needed. You'll know more and feel more at easy as you see what is hard, what is easy, what is limiting and what is not.

As far as telling family, you know them better than we do, perhaps start with those who you know will share this difficult time and be supportive. Then inform others after you have you support group or cheer team.