Personal Stories

My name is David Bailey and I was born on June 14th 1976.
I was a premature baby weighing just 2 lbs 5 oz's!
It was obvious from birth that I had congenital deformities bilaterally, 3 toes on my right foot, and 4 on my left foot, and my right leg slightly shorter than left. I was also born with only 1/2 my left arm.
I was put up for adoption from birth, as my biological mother was only 16, and had kept the pregnancy secret from her parents and I think my biological father, and with my disabilities and no parental support from either set of grandparents, she thought that would be best for me.

My husband James and I have a little girl called Jessica. She is 22months old and has Bilateral PFFD. She appears to have a rare type as she is missing several bones and the precise anatomy of her legs is currently unknown. She is missing the fibula but has feet but no ankle joint and is missing her little toes. She either has a tiny femur and tibias or a hip joint and femur. There is currently confusion about this.

Despite all this she is very mobile and gets around on her hands and feet - bear style. Her latest trick is to lift her body weight on her hands and flip herself over onto her back-effectively doing somersaults. It scares me silly but she thinks it's hilarious!! Nothing stops her and she has a will of iron. Is this a common trate? :)

Olivia was born on June 11, 2004. We learned at my routine ultrasound while I was pregnant with Olivia that she would be born with a short left leg. Her left leg is about half the length of her right. Her left foot is at about the same level as her right knee. I don’t know the classification yet, but she has a short femur and fibular hemimelia.

We met with 3 pediatric orthopedic surgeons before choosing Dr. Herzenberg and Dr. Paley in Baltimore.

Hi! Johanna is now 5 years old. She has bilateral PFFD, also complicated by a foot which turns outwards and no right hand. Johanna is not walking. We are very keen to hear from any and every other children or adults with bilateral PFFD. We have lots of questions about treatments, what we can expect etc.
Please get in touch!

lewang@nznet.gen.nz

Hi I am a father of two beautiful boys the youngest one born in July 2003 with pffd.He is a dream come true. He can probably climb better than any kids without this condition and along with his older brother light up our lives. He is penned in for lenghtening in September this year. The problem is that it is very diffucult to make a final decision to go ahead with this operation. The difference to date is approx 6cm. At full growth it will be 20+ cm. Does the end justify the means? Each time we speak to our surgeon the future looks bleaker, and living in Ireland there are not many people with this condition and therefore no support groups .

I am a twenty eight year old female with bilateral PFFD. I'm interested in hearing from other adults with this condition.

My daughter was born in October 2004. She is beautiful and already very determined. She has unilateral PFFD, Akins class D (no femur or hip socket). We have already been able to find out so much about treatment options. Thank goodness for the internet. We have researched all the possible options from no treatment (prosthesis alone), to foot ablasion, and Van ness. We have seen 3 different surgeons. All of which give a different opinion on which surgery would be best. I have seen two different prosthesist which both advise leaving the foot intact but one says to do Van ness and the other says leave the foot as is.

Hi all,

I am here to tell you about my daughter Kayla.

When I was 3 months pregnant with her they gave me an ultrasound. They told me that her right femur was not there. This scared me to death. Then a month later the doctor's ran all kinds test to see if there were any other problems with the baby. They tried to tell me to abort her because she might be autistic or have downs or other problems. But my friend that has a downs daughter told me GOD only give you what you can handle. So I had Kayla on March 2,1992 and when she was 3 month old I took to U of M Ann Arbor to see Dr. Lenard. He is the one that told me that we could not lengthen her leg but we can do the Van ness Rotation. That is what I thought would be best for her and we did this when she was 3 years old. Now every 3 years or so we have to rotate her foot backwards again do to the muscles try to pull it forward. Kayla is a very active young teen she roller skates, plays basketball, swims and plays softball for her school. I would love if any other teens with these similarities please email us at tlathrup@comcast.net and we can get them to chat with each other or if there are any other parents would like to talk I would be glad to.

Our baby girl, Nicholette, was born in 2003. She is diagnosed with Fibular Hemimelia. We are seeing Dr. Widman in NYC who said that the solution will be a leg lengthening. We do not have a lot of information about this topic. If you have any insight or if you have any experience in this matter please contact us. As of right now she is predicted to have about a 10cm discrepancy. They are saying one operation definitely but maybe 2. Nicholette’s ankle needs support so we are always looking for high-top shoes to give her more support. She has not been put in a brace at this time. The docs still want to wait for that.

My 8yr old daughter had her first lengthening done in May 2004. She will be getting her external fixator taken of this Wed Mar 23. We were able to grow back 6cm during the lengthening. We found out last month that her knee has dislocated posteriorly. We will be going through some very extensive surgery to realign the knee and balance the tendons of the knee. We may even end up have to loose some of the length we just grew back. I was wondering if anyone else has seen or heard of this before, what to expect and some helpful tips on how to help my daughter get through this?