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McKenna's progress during limb lengthening...

Hello Everyone!!

Our little girl McKenna was born on July 7th, 1997, and was diagnosed with PFFD, class "B", right leg only. Just about 2 months before she was born we were in for a checkup and they did an ultra sound to detect her size as her older brother was over 10 lbs at birth. Everything looked fine, but then the nurse doing the exam noticed something and called in a doctor to confirm her findings. That is when we were thrown into the world of PFFD.

We were shown old black and white photos of children with varying classes of PFFD, and most of those photos also showed other birth issues not related to PFFD. We were shocked, scared, and confused about why this happened to our little girl. One doctor at the hospital did hand us a card for a limb lengthening hospital in St. Paul, MN. and said to contact them once our little girl arrived. We did, and once she was around 3 months old we brought her in for an evaluation.

Johanna - our daughter with bilateral PFFD

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

What to do next?

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 .

Adult with PFFD

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

a good prostheticist is worth his weight in gold

I've probably had 8 to 10 legs over the years, and I have to say it's all about the person making the limb. I've had good and bad legs, and it always boiled down to how well the person listened to me, and followed my directions. I've had those with the "I know what I'm doing" attitude and it's never failed to be a miserable experience. If you're getting a lot of resistance from your supplier, find a new one that cares about YOU. It can mean the difference between everyday comfort and everyday pain.

One Opinion After Another

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.

My Angel From Heaven

My child was born 16 weeks early weighing only 1 pound and 8 oz's. She was given a 20 percent chance to live. She did well and in 3 and 1/2 months came home. We knew nothing until she was almost one year old. She kept tripping over her left leg. That's when we went to a specialist and they said her left hip socket and ball never really formed. She's had hip surgeries and her left leg is 2 inches shorter than the other. She soon will be 12 years old. Her latest surgery was stunting the growth of her good leg, which was done almost 2 years ago. We had the option of lengthening, but since the doctor figured she would already be tall, he felt shortening the good leg would be a better way to go.

Teen with PFFD & Van ness

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.

So Many Questions

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.

What to expect next?

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?

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