Personal Stories

Hi,
My son has class A or B, a shortened left femur with a fairly stable knee and good ankle. He has an expected discrepancy of 6 to 7 inches at maturity. We have been told he needs a hip surgery before he turns three years of age to stablize his hip. Then have three separate leg lengthening surgeries each probaly three years apart. We are now battling with our insurance company because they want us to stay in NY state and go to doctors who perform one or two of these surgeries per year, and not often on children with PFFD. We consulted with doctor Herzenberg at the Leg Lengthening center in Baltimore who does 3,000 of these sugeries a year, and really feel much more comfortable with him.

Well hello everyone, havent posted for a very long time on this /or the old site.

Just to let you know Tom has turned 4 and doing very well with his Prostesis extension, he can do anything and everything(especially things he really shouldnt be doing).

We went to see the docs for our 6 monthly and there taking Tom inunder GA to do an Arthrography of his hips,, which apparently is a easy procedure to see whats happening.

HAs anyone else been through one of these?
hope everyone is well
Oh i intend to write a personal story at some point but at the moment my newborn is making it rather difficult!!!

My granddaughter Devon Angel was born in October 1998 with PFFD. She was born in a suburb of London. She also had a hole in the heart (which has now closed up). After spending two weeks in Neo-Natal, she was allowed home with my daughter and her partner. Those early days are cloudy for us all as we were all in a state of shock and couldnt understand the complexities of her condition. My daughter is a dancer and Devon`s father a healthy, sporty footballer. How could they have a baby with half a leg? It was beyond our comprehension and filled us all with dread and confusion.
From the very beginning Devon was a fighter. My first glimpse of her lying naked on the "open" cot in Neo-Natal was one of astonishing emotion. With tubes everywhere, a tiny bonnet on her head and a white covering her lower limbs it was hard to imagine anything being wrong with her. She looked so vulnerable. I promised her I would watch out for her and keep her safe - I wanted to put everything right.

My husband and I have some questions for the group about hip surgery (actually femoral osteotomy). Our 3-year old daughter, Allison, has bilateral PFFD. She has a short femur in her left leg (Paley Type 1b) and no femur or hip socket in her right leg, so her right foot falls slightly below the level of her left knee. She wears a prosthesis with a hinged joint on her right leg, and she walks pretty well.

Allison has never had any surgery, but her doctor recently recommended a valgus osteotomy to correct the coxa vara in her left femur (her better leg) and to derotate. We'd like to get some feedback from others who have had experience with this surgery. Allison is not a candidate for lengthening, so the purpose of the osteotomy is entirely to improve her walking ability (i.e., not in preparation for lengthening).

Hi this is Brandy my husban and I had a baby in Oct 2004 with bi-lateral pffd. i just wanted to let everyone know that Tai is doing very well she is now 17mths and is walking around everywhere but still enjoys crawling around on her hands and feet. If anyone else has a child wiht bi-lateral or knows someone with bi-lateral we would love to talk to you about things. I hope all is well with everyone else take care.

Brandy and Brett Dubord

Our son Korbyn was born in 1999, and at the time we lived in Wyoming. Were the doctors are not the best. I went in for my 20 week ultrasound, and they didn't tell me anything other then i needed to go to Billings, Mt to get a 3-D ultrasound. So we did. They kept me over night in the hospital, not telling us anything. The next day I was discharged. But when we got to my uncles house there in Billings, the doctor himself called. He told us that he wanted us to come straight to his office for the findings on the ultrasound. When we got there. There were 6 doctors all sitting in a circle. They then went on to tell us that he would be a dwarf. They sent us to Denver for more testing. When we got there and the testing was all done. They told us he had no left leg. But that there was a foot not conected to anything. They also said it looked like he would still be a dwarf, but that there would probably be some mental illness. They thought at that time that we should termanate the pregnacy. We both said no. We went home, and found another doctor who had just moved to billings. He was a Perinatologist. He was amazing, so soft and sweet. He took us under his wing. By this time I was 27 weeks along. the doctor decided to do ultra sounds every day and tests almost every week. At 37 weeks, my Wonderful son was born he was 5lbs and 15 1/2 inches. But when I looked at him, I thought he isn't as bad as we expected him to be. He was alive and cring. They did all kinds of tests on him. And by late that afternoon he was in my arms. He had 2 toes on his left foot and it was turned backwards and his right foot had 4 toes and was turned to the side. At 3 months old I took him to the Shriners hospital in Salt Lake City. They told us he would never walk that he would be in a wheelchair all his life. We told them that we wouldn't accept that. I then took him to several different doctors. We ended up at the Spokane, Wa Shriners. they said we can do this and this and this. We said OK. At the age of 10 months his feet were amputated. we got his first wet of prostetics at the age of 15 months. It was a long hard road. 3 yrs later. He took his first steps without any help. Just out of the blue. It took our breath away. My husband and I were speachless... Since then he has had his Knee in his right leg taken out and the knee that was growing in his left hip removed. Now his has just gotten his first set of legs with the knees in them. And that was just 3 weeks ago. He is already walking again, without his walker. My son i do believe is a miracle. He has taught me so much. The most important thing he has taught us is to not take things for granted. We would love to hear from parents in the same situation as us. Our son is now in school, and I know soon he will start asking ?'s Maybe someone out their can give us some ideas on what to say. our e-mail address is kevnlissa2001@yahoo.com

I was born with P.F.F.D, Aiken Type I, and coxa vera. After careful consideration my parents decided that they were not going to go ahead with an amputation which was suggested when I was a toddler.

I have had various surgeries including the following:

(2 years)- Valgus Osteotomy - right femur

(3 years)- Repeat Valgus Osteotomy - right femur due to loss of fixation

(9 years) - Left Distal Femoral Epiphyseodesis

(12 years) - Sutherland Double Innominate Osteotomy and Ileoposoas Recession

(13 years) - Ilizarov Leg Lengthening

(27 years) – Total Hip Replacement

My femur discrepancy was approximate 18 cm. I have a lift on my shoe, and have had surgeries including lengthening of my short leg and shortening of my long leg.

I am a 26 year old woman with PFFD. I am one of twins, and my twin brother was born with no abnormalities. I grew up a very normal life, and never let my condition rule my life. I received my first prosthesis when I was 1 years old. I have always been very active and received a new prosthesis about every year. I had my first and only surgery when I was 19 years old and that was a partial amputation. It was to allow my prosthesis to be more comfortable. I am now married and my husband and I are discussing starting a family. I would love to hear from other women with PFFD. I am nervous about possibly having children as I'm unsure if my hip could stand the extra weight. I just found this site today and I'm excited about hearing from others just like me!

I have attached some pictures of Olivia and her prosthesis (the same one she got in October 2005). These pictures were taken on Jan. 5, 2006 when Olivia was about 19 months old. The first 2 pictures show her prosthesis. The 3rd picture shows her without her prosthesis. The other pictures show her wearing her prosthesis.

First of all let me start off by saying hi. My son Landon (2yrs old) has PFFD (class c). He is walking, runing climbing, doing everything any other child does. Right now his left leg is 4 inches shorter than his right(he uses a lift on his shoe), but as time passes that difference will become greater. He is also missing his fibula and the ankle causing him to have a club foot that cannot be corrected by surgrey. Along with this he is also missing his left arm above the elbow and his right arm below the elbow with 2 little fingers. However he does really well with what he has.

I am wrighting to ask for you imput. The doctors are now talking surgrey. Shriners wants to amputate his foot. The reason they gave me was because emotionally it will be better if he was younger when the amputation took place. I not sure if I can see there point. I guess I keep thinkin in my head that maybe five years from now a new procedure will be developed that may better help him. Besides it is my baby's foot (and I love it very much) He also has no hands so I don't see the point in taking a foot off that he uses. Has anyone had experience with amputation?