Hi my name is Julia, our family lives in Australia.
My Son Christopher turns 15 today, he has unilateral PFFD. I have only know the correct diagnosis for over a year, and only found out while we were searching for information on Van Ness Proceedure.
Christopher has met other kids with limb differences but no other that has the same or closely the same as him, i suppose due to our smaller population.
Chis is my second child, my pregnancy had it problem's, at 7 weeks i started to bleed, which resulted in a scan to reveal a twin pregnancy, and we had lost one, but the other remained, i then went on to have a large blood loss thinking that the other fetus had not survived, so we had another scan to reveal that he had survived. I still remember this day so vividly, we were to have a routine scan to check if all was ok, during the scan we asked if were having a boy or a girl, and we were told it was a boy, there was a very small moment dissapointment when we were told it was a boy, as my first born was a born and i was really hoping for a girl, but soon we were to be told of a problem, the radiographer left the room in a hurry and I immediatley was aware of there being a problem, and as time unfolded we were told that our son had a limb difference, due to his position in the uterus they could not do a diagnostic scan, and we were sent home to return the next morning to hopfully recieve futher information, Waiting over night was so difficult. The next day they were able to scan and give us more information, they told of a short femur and that there was only one bone in the lower leg. We soon were seeing a obsetrician, who offer temination as a choice, which would never have entered my mind, and then we had an amniocentisis to outrule any other problems.
We were lucky to meet our orthopaedic surgeon from the Adelaide Childrens Hospital while I was still pregnant, he then planned to see us soon after Christopher was born. We are from a town 400kms away from Adelaide, so we had to travel to have our son by planned c- section. Probably there are may of you who knew before birth that there was a problem, but i so remember how my imagination took over, how this leg was going to look and that my son was not going to have a normal life, that he will not be able to walk etc. The day the we were able to see him was just beautiful and to see his little leg and let my imagination go and hold him in my arms and celebrate a new life.
So 15 years later, 2 lengthening's, and still not knowing what road Christoher will take, he still has a 25cm difference, he is not keen to have a ilazarov frame again and he is not able to have lengthening by using a "fitbone" which is an internal fixator for lengthening which our surgeon has introduced to Australia, originally from Germany. Knowing of the complications of lengthening, which we experienced.
When he was younger we had to make the decisions to lengthen now we are ready to support Chris in was choice he makes.
We welcome anyone who would like to swap experiences or need support, or become a chat friend with Chris.
our e-mail address ianjulia@hotmail.com
Comments
christopher
I live in Mackay Queensland Australia which is a reasonably small city. My daughter Cobi was born almost 19 years ago with unilateral PFFD. I have always thought over the years that Cobi was in good hands medically. Cobi had the Van Ness Procedure at age 4 when her right ankle was almost equivelant to her left knee. It was performed in Melbourne by a brillant surgeon Ian Torode. She had no say in this choice but we all feel that it was in her best interest. As she was only 4 it was an easy and natural transition for her. She knows no difference.
Almost every 6 months of her life we have travelled to Brisbane to have her artificial legs made. (approx 30 to date) I have always had great faith in her limb maker but until about 2 years ago was unaware that he had never seen an xray of Cobi's leg or non-existant hip on her right side. This has put an entirely different slope on things and left me feeling that more could have been done for Cobi if we had more knowledge and expertise help. However that is now history.
Cobi has always taken everything in her stride. We never regretted the Van Ness Procedure because it gave her a bending "knee joint" rather than an artifical bend of an above knee prosthesis. She has never once said anything negative about her condition and has never complained in her entire life about her disability. She never fails to amaze me.
About 6 years ago Cobi was reluctantly introduced to Wheelchair basketball and is now in the Australian Woman's Basketball Team. She has travelled the world and experienced things most people have not experienced in a lifetime. Next year she hopes to represent Australia in the Para Olympic Games in China.
Lengthening was never suggested for Cobi. I guess the discrepency between her 2 legs was too
large. She walks with a limp (gait) as she has no hip and her leg moves freely up and down as she weight bears on that side. She has since had a prosthesis made to weight bear under her buttocks which alleviates this movement in the "hip" area.
I will pass on Christopher's storey to Cobi. I think it would be good for them to correspond. She has had plenty of opportunities to talk to other physically challenged people but not one with pffd She will be home for a 4 week break in 2 weeks and I can't wait. Cobi has 2 older brothers and a younger brother who is 11 and they are all proud of her.
A nurse in maternity said to me when Cobi was born that she would be a special little girl that has an impact in this world...... At the time I thought.....Yeh right, of course u are going to say that. BUT.....
I am sure Christopher is an inspirational young man who makes you proud every second .
They make you aware of what is really important in this life.
Regards Catherine Jones