Neville's Story
NEVILLE'S STORY
Neville has just turned 12 . As with all the other stories I have been priveledged to read at the pffdvsg site , the road has not been an easy one . Unfortunately , there is no clear finishing line and one just takes one day at a time and overcomes challenges as they occur . Neville has used a prosthesis when not at home since he began walking . He has had one surgical attempt at stabilizing the hip , but otherwise all the bits and pieces are still in place and appear set to remain that way . The dilemma of course is that prostheses become cumbersome as one grows . Neville is currently growing at a tremendous rate and becoming quite muscular !
INTRODUCTION
I believe that God has a plan for each of our lives and look upon Neville's condition as both a challenge and a learning experience for everyone involved. He is presently well adjusted and happy , although the challenges faced in the classroom etc. take their toll ! Our family is pretty outdoor orientated . We spend a lot of time waterskiing over the weekends . Neville loves being towed in the tube behind the boat . He has a beautiful sister aged 8 whom he adores (although he would never admit this ) and who has offered him excellent companionship.
Reading the articles on the pffd site has been a wonderful experience and I am sure that through sharing of experiences the road forward will become more clearly defined .
Neville has a short femoral stump . It was not clear initailly whether there would be any chance of leg lengthening , and the options of the Van Nes opertaion and amputation were discussed . I still have difficulty committing to the concept of amputation or "reversed" feet.
THE FIRST PROSTHESIS
Neville learnt to walk with his "walker" . Amazing how small that first prosthesis was when looking at it now ! The foot was angled forward so it didn't stick out too much . Without the walker , he moves around very efficiently by hopping and every now and then walking on the short leg . The walker's are solid and were designed to take the weight on the backside to enable walking in a fairly upright manner without too much strain on the back.
SUBSEQUENT PROSTHESES
Neville has had about 8 prostheses through the years . They have all worked fine and only needed minor modifications from time to time . The last one I have lengthened 3 times myself due to cost constraints . ( My medical fund excluded Neville's condition from my cover ) Prostheses also don't come cheap in South Africa with all the materials and attachments being imported . The current exchange rate has made the situation ridiculous.
Currently we seem to be running out of ideas on the prosthesis front , and Neville has had to cut down on the time spent wearing the prosthesis due to the discomfort he experiences sitting for long periods . There has also been mention of some back pain .
THE BIG DECISION
When Neville was about five , the orthopaedic surgeon detected development of the growth plate on the hip and slight growth of
the femur. Talk turned to the possibility of fusing the femoral stump to the hip , with the possibility of future leg lengthening . After a few more consultations it was decided that this was the right thing to do , as it offered the possibility of stabilizing the hip , and minimizing the characteristic pffd "rolling gait " in the future.
Pffd I have found to be such an overwhelming condition that emotional capacity and the capability for rational thought is quickly consumed. Having decided to operate , we just stumbled towards the appointed date while making the necessary arrangements .
THE SURGERY
Unfortunately the surgery was not successful , and left me in the kind of state where about all you can manage to do is put one foot in front of the other !
The doctor operated twice and Neville was immobolized in the traditional body cast. Neville bounced back exceptionally quickly. I was very scared one night when sleeping in the hospital and he became incoherent due to the pain killers .
At home Neville had a low square platform with a fully castoring wheel on each corner and was soon hurtling around the house in characteristic style.
At this stage one believed that when the cast was removed all would be well and I told Neville this . Cast removal day arrived with high expectations and humour . It turned out , however to be one of the most devastating days of my life when the x-rays revealed that the fusion had become displaced.
RIGHT NOW
Neville has reached a stage in his life where the reality of the situation is hitting home. I am not sure at what age people with pffd fully understand what is different about them , but Neville will probably carry emotional scars from the dilemma of the current situation.
His schooling has suffered a bit , although he continues to achieve excellent results . He nevertheless has a smile on his face and is happy with his lot . I've learnt to take events one day at a time, and hope that we will be able to learn from others experiences and that they may gain something from ours.
Graham Wright