Callum's Story

My little superhero Callum was born a healthy little chubby baby on the 19th august 2004, we knew that Callum may have NF because i myself have NF1, some people may think its not right to take the risk but im just like any other woman in the world i wanted a family. Callum started having CALs appear at about 6 weeks old so we knew then he did indeed have NF.

When he started to walk his left leg would swing out in a really weird way so we took him to see the Gp who then referred us to the local paediatrician, would you believe on the day we went callum fell and broke his tibia, at that time we thought Ok it a broken leg, well be in plaster 6 weeks and that will be the morning we were met by a consultant with x rays in hand who sat us down and told us he suspected Callum had something called Pseudoarthrosis but he was not sure and didnt know a lot about it so wanted us to go and see a orthapaedic surgeon .

We finally got to see the consultant who confirmed callum ddi indeed have Pseudoarthrosis, he had tears in his eyes as he told us his leg would likely never heal, would be weak, could refracture amy have to be amputated, to be honest our brains weres pinning with the info but we knew we would do everything to help our beautiful boy

Treatment started soon after the first procedure being rod insertion and back in plaster, this was good for 8 months then he had another rod inserted and a clamshell brace on which he loved and showed to everyone because it had Teletubbies on it which were his very favourite!, another 8 months and another rod inserted and back into plaster this time as callums brace had irritatyed his skin , by this time the consultant was recommending external fixation which really we did not want it looked so intrusive, so heavy and painful so we put it off and agreed it would ahppen when callum was past 4 years old.

In the meantime another rod was inserted by this time Callum was making noises about being fed up with the constant appointments, operations and so on and tbh we were nearing the end of our tether too.

The time finally came for Callum to have his ilizarov fitted and we honestly almost didnt go through with it, but we decided we could have one last go at trying to save his leg. The operation lasted 10 hours, during which he had bone grafts taken from his hips and grafted into the leg, the rod was replaced, and he had the fibtransfer, also some skin grafting from his right thigh to his left leg necause scar tissue ahd to be cut away so skin was needed.

he was a great deal of pain when he came round but was given morphine and seemed to settle, they started PT on day 3 and also started lengthening and cleaning the pins which sent callum through the roof it was so painful for him.

Things really didnt improve, he had infection after infection, because of this lenghtening was bad and we had to stop 2cm short.

Callum had many hosp stays and got IV antibiotics the longest stay was 6 weeks during which he had rod replacement and debridement and antibiotic beads inserted into his leg and then we begged for the frame to be taken, , i could not watch my superhero get a bit more quiet every day a bit more withdrawn.

The consultant finally relented and removed the frame in july this year and callum picked immediatly he walked that day, and was home the same night .

Since then Callum has done well, he is a happy, chatty , extermely bright and loving boy and all he wants is to run and play, to go to football practice with his friends but he knows he cant and he knows the only chance he will ahve of this happening is Amputation, he longs for it, we want it for him, i pray to god every night it will happen.

Also this week we learned Callum has refractured the leg, he didnt feel it and isnt it any pain, but slowly our Doctor is seeing amputation really is the best thing,


Written by P.W. 21.10.10