Coop's Journey

Cooper was born with Fibula Hemimelia – a condition that varies in severity from one person to the next.  For Coop it affected only his left leg, meaning a complete absence of the fibula bone. His foot and ankle on the affected side did not form as they should and his knee  was absent of cruciate ligaments. His biggest challenge came from the leg length discrepancy as the affected leg grows shorter than his other. Many of these differences made little impact to Cooper, he excelled in sports and activities and during his primary school years, he played in a number of sporting teams.  Over a ten year period Coop would be checked by the orthopaedic surgeon who recommended even in his earliest years that Coop would be a suitable candidate for leg lengthening surgery to correct the length discrepancy that increased each year with growth.  Until this surgery, he would manage with raises that were fitted to his shoe and a lot of tip-toeing on the left side. Last year Coop underwent his first leg lengthening surgery because it was becoming more apparent that he took longer to recover after sporing activities.  He would be in pain in the following days. Most noticeable was pain in the calves, achilles tendon and planter fascia of his foot, and would regularly see Coop be unable to do after school sports on back to back days.  By this time his leg length difference was 7cm!! His favourite sporting activity is basketball. Surgery occurred on 13th March 2019 and it was hoped he could gain 5 to 6 cm.  It involved the tibia of the left leg to be cut and then stabilized with an external fixator.  During the first phase, the two sections of the bone were gradually pulled apart to promote new bone growth in between.  For 6 weeks Cooper and his family would adjust the struts of the frame 3 times a day to grow 1mm of new bone. The second stage was to keep the frame on and let all the new bone consolidate as well as let all the stretched muscles settle in.   Coop experienced great difficulty in getting mobile again, then just 3 months post surgery he obtained an infection in his knee, admitting him back into hospital for a week and requiring him to take a course of anti-biotics until mid November.  It wasn’t until July that Cooper was able to transition to crutches. With very limited knee bending during these months it became concerning that he was permanently losing range of movement in his knee. In September, he suffered some fractures during the surgical removal of the frame because his bones had become so soft with little to no weight bearing since March. In November when the final stage was complete, the plaster was removed, it was discovered that Cooper’s knee had sub-luxed (partially dislocated) and was filled with scar tissue.  While the lengthening of the bone was successful and 5cm was achieved, he was at the finish line with a flexed knee that he could no longer bend or straighten and ultimately couldn’t walk on. After a number of meetings and a second opinion interstate, it was determined that the only way to correct the knee was to undergo further surgery using another external fixator. This time to straighten the leg, and beyond this the task of regaining movement in the knee would begin. The fixator was going to be larger than last year’s and was going to be rather cumbersome. The surgeon’s indicated that this is an unusual outcome for this procedure and therefore a collaboration of surgeons was required to confirm the correction method. While they indicated there was a good chance of correcting the limb, it was uncertain how much range of movement he would eventually gain back.  It was unlikely he would obtain the movement he had pre-lengthening surgery. The six months of external fixator last year was terribly difficult for Cooper.  He went from 100% mobility to zero which was the biggest challenge to accept. He lost independence to many daily tasks, it was difficult to sleep, manage temperature changes and pain.  Getting in and out of the car, driving short distances was hard, and this meant leaving the house was a rare occasion. This led to feeling isolated and depressed. It was horrible to watch from the sidelines as a parent.  Trips back to the hospital caused significant anxiety, his blood pressure was being monitored frequently due to it being elevated and he was taking 18-20 tablets a day for varying needs including nerve pain, antibiotics, high blood pressure, muscle spasms and general pain.  Finding a physio that could work with Coop at home became an unexpected expense that we decided was needed to avoid returning to the hospital.   The procedure was a big commitment and even at its completion we were not able to see the benefits of what the new length had achieved.  He was not even able to see the reduced leg length discrepancy because by the end he wasn’t able to straighten his leg to compare. Despite agreeing to undertake surgery to fix his leg in February this year, in the weeks leading up to the surgery we began researching alternative options. After a number of discussions and meetings with a Prothetist and two amputees, Coop made the tough decision that he wanted to take the amputation path instead. Surgery for amputation is scheduled for July and there are many unknowns we are yet to discover. Choosing amputation whilst comes with many risks, will hopefully eliminate further surgeries in coming years for Coop to correct his limb and hopefully will have him return to life slightly sooner.He simply wants to get back onto the basketball court as soon as he can. Coops journey is not over yet, he faces some huge challenges following the surgery. Once recovered from the surgery itself, Coop will need to learn to adapt to a new life without his leg, learning to walk with a prosthetic, physio, rehabilitation plus so much more. Your donation to Coop's Journey will help Coop and his family with ongoing medical costs and the most important task of seeing Coop smile. Thank you for your support! Cooper's journey has been documented on [email redacted]9 in a hope to not only update friends and family of his progress but to inspire others who may be going through a similar experience.