The messages from his brain that tell the muscles to relax do not get through to his leg muscles, due to the damage to his brain from before birth. He walks on his tip toes and his legs give him a lot of pain. He cannot stand still and falls frequently. The constant tightness in his legs lead to limb and foot deformity and if left untreated he would likely be confined to a wheelchair by his teenag
e years. He has to wear splints on his legs every day. We have learned of an operation performed in America successfully on children with very similar conditions to Thomas’ with outstandingly good results. The operation is called Selective Dorsal Rhizotomy (SDR) and involves a neurosurgeon chipping a single vertebrae in Thomas’ spine to gain access to the nerves in his spinal cord. They then painstakingly identify the nerves are causing the spasticity in the muscles and they cut them. This has the effect of relaxing the legs and allowing the child to stand normally with flat feet. Usually, it is also necessary to lengthen the heel cords (tendons) and hamstrings in an operation two weeks later as they have not grown as the child has due to the constant contraction of the tight legs. The procedure leaves the child very weak as they have never used the correct muscles for standing and walking as muscles before – they were rigid. Therefore the child requires at least a year of intensive physio to strengthen their legs but then they can walk normally. In December 2010 NICE which is the NHS body which approves new techniques and surgeries found that SDR was a safe procedure and could be used on patients in the UK. As yet, the UK has little expertise, but Dr T S Park at the Children’s Hospital in St Louis, USA, has performed the procedure more than 2,000 times with a 100% success rate. We have visited a 10 year old boy from Hartlepool who had the operation in October 2010. He is now 5 months post op. Before the operation he was just as badly affected as Thomas. He can now stand still with his feet flat on the ground, walk beautifully and (best of all in Thomas’ eyes) he no longer has to wear leg splints to hold his feet in a good position. We are convinced that the SDR operation will transform Thomas and ensure he can live a full and independent life which is what every child deserves the chance to do. David Hughes (Thomas’ Dad)
