In order to understand Selective Dorsal Rhizotomy (SDR) it’s helpful to understand a little about Cerebral Palsy. Cerebral Palsy is a term that covers a very wide range of conditions that can happen in the brain causing some degree of damage. The effects of this damage to the brain (cerebral) are usually to affect movement (palsy) in some way. In Xavier’s case he has the most common form: Spastic Cerebral Palsy (SCP), common to about 80% of all cases.
Babies born prematurely are vulnerable to the trauma of birth, but Xavier had complications and suffered a bleed in the brain. His injury has caused the nerves that connect the muscles and the brain to communicate abnormally, and his leg muscles are constantly tight (spastic). Children with SCP often have delayed motor development – many could end up walking very well, but it’s this constant tightness that stops muscles developing properly, prevents normal walking and mobility, causes muscles to tire very easily and be very weak. Throughout his life it will be this constant pull of the muscles combined with the abnormal forces of poor posture and gait that will lead to contractions that will need surgery to lengthen the muscles and tendons, as will the deformities that will occur. Like many parents we were told “There is no cure for Cerebral Palsy”, which is true, so the medical management in the UK is physiotherapy, occupational therapy, splints, Botox and surgery when necessary for the rest of his life.
Except, thinking further, the problems children with SCP have throughout their lives are not from the brain injury, but from the effects that this injury has had, causing abnormal communication between the muscles and the brain. In fact there is something that can be done, and it’s also very successful.
SDR is a neurosurgical procedure that involves removing a section of the spine in the lower part of the back to expose the spinal cord and spinal nerves. The surgeon uses equipment to seek out the nerves firing abnormally and severs them permanently. This results in reduced spasticity.
The risks and complications of SDR surgery are incontinence, paralysis and pain. But, the surgeon-in-chief at the St Louis Children’s Hospital in the US, Dr. TS Park, has performed this operation over 2,300 times over the last 20 years, including over 100 children from the UK. There have so far been only four cases of children having a complication requiring further surgery, and not a single case of long-term complications as far back as 1987.
Whilst SDR is relatively unknown in the UK a team have been trained up by the Americans and in May 2011 the first SDR operation was successfully performed in the UK on the NHS at the Bristol Frenchay Hospital. Due to funding only 1-2 operations are performed per month. Approximately 2000 children are born every year with Cerebral Palsy. One day SDR will be performed on all the children it would benefit giving them the gift of walking, independence and increased opportunities. Sadly, this day will come far too late for almost all children for whom this surgery can presently help. We need to go to St Louis, with your help.
Following the surgery approximately 5 weeks of intensive physiotherapy are required in America before returning to the UK where many months of intensive physiotherapy are needed. Return trips to America for post-surgical evaluation and check-ups are also required. For children having SDR this is not the end of the journey, but the beginning, and if the St Louis team’s prediction for Xavier is anywhere near accurate (and it has been for every other case we have looked into) then the future may start to get a lot brighter.
You can follow this link to the St Louis Children’s Hospital to find out more.