As with many families who have a child with cerebral palsy, for many years the family were not even aware of the existence of SDR surgery. They first became aware of it when, by chance, they saw a daytime television show which referred to the procedure. It is a sad fact that treating doctors do not always bring the SDR procedure to the attention of parents and their children who have cerebral palsy.
The television programme prompted the parents to carry out their own research. Their daughter suffers from a type of cerebral palsy involving bilateral spastic diplegia. As explained in the first article this type of cerebral palsy includes a loss of control in the leg muscles. This gave their daughter serious problems with mobility.
The parents soon discovered that their daughter seemed to be a candidate for the SDR procedure. However, before being considered for the surgery she had to undergo a trial of “botox” injections. The technical term for this is botulinum toxin injection therapy. It is used to treat dystonia, the condition that produces involuntary muscle contractions, especially of the leg muscles.
After the botox injections the parents were told that their daughter would be an ideal candidate for the surgery. The little girl in question was aged three at the time. She was unable to walk unaided or unsupported. Needless to say this was affecting her quality of life significantly. Her parents wanted to do all they could to improve her mobility and see her begin to walk.
Sadly, they were told that the SDR procedure could not be funded by their treating NHS Trust. They took it upon themselves to start a fundraising mission to pay for the surgery.
To start with, the possibility of raising enough money seemed unachievable. They were told that the cost of the SDR procedure would be £12,500. This had to be paid upfront. They were told that the rehabilitation in the first month following the surgery would cost £3,000. Following this there would then be extensive physiotherapy sessions a number of times a week. There would be frequent stays in residential physiotherapy clinics. They were told there was no guarantee of success and there were risks involved in the surgery.
They came to realise that they needed to raise funds in the region of £20,000 to £25,000. The prospect was daunting. They had their work cut out but were determined that they would raise the money required to give their daughter a chance at being able to walk. Family and friends rallied round. Raffles, quizzes and open days were organised. Through generous donations they eventually raised the money needed and the procedure went ahead.
When the surgery was being arranged, the little girl found it difficult to understand what was happening and why – however, she did not complain once!
It is now six months since the operation and it has been a tough six months. The family has been backwards and forwards to physiotherapy at least three times a week and has had frequent three day stays in a residential physiotherapy clinic. Most of the physiotherapy sessions are carried out by a physiotherapist specialising in Paediatric Neurology. This level of input needs to continue for at least twelve months after the operation, if not longer. Without this crucial follow up therapy, the full benefits of the operation will not be achieved.
The little girl has recently had her six month review. Her prognosis is positive. Even at this early stage, the results are noticeable. Her legs are less stiff. She can walk with a frame. The pain and discomfort which she used to experience have reduced. She still has a long road ahead of her but everyone involved in her care believes she will recover to the point where she can walk unaided.
Of course, the strain on the family has been considerable. There has been the stress of the fundraising, the risks involved in the surgery, the operation itself, the continuous care required after the surgery, and the residential and home based physiotherapy. However, this family feels that, even from the results seen so far, it has all been worth it. They are now waiting for the day when their daughter takes her first steps on her own.
The family sympathises with those families who may not be able to fundraise as successfully as they did. If successful, the surgery can significantly improve the quality of the child’s life. We agree with the family in question feel the SDR procedure should be available to all children who would benefit from it.
Staci Liversedge is a volunteer committee member for the Hull and District Cerebral Palsy Society and a specialist cerebral palsy lawyer at Bridge McFarland Solicitors.