A tough start
Daniel was born in September 2007, following a very difficult pregnancy and arriving over two months early. Daniel was conceived as one of a pair of twins but sadly his brother died in the womb at 19 weeks of pregnancy, and Daniel was delivered at 30 weeks due to an infection that later developed. He was only 3 lbs 7 oz (that’s 1.6kg) and he was rushed straight to the Special Care Baby Unit for medical care. Daniel fought hard during six weeks spent in his incubator at the Royal Surrey County Hospital, and he surprised everyone at how well he fed and made up for his shaky start!
It was a big shock to everyone when during a routine scan he was diagnosed with brain damage. We were told that Daniel most likely would have physical effects from his brain bleed, which we soon learnt meant that he had cerebral palsy.
The early years
It wasn’t long before we were introduced to the physio team that would become such a big part of our lives! The Surrey Paediatric Physiotherapy team are a dedicated bunch who work out of the Jarvis Centre in Guildford, and we were lucky enough to have both physiotherapy and hydrotherapy (which is essentially physio in the water) regularly from an early age. We learnt that Daniel’s cerebral palsy meant that the messages from his brain to his muscles were scrambled and caused abnormal patterns of movement.
We were delighted to see Daniel developing his personality and enjoying the world around him, although we shared his frustration at how inaccessible everything was (he couldn’t move independently and his arms didn’t reach for toys easily). His legs have always been very stiff, and I still remember how happy we were the first time that he moved his foot!
As Daniel and his friends got older, his physical limitations became more apparent, as he took until nearly 2 years old to learn to sit on the floor, and he has never learned to crawl, to stand or to walk independently. Our house rapidly became a home for vast quantities of equipment to help him stand, sit, play, eat and all those other tasks that fill a child’s life.
A typical week for Daniel now includes the usual round of school activities – and his disability does not give him any excuse to skip Sports Day or handwriting lessons! As well as school, Daniel has a swimming lesson each week, and he also takes great delight in riding “his” horse, Jim Bob, at the Riding for the Disabled sessions each week in Bookham. These activities are good fun, but also increase his body-confidence and awareness.
We are lucky enough to work with Anna, a physiotherapist who comes each week to work with Daniel. She does stretching, exercising and makes him work hard for her – but there is plenty of laughter too! We see the NHS physiotherapy team too, and they set a program of exercises that he carries out with the teaching assistants at school.
Recently Daniel has had Botox injections (yes – that’s right, Botox!) into his legs, which have helped to reduce the spasticity that he fights against all the time. The injections have helped him, but the effects are only temporary. The only permanent way to reduce spasticity is to cut the nerves that carry the scrambled brain signals – and that means SDR.
Daniel has been accepted onto the program for SDR at the St Louis Children’s Hospital in Missouri, USA. We are delighted that Dr Park, the world authority on the procedure thinks that he is an excellent candidate for surgery. The surgery is planned for spring 2014 and will be followed by months (if not years) of intense physiotherapy to make the most of his new abilities. It will definitely be a marathon effort but we are really excited about what the future might hold for Daniel!
Here is what Dr Park has to say about Daniel:
We feel that Daniel is an excellent candidate for the rhizotomy surgery. If he has the selective dorsal rhizotomy surgery we expect the following improvements:
- His spasticity will be permanently reduced.
- His sitting and standing postures will improve.
- His transitions between postures will be easier and faster.
- His level of comfort will improve.
- We feel that Daniel will be able to walk using crutches but has potential for independent ambulation indoors.
For all of the reasons mentioned above, we feel that Daniel is an excellent candidate for the rhizotomy surgery and that the permanent reduction in abnormal muscle tone will help him significantly. We strongly recommend that he have the rhizotomy surgery.