In 2009, our beautiful girl was born at 30 weeks. She sailed out of the Neonatal wards of St George’s Hospital and came home in five weeks with her big brother Kian doting away.
When Caitlin reached around 11 months, we began to notice the tightness in some of her limbs. Caitlin was not sitting up. Despite our concerns, her assigned consultant paediatric neurologist stated that this might just be due to the expected late development associated with prematurity. He requested we wait another six months for another progress check up.
This was not good enough for us and we insisted on an earlier appointment date.
In February 2011, after several heated confrontations with what we can only describe as inept or misguided misdiagnosis and apathy toward our concerns, Caitlin’s Mum turned to an experienced, private Paediatric Physiotherapist. The outcome of that meeting and assessments brought about a bombshell that blew away our hopes that Caitlin had escaped the effects of her premature arrival.
Caitlin, was shortly after diagnosed with Diplegic Cerebral Palsy probably caused at or shortly prior to birth. The condition caused brain mis-messaging in the nerves routed predominantly to the legs. This error messaging constantly and subconsciously tells certain leg muscles to tighten. This is all the time and despite Diplegia not being a progressive condition, the relentless nature of this tightening restricts movement, muscle and subsequently skeletal growth. It can affect gastric processes among other internal systems.
The multitude of emotions that followed this confirmation of our concern – the anger at the services and information we had been (or rather not been) given, the wasted time taken to get answers, the dawning of what this might mean for our wondrous little girl – was palpable. However, on our side we had this vivacious, bubbly near two-year old and her effervescent big brother Kian to quickly pull us back into forward gear!!!
Research began on all fronts; Mum hit the online boards, Dad hit the science. We soon discovered a great deal about the condition and it’s rather large sliding scale. This allowed us to place Caitlin on that scale and so plan a therapy route. Looking longer term, two interesting lines of progress kept popping up in our findings; Stem Cell therapy and Selective Dorsal Rhizotomy (SDR). Both appeared to be relatively cutting edge and be producing interesting results. Both appeared to be pioneered predominantly in the U.S. But one had a distinctive edge on the other.
SDR – an operation that can be performed on children of all ages (though results indicate that younger is better) – had quantifiable, living breathing walking and running results. It had an amazing safety record. SDR also has a pioneer in Dr Park at St Louis Children’s Hospital in Missouri. Park refined the procedure making it less intrusive, lowering recovery time , all while producing more astounding results. He redefined the recovery program from the operation to maximise its effect. He has now most graciously disseminated his procedure to other neurosurgeons and created a a mini phenomenon. Not words chosen lightly either, wheelchair-bound children arrive at his hospital with hopeful parents and walk out a month later.
We felt this was a great opportunity for our daughter primarily due to her tenacious character. The rehabilitation from the operation is intense, especially for little ones. The unwillingness to give up, the desire for independence and downright pigheadedness are just the ticket for maximising the improvement offered by SDR.
This Blog is to chronicle the events, emotions, and findings of Caitlin’s journey Pre and Post SDR should she be suitable for the procedure.