October is dwarfism awareness month, but this week is also hydrocephalus awareness week. This time exactly one year ago, Sam had just come out of theatre, after having brain surgery aged only 8 months. So today were talking hydrocephalus. Hydrocephalus is the retention of cerebral fluid on the brain. It is life threatening and there is currently no cure. Thankfully though, it can be treated. Sam had a device called a VP shunt inserted, which drains the excess fluid away from his brain and into his tummy. The device is by no means perfect, but it keeps him alive. There is a high failure rate for these devices, especially within the first 12 months. We are happy today because Sams shunt has worked for 12 months and this hopefully means it should last for a few more years before it needs to be replaced. The scary part is that you never know when the shunt device will stop working. It can be sudden, without warning, and it can be life threatening. As a parent you have to be hyper vigilant and watch out for the signs of a shunt failure or blockage, which is difficult as the symptoms are the same as many common childhood illnesses. Once the shunt device fails, you must act fast as within hours the pressure can cause damage to your childs brain, eyesight and even coma or death. For this reason Sam has open access to his local hospital and Addenbrookes. It can be very daunting. Hydrocephalus affects everyone differently. Some people will have little or no problems, while others can have severe learning difficulties. It can also affect gross motor development. It is quite common for people with hydrocephalus to suffer from headaches, and I think most will have some problems with short term memory and sequencing. On a brighter note, Sam is doing fantastic since recovering from his operation. In April he learnt to commando crawl, in June he started to stand holding onto furniture, in July in began climbing stairs, in august he learnt to cruise along furniture and last month he began taking his first wobbly steps using his walker. Hes been very busy and were all extremely proud of our little warrier :-)
Posted on: Fri, 24 Oct 2014 12:22:02 +0000
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