1 in 500 babies are born with Hydrocephalus. There is no cure. There is only management of the condition. The only management is a shunt. This treatment is not new. In fact the treatment is so old that a new one would be amazing!!
Hydrocephalus is one of the most underfunded conditions in the medical field. It is dangerous and life threatening. Shunts were invented by a mechanic in 1965. It was not invented by a doctor, but a father who was desperate to save his son.
Shunts have a failure rate of about 50 percent in the first year. Some have so many revisions that they lose count. 40,000 brain surgeries are performed on hydrocephalus patients a year. Only 30 percent are patients first shunting.
Tyler has hydrocephalus. Tyler is stable for right now. We have hit the magical number of 2 years since having a malfunction. In fact we are on year #3. We are NEVER ever going to be out of the woods. Ever. Whenever we have the flu, or a fever or vomiting we worry. We worry that we will be in brain surgery within 12 hours. There is always a nagging worry that a behavior is a symptom of something else. There is always a worry that his stuttering is the start of to much pressure.
There is always a worry.
September is Hydrocephalus awareness month. We are aware of it all the time and want to give others the chance to learn more about such a common yet uncommon condition and to raise awareness and money so that a new treatment can be found. A more effective treatment.