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Hydrocephalus Awareness – Jonathan’s Story

JZ Hydro header

My son, he is just one of the many reasons why we need Awareness.

Taking a break from posting about crochet, because I have decided to share my sons story since he just recently had to have another shunt revision surgery.

Hydrocephalus Awareness and Research is needed very badly. The ONLY treatment for this condition is surgery and the insertion of a shunt into the brain, which can plug, break, or malfunction. There is no cure for it either because Hydrocephalus is the result of other conditions or problems with the brain, whether it is congenital (developed before birth) or acquired. It’s estimated that 1 to 2 of every 1,000 babies are born with Hydrocephalus and many more children and adults develop it later due to severe head injury or by other traumatic means, such as a brain tumor, causing a blockage in the brain causing excess fluid to build up in the skull. Without treatment, it could cause severe brain damage and even death.

Jonathan’s Hydrocephalus Story

Jonathan was born with Aqueductal Stenosis and Chiari Malformation Type 1. Both conditions are brain abnormalities that happen during development in the womb before birth that cause congenital hydrocephalus, commonly known as “water on the brain”. The only treatment for this condition is the insertion of a shunt into the brain. A shunt consists of some kind of regulating hardware, like a valve, either a programmable or fixed pressure, with 2 catheters, the proximal that goes into the ventricles of the brain, and the distal, that ends in the peritoneal cavity in the abdomen (VP shunt) or into the aorta of the heart (VA shunt), both connects to the shunt valve. Jonathan has a VP shunt with a programmable valve. Sometimes there is another piece of hardware needed to help the valve control the flow of the CSF (cerebral-spinal fluid). For Jonathan, that is a gravity compensator that “closes” when he is upright to slow down the flow of fluid through the shunt, and “opens” when he is laying down to help it drain a little more. Since Jonathan was about a year and a half old, up until today, he has had 74 surgeries for his shunt, including the first placement of it at 17mos old. He is now 23yrs old. He has also had 2 surgeries, called Decompressions, to correct the Chiari Malformation, which is a condition where the cerebellum of the brain is herniated down into the spinal cord through the small opening at the back base of the skull. His first decompression was when he was 23mos old and the 2nd was just in May of 2014, when he was 21yrs old, almost 22. The Aqueductal Stenosis is a narrowing of a “tube” in the brain call the Aqueduct of Sylvus that is between the 3rd and 4th ventricles causing it almost impossible for the CSF to flow through causing a build up of fluid in the brain.

All of these surgeries are considered to be brain surgery and as of 11-05-15, at the age of 23 years old, between the shunt and the Chiari, he has had a total of 76 brain surgeries. This is why we need Hydrocephalus awareness and research for better treatment for this condition.

(On top of all of that, he also has Asperger’s Syndrome.)

Update: As of November 3, 2016: Jonathan had his 75th Shunt Surgery at 24 years of age, making that a total of 77 Brain Surgeries.

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