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From Rebelmommy, a Mother's Love really knows no bounds.......
Hydrocephalus. Some of you may have heard this word, but I am guessing most of you have not. I know I had never heard this word before a Doctor sat across from me and said it. More commonly called "fluid or water on the brain" it occurs in approximately 1 out of every 500 births and my daughter has it. As many of you upon first hearing about it I had questions. What is it? What causes it? How is it treated? What kind of life can my child expect?
Hydrocephalus is caused by the build up of CFS (Cerebrospinal Fluid) a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain. The causes of Hydrocephalus are not really well understood, most of the time it occurs from inherited genetic abnormalities or nueral tube defects. It is most often treated by surgical insertion of a shunt. A shunt is a flexible but sturdy plastic tube. A shunt system consists of the shunt, a catheter, and a valve. One end of the catheter is placed within a ventricle inside the brain. The other end of the catheter is commonly placed within the abdominal cavity, but may also be placed at other sites in the body such as a chamber of the heart or areas around the lung where the CSF can drain and be absorbed. A valve located along the catheter maintains one-way flow and regulates the rate of CSF flow. Shunts are not perfect and have been the recommended course of treatment for Hydrocephalus for about 60 years and have changed little during that time. It is, in my opinion merely a band aid but since we have this band aid little funding is available to research a better alternative. Shunts become infected in 10-20% of time following it's placement and 10% of shunts fail every year resulting in more surgeries for the person with them. Hydrocephalus poses risks to both cognitive and physical development, and if left untreated progressive hydrocephalus may be fatal, however, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations.
For me, personally all of this information was scary and yet reassuring. My daughter could lead a normal life, however we would constantly have to watch for failures of her shunt, and limit her activities to things that did not stress her shunt line. My daughter is thus far a healthy happy 10 year old, but everyday the worry that she will have to have her shunt replaced is a vivid reality for us, as it is for parents, sisters, brothers, grandparents and friends of people with this condition. I am not much of a writer, but wanted to just take a moment to tell you about this condition, as odds are at some point in your lives, just going about your regular routines you will encounter someone with it. Thank you for taking the time to read this. Please feel free to contact me and ask questions if you like.
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