making a difference - hydrocephalus

I firmly believe that everyone, EVERYONE can make a difference. It doesn't matter if you are poor, disabled, busy, tired, overworked, blah, blah, blah...everyone can make a difference. The key is finding something that you care deeply about and suddenly it is easy to see where and how you can really make a difference.

Earlier this week, on Monday, I received an email from my lil sister with a link to a newspaper article from her town (the town I grew up in). It was an article about a 31 year old lady who woke up on Jan. 11 of this year and her life was changed. She was nursing her then 8 month old daughter and suddenly she had an extreme headache. She went to the local hospital, where they misdiagnosed her and sent her home. Being persistent, she went to another hospital (in a neighboring town) and within 15 minutes of walking in the door, she was in the operating room having brain surgery. For some unknown reason, she was suddenly suffering from hydrocephalus.

She joined an organization called Stars Kids and set up the first annual Grand Haven Stars Kids walk-a-thon. When I learned of the walk on Monday, I immediately contacted this lady to see if it was too late to participate. It wasn't and so I began collecting sponsorship funds and arrived this morning eager to walk. I will go into details later about the walk, but wanted to spend a moment educating you about what hydrocephalus is and how it impacts people.

Most of you have probably never heard of hydrocephalus. I know that before my 20 week ultrasound, when I was preggo with Lil Bug, I had never heard of it either.

Approximately 1 in 500 persons are afflicted with hydrocephalus either from birth (e.g., brain hemorrhage, spina bifida) or acquired causes (e.g., tumor, cyst, meningitis, traumatic brian injury). The term "hydro" is Greek for water and "cephalus" means head. It is also referred to as "water on the brain."

People with hydrocephalus have abnormal accumulation of celebrospinal fluid (CSF)in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.

Usually, hydrocephalus need not cause any intellectual impairment if recognized and properly treated. Shunts are the preferred treatment for hydrocephalus but they malfunction, break, can become blocked and cause infection. Shunts have a 60% failure rate within the first year. Many people with shunts undergo multiple neurosurgeries to correct shunt failures. Complications may include developmental delays, brain damage, stroke or even death. All complications impact the families of shunted children and adults.

Now that you see the importance of shunts, you may be suprised to learn that no federal monies are set aside to promote research and advancements with shunts. For the thousands of children and adults live with a shunt, there is constant concern and worry as the statistics show that failure of that shunt is likely. Each time a shunt breaks, becomes infected or blocked, it needs to be fixed. Each surgical repair or replacement is called a revision. A revision sounds like "a walk in the park." However, each and every revision is a major neurosurgery and a new traumatic brain injury.

The nonprofit organization "Stars" Kids was established to help raise awareness and monies to privately fund research and to promote advancements in shunt functionality so that those affected by shunts will have a longer and better quality of life. The founder and president of the organization has a 26 year old son who has a shunt. He has had about 100 revisions (yes, you read that correctly) in the past 10 years...do the math and that means that nearly once a month he is having brain surgery. What kind of a life is that? She was frustrated with having to settle on the current shunt and so about 7 years ago she established this organization.

So, this morning I arrived in time to register and turn in the money I had collected. My dad met me there to be my walking buddy. It was cold (low 50's), extremely windy and raining on and off. We walked along a boardwalk and down the pier as massive waves crashed along the pier and sprayed freezing cold water on us. IT. WAS. WORTH. IT. Lil Bug was supposed to walk with me, but she has come down with a cold, so she met me at the end and met some other children with shunts. It was a nice event and the turnout was great for being the first year in that small town.

I look forward to being more than a participant next year and actually stepping up to help prepare for this event. It is something that has already impacted our lives very deeply and personally (Lil Bug had a shunt placed when she was 4 days old and had her first revision this past January-when she was just over 2 years old).

I am only one person, but I did collect a large amount of money and I know that money will be going to something that is very near and dear to me...researching to make a better functioning shunt.