For years I have been told I should write about my experiences with Hydrocephalus and what they have taught me as a way to help other struggling with what it means to have hydrocephalus. I do not know how much I can really help others with the disorder or to help families dealing with caring for a child with hydrocephalus. All I can do is share my experiences, what I have gone through and what I have learned from the challenges I have encountered. I have gone through periods of darkness, yearning for the light and wondering will things ever get better. I am here to say that YES things will get better. I have been called an inspiration, but I tell you know I am far from it. I have gotten to where I am and accomplished I have because of the support I receive from many around me and my faith. Without those two things I would have given up and died a long time ago.
My story begins in August 28, 1989 when I was born to, two of the kindest, most loving people I have ever known. I was premature by 5 weeks. When I was born I was not breathing and because I was so premature was sent by ambulance to a larger hospital with a Neonatal Intensive Care Unit, my mom told me that they had to stop the ambulance twice because I stopped breathing. After 5 days she was first allowed to hold me. That is when she noticed a bump on the back of my head. She brought this up to the nurses and they told her it was nothing, but she insisted that it be checked out. After a CT a neurosurgeon was brought in and I was diagnosed with an encephalocele, hydrocephalus and Dandy-Walker Syndrome.
An Encephalocele is where the skull bones don’t come together and result in a gathering of Cerebral Spinal Fluid and/or the brain and surrounding membranes become trapped. Hydrocephalus is the buildup of excess Cerebral Spinal Fluid in the ventricles (cavities) within the brain. The buildup of fluid can cause many problems and even result in death if not treated. Dandy-Walker Syndrome is a condition where a portion of the cerebellum is missing and replaced by a cyst. The cerebellum controls muscle coordination and other functions important for life, or as I like to say, “walking, talking, breathing you know all those unimportant aspects of life” Some people look me horrified when I say it like that, but the way I look at it I am lucky to be here, why can’t I have fun with explaining my disorder. One cannot be serious all the time.
I received my first VP shunt at four months of age. From what I have been told and what I have read the surgery was done by a remarkable surgeon who was both the first woman neurosurgeon and the first black neurosurgeon. My childhood from then on was pretty normal except for having to do a lot of PT and OT along with learning how to suck on a bottle. My mom never gave up, doctors told her to institutionalize me, I’m glad she didn’t! As hydrocephalus goes I was lucky, unlike many kids who have multiple revisions and complications I didn’t experience my first shunt revision till I was 13, when my shunt fell apart. Since then I have had numerous spinal fluid and shunt infections leading to weeks at a time in the hospital. The longest I’ve had a shunt since I had my first revision is 3 years, the shortest time less than 24 hours.
When I was 19 I had my first major complication, I woke up from an emergency revision to discover I couldn’t move my left side at all! Luckily with a lot of PT and support I’m back up walking on two feet (with the use of a cane) and I can once again use my left hand and arm! Then my sophomore year at college I had another setback which caused me to drop out. I had been going in and out of the ER for months and back and forth to the Neurosurgeons office telling him something wasn’t right. Finally after 3 months I was hospitalized with another shunt infection. I was in the hospital a whole month! The 2nd to last surgery I had before discharge damaged my optic nerve making everything from my right eye blurry. Despite that and how week I was after a month stuck in bed at the hospital I started looking at new schools, I found one applied and have since graduated with 2 degrees both of which I cannot currently use because of complications from the shunt and hydrocephalus mainly Chronic headaches and other chronic pain. I have also noticed a general weakening of my left side that seems to persist despite exercise. That is a synopsis of my story just a little peak, life hasn’t been easy and this is only one part of my life I have also been diagnosed with PCOS, depression, anxiety and I fear there is more to come as I search for answers, but through all this I have learned to never give up. You can become bitter or you can get better; it’s up to you!
Article written by Kate Dekoski