Hello, my is Kate and I’m missing part of my brain. That’s my ‘go to statement’ when I’m told to introduce myself and to name one interesting thing about me. It usually stops people dead in their tracks and I get statements like, “but you’re so NORMAL” and “I never would have guessed”
Well, it is all true; I was born with a congenital birth defect called Dandy-Walker Syndrome. Now Dandy-Walker is referred to in many different ways but they all basically refer to the same thing. I’ve argued with other patients over this so I just back off but from what I have read it’s all the same. Dandy-Walker Syndrome is a condition in which a baby is born without a portion of their Cerebellum. The cerebellum is located at the base of the skull and is important because it is involved in voluntary motor/muscle movement and things like but not limited to:
• Sensory processing
• Olfaction (sense of smell)
• Language and communication
• Learning and memory
DWS affects 1 out of every 2,500 live births but the actual number of individuals affected is suspected to be much higher because of how much the syndrome varies from individual to individual.
My parents got this diagnosis for me when I was 5 days old and my mom was first able to hold me. You see I was born 5 weeks premature and wasn’t breathing. Mom and I were loaded into an ambulance (which had to stop twice because I stopped breathing) and sent to a larger hospital with a NICU, there I spent my first 16 days of life. While in the hospital during those first days I had a CT scan that showed the Dandy-Walker Syndrome and it also showed that I had hydrocephalus.
Hydrocephalus is an abnormal buildup of spinal fluid in the brain. It affects 1 out of every 500 live births, hydrocephalus can also appear later in life because of illness, injury, or the way the body reacts to aging. Anyway, in my case the Dandy-Walker Syndrome actually caused the hydrocephalus. With most DWS patients the 4th ventricle in the brain is enlarged preventing the flow of spinal fluid and causing a buildup to occur.
When I finally went home my mom started doing PT with me. Before she passed away in 2006 she showed me the folder of exercises she did with me every day it was at least an inch thick maybe larger!
When I was 4 months I was finally at a weight where the surgeon felt comfortable operating. After my first shunt placement I spent 3-4 days in the hospital at Children’s Hospital of Michigan. An interesting fact I recently learned: the surgeon who did my first surgery was the first Black Neurosurgeon in the US as well as the first woman Neurosurgeon her name is Alexa Canady, MD and I would love to meet her. My parents told me stories about her growing up, but I digress.
After that surgery I continued to struggle, according to my parents, to hit normal milestones. I started to walk then I got glass because when you have hydrocephalus your eyes are normally affected. Then I had four eye surgeries to tighten and loosen the muscles. In the end I didn’t end up walking till I was about three.
The rest of my childhood was pretty normal, my parents impressed on me that I had a shunt and had to be careful, but that was about it. I did normal kid stuff except I didn’t do the gymnastics stuff in gym class ever. When I got older I helped on the farm baling hay and straw, throwing off the wagons and stacking in the mow.
When I was 13 I had my first revision and I was no longer allowed to help on the farm. I then got excused from gym because kids are mean, they would throw stuff at my head. Not really safe to be around plus I could feel the shunt move every time I ran, which was very painful. The rest of junior high/high school was spent in and out of hospital having revisions. It made life, shall we say, interesting? With my first revision I was out of school from the end of October till January because I got a shunt infection and well you can’t go to school with an IV pole….
I graduated high school on time with my class and started at community college. My first year at school I ending up having an emergency surgery for a blocked shunt. I woke up from that surgery completely paralyzed on my left side. Working to regain function was so much fun! By Thanksgiving that year I had graduated from a walker to a cane, and was walking unassisted in the home. By New Year’s I was going out without the cane but still used it a lot (It was my baby blanket).
I went through a number of surgeries my first two years of college. When all was said and done I ended up transferring to a school three hours away from most of my family and didn’t end up having surgery again until my last year on campus. That was quick and easy in and out surgery and even though I wasn’t back on campus I worked on my online classes and papers I had to write waiting for the staples to come out.
After my graduation in 2014, with a BA in Pastoral Ministry, I skyped into my final 2 classes for my Hospice degree while completing an internship at a local hospice, it was a great experience. In 2015 I started going back in Children’s Hospital of Michigan and seeing a Pediatric Neurosurgeon who gave me a new programmable shunt and I had thought put an end to my problems. In July of 2016 after continued problems with my shunt and going back to using a walker because of being unsteady on my feet I sought out the help of the doctors a Michigan Head Pain and Neurologically Institute. They diagnosed me with Benign Intracranial Hypertension, which is funny because I have a shunt… I’ve recently started treatment and am hoping to start living the life I’ve dreamed of working with hospice or hospital patients taking care of their spiritual needs.