Realizing I Had Hydrocephalus

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Dan Kricke shares his voice in our adult blog series. Look for Dan’s blog every month. You can read Dan’s first blog here: Telling My Story.

Dan Kricke, living with hydrocephalusBy Dan Kricke

I’m not sure when I first realized I was living with hydrocephalus. When I entered the world a month early as an emergency c-section, it’s pretty safe to say I was unaware of most things, let alone that the reason I’d been brought in early was to facilitate shunting necessary to keep me alive. I heard about that later, but I can’t remember how old I was. I don’t have any real memories of the 5 surgeries I underwent before the age of 3. All of those surgeries were due to complications that involved severe illness due to the malfunctioning shunt, which means they must have involved a good deal of discomfort for my baby body, but to me they’re nothing more than footnotes on a medical chart.

If I had to guess, I’d say the first time I remember being aware of my hydrocephalus was around five years old, thanks to home movies. When I was around a year or two old my parents recorded videos of me walking, trying to use a disconnected telephone to talk to someone, even lounging in the bathtub. I must’ve watched the tapes hundreds of times. I was terribly enamored with myself from a young age. I guess some things don’t change?

But the thing I remember the most about these movies is that in a lot of them I had a big bandage on my small head. Some of the recordings were obviously taken around a shunt surgery. I remember asking about the bandage as a very young kid and learning about this thing I was born with. Slowly I learned how it would impact my life and how it would impact the life of people I’d form connections with. When I wasn’t near a revision, I hardly thought about hydrocephalus at all. I had never known a life without it, so to me, having hydrocephalus was as normal as having eyes.

When I’d have to worry about having a revision, that’s when emotions came into focus for me. I don’t think any surgery is particularly comforting, but when you talk about having a surgery that impacts the brain, that’s terrifying to anyone, especially a kid. On the other hand, what was I going to do? Not have surgery? When you don’t really have options, things that could be scarier are a lot easier to face. You just have to go through with them. I think this attitude has helped me deal with business meetings as an adult!

I think when you’re younger, especially with a condition like hydrocephalus that you’re made aware of at an early age, there’s a tendency to compare your health to the health of others. Except you don’t know nearly enough about the rest of the world to make the comparison fair. As a kid I would worry that no one was going to like me because I had hydrocephalus, and it made me different and sick and no one else seemed to have the same problem. But as I grew older, I realized lots of people have different medical conditions or other things that impact their daily lives, and that I’d probably never be the only person in a room with some sort of medical condition.

As I became a teenager and underwent revision surgeries, I also realized that as scary as it felt to be a hydrocephalus patient, I was on the luckier end of the spectrum. Aside from the quick succession of revisions I had as an infant, I went years between shunt revisions. I’ve never known anyone personally who grew up with hydrocephalus, but I’ve read plenty of stories of people who would go months, if they were lucky, between surgeries. By comparison, having only 4 or 5 hydrocephalus-related surgeries since I was six years old feels like a huge victory.

Now as I approach my thirties and, I believe, as only the second generation of hydrocephalus patients to experience a healthy adulthood, I feel a huge desire to help parents and others who are growing up confused about what having hydrocephalus means to their lives and their plans. I get how easy it is to worry that hydrocephalus will impact you for the rest of your life, and it will, but that doesn’t mean it has to impact it negatively.

Like anything else, hydrocephalus brings about its own set of emotional complications. In my upcoming blogs, I’m going to to be talking about handling hydrocephalus as a kid, my mental process for handling shunt revisions, the difficult transition of going from a neurosurgeon who treated children to one who treated adults, and also the impact that my loved ones have had on my life. After all, it’s one thing to realize you have to face something like a serious medical condition, but there’s much more that goes into dealing with events that occur as you grow older.

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2 Comments for : Realizing I Had Hydrocephalus
    • Elizabeth Mueller
    • June 28, 2020

    I was told at a very young age that I was born with hydrocephalus. I have had numerous shunt revisions over my life. The first at 5months old, second at 7 years old, a third at 14 years old. I was fine for many years until March 2006. I was 31, the mother of two toddlers, recently lost my mom then bam! Shunt revision surgery again. This was the first time my husband and extended family learned about hydrocephalus. I underwent another surgery in 2010. I was okay until spring 2014, when I underwent another shunt revision. After a few months I should have gone back to work but couldn’t. The headaches were coming back with a vengeance. October 22, 2014, my husband called 911 and I was rushed to hospital. I was told later it was lucky he got me there when he did. I had developed an infection and if any later could have died. I ended up spending a month in hospital undergoing 5 more surgeries trying to rid my body of the infection and rerouting the CSF fluid. It is hard working in retail, when you have new managers and co workers who have no clue what I have gone through and continue to deal with on a daily basis.

    • Margaret Torres
    • September 30, 2016

    I am the mother of a beautiful and somewhat shy 23 year old daughter with Hydrocephalus and a shunt. It would be nice for her I think…although not sure for her to meet and know adults like herself that are living and succeeding with her same condition. We are basically living life normally in college part time some but few friends and just wondering how can I bring this to her without disturbing her and making her feel different, separate not like everyone else. she is wonderful smart but needs more.

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