This is my own experience with hydrocephalus which I share in hopes of encouraging those with the problem to know that they are not alone.

When a stranger first sees me, I don’t look very extraordinary. However, as soon as that stranger sees me take my first step, his or her perception probably changes quickly. I was born with spina bifida and hydrocephalus. It’s obvious when I walk that something isn’t right, but the hydrocephalus is still invisible. I wonder how many of our members have this and don’t talk about it for that very reason—if it’s invisible, then at least it’s one less thing that makes us different from everyone else.

I notice a lot of attention is given to spina bifida, but how much do we actually talk about what having hydrocephalus means to someone? I actually had more trouble growing up with this problem than I did with the spina bifida. A shunt was implanted in my head within a few days of my birth, and I was in and out of the hospital during my early years for shunt revisions and breakage and other problems. One of my favourite dolls still has a permanent mark on her head where my parents said she was like me.

I can remember the blinding headaches and vomiting that would come when there was trouble with my shunt. Even at the age of 38, I still panic when I get a headache that makes me unable to function for several hours, wondering whether or not this is a problem with the shunt becoming clogged or one of the many, many things that seemed to go wrong with mine periodically as I grew older.

Once I stopped growing taller, the trouble with my shunt seemed to go away completely. However, I always wonder what that means. Is it still functioning properly? Do I still have hydrocephalus? Will it come back sometime when I least expect it? I have always lived in more fear than most people that a simple bump on the head could cause a world of trouble. It feels sometimes as if I have a time bomb inside me, and I don’t know when or even if it might explode.

If you have a shunt, do not make assumptions about whether it’s working. Ask your doctor to do whatever is possible to monitor it, just as you would get your kidney function checked or you would monitor the other effects of spina bifida. Educate yourself about what is going on inside your own body, because you’re the one who has to live in it.