I see you staring at my sons head. I can only imagine what must be running through yours as you look at the bulge and accompanying scar on the back of his head. Rather than guess why don’t you just ask? Honestly, I wish you would.
I would love to share with you. To tell you he has a medical condition called Hydrocephalus. That bulge you see, that’s his shunt. It’s a valve with 2 catheters, one goes from his ventricles to the shunt the other from the shunt to his stomach. This helps to drain the excess fluid in his brain. This device is saving my baby boy.
Why do I want to share this with you? Many reasons, but mainly for awareness. Until I was told it was possible he had this condition I had never heard of it. He might have been diagnosed sooner if I had and known the symptoms.
Awareness goes a long ways. Take for example breast cancer. How many people are aware of it? Better yet, how many people aren’t. When October rolls around how likely are you to donate to breast cancer fundraising? My guess is highly likely. Breast cancer is unfortunately a fairly common thing. You most likely know someone who is going through it or has in the past. It hits home for you.
What about Hydrocephalus? If asked to donate would you think something like I don’t know what that is, or maybe that doesn’t effect me. If given the question to donate to either would you choose breast cancer because you can relate to it more?
I know I’m now going on a fundraising tangent. Sorry, it lead to that. Back to you asking instead of wondering…..
Awareness can not only help this condition to be diagnosed sooner if the symptoms are better known, but can also help people understand what we as parents of children with Hydrocephalus or adults with Hydrocephalus may be going through. Even in the best situations like with my son where there are no other complications there is always the concern of when his shunt will fail. As our neurosurgeon put it, it is mechanical, it is not a matter of if it will fail but when. The only way to know it has failed is to be lucky enough for the timing to allow it to be caught on his annual MRI or once he is showing symptoms.
What are the symptoms? It varies but most common are headaches, nausea and vomiting, fever, sunset eyes (eyes stay looking in a downward direction) and sometimes loss of appetite. Symptoms won’t present themselves until there is already pressure on the brain.
So what I’m getting at here is please ask. Who knows, maybe one day you will be glad you did.
Do you have anything you wish people would ask you about rather than just stare?