Hydrocephalus:  Would you tell your child they have it..?

Hydrocephalus: Would you tell your child they have it..?

Preparing yourself about all that Hydrocephalus encompasses, is probably the wisest thing you could do.

I almost feel compelled to write this post today.  To give you some perspective.  I recently, had a chat with someone who told me about a young child (about 12 years old) whose parents never told her she has a shunt.  She only found out when she got sick and, the shunt needed replacing.  She was born with it…

As a parent of a child with Hydrocephalus, have you spoken about the condition to your child?  Have you prepared them and given them the basics of knowing they have a Shunt or ETV?  Have you explained to them what the common symptoms are and, what they should be aware of?  Maybe, you don’t know an awful lot about any of it yourself so, you’re not in a position to really tell them much…

It’s the perfect setting to learn alongside them, taking each step in your stride…

To be honest, much of what I know about this condition, comes from researching and internet searches, aside from my own personal experiences.  Facebook groups are great, once you weed through the comments that don’t serve you well…(remember, you’re dealing with humans after all).  For the most part, I’ve found the groups useful and, even managed to forge some lasting friendships and a good support circle to bounce things off of.

I can’t imagine that it’s easy to watch your child go through the symptoms of this condition.  I also can’t imagine that it’s easy to watch them endure and recover from yet another brain operation.

I say this with the utmost care and respect:

Please don’t bury your head in the sand.  Hydrocephalus is an incurable condition, until they find a cure or at the very least, better treatment options.  Just because your little one had surgery, does not mean they are cured.  The best person to tell you when something is wrong, in this uncertain world of Hydrocephalus, is the very little being you’re trying to protect.

I’m a mother…  However, I’m not a mother of a child with this condition.  But, I’m a mother nonetheless (with Hydro).  I know what it’s like to play “doctor”.  Trying to figure out what’s wrong with your child or when it’s time to seek medical help or DIY.  I even know what it’s like to listen to your child being sick in the middle of the night and not knowing what to do.  Being overcome with an insane amount of fear for them and a feeling of helplessness that could literally swallow you whole.  But more importantly, that constant prayer and willing them to just be OK, to get better and back to their old self.  I also know what it’s like when the doctors dismiss your concerns and in the end, you do Google searches trying to self-diagnose.  Going to the chemist is nothing new, buying medicine over the counter and treating your child, because you’ve reached a level of helplessness.

Some people might even raise an eyebrow at me right now for saying that…

But, because I have this condition, I CAN imagine that all of the above will be increased tenfold with the complications, caused by Hydrocephalus.

I can understand wanting to protect your child, not wanting to burden them unnecessarily with the heavy topic, which is Hydrocephalus.  I can even understand not wanting your child to feel like they’re not “normal”.

There’s absolutely nothing wrong with any of it.

But…(there’s always a but), you need to be sensible.  It can cause more harm than good if you don’t teach them from an early age.  Shunts and ETVs are not meant to last forever.  Sure, some of us go years without needing further intervention but this is not always the case.  Being prepared is one of the best things you can do for your child.  People always say “kids are resilient”.  I firmly believe this.  I bet they probably handle the condition better than most adults do.

It’s your love for your child which drives you, no doubt.  But, being sensible, and empowering them with the knowledge they need to identify their symptoms, and knowing when to ask for help, is probably the greatest gift you can give them.

Don’t let your fear rob them…give them the tools they need to fight this condition with all that they’ve got.  Teach them to be advocates and speak out about it.  We always say Hydrocephalus needs more awareness but, did you know it starts with us?

The condition is invisible but they don’t have to be…


  • minionmayhem514

    March 27, 2019 at 3:10 pm Reply

    My daughter is going to be four in a couple months and she won’t remember the five surgeries she’s had so far. She doesn’t seem to have noticed her shunts yet, or the catheters that run down either side of her neck under the skin. She knows she has a scar on her stomach, but she doesn’t understand it’s from surgeries. She just says she had a booboo and got hurt. We’ve explained hydrocephalus in a very broad sense, but she doesn’t understand yet. We will certainly be explaining more as she gets older and asks about them again, and as we make visits to the neurosurgeon, I’m sure she will be more curious. Right now, she’s happy with the explanation of “that’s your shunt. It helps drain extra water from your brain so you feel good.”

    When she’s old enough to KNOW what a shunt malfunction is and what it feels like, my fear is that she will be prevented from seeking help by a teacher who doesn’t understand. I plan to make my little booklet again when she starts school and talk to her teachers and school staff in person about it, but I’m afraid she will feel symptoms and try to get help and be told no because “she’s just trying to get out of class.” I plan on instituting a “you do whatever you have to and I will fix it” policy. If she has to walk out of class and ignore teacher instructions, so be it. Her brain is more important.

    • Skyewaters

      March 27, 2019 at 8:30 pm Reply

      I can’t believe she’s going to be 4😳. Feels like just the other day when we first connected😊
      I’m with you on your stance and would encourage you to do exactly that as I fully understand your fears.
      My daughter has selective mutism meaning, she doesn’t talk to just anyone. Only my husband, sons, myself and a few select friends. Every year I make it my duty to discuss the situation with her teacher. I ensure they understand not to put ANY pressure on her and if they don’t understand SM, to read up on it. In fact, in New Zealand, I got someone from the Ministry of Education involved just to ensure the teachers were doing the right thing and understood what NOT to do.

      As a parent, we do what we can to protect our children. But, I think there’s a fierceness which comes with being a mother of a child who needs a little more than normal. It’s great that you’re talking to LMM about her condition, the day will come when she’s old enough to understand it all.💙

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