As we are in September (how’d that happen?!) it’s hydrocephalus awareness month! I’ve decided to do a blog on this to try my hardest to help anyone who’s in the position we were six years ago.
We found out at our 19week anomaly scan that one of our triplets was going to be born with spina bifida, a condition closely associated with hydrocephalus. We heard things like “lemon shaped brain”, “increased ventricles”, “myelomeningocele” and made a conscious decision NOT to google these. Of course, that went right out the window as I sat up late one night in tears and the lure of Dr. Google was too strong. The literature was terrifying, even for me as a trained nurse.
So I’m just going to dive right in here with some of the questions I had when we found out about Jacob (who, by the way, is almost six and most definitely NOT defined by hydro!).
What exactly IS hydrocephalus?!
Essentially, it’s what used to be called “water on the brain” and is caused by cerebrospinal fluid (CSF) building up within the chambers (ventricles) of the brain. In a baby, the joints in the skull are less fixed so there is a bit of “wiggle room” for the ventricles to expand beyond what would be normal because the skull can move. This means they will often use “head circumference” measurements as a way to monitor whether hydrocephalus is worsening in a baby.
How is it cured?
Let me be quite blunt about this. Hydrocephalus cannot (currently) be cured but is instead managed through a few different methods. I’m not a neurosurgeon, although we are very lucky to have a brilliant one for Jacob. He was actually, quite randomly, on “The Island with Bear Grylls”! Anyway, famous doctor aside, I can only talk about what treatment they offered to Jacob. He has a Ventriculoperitoneal Shunt in situ, which is quite a mouthful so usually shortened to VP shunt.
There is a catheter (hollow tube) going from his ventricles to a valve/reservoir which is essentially a little hollow disc. There is then a longer catheter that runs down the side of the neck and down into the abdomen. The fluid goes from the over-filled ventricles (which causes pressure on delicate brain tissue) down the tubing into the abdomen and is then harmlessly reabsorbed. Voila! Perfect solution right?! Not always.
What complications can occur with shunts?
I remember Jacob’s neurosurgeon telling us that shunts can be unpredictable and misbehave. This has proved true for us, unfortunately. Jacob is on his sixth shunt. Why? Because the tubing can become blocked, which then causes the ventricles to fill with CSF and compress the brain within the rigid skull. There is a huge range of symptoms that can occur with a blockage, although Jacob has presented quite differently with all of his.
The best advice I have got is to be your child’s strongest advocate. We know him best, we know when he isn’t right. As his neurosurgeon has said, we’ll get it wrong at times and so might they...but when the whole team works together the aim is to communicate potential issues to keep him safe. Sadly, the only way to fix a malfunction is to perform neurosurgery, which there really is no way to “soften”. There are no words to describe the pain of handing your baby/child to a surgeon to cut into their head.
What other difficulties might a child with hydrocephalus have?
This question has a huge answer really. There would be no way of describing this in a blog, and honestly it is probably what has shocked me the most as the years have gone on. Jacob has several difficulties associated with his hydrocephalus despite it being well controlled most of the time. For example, he displays some behaviours that could be seen as “challenging”, such as hitting out, throwing, task avoidance, refusal to engage and so on. The biggest hurdle we face is epilepsy, which is more common with hydrocephalus.
So...if you get the diagnosis that your child has hydrocephalus, please know that there is HOPE. Use all the support you can get (Shine is an excellent charity, please contact them as soon as you can!) and don’t be ashamed to admit when it all becomes too much. It’s so true what I have read before...no doctors or diagnosis will ever define the love you feel for your baby.
Life may be different to what you’d expected, but as Jacob now says to anyone who’ll listen, “Why fit in when you were born to stand out?” (Dr. Seuss!).