Hydrocephalus

September is hydrocephalus awareness month. At the beginning of the month, I started writing a blog with facts and statistics of hydrocephalus and Spina Bifida, treatments, and other medical stuff. Before my 20 week anatomy scan, I only knew hydrocephalus by name. Here I am, 28 weeks later and I have learned quite a bit about the condition. I’ve decided not to publish my original blog post, but instead, share a little more about why this month is close to my heart and how hydrocephalus affects my little family, and more importantly, my boy.

Hydrocephalus is a side effect of Spina Bifida as the cerebellum is pulled down and the fluid in the brain (cerebrospinal fluid) isn’t able to drain as it should, causing a build up of fluid in the brain. There is no cure for hydrocephalus but there are treatments. For Nehem, the best option was a shunt. It runs from the ventricles in his brain to his abdomen to drain the fluid and allow his body to absorb the fluid. Nehem will most likely have many shunts throughout his life and we are constantly feeling Nehem’s soft spot and looking for signs of shunt malfunction or infection. As our neurosurgeon explained it, if you live in a house long enough, you will eventually have to replace some of the plumbing. The same is true for a shunt. Some people have the same shunt for 20 years, some need a new one after a month, it just depends on the person and how their body reacts to the shunt.

Shane and I decided after Nehem was born that we would not share pictures of the scars on his back anywhere public because this is now Nehem’s story, not ours. However, if you’ve seen Nehem in person since he received his shunt, you have seen the shunt. As he gets older and he grows more hair, his shunt will be less visible, but it will always be there. So there will be pictures below of Nehem’s shunt. 

I have had people apologize for asking questions about Nehem’s condition and I never, I repeat NEVER want anyone to feel that they aren’t able to ask us a question. Our goal is to raise awareness to Spina Bifida and all that comes with it, so please feel free to ask us any questions we may have not answered about Nehem. We will do our best to answer to question, or find the answer for you.

The first picture shows the difference in Nehem’s head circumference right before his shunt and immediately after the shunt. We could tell a difference as soon as we got to the recovery room and his head size has continued to decrease ever since.