September is hydrocephalus awareness month. Hydrocephalus is a mouthful, I know. It’s a medical term that means water on the brain. Sounds iffy at best, like a flood in your basement. A flood really isn’t a bad analogy. Like a flood, hydrocephalus can be devastating for some, manageable for others, and even self resolving for a few.
Having hydrocephalus means there are a lot of times in your life where you just wait. Wait to see if it will resolve on its own. Wait to see if you need surgery. Wait to see how severe the damage is. Wait to see how your motor function is affected. Wait and see…
Having a child with hydrocephalus, at least for me, comes with a lot of guilt. It’s not exactly news you are excited to receive and because there is a lot of waiting, there is a lot of time to explore what this could mean for your child. Time to pray and try to bargain with God to let your child be one who self resolves, and leads a typical life. Time to contemplate selling your soul to ensure your child has a typical life. After all that is parenting in a nutshell—sacrificing yourself to give your child(ren) everything you can.
Hydrocephalus can happen at any time. Sometimes it is diagnosed before a child is born. Sometimes it happens from an event shortly after birth. For babies born prematurely, brain bleeds are a common cause of hydrocephalus. Sometimes it happens after a traumatic injury. My youngest son was born extremely premature. When he was 3 days old, I was told he had a severe bleed on both sides of his brain. I was told he may have hydrocephalus, but we would have to wait and see. I was told he could die. I was told a long list of things he might never do.
- He might never learn to breathe on his own.
- He might never learn to walk.
- He might never learn to talk.
- He might need round-the-clock medical care for the rest of his life, however long that might be.
But again we would have to wait and see. Medicine often is preparing for the worst and hoping for the best. In preparing for the worst, there is panic and a lot of discussions about end-of-life care, in case that is the direction this takes. Making decisions about when and if to resuscitate a child is not what any mother wants to do, ever, but especially not in the first few days of your child’s life.
Hydrocephalus was a dark cloud on my youngest son’s first month of life. That first month was full of watching and waiting. His head would be measured every day to assess if he would need intervention. At one point, his head size was monitored so closely, there was only one doctor who was measuring his head to ensure it was measured in the same way at the same spot every time.
I’m going to back up for a minute. Hydrocephalus is basically a condition where cerebral spinal fluid accumulates around your brain instead of being absorbed by your brain. See, I told you flooding was a good analogy. Do you know what the cure for hydrocephalus is? Yeah, neither does anyone else. Do you know what the treatment for it is? Brain surgery. Not kidding. The only effective way to manage hydrocephalus is to open up your head, stick a tube into the most affected area of your brain to drain the excess fluid out and redirect it into your abdominal cavity to be reabsorbed into your body. It is exactly as worrisome as it sounds. Or at least the first surgery is. It’s actual brain surgery.
At 1 month old, my youngest son’s head growth was severe enough that he needed to see a neurosurgeon. At just 5 weeks old, he had his first surgery to place his first shunt. You may notice I use the word ‘first’ to describe his surgery and shunt. It’s not because I’m pessimistic and expect he will need another surgery or shunt at some point in his life. I use the word ‘first’ because at almost 4 years old, he is on his second shunt and has undergone four shunt-related surgeries. I use ‘first’ because I’m a realist and fully anticipate he will at some point in the future need another shunt repair or replacement. When it comes to hydrocephalus, brain surgery just comes with the territory; more frequently for some than others.
At 6 weeks old, we learned that my son could breathe on his own, or at least without the help of a ventilator. At 13 months old, after missing most milestones, we learned he has cerebral palsy. Before he was 2 years old, he learned to eat food. A little after 2 he learned to drink from a cup. By 3.5 he had learned how to make some word sounds. At almost 4 we still are waiting to see if he will ever sit on his own, if he will ever learn to feed himself, if he will ever learn to walk.
My youngest son has hydrocephalus. As his mother, I feel an overwhelming sense of guilt. I feel guilty for praying he wouldn’t have hydrocephalus. I feel guilty for wishing and praying he didn’t have the life he end up having. I feel guilty there was nothing I could do to protect him. I feel guilty for not doing more for him. I feel guilty every time he ends up needing another surgery for his shunt surgery. I feel guilty every shunt failures that I think might just be a stomach bug. I feel guilty for wishing his life was easier. I feel guilty for thinking hydrocephalus would interfere with his ability to play and bond with his siblings. I mostly feel guilty because he is so happy.
My son wakes up every day ready to take on the world. He wakes up with a smile and a lot to say with words I hope to one day understand. He spends his days enjoying life as it is. He was born with a very laid back attitude. He has really taken the phrase work smarter not harder to heart. I have seen the boy try to make something happen for himself only to learn a day or two later that if he waits long enough, his twin sister will do something similar for him. Boyfriend learned not to be so picky about which toys he has, because having his sister hand him toys is a lot better than trying to figure out how to get toys himself. If you ask me, I think he’s a bit lazy. But if you could ask him, he’s living his best life.