Hydrocephalus Awareness Month – September

While I was looking for a social media graphic to support hydrocephalus awareness month, I started to think about my own awareness of hydrocephalus and of course the multiple complications that Andrew has due to the original birth defect, spina bifida.

I began thinking about Andrew’s surgeries, doctor visits and therapies and suddenly I realized that for so long, I have talked about spina bifida and the advocacy, the awareness, the diagnosis itself as well as explaining to others about his care and special needs. What I don’t really talk about much is the fact that hydrocephalus is a serious complication. Hydrocephalus is a build-up of fluid in the brain. The excess fluid puts pressure on the brain, which can damage it. If left untreated, hydrocephalus can be fatal.

It’s weird that I often kind of forget about the severity or how serious it is. When Andrew was four days old, he had a shunt placed to drain the excess fluid. A shunt consists of a long, flexible tube with a valve that keeps fluid from the brain flowing in the right direction and at the proper rate. One end of the tubing is usually placed in one of the brain’s ventricles. It empties into the peritoneal cavity and is absorbed and then flushed out of the body through the kidneys.

Thanks to the internet, I read through lots of examples of shunt failure, clogs, replacements and multiple surgeries. It’s important to remember that these are brain surgeries. With each one there is a great deal of risk as they can be overdrawn, become infected, obstructed or they just stop working.

Nonetheless, it was a surprise to me at two weeks that I was getting Andrew ready for his hearing test (he failed the first one in the hospital, so we had to go back to Dell Childrens). I noticed that his little cap was damp. But I had just changed him and dismissed it as having it too close to a wet diaper or inadvertently putting a wipe on top of it. I grabbed a clean one and we drove to the hospital which was an hour away.

Once we got to the hearing lab, I began unstrapping him from his car seat, picked him up and as my hand cradled his head, I realized that it was wet. I looked and the bright yellow liquid had soaked through his cap. I remember how naive I was. I just stood there, dumbfounded. Not really understanding what was happening, After 16 years and 6 shunt replacement surgeries, I still never quite believe that shunt failure or hydrocephalus itself is to blame. I consider myself to be a very observant person. Every resume I have ever submitted boldly states that I am a great multi-tasker and show great attention to detail. So, I am always surprised…that I am surprised. It’s as if I could not wrap my brain around the fact that his shunt was failing…had failed and I am standing there, holding a newborn looking around for some other-any other-explanation.

We were already at the hospital and one floor away from the ER, so I put him back in his car seat and walked straight there. He was triaged immediately and we were led to a room. They measured the circumference of his head, ran a CT scan just to make sure it was indeed clogged with “debris.” They don’t tell you that it’s likely clogged with tissue from your child’s brain. Within a few hours, his neurosurgeon met us in pre-op, and by the end of the evening, he was admitted to a room to recover with iv antibiotics. The new shunt was replaced exactly where the old one had been. No new scar, but it was disappointing that his initial one had just lost the last stitch the day before. Beyond disappointing was the fact that my tiny newborn, only out of the NICU for a week, was back here fighting again.

I revisit this memory not to be overly graphic or upset new parents who may have received a hydrocephalus diagnosis, but to really bring awareness to the symptoms, dangers, and risks. I think about the other surgeries Andrew has had: 
urological, orthopedic, spinal fusion, and tethered cord. While those were all serious, they were also planned. I had some notice, and could prepare myself and my other children for being away from them, for having a toothbrush.

The fallout from hydrocephalus has been the most difficult of any of the other complications of spina bifida, and looking back over time, it has been the one that has given us the most grief—even more than the birth defect itself. As I said, there have been 6 shunt surgeries, with the last one being in 2013.

Andrew has a seizure disorder, which wasn’t diagnosed until after his 4th revision. He is developmentally delayed and has multiple sensory and auditory processing issues. We will never know if it is the result of fluctuating or enlarged ventricles. It’s all part of the big picture of an extremely complicated diagnosis. He has an almost constant headache and is very sensitive to barometric pressure changes in the atmosphere as well as pressure in his own body due to constipation or neurogenic bowel function. It all sounds complicated, and for me the consequences of hydrocephalus, a term I had never heard of before Andrew was diagnosed, have been the most frustrating and the most stressful. I imagine because the shunt failure or visits to the ER have to have it checked are in the emergency category and as parents, that is terrifying.

While this is a terrifying time in our lives to remember, it is also important to acknowledge that we have had some amazing, incredible times and have met lots of important milestones together with Andrew and as a family. I don’t think anything ever prepares us for for those moments that occur in an instant, while at the same time seem to be in slow motion. Andrew is 16 now. He is healthy, happy and so very loved.

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