Raising a child with a chronic health condition can be challenging from many perspectives. I have had to learn how to navigate the medical world. Additionally, I needed to learn about managing and advocating for his health-related conditions. While I don’t have a medical background, learning about his disease has never been a challenge for me. My most significant obstacle as his mother has been helping my son understand his limitations and how the conditions affect his body. Recently, I explained hydrocephalus to my son. I realized the description might help others understand the disease.
My son, like many children with chronic diseases, knows he doesn’t always feel his best. However, due to his age and development, he has a hard time understanding why he feels sick. As a mother, I have to find creative ways to explain to him, in simple and practical terms, why he there are days he feels sick.
Two months ago, he had one of his most acute episodes of pain and illness. He woke up from a nap vomiting, screaming, and scared that something was wrong with him. As a parent, I felt helpless as I watched him roll around and cry. We made a trip to the Emergency Department. After a few hours, doctors admitted him to the hospital.
While we he was in the hospital, my son had a lot of questions for me. He knew his head hurt. However, he didn’t understand why it was throbbing with such intensity. Images showed that this VP Shunt was over-draining. As a result, his ventricles collapsed, and a hematoma developed within the tissue that covers his brain.
All of the words doctors used like an occipital subdural hematoma, ventriculoperitoneal shunt, and over drainage were terms my five years old could not understand. My son only understood his head hurt and the pain made him vomit.
After a midnight admission to the hospital, sleep deprivation was taking over the both of us. I wanted to help my son understand why he wasn’t feeling well. However, I had no way of explaining to him. The following morning after a few hours of sleep my son and I took a walk to the parent lounge for coffee. As I did my best impression of a zombie walking to their prey, I made my way to the coffee maker. Adjacent to the coffee machine was a small faucet. In a moment of clarity or complete delirium, I made a quick decision.
I quickly pushed his chair to the sink, and I asked him to look at the faucet.
With a quick flick of my wrist, the water poured out of the faucet as fast as a raging river. The pressure was hard and fast as it beat against the bottom of the metal sink.
“Do you see how the water is coming out of the faucet?,” I asked my son.
“Mommy, why are you doing that?” he responded.
“See how the water is moving out of the faucet and it’s coming out fast?.” I responded.
“Yes, mommy, I see,” He said.
“We are here in the hospital because your head has water just like this faucet. You have a bump on your head that works just like this faucet. Your bump (his shunt) was pushing out too much water. You need to have water in your head for you to feel good,” I explained to him.
His eyes perked up with his explanation, and he asked, “I have water in my head?”
“Yes, and sometimes you have too much water in your head. Other times you don’t have enough water. The doctors just changed your bump so that the water doesn’t rush out as fast.”
I turned down the handle on the faucet, and I asked him to look at the water as it moved from the tap to the basin.
“The doctors made it, so your faucet has less water coming out of it – just like this,” I said as I pointed to the water.
His eyes lit up as I watched him put together the information I had just provided him. He looked at me and asked, “So what does that mean?”
“It means that your head has more water inside of it now. Your head had a bruise inside that started to bleed, and now that will get better because there will be more water inside.”
“Wow, mommy! I have more water in my head, so I’ll feel better now,” he exclaimed with excitement.Finally, after hours of trying to explain to him what was going on in his body, he finally realized why we were at the hospital. We went back to our room after my coffee finished brewing. He had a smile on his face from ear to ear.
“Mommy, tell the nurse about the faucet in my head,” he demanded of me as his finger pointed to a faucet inside of his hospital room. “Show her what my faucet does.”
I walked to the faucet and repeated what I had just shared with my son. I looked at the nurse to show the demonstration.
She smiled at me and said, “Good job, momma, that’s pretty ingenious of you.”
While my son doesn’t have a physical faucet in his head, he does have a valve that controls the flow of his cerebral spinal fluid. By providing him a visual representation of what his shunt inside of his head does, he was able to understand why he didn’t feel well.
As I have navigated his many issues, I have learned over the years that visual queues, simple words, and stories help him understand his medical conditions. He may not fully comprehend the seriousness of what had occurred, but he realized that his faucet pushed too much water out of his head. Now he tells anyone we see about his faucet. He proudly says to them he has more water in his brain now.
Hydrocephalus is a complex condition that requires a lifetime of monitoring and surgeries. However, hydrocephalus can easily be explained to a child if you find the right way for them to understand.
Just remember your child’s faucet might need to be adjusted from time to time, it might break, spring a leak, or get clogged. Their surgeons are their plumbers that keep that faucet working properly and help your child have the right water level and pressure in their heads.
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