Hydrocephalus Sucks

6 years ago

So here is my post devoted to Hydrocephalus.  For some reason I have recently been feeling called to write about Hydrocephalus, or be more active in spreading the word about it. And isn’t it convenient that this week my son just happened to have his Hydrocephalus symptoms act up more than usual, due to his shunt getting disconnected from it’s tubing, and he had to have surgery to reconnect it.

Some of you might know what Hydrocephalus is since I’ve touched on it before, or you might know someone who has it, or you might be completely unaware of what I’m talking about and decide to skip this post all together. 

When you Google Hydrocephalus you can find a lot of medical web sites that can tell you what Hydrocephalus is, what symptoms it causes, and how it can be treated.   Wikipedia has a good overview of it too. 

Levi was diagnosed with Hydro at 12 days old. He was in the NICU at the hospital where I delivered him 5 weeks premature.  Everyday he was in the NICU was awful for me. I wasn’t able to stay there with him and all I wanted to do was bring him home. On his 12th day in the NICU I was told that a doctor had ordered an ultrasound on his head to be done that morning and that they would come back and tell me the results in a couple of hours.  I waited all day, sitting by his little plastic basinet, holding him, and hoping nothing was wrong.  Finally at 5 PM, one of the doctors came by and asked me how we were doing that day. I started crying, saying how hard it was for me to not have him home with me, how he still wasn’t eating on his own, how they did another ultrasound on his head but hadn’t come back to tell me anything yet.  I just basically let everything spill out.  His doctor told me to hold on, and he would call and get the results right then for me.  He was gone maybe 30 minutes and I spent the whole time praying that everything was okay. 

When he came back he told me, “Levi has what they call aqueductal stenosis in his 4th Ventricle. It’s Hydrocephalus.” I looked at him, nodding my head, not knowing what those words meant at all. He began to draw me a picture of what it all meant. There was a blockage of the fourth ventricle in his brain causing fluid to build up, in his ventricles, which was expanding his head and putting a lot of pressure on his skull.  He said they needed to transfer him to the Children’s Hospital right away, and his colleague would be able to run more tests and possible he would have surgery that night.  I lost it. Here I was all by myself, completely worn out from having a baby 12 days ago, not being able to be at home with him, spending 20 hours a day in the NICU just so I could be with him, and now I was being told that my 5lb baby was going to have to have brain surgery.  It was one of the loneliest times I’ve ever felt. I had to share the news with Justin over the phone, and then call my mom and let her know. I sat there holding Levi, and crying until Justin was able to come from work. 

Levi was transferred to Children’s Hospital that night, and spent a week there being monitored and tested. He finally started eating on his own, which was a major relief.  He was assigned a Neurosurgeon to go over his case and decide when or if he would need surgery. His Neurosurgeon said his Hydrocephalus was mild enough on it’s own that we could go home and he would be monitored as an out patient.  At 3 months old, we were told that the swelling wasn’t going down and that he would need surgery to install a shunt that would drain the fluid from his ventricles.

His first surgery was quite scary for me. Not really knowing what to expect or if the surgery would make things better for him.  And seeing him the first time afterward was one of the hardest things I’ve gone through with him. He was so groggy, and he had two incisions on his head, and one on his stomach. He was crying, yet it didn’t sound like him.  The breathing tube he had had during surgery made his voice sound hoarse.  We spent a few days in the hospital before we went home.  I didn’t know much about his shunt at the time. I didn’t know how many surgeries he’d have to have, or if he’d be okay after this one surgery or not. 

levi's first surgery

We spent the next year and a half not knowing what was to come.  Levi was doing great, growing like he should, playing like he should, and not really having too many symptoms from the Hydrocephalus.  But then in the summer of 2010 he started having episodes of headaches, and vomiting.  Not all the time, just often enough to make me think it could be something he was eating, or maybe he was getting motion sickness from the car.  In September 2010, he started getting sick daily. It felt like I couldn’t take him anywhere for fear of him getting sick in the car or getting a bad headache and needing to sleep it off.  I finally put a call into his Neurosurgeon’s and after meeting with his doctor, she told us he need a shunt revision and that it would hopefully fix how he was feeling.  It didn’t.  Then we were told he needed to have an ICP Monitor done so they could measure the pressure inside his head and hopefully they could learn more about what was going on.

icp monitor

The ICP Monitoring allowed them to diagnose him with Slit Ventricle Syndrome. SVS meant that his shunt was draining too much fluid from his Ventricles.  Only 15%-20% of infants shunted later develop Slit Ventricle Syndrome. My son was one of the unlucky ones. Slit Ventricle Syndrome is also more difficult to manage.

levi's icp hospital stay

In January 2011, Levi had to have his 4th surgery, this time another shunt revision. This surgery was harder than all of them, and it took them almost a week to get his shunt valve at a setting that was good for him.  Since January he’s had a lot fewer vomiting episodes and less headaches, but he does still get them.  Things like too much sun, or over heating, or too much activity can make him have headaches, vomit, or feel so tired that he sleeps for hours and hours.

This past week he started having trouble again. More headaches than normal, throwing up multiple times, complaining of stomach pain, and a new symptom that his doctor never mentioned could occur, constipation.  We took him into the ER on Thursday so they could do another CT and x-rays, and they found out the tubing connected to his shunt to drain the fluid into his abdomen had become disconnected. He was admitted and scheduled for surgery the next morning.  Thankfully this surgery was quicker than the others and his surgeon only had to reconnect the tubing.  We were even able to go home late Friday night. 

Having a child with Hydrocephalus and Slit Ventricle Syndrome is difficult. It means never knowing when he could get sick, never knowing how many surgeries or hospital trips he’ll have. It means being more cautious about the activities he does, not knowing if he doesn’t feel well because his shunt is malfunctioning or if it’s just because he doesn’t feel well.  But having a child with Hydrocephalus and SVS has also made me try to stay positive about other things in our lives. Because no matter how sick Levi has been, there is always someone who has had it worse than he has. 

I could write so much more, as I am sure any mom who has a child with a condition could, but instead I’m going to leave you guys with a link to the Hydrocephalus Association in case you want to learn more about this condition or know someone else who could use this information.  And I have also included a linked button to the Hydrocephalus Resource Library on my sidebar. It’s a great resource for anyone looking for more information on Hydrocephalus.

You can also follow the Hydrocephalus Organization on Facebook, or Twitter.

This is an article written by a member of the SheKnows Community. The SheKnows editorial team has not edited, vetted or endorsed the content of this post. Want to join our amazing community and share your own story? Sign up here.

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