Samantha, 23

August 7th, 1997 – the day I was born 10 weeks premature along with my twin brother—was the start of scary journey. Having both weighed in at just under 4 pounds, unfortunately I was very sick with hydrocephalus and a grade 3 brain bleed. At this point, my family did not know if I was going to make it.

Off to Boston Children’s Hospital I went where the greatest neurosurgeons and my parents had no choice but to make a life-saving decision and that was to put in a Ventriculoperitoneal shunt or VP Shunt. The shunt would regulate any fluid build-up and relieve pressure around my brain. Following this, I could not take anything by mouth so they inserted a Gastrostomy Tube (G Tube), so I could get the calories and nutrients needed. I spent most of my first year in Boston with the tube inserted and continued to need it when I finally got to go home.

In March of 2012, I found out that I would need my very first shunt revision. At this point in my life, I should have already had a few revisions, and doctors were surprised I had gone this long, between my body growing and going through changes. In the beginning, it was scary. It was my first surgery that I would remember and I was nervous to see what it entailed. Luckily, it was not the entire shunt system that was malfunctioning, it was just the valve in my head. I think the scariest and most disappointing part was having to lose a part of my hair due to the surgeons having to shave the part that they needed to operate on. Hair grows back and I knew then I could move on to live a happy and less stressed Freshman year of high school.

Routine checks of the shunt weren’t really required because if there was an issue I would show symptoms, such as headaches, nausea, stomach pain (near the tubing).

My symptoms returned in 2016, my senior year of high school, when I started getting more headaches than usual and just not feeling myself. I called my doctor, went into Boston to get an MRI ventricle check, and got the news that the whole shunt system was malfunctioning. They had to replace the valve in my head, as well as the tubing, which drains into my stomach. I woke up from this surgery and it felt like I had just done a very intense ab workout. This pain lasted for a good week following surgery. I knew this pain was short lived and that I was “fixed” for another long while now and could graduate and go off to college healthy as can be.

They say things happen in three’s and I can say this for myself. In October 2019, I was preparing for a trip to Disney with one of my good friends and her daughter. I hadn’t been on an airplane in over 10 years so I was a bit nervous. About two days before take-off, the upper neck and lower back of my head by my shunt tubing was sore. I thought it was stress and just my nerves of the idea of flying and leaving home for a week, but this happened throughout my whole vacation, but I didn’t let it hold me down. I made an appointment with my doctor when I got home. An MRI showed the shunt tilted and my skin very thin where it was placed. Surgery was scheduled to place the shunt further back to prevent it from tilting even more. I recovered enough to go home and continue my work life in just a few days. A month after, I still didn’t feel fully recovered. An emergency room visit showed that the fluid in my brain was infected and one of my ventricles was obstructed. They had to remove the shunt immediately.

Luckily this happened because now doctors could test and see if I was still using the shunt. My doctor came to the conclusion that maybe I didn’t need the shunt anymore and that he was going to try a procedure called an Endoscopic Third Ventriculostomy or ETV. This would open up a new pathway for any extra fluid to flow. So I had surgery for an ETV procedure and after a few more days of antibiotics to clear the brain infection, I was able to go home.

Just like that, after 22 years, my head was hardware free. Never in my whole life would I imagine myself not needing this life-saving hardware. The shunt was a part of me, something that was a huge part of my everyday life. In the end, I am beyond relieved and now know that overcoming something so serious is absolutely 100% possible.

Tell us about your journey with hydrocephalus!

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