My Story

At about 20 weeks in utero, doctors discovered an anomaly. I had hydrocephalus, as the aqueduct of Sylvius was blocked (that’s at the posterior of the head, and superior to the spinal cord). My head swelled as more CSF (Cerebrospinal fluid) accumulated inside it. During another ultrasound, doctors thought that I had no brain. That was how much CSF accumulated in my head.

I was born 2 weeks early (about 38 weeks gestation) via Cesarean section because my head had swelled to the size of a two-year-old. At about 3 days old, a neurosurgeon implanted a small device called a shunt in my head. The type I was given (and still have) is a programmable (magnetic) ventriculoperitoneal (VP) shunt. This shunt drains into the abdominopelvic cavity, where it can be absorbed by my body. I have had to have several revisions on this, my first less than a month after the original surgery, the 2nd one just a month after; until the doctors were able to find the right spot. My most recent revision was at age 9.

After drainage, my mother says that I looked like a conehead! (She said it with lots of love!) This was due to the fact that the backbones of the cranium had grown too much in comparison to the front ones, which were microcephalic in comparison. Doctors later did a surgery where they broke the bones of my skull and put them together again properly (like a jigsaw puzzle). However, when I was about 5 years old, I had surgery to repair a small hole in the bones on my forehead which had not fully closed. My mom said that the only thing separating my brain from the outside was my skin and that you could see my brain pulsating through the skin!

The type of hydrocephalus I have (congenital) is due to aqueductal stenosis. Between the 3rd and 4th ventricles, the Aqueduct of Sylvius empties into the spinal cord. In aqueductal stenosis, the emptying cavity is blocked. Some fluid is reabsorbed by the brain, but all of that intracranial pressure (ICP) builds up and can harm someone and cause things like headaches.

The increase in pressure can also cause vision problems. I am nearsighted (I have myopia), and although it was discovered after fluid had been building up for more than a year, it could also have been genetic, as my mother also is myopic. But, I did lose part of my left peripheral vision and had some memory issues, due to complications with a shunt malfunction, due to a broken catheter, at age 9, which gave me some mini-strokes over all of my brain, but more so on the right side of my brain.

I have spent a few years doing therapies (vision, speech, occupation and physical therapies) and after those therapies, I can now do things just like before. I am active in Girl Scouts, Drama, Student Government, and Model United Nations play an instrument, and I am an advanced student. Hydrocephalus is only an aspect of me, like how my eyes are brown, and I’m a bookworm. Hydrocephalus isn’t all of me, it’s only a small piece of the puzzle that makes me, well, me.

~ Mod Trixie