Lilien

I was born in 2004, and everything seemed normal at first. My parents took me home, and for the first two months of my life, I developed like any other infant. But at two months old, I started crying frequently, and my head grew rapidly. When my parents took me to the doctor, he diagnosed an intraventricular hemorrhage, a brain bleed. He explained that the bleed was quite small, and I would not require any treatment.

At three months of age, my parents noticed further symptoms like throwing up and missing milestones, so they visited my pediatrician. He sent me to the hospital, suspecting hydrocephalus. The hospital confirmed his diagnosis, and I underwent my first ventriculoperitoneal (VP) shunt surgery that same day.

My parents, who had recently immigrated from Kasachstan at the time, could barely understand my German doctor and were terrified when they heard sentences like: “We don’t know if your daughter will ever walk on her own”, “She will most likely be mentally impaired,” and “Be ready to be caretakers her whole life”.

After surgery, my symptoms faded quickly, and I started hitting milestones, like holding up my head and eventually walking on my own. When I started school, I showed no mental challenges and was always at the top of my class. Despite multiple revisions, caused by everything from a clogged shunt to a malfunctioning valve, I was able to recover quickly and was never in the hospital for long.

That changed at age 11.

During a routine EEG at age nine, my pediatric neurologist noticed “spike waves,” which suggested I might have an epileptic condition. Since I hadn’t experienced any seizures, he decided to do yearly follow-up visits instead of treatment.

Two years later, I remember watching a YouTube video in the evening before falling asleep. When I woke up, I was lying on the floor in my bedroom with my crying parents next to me, on the phone with 911. In the ambulance, I learned what happened –I had a seizure.

Around 4:00 a.m., my parents heard strange breathing noises coming from my bedroom. When they checked on me, they found me convulsing on my bed, gasping for air. My dad laid me on the ground and tried giving me rescue breaths, while my mom called 911. Two minutes later, I regained consciousness–confused and scared.

At the children’s hospital, doctors ran a series of tests that showed nothing new, apart from the familiar spike waves. Since they couldn’t reproduce the seizure, and I didn’t have another one, I was discharged without a clear explanation and without medication. What I was given were restrictions: no swimming, no bike riding, and no activities that could end in disaster if another seizure struck.

This was the first time I truly felt impaired by my health, and I couldn’t help but wonder if the hydrocephalus had something to do with it. I haven’t experienced a seizure since that day.

Over the next years, I was thriving despite all of the revisions and began to dream about the future. I spent so much time with doctors that I wanted to be like them–some sort of superhero, which is how I felt about my doctors as a child—and help other patients.

When I wasn’t accepted into medical school in Germany, I applied for the entry exam in Austria and passed on my first try. Despite my parents’ fears about whether I could manage my health problems on my own, I moved out at age 18 to go live in another country.

I’m 21 now and have had 11 surgeries. I am in my third year of medical school and thriving! A year ago, I moved in with my boyfriend of six years, who also relocated to Austria. Since then, I’ve had one revision, but thanks to the fantastic care of the local neurosurgery department and my boyfriend’s constant support, I was able to recover quickly.
My current plan is to pursue residency in either neurology or neurosurgery, and I feel confident that I can make it.

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