In Memory of Maryam

Hydrocephalus was a word I had never heard before, until it suddenly became part of my daily vocabulary when my baby was diagnosed with the condition at 28 weeks of gestation.

The news shattered my world. Before that moment, I had only seen unfamiliar images of children with large heads on the internet. I never imagined it could be my baby one day. 

When the sonographer told me that my baby’s brain was filled with fluid, I froze. The African blood in me rose with skepticism. “How could a machine know something so serious about a child still in the womb?”

I was confused, overwhelmed, and scared. But that was the beginning of a journey I never saw coming. 

Maryam introduced me to hydrocephalus, and through her, I discovered strengths I didn’t know I had—strengths in parenting, in advocacy, in love.  She brought out a version of me that fought fiercely, learned quickly, and loved deeply. 

Maryam was born at 38 weeks with a head circumference of 56 cm. Because she was in breech position, her delivery caused birth trauma—her left thigh was broken during birth.

I’ll never forget seeing her for the first time in the Special Care Baby Unit (SCBU). She was tiny, fragile, and wrapped in so many medical worries.
I was thrown into an emotional storm, wondering how I was supposed to care for a baby with a broken leg and a condition I barely understood. 

Hydrocephalus may not be rare in Africa, but awareness is. Google and YouTube became my second doctors. I researched endlessly, often with tears in my eyes. But the more I learned, the more afraid I became—until I stumbled across a video from Dr. Benjamin. His words were like a light in the dark. For the first time, I felt hope. 

At one month old, Maryam had her first brain surgery—an endoscopic third ventriculostomy (ETV). Before then, we had been draining fluid regularly at the neurology clinic.

After the procedure, her head became soft and sunken, her skull split into two distinct ridges. It was frightening to touch her head. But her doctors reassured me that it would fuse again in time. 

Sadly, the ETV failed not long after. We were given two options—try the ETV again or go for a shunt. I was terrified of the shunt. I had read about the complications, and I knew how few pediatric neurosurgeons there were in Nigeria. Every decision felt like walking a tightrope blindfolded.

The surgery didn’t come quickly. I kept pushing and pleading for Maryam to get the care she needed. Time wasn’t on our side. Children with neurological conditions need urgent intervention, but we were stuck in a system where “urgent” often meant “wait.” 

Finally, in April 2024, she had her shunt surgery at just four months old. She was so full of life—kicking, smiling, responding. From the first moment I saw her, I knew my baby was a fighter. But our joy was short-lived. A few weeks after the surgery, her shunt got infected. I was told there was pus filling the chamber of her valve.  It had to be removed. 

We were admitted again for weeks. As if that wasn’t enough, the hospital staff went on strike during our stay. I watched my daughter regress before my eyes.  She stopped moving the way she used to, and worst of all, she lost her vision. After eight agonizing weeks, we went home—without a new shunt. 

Sadly, Maryam passed away at 11 months old. My beautiful, brave baby girl. Her life was full of fight, but it was cut short—not by her condition, but by a healthcare system that failed her. This is not just our story. It’s the story of many children in Nigeria and across Sub-Saharan Africa. 

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Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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