Savannah

Hydrocephalus became a new word in my vocabulary in May of 2011. At this point, I had never met anyone living with the condition, let alone what it meant or how to spell it. My daughter Savannah introduced me to hydrocephalus 13 years ago and she has taught me all my parenting and advocacy skills, ones you would never find in a textbook.

Hydrocephalus was Savannah’s first diagnosis. I can still feel the trauma of seeing my baby girl curled up in a ball as a needle was inserted into her lower spine for a lumbar puncture to measure her cerebral spinal fluid (CSF). She was teeny tiny, her skin mottled, and I felt incredibly helpless as her mother. I wanted to comfort her but all I could offer was my touch as she laid on the small table while continuously dipping her pacifier into sugar water. Honestly, I should have known the first time she faced this procedure and handled it like a champ, that she would be the most courageous girl I would ever know.

During the first six weeks of Savannah’s life, she remained in the Neonatal Intensive Care Unit (NICU) as her fragile body endured test after test. Just one day shy of her being one month old, we handed our beautiful newborn over to a neurosurgeon so that he could place a ventriculoperitoneal (VP) shunt, one of the most terrifying days of my life. It was a tough few days, as I watched my delicate daughter fight through something unimaginable. As she continued to heal, we knew our journey would be different from what we had envisioned, but our love for her was fierce.

On July 2, 2011, at six weeks old, Savannah was finally strong enough to begin her life at home, and we were overjoyed. With numerous follow-up appointments and Early Intervention, Savannah thrived in the comfort of her home.

Savannah was my first and only child and I had no idea what to expect when raising a child with hydrocephalus. I was warned about the potential for permanent disabilities such as overall developmental delays, learning disabilities, and the potential for seizures, however, I was never informed that she might face a visual disability. She had a downward gaze, and her eyes were often in a sunsetting position. I initially thought her disinterest in toys, lack of eye contact, and her love for lights were simply due to her hydrocephalus or just typical aspects of early development stages.

At six months old, our early intervention specialist made it very clear that she had concerns about Savannah’s vision when she so rudely stated, “It’s like the lights are on and nobody’s home,” before covering her own mouth as in disbelief of her blunt words. We followed up with ophthalmology and at eight months of age, Savannah was diagnosed with Cerebral/Cortical Visual Impairment (CVI). I was absolutely devastated. How would I teach my child who was now considered legally blind?

Over the years, I have learned that Savannah is not only my daughter, she’s my greatest teacher. Her resilience and unique way of navigating the world have completely reshaped my understanding of motherhood. Through her, I’ve gained knowledge about many rare conditions and other medical conditions including cerebral palsy, epilepsy, eosinophilic esophagitis (EOE), prolonged QT syndrome, and especially cerebral/cortical visual impairment (CVI).

Savannah’s journey inspired me to become a Teacher of Students with Visual Impairments (TVI), allowing me to turn our challenges into a greater purpose. Today, I use my expertise to guide other parents and caregivers navigating the world of CVI.

Savannah has shown me the value of compensatory skills, how relying on auditory and tactile skills can create pathways to understanding. With routine, context, and predictability, she thrives, reminding me daily  that true strength is found in resilience and determination. Through her, I’ve learned not only how to be a parent, but how to advocate, evolve, and grow.

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