Warriors of Hydrocephalus – changing the world one mindset at a time

June 19, 2019

I am the left brain
I am analytical and practical
A master of words and language
I am accurate and always in control
I am order and logic
I know exactly who I am

These lines are an excerpt from an anonymous poem I came across on the internet. The qualities mentioned above are attributed to a fully functioning left brain. You see, I happen to know a 16 year old girl, Sunayana, who analyses her life for what it is and lives it with utmost practicality and logic. Blessed with the gift of the gab she wields a mastery over words that could cast a spell on anyone who meets her. Comfortable in her own skin, she is strong willed and self- assured about what she wants from life. Are you wondering what is Sunayana doing differently? Well, Sunayana was born without the upper quadrant of her left brain. She is the reason I count my blessings, because this spirited child calls me ‘Mamma’.

During one of my regular scans in the 8th month of our pregnancy, we were told our baby would most likely be born with a medical condition called ‘Hydrocephalus’. For a layman’s understanding Hydrocephalus is a condition where excess cerebrospinal fluid accumulates in the brain and causes pressure in the brain. We met many doctors and nobody could assure us about the safety of our unborn child. On January 12th, 2003 Sunayana was born premature and at birth her head was the size of a 5 year old child’s head because of Hydrocephalus. What ensued soon after her birth were endless trips to neurologists and paediatricians trying to find a way to eliminate her pain and discomfort. 18 days after her birth, she was wheeled into the operation theatre for a brain surgery to place a shunt that would restore normal flow and absorption of cerebrospinal fluid. Even while getting into surgery we were told that Sunayana would have a limited life span and she may not make it to her teens. Those were trying times for us, it felt like we were shooting in the dark and there was no light at the end of the tunnel.

But the light of our lives, Sunayana, proved us wrong! She had a successful recovery after the brain surgery and despite the developmental challenges she has grown into a sassy girl with a mind of her own. While a few medical reports state that comprehension, reading, music and math come from the left side of the brain, we have observed that Sunayana enjoys a good piece of music and even plays the guitar using only her right hand. If you are wondering why only her right hand, it is because the left side of her body receives insufficient sensory input from the left brain to perform everyday functions that most of us take for granted. Sunayana is living proof of the adage ‘where there is a will there is a way’. My warrior princess soldiers on with a zest for life as she travels the world with us, makes new friends wherever she goes, passionately follows cricket and makes the most of every moment that she spends outdoors.

While we leave no stone unturned to live life to the fullest each day, it does not mean that it is a smooth sailing journey. Strangers staring at her gait, asking obnoxious questions in the elevator, prodding her about what is ‘wrong’ with her are part of our everyday struggles. Over the years I have realised that Sunayana has embraced herself so gracefully that contemptuous people or their hurtful questions do not affect her in any way. Due credit must be given to her father who has equipped her with life lessons that are her guiding light when people pull her down, for no fault of hers.

Sunayana epitomises ‘carpe diem’ every single day. She is no victim of any circumstance; she goes about her life with a plan and sees it through, no matter what. It is her iron will to survive the odds and live through medical prognosis that nonchalantly claimed she might not make it beyond a certain age. Sunayana’s birthdays are a big deal in our household every year. We celebrate our sunshine girl, her zeal to choose life over and over again, her vivacious spirit to own this life and make something worthwhile out of it. If it was not for Sunayana we would have never had a chance to look beyond ourselves and be crusaders for inclusivity and sensitivity towards children who are born with a condition that they have no control over.

Leave a Comment