Hydrocephalus Canada

“Baby Robin “ – A Story of Survival and Advocacy

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by Robin L. (Xanders ) Holloway

I was born in Izmir, Turkey in 1961. My parents were overseas while my father was stationed with the Air Force. As the story goes, my father was the first to note the swelling of my skull’s fontanels when I was only 3 weeks old. This was a problem. According to my parents, once I was diagnosed with hydrocephalus, this began a 3 year procession of surgeries and doctor appointments. They occurred in different countries and different states in the United States. Throughout the three years, my parents were cautious and wondered about my future, considering my limitations or my very survival.  I suffered from numerous secondary infections which did not make things easy to deal with for the military physicians or my family. My father did share with me that the physician who placed the first shunt was the doctor which designed the first shunting, for his own son in 1959.

I was considered a miracle from all accounts. According to my Mother, a Registered Nurse by profession, I went through a total of 3 brain surgeries in Turkey and Germany before returning to the states.  Two of them failed while the last, an V/P shunt procedure would last. The third and successful procedure surgery involved placing the shunt through my urinary tract and my fallopian tube (which was destroyed). That shunt lasted without issue until I was 27 years old. My parents were told after the placement using the fallopian tube, that it was either my life or the idea I would have a child. My parents obviously chose to save my life.

According to old medical records, there was one visit in February of 1966, when a physician shared with my Mother how my younger brother, “seemed more advanced in his learning ability, ( He could understand colors and I could not). Then again in April, 1966, the same doctor shared with my Mother there may be “limited programs for intellectual development.” In both cases, I wondered what was going through my Mother’s mind. My older brother can recall a rather humorous story the day that Bobby Kennedy was killed in 1963. Rex would share I took my first steps while our parents were glued to the television until he got their attention.  “Look Robin’s walking “, my older brother would share; quite a shocking day.

When I was sixteen, I went to school in a small town. I was teased about a thick scar on the right side of my neck. A boy in my class asked me if I had tried to kill myself. I went home crying and it was then that learned more about my first sixteen years and the painful memories that my Mother had kept from me. The secrets I discovered that day completely redefined my life.

My parents were divorced in 1975 and my mother was more concerned about survival than telling me details about my condition. As I stood in our brightly lit kitchen, I was told the details of the start of my life. My mother shared little technical information, but only specific events to teach me about my early childhood. There was no sharing of anything until that day of discovery when I was only sixteen. And it was years later, after I was married, that Mother allowed gave me the military medical records that detailed my condition and the treatment I received. My Mother said it would be the right thing to share my past and details about my spina bifida with any boy I intended to marry, to say there was a 50/50 chance of my having any children. I took her advice to heart and I remember telling my boyfriend, in my senior year, about the truth and his reaction was to use it to break our engagement. Then I met the man I would marry and who would become my daughter’s father, he was much more understanding. We were very lucky to have our daughter Rachel. She was observed through numerous sonograms and was born healthy and beautiful.

My Mother shared that my hydrocephalus was in an “arrested state.” She stated that it would probably mean there was no need for any surgeries in my future.  Mother was a strong woman and to share this was a huge thing. I remember thinking back as I grew, both of my parents treated me the same as my brothers. When we were kids, we all played football, dodge ball and played in the snow on a winter day.  I never actually competed in sports but looking back it was probably a good thing.  I wrestled with my brothers all the time and played our favorite game of “Sandwich”.  I was disciplined when I misbehaved.

After Mother was done explaining, I don’t know how she felt, whether it was a relief or of sadness I will never know. I left our small house, got into my little car, wanting to seek out one of my closest friends, any of them, to share this discovery.  I don’t recall if I ever found any of them that day but I found myself lost in the music coming from the radio.

My childhood was colorful and taught many people things about this “Baby Robin” . I have the true belief that my very being here is not only a true miracle, a true story of survival but that I have the responsibility to share with others.  I needed to share my story and that of my family from 51 years ago. 

My parents were both intelligent people, with two healthy sons and yet had to deal with my condition, a condition which was little known much less having any supports where they were, even from the physicians. It sounds like they were willing to do little to act in a positive manner past completing the surgeries.  My parents were my advocates in the way I was raised, with my brothers and in making decisions, they were my advocates. Even making the decision to bury my condition instead of telling me was a decision made with love. They were my advocates until their deaths.  Now I am my own advocate. Through speaking to others face to face, over facebook, in the writing of my own book, I am my own advocate but through sharing my own experiences.  I hope to help others in the same journey that was my own family’s journey. This is why I am here.