Made of Gray

Why the Zika Virus and Microcephaly Epidemic Hits So Close to Home

Raising the Rare ChildHolly D GrayComment

Ever since the news of the Zika Virus and its link to microcephaly; I've been either scouring over the details or immediately turning away. The Zika Virus has potentially been linked to Microcephaly with a smooth brain, brain lesions, eye lesions and Guillain-Barré Syndrome to date. 

It's big news here at home especially since the first American case was found in Dallas. Yesterday, I blazingly attacked a gigantic mosquito in our home. I won, but the threat, just like with the West Nile Virus is on the mind. 

The Zika Virus and the imagery of the sweet babies affected by microcephaly is heart wrenching. The look of worry in their mother's eyes isn't new to me. The videos showing constant bouncing, therapy teams, expert doctors and the subtle nuances of cerebral palsy are all too familiar. The term microcephaly may be a new to the general public, but the diagnosis isn't new to our family at all. 

Caleigh was essentially born with the diagnosis on her chart and it hasn't gone away over the eight plus years of her life. Caleigh's microcephaly could have been caused by prematurity, or most likely, her Periventricular Leukomalacia or PVL. Microcephaly has moved down the list of important labels that we rattle off when asked, but for the first three years of Caleigh's life it was a huge priority.  

Every day in the NICU Caleigh's head was measured. Every doctor's appointment for the first three years measured her sweet skull. 

Every. Single. Appointment. 

From her Cranial Helmet, GI, Pediatrician, Pulmonolgy, Endocrinology, Genetics, Nephrology, Emergency Room, PICU, Inpatient Hospital Stays, and to Therapy Evaluations; the tape was brought out and a measurement was jotted down. 

It was asinine considering she had appointments multiple times a week. I vividly recall the hope I would get in those early days to have a centimeter or two of growth. Equally so, I remember the disappointment that came from multiple nurses and doctors measuring her head a little different each time giving us false hope. 

Imagine weighing yourself daily if not multiple times a day and the emotion that could bring if you were trying to gain or lose weight. This measurement was similar only it was our child's brain that was on the line. It adds to the devastating news of an infant brain injury and makes the heartbreak raw and open at all times. The news of the Zika Virus and microcephaly opened those wounds for me in a way that I didn't expect. It definitely brings up emotions of my past that I tend to bury deep down. 

Cranial Band via MadeofGray.com

At some point in the past eight years, I started ignoring the measurements and not worrying about it. I can't remember just when that happened or when that transition in thought came along. After the not so successful stint with the cranial helmet, Caleigh's thick curly hair started growing in slowly and the visible differences in head to body ratio lessened. It's something I don't think about on a daily basis anymore. 

Microcephaly is one of those terms that doesn't go away with time, but only moves aside for the many other diagnosis that come with a small brain. The families of the Zika Virus might experience seizures, developmental delays, cognitive deficits, GI issues, and pulmonary problems. I could go on and on, but I don't want to. The pain I feel from this news is filled with empathy. I only wish I could take away the worry of the pregnant women and parents. I've been there and it's a scary place. I wouldn't wish the uncertainty of microcephaly on anyone.


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