Beyond the Numbers: What untreated jaundice means for my family

Beyond the Numbers: What untreated jaundice means for my family

November 11, 2013 by Kasey Haas, Guest Blogger

Shortly past dawn my little sister, Lexi, awakens. She coos like a baby dove, calling my mom to her. Mom nestles her in a blanket and snuggles her on the couch, urging tiny bits of food and water into her mouth.

Lexi (center) and Kasey (the author, right)

Lexi (center) and Kasey (the author, right)

The scene is reminiscent of moments from around the world as parents care for their tiny, helpless newborns. Only my sister is not an infant. My parents have been repeating this scene each morning of Lexi’s eleven years and unless something dramatic happens on the medical front, I imagine that when my mom is 80 and my sister over 40, their mornings will still be shared in this manner, because Lexi has kernicterus (KI), a lifelong neurologic injury caused by her newborn jaundice.

KI causes severe motor impairments and a form of deafness called auditory neuropathy, but it spares the intellect, trapping children in bodies that don’t work but with minds that function perfectly. As the morning progresses at our house, Lexi will multiply fractions, conjugate verbs in French, and learn about European history—but all at home as our local schools can’t accommodate a child with such advanced intellect and poor physical function.

Lexi’s story is relatively rare, but not unique. Shortly after her birth, my parents noticed a yellowish hue to her skin. Our doctor assured us that there was nothing to worry about. “Feed her often and she will be fine.” And with that we were sent home with the newest member of our family. No tests. No further instructions.

Read more here…

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