A Life Rearranged by Kernicterus
Jaundice can do that. I tell people this now - what we only wish we could have known. Mismanaged jaundice forever altered my baby boy's life. It wasn't until he was dying, with a slew of people rushing around him in the ICU, that they began to put him under lights, draw his bilirubin levels, begin blood transfusions. At that point the thing I heard nurses whisper "brain damage" became our reality.
They call is kernicterus - a word for a dozen ways that my boy is severly impaired in his ability to hear, see, eat, sleep, move. Some might mistake it for spastic quadriplegia at his level of severity. With a bilirubin level of nearly 46, the yellow stuff invaded his brain and damaged it in almost the same spot as parkinson's, leaving him trapped in a body that doesn't work but, with his intelligence intact.
He's a happy guy and we are all about optimizing his future and reaching out to other families living with this condition. The extensive and unique ways that kernicterus affects it's patients mean that caregivers are invaluable resource to one another - in forging ahead with research, sharing about treatment for our kids, and spreading the word that jaundice can do that.
pic-K.org
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