November 18, 2013November 20, 2013 Miriam Advocacy, Partnership, Prevention, Research - Rescue, The K word

In the Shadows

They are in the shadows.

Babes are at risk. (Jaundice can become toxic when not managed properly.) Children live with no viable treatment options. Research funds are needed. Adults live in immense difficulty. Families struggle to hold together fractured pieces of their lives.

…all because of jaundice.

There are those shaped by “the K word” and those who are threatened by it.

They live in the shadows. Many babes are affected by jaundice, but not all escape it unscathed. Here in the US, there is no reporting system for kernicterus. Due to the negligent nature of the diagnosis and the ethical concerns that accompany it, it is not always diagnosed either. How many are living with kernicterus and do not know it? The effects of kernicterus take months and years to become apparent. (Newborns don’t need wheelchairs. They aren’t expected to walk or talk. The movement disorders, sleep disorders, hearing loss, vision loss etc all become apparent as children miss milestones. Without proper analysis, the k word is easily swept under the rug, misunderstood, mislabeled.

And what of those living with the milder effects? Neurological hearing loss (that can only be discovered under sedation with a test that measures brain wave response to sound.) How often is this misread as behavioral – smart children with unpredictable hearing and difficulty communicating? Milder forms of kernicterus also seems to come with hyperactivity – how often is that mistaken for other disorders?

The truth is that the numbers of kernicterus are hidden in the shadows.

Our kids, those in picK are likely the tip of the iceberg, and our numbers grow weekly. And the truth is – one case of kernicterus is one case too many. The effects are just too catastrophic!

How do we rescue? How do we make the change? How do we illuminate?

How do we?

On the front end, we turn the light on! We spread the word – jaundice can do that, and it doesn’t have to! TEST! Prevention.
For those living with the K word, we support the research that will lessen the load of that K. Research for viable diagnostic tools and treatment options that can lessen the effects of the K…diminishing it’s effects. Rescue.

Please partner with us in shining the light needed into these shadows to rescue those living with the K!

November 11, 2013November 17, 2013 Miriam Advocacy, Partnership, Prevention, The K word

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)

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.

Let’s Make Kernicterus a Never Event

lexi-yawning-300x225

September 18, 2013 by Kasey Haas, Guest Blogger

In 2001, the National Quality Forum labeled kernicterus (KI)– a disability caused by untreated newborn jaundice and characterized by motor and hearing impairments – a “Never Event”. Alongside events such as leaving sponges and tools inside surgery patients, KI was classified as an event that is so easy to avert, that it should absolutelynever occur. Yet, even in the United States, we have failed to eradicate KI.

Why does it persist? …Read more here

http://blog.d-rev.org/2013/09/18/lets-make-kernicterus-a-never-event/