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”…

Justin’s Decision: Deep Brain Stimulation

DBS Written by Justin (A Creative Writing English Assignment)              Justin talks to his mom about having deep brain stimulation (DBS) surgery, kind of like a pacemaker that can send electric charges in the brain.  15-year old Justin has kernicterus, which is brain damage caused by severe newborn jaundice.  He has athetoid cerebral palsy, which…

Let’s Make Kernicterus a Never Event

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…

PICK @ PAS 2013

Posted on May 3, 2013 by Miriam As I post pictures tonight, I think of how deceiving pictures can be. They are the split seconds. I tried to convey some of the reality of our day. In truth, it brought the challenges of formula pumps leaking all over the restaurant floor, a footrest falling from a wheelchair,…

Preventable Tornado

Jaundice. It’s a word most parents are familiar with, but to my group…it sends chills down our spine. We don’t joke about cute yellow babies, or pumpkins that are orange. For us, jaundice was the strange weather that heralded a MASSIVE TORNADO in an innocent child’s newborn body, just days after coming home from the…