Anonymous There are some days that are burned into your memory. You can remember these moments with such clarity. A moment for me was when doctors told me that my son would never walk and would never talk. And, with that information, I knew he would never catch frogs in a pond, he’d never jump…
Every year, we hear about newborn babies that have suffered from mismanaged jaundice and are reeling from the effects of severe hyperbilirubinemia. The stories of these families remain the same – they were ill advised about neonatal jaundice, medical professionals did not take their child’s jaundice seriously and their children are suffering the effects. Mismanaged…
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”…
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…
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…
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…
Posted on May 21, 2013 by Miriam May 2nd 5 moms, 3 of which brought their kids with KI, (equipped with the wheelchairs that KI brought into their lives…and more than a few other pieces of medical equipment) to DC. We were invited quests at the pediatric Academic Society’s annual meeting, particularly the bilirubin club, the global prevent kernicterus…
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,…
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…