Anonymous Kernicterus is a condition that results from severely high bilirubin levels in newborn babies. Completely preventable, kernicterus is devastating for the way that it wreaks havoc on small children. In essence, excessively high bilirubin levels cross the blood brain barrier causing permanent brain damage. The resulting condition, Kernicterus Spectrum Disorder can leave children physically…
Anonymous I was very cautious throughout my pregnancy because of my anti-E antibody titers. During the second half of my pregnancy, my Maternal Fetal Medicine physician (MFM) was checking weekly ultrasounds due to the potential for fetal anemia. Even though Jacob was born four weeks early and placed on phototherapy lights the day he was born, he…
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…
Anonymous We think your baby has Kernicterus. Those words will never be erased from my mind or memories. The whooshing sound of the breast pump as I sat there with just the tiniest sliver of the curtain open so the doctor could see me as I pumped. I was pumping for my baby I had…
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…