Rare Conditions and Interviewing Practitioners

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…

Kernicterus: Jacob’s Story

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…

Kernicterus, Medical Professionals and Judgement

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…

We Think Your Baby Has Kernicterus

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…

Kernicterus

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…

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…

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…