Today is the very episode of my new podcast, If I’m Being Honest.
In this podcast, we will be talking about all the subjects that we kind of tip toe around in society. We’re going to chat about the controversial, the censored, and the taboo. I’ve invited guests to talk with me about their most intimate stories, in an effort to demystify these subjects, and humanize their experience.
This week, I was honored to speak with Erin. Erin is my best friend from college, and I’m lucky to have this amazing woman in my life. She lives in South Georgia with her husband, Matthew and five year old son, James. In the summer of 2008, Erin gave birth to a beautiful baby girl, Isabelle. It was quickly determined that something was wrong and Isabelle wasn’t a healthy newborn.
During much diagnostic testing and over a month in the NICU, Isabelle was found to have a chromosomal disorder with secondary diagnoses. She was diagosed with 18p deletion and holoprosencephaly. Erin describes this as missing the short arm of one of her chromosomes, and a brain malformation that occurs when the brain doesn’t fully separate into two hemispheres during development. Unfortunately, none of this was detected prenatally.
Isabelle lived for three and a half years in the sole care of Erin and Matthew. Erin mentions on the show that Isabelle never surpassed the cognitive development of a 4-5 month old baby. She had a feeding tube and even a tracheotomy for part of her infancy. While there were scares and complications, no one expected the morning that Isabelle passed away in her sleep at age three.
Erin takes us through that day and the days that followed. She gives us candid accounts of her grief process, the toll it took on her marriage, and the PTSD she still lives with.