Join us this week as CDH Survivor, Taylor Steffensmeier, shares her journey after she was diagnosed with CDH shortly after birth.
Tune in to at 6:00 pm EST, June 7, 2022 to https://www.blogtalkradio.com/cdh/2022/06/07/june-7-2022-guests–taylor-steffensmeier
Listen to archives of the radio show at http://www.cdhradio.org
Taylor was born with an undiagnosed left sided CDH at a rural hospital. She shares, “I was intubated and transported to a bigger hospital. The only hospital in the state at the time that had ECMO, which they only had one machine. Thankfully, when I needed it no one else was on it. I have had six diaphragm repairs, the last at the age of 20.” At five days old Taylor would have her first diaphragm repair while still on ECMO. They used a Gortex patch, and the next day she was able to come off ECMO. She spent a month in the NICU, but by the age of three, she would undergo four diaphragm repairs.
Taylor goes on to share, “I thankfully don’t remember my NICU experience nor my first 4 diaphragm repairs. I remember my 5th repair; I was 7 years old at the time and my 6th repair I was 20 years old at the time. My parents were my rocks. They taught me to stay strong, keep the faith and not to let a surgery stop me from reaching my goals. I graduated 2 years after my last repair with my BSN!”
Taylor was allowed to life a normal life, her parents letting her play softball all the way through high school. She remembers two of her reherniation surgeries. At the age of 7, she underwent a fifth diaphragm repair. Fast forward to the age of 20, she found out she at reherniated again and underwent a sixth repair. Taylor mentions she was her surgeon’s oldest CDH survivor and the only one who had reherniated so often, that he decided to try a different patch. He performed a reverse latissimus dorsi procedure after discovering she had very little diaphragm on her left side.
Three months after her last surgery, Taylor started nursing school. She graduated with her BSN and currently works as a nurse. Taylor went on to marry the man who was by her side from her last repair and helping her get through nursing school. Today, they have been blessed with two amazing children.
Taylor shares, “I have been blessed and live a pretty “normal” life. I have been blessed to be able to carry two babies and I work part time as a nurse. Other than the scars, others wouldn’t know I was every sick. I live with chronic pain ever since my last repair and I tire easier than most my age, but I don’t let it stop me or slow me down.”