Posts in older
"In 27 years, I’ve conquered 10 surgeries, 5 repairs, graduated with my RN, BSN, now working in a hospital and became a wife to an amazing husband and proud mama of two! " - Taylor's CDH Story

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors notice something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away, so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO.

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"Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given! " - Landon's CDH and CHD story

On day 323, we were discharged from the hospital...just a few days before Landon’s first Christmas! What a treat it was to spend Christmas together outside of the hospital. And on day 355, Landon finally made his way back home to South Carolina! Just one week shy of his first birthday! Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given!

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“Caleb is now a 17-year-old high school honor student who is musically talented and a varsity baseball player." - Caleb T. CDH Story

We went home with more questions than we had going to that appointment. In a short amount of time, we learned what we could about this life-threatening birth defect. We also learned that Pediatric Surgeon Dr. David Kays had one of the highest survival rates in the world for a congenital diaphragmatic hernia repair.

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“To most outsiders, CDH is ‘limiting’, but for me, it is the complete opposite. My CDH drives me to do well in school…” - Angel's CDH Story

To most outsiders, CDH is ‘limiting’, but for me, it is the complete opposite. My CDH drives me to do well in school, and because I was lucky enough to have an amazing doctor like Dr. Kays, I am able to pursue all of the things that I love to do, things that most people would be surprised that I am able to do.

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" I was sad; I hurt, but I was going to fight." - Jayden's Story

At that moment, I did not care if my child was a boy or a girl; I didn’t care about my classroom; and I didn’t care how I was going to fit a baby into the mix.  I was sad; I hurt, but I was going to fight.  Julie did share with us we were having a boy, and Jon was so excited.  His words were, “Yes! A football player.”  My words, “I just want him to live.” 

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"She said her quality of life would not be worth living." -Kennedy's Story

Kennedy's corrective surgery was at 5 days old. There was enough diaphragm left to sew it together instead of using a patch. She did well but struggled with eating and reflux. At one month old, a feeding tube was placed and a Nissen procedure done. We left the NICU and headed home at 2 months old. 7 surgeries later and 11 years old, we are beyond grateful...!!!

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