"I can just remember looking over to the ultrasound tech and seeing her smile turn into this very concerned look." - Ethan's CDH Story

“Meet your little guy, Mom! Congratulations.” That was when I knew that Ethan was in good hands because for the first time I had a doctor congratulate me on the blessing that is my baby. It was the best feeling in the world to know someone was fighting alongside us to do whatever possible to save our baby. 

Read More
"Livia is our absolute world, and we are so blessed. We have had the roughest few years, but they have been the best of our lives." - Livia's CDH Story

Every day there was less medication and less oxygen. She eventually came home at 51 days old. No oxygen and feeding orally. SHE DID IT!

Read More
" I had no other choice in that moment than to know I needed to be strong for him." - Charlie's CDH Story

The high-risk ultrasound is a blur to me now. I don’t recall much of the conversation with the doctor after either, except for when I was asked if we wanted information on terminating the pregnancy. Typing that sentence out physically takes the breath out of me because of the amazing little boy that we now have in our lives. 

Read More
"My stomach immediately dropped, and the room became quiet as he continued on to say, "your child has a congenital diaphragmatic hernia." - Harlan's CDH Story

We got to remove the oxygen on his first birthday, which was the best birthday present ever! With the help of many therapies, Harlan is now a thriving 15-month-old with a constant smile on his face who cruises everywhere, eats everything by mouth, and babbles up a storm.

Read More
"Gabriel’s story is unique because he not only went undiagnosed all throughout my pregnancy, but he was diagnosed by chance at 4 months of age. " - Gabriel's CDH Story

She tried to look at me with a reassuring look, but I knew something was very wrong. I said through tears in my eyes “just tell me.” She said she could not hear any breathing sounds on the left side of his body.

Read More
"I went from not knowing CDH existed one day to allowing it to control me, my every thought, and every emotion." - Arabella's CDH Story

We paid an outside source for an early gender reveal. We delayed going home be we could not contain our excitement to finally have a girl. We were over the moon. We celebrated and danced around singing "we're having a girl." Little did we know how irrelevant gender was during the anatomy scan.

Read More
"We held our living, breathing baby for the first time on Day 29- truly a moment neither of us will ever forget." - Micah's CDH Story

The overwhelming support of family, friends, employers, and the CDH community coupled with many, many miracles sprinkled throughout the next five months enabled us to relocate from California to Florida in preparation for Micah's arrival.  God’s hand was so evidently involved in every step of the way.

Read More
"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.

Read More
"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!

Read More
"She’s currently in physical therapy and speech therapy, doing the things that my prior MFM said she would NEVER do!" - Kennedi's CDH Story

She was placed on ECMO at less than an hour old and had her repair surgery was done at 6 hours old while on ECMO.  She stayed on ECMO for 13 days.  95% of Kennedis’ left diaphragm was missing and Dr. Kays said her lungs where so small they were nonexistent. 

Read More