Posts in Liver Up - Left Sided
"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. 

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"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!

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" 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. 

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"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.

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"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.

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"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.

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"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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"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. 

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"After receiving the CDH diagnosis, we were advised to consider termination, so we left the appointment with little hope and with no direction. " - Scarlett's CDH and CHD Story

Despite her setbacks and despite undergoing open-heart surgery, she is a healthy, happy baby. She shows no signs of pulmonary hypertension, is off oxygen support, and is off all medications related to CDH, despite having been born with only 20% of her left lung.

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“We watched our daughter go through more in her first year of life than some people do in a lifetime, but yet she never let CDH dull her sparkle.” - Logan B. CDH Story

If I could give any advice to CDH families it would be to stay positive and no matter how hard it may be, never lose hope. And to reach out for support, every story is different, but we’ve all been through the emotional rollercoaster.

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