Posts in Liver Up - Left Sided
"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
"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.

Read More
“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.

Read More
Drew's CDH Story - LCDH

So, there we were, over the moon watching every beautiful movement our little baby made on the screen. He said “Its’ a boy!’ as he continued to scan. I kept wondering what the black hole that he kept labeling “ST” was. It was near his heart, and I didn’t remember the heart being so narrow on baby scans. I

Read More
"He has survived more than most babies and he is thriving." - Jaxson's Story

He also endured many complications during his 92-day NICU stay. At 7 days old, he had an intestinal perforation; at 3 weeks old, he suffered a pulmonary hemorrhage; and at 2 months old, he had a horrible infection. We know that it is because of God and the skills he has given Dr. Kays that we are able to enjoy our son and watch him grow, despite all the challenges he faced early on.

Read More