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.

Before our appointment with maternal fetal medicine the following Monday, we gave him a name - Bennett James - we wanted everyone to know that no matter what we were told at that appointment, he was important, and he mattered.

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.

I hope by sharing Camden’s story that another family will read it and realize that you don’t have to settle for 13%. Our 13% just turned a year old and is doing amazing!

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.

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.

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed 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 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.

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!

Xander is an amazing kid. He's smart, funny, compassionate, and kind. He loves to run, loves to be outside, and wants to be farmer when he grows up.

She weighed in at a tiny 3 pounds 15 ounces. She cried twice before they could intubate her. The most wonderful sound I have ever heard.

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.

“When they first told me She had it, I had never heard of it and didn’t even knew how to pronounce it. This awfully horrid defect I’d never heard of quickly changed our world and became something I would need to live with each day.”

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.

Even after all Aiden has been through he is still a bright, sweet, imaginative and inspirational little boy! We have talked to him numerous times regarding CDH and his surgery. He knows what his abdominal scar means and what Dr. Kays means to him. We are so blessed and thankful for every day with our Tiny Hero!

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.

Griffin was born a fairly healthy baby on May 30, 2016. All he had was a small heart murmur and jaundice. After a few days in the hospital we went home and were ready for the world with our healthy son.

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.

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.

Friday morning I got the call from Joy! “We’re coming to get Jackson.” Dr. Kays decided to make the trip to Baltimore at the tail end of a nor’easter to transport my critical baby on ECMO back to JHACH.

On 1-18-18 Braxton arrived and wow did we fully understand the importance of being with Dr. Kays. Braxton crashed on day 2 and went on ECMO. He had his CDH repair on day 3 and after 7 days of Ecmo he was off.