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!

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.

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.

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.

After coming home, Colt has thrived. He was cleared by cardio. He's gained weight like a normal baby would. He's on normal well baby visits without weight checks in between. At 5 months old, he's already sitting up on his own.

At 7 years old, now Breanne has beaten all the odds. She makes me a better mom and person everyday and never gives up, no matter the obstacle.

At 6 years old, CDH can't stop AJ! He goes full out in all sports. He loves being active & being outdoors. He loves riding his bike & playing with trucks.

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

I remember thinking, “Oh, just a hernia? A hernia’s not that bad.” But of course later that night, after a good bit of googling, we discovered that CDH is not just a hernia.

Jude has continued to thrive through the years, doing great at school and even trying out soccer and swimming (the things we never imagined possible!) He is turning 12 next month and starting middle school this upcoming school year. We are so proud of him!

In eleven years, some of the memories from the NICU have faded. We have a reminder of Tug’s beginning of life through a scar that remains on his chest. However, the gift we have been given through Dr. Kays’ care is a son who is not afraid to be his own unique self.

He’s 6 years old, has a blue belt in taekwondo, and enjoys swimming, singing and reading. We’ve lost count of the number of people that say there’s something special about him… but we know there is. He’s a CDH survivor.

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.

When we had Logan, our family became much larger than just the three of us. Going through this journey, the CDH community has been so supportive. They've become family.

I can also tell you that I owe all of the precious memories I made with Lilly to Dr. Kays and Joy. I know that I would not have had that time with her if Dr. Kays had not treated her. It also feels good as a parent to have the knowledge that I did all I could for her. She deserved the best. By seeking out Dr. Kays, I gave it to her.

We still needed more information before choosing our path. These tests would give a pediatric surgeon a better understanding of our child's severity and help us make the best decision for our son.

We can hardly believe it’s been 9 years since Adam made his grand entrance into this world. As many of you can relate, at birth, Adam couldn’t make any noise voluntarily because of his very severe CDH. We have had so many ups and downs over the years, but despite the rockiness of the climbing, keeping our eye on his upward progression has kept us moving forward with hope!

The first year with a child born with CDH is hard, challenging, and very overwhelming at times. But these babies come here fighters and they are extremely strong.