“Her stomach was up next to her heart. There’s a hole in her diaphragm. Reduced lung growth. Other organs in her chest. He said she won’t be running any marathons. One of us asked... ok so is that it? Just maybe no sports? She’s ok right?”

His dream is to one day be a sports broadcaster— and he is currently working for our local radio station selling ads and hopefully doing some broadcasting for them in the future.

The surgery team explained to us that Zaria was on the better end of the spectrum for CDH (thank God) and that they were able to use stitches and no mesh was used. We were at JHAC for about 22 days.

The doctors told us if they had to remove Rakari from the machine before he was ready to get off, it would be a chance of him passing. But he didn’t. He’s a fighter, and he got off ECMO December 21, 2018.

Cora was an undiagnosed case of CDH. My pregnancy was planned and normal, nothing uneventful. My anatomy scan was completely clear, along with my quad screen.

I was given the option of sending him with a 5% chance of survival and risk him dying alone or I could hold him while he passed. I had to send him, it was never an option for him to die.

She actually SCREAMED. We were told that wouldn’t happen. We were told she might not seem responsive or have any of the normal “just born baby” things. But she cried.

And so, Dayly received the infamous CDH “line” as she now calls it. The scar that includes her in a special club of survivors.

Today, Emmie is a completely perfect and healthy (almost) 7-year-old! She loves homeschooling, her big sister, and playing with her friends and family. She is an incredible little builder and delights in showing off her newest creations — from Lego structures to elaborate forts. Our life truly is one “after CDH” and not “with CDH.”

My life hasn't been easy as a CDH survivor, but I am a professional photographer, vocalist, dancer, and petite model, and I feel incredibly fortunate to be on this earth and to be able to share my gifts with the world!

After twenty-eight days in the hospital, we were able to go home. I know that stay seems so short compared to some, but I am so thankful how amazingly well he did and continues to do! Max will be 2 years old next month and has never had any other health issues.

Lucy Sofia may have had to wait 31 days after birth to be embraced by family and friends, but the truth is, she has captured the hearts of many from day 1. She is a testament to how even the frailest can empower; the tiny can have a huge impact.

“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.

After 37 long, stressful, emotionally paralyzing, heartbreaking but awe-inspiring days later, our baby girl was discharged and able to come home!

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!

Legend started kindergarten this past September and is reading and writing. He has tons of friends, involved in sports, and is just the biggest miracle ever. We are so blessed by our Tiny Hero!

We still have procedures and surgeries to worry about, but she’s a very happy girl and such a firecracker! We love her and her scars that tell an amazing story and we always take the chance to spread awareness.

We were asked not once, but five times if we were “sure” we didn’t want to abort the pregnancy. Our firm answer was no.

He is now 8 months old and I'm talking about what to plan for his 1st birthday. I hope you find hope and comfort in his story. He still has challenges, but we are bravely fighting them one day at a time. And always remember slow and steady wins the race.

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.