CDH Stories
Maeve’s CDH Story
Maeve defied all expectations. After 20 days on ECMO and 80 days in the hospital, this tiny hero is now home in Oklahoma, reminding her family that hope can be stronger than the numbers.
Owen’s CDH Story
Diagnosed with left-sided CDH at 20 weeks, Owen faced ECMO, surgery, feeding challenges, and 81 days in the NICU. Today, he is a thriving one-year-old, giving his family—and other CDH families—hope every step of the way.
AJ's CDH Story
CDH is a journey no parent ever wants to take. But once you find yourself on that journey, you hold on to hope, love, and the strength of your Tiny Hero. AJ taught us what it truly means to fight, to believe, and to never underestimate what these little ones are capable of.
Liam’s CDH Story
To the families walking this road right now: you are not alone. Hold onto hope. Ask the hard questions. Advocate fiercely. Celebrate every milestone, no matter how small. Because CDH may be part of Liam’s story, but it does not define his future.
Faith’s CDH Story
After 180 days, Faith came home. We had to learn all of the ins and outs of the G-tube and being on oxygen. She had a feeding and med schedule that was to be followed. Faith is a miracle. She has grown and learned so much!
Thomas’ CDH Story
If you are reading this story with fear for the future of your own CDH baby, I pray that you are encouraged by Thomas’ story. Surround yourself with success stories and knowledge. I encourage you to dig deep to find answers to better advocate for your child in and out of the hospital. These babies are so strong and will amaze you!
Clara’s CDH Story
We are so incredibly proud of how strong Clara has been through all of this, and how amazing the care that we have received has been. She still has a long road ahead of her with future surgeries, but the long term outlook is very positive!
Forrest’s CDH Story
Each time Forrest was faced with a mountain, he seemed to climb over it with ease. As his parents, it was miraculous to watch him be so strong when we were barely holding on!
Vincent’s CDH Story
At two years old, Vincent is thriving and has caught up developmentally to other kids his age. We are so proud of our Tiny Hero. His strength through all the surgeries and ups and downs of his NICU stay is unmatched by anyone we have ever met. What a journey it has been for us with Vincent, but we are the luckiest parents to have him as ours.
Lilah’s CDH Story
Today, I look at Lilah and see a living miracle. She is a testament to faith, resilience, and determination. What the world told us was impossible, Lilah has made possible. She is our hero, and her story continues to inspire us every single day.
Violet’s CDH Story
Violet has completed our family. I don't know if I would have found Dr. Kays had I not found Tiny Hero! I hope Violet can bring hope to families just like mine. Hold onto your faith, relocation is possible! There's lots of help out there!
Lyla’s CDH Story
Born with severe Congenital Diaphragmatic Hernia (CDH), Lyla faced incredible odds from the start. She required ECMO just hours after birth and underwent life-saving surgery at only 5 hours old. After weeks of intensive care, breathing support, and overcoming feeding challenges, Lyla proved her strength. Now thriving at six months old, her journey is one of resilience and hope. Read Lyla’s inspiring CDH story
Teddy’s CDH Story
At 5 months on the dot (153 days approximately), Teddy came home with an NJ tube and no oxygen. Tiny Hero was a lifeline for me during our NICU stay, and I’m so happy to share our story to encourage other CDH families!
Violet’s CDH Story
When she was nearly two years old, she was thriving and had multiple follow-ups, all of which showed everything to be normal. Unfortunately, another X-ray and CT scan revealed another recurrence. Since her fourth repair, she has not experienced any issues and has recovered exceptionally well. We are incredibly proud of her. She has gone through so much and showed how strong she really is!
Kash’s CDH Story
Kash acts like a baby who was never hospitalized for 2.5 months and was never on ECMO/intubated. We have a wonderful team and physician to thank as well as an amazing God who guided us throughout our entire journey. Kash has the devoted backing of family and friends “Kash’s Krew” who gave us unconditional love and support while being so far away from home!
Herle’s CDH Story
I found Tiny Hero’s community on Facebook. I wrote my story and asked for stories of hope in return, and the members did not disappoint. I got overwhelmed by the response and copied all the stories and images into a document that I printed and carried with me everywhere. I read it so many times the pages got worn thin. It was a physical hope to hold on to.
Sydney’s CDH Story
You would not know by looking at her what all she has been through. Sydney is the light of my life and I know one day she will share her story with others and provide so much hope for what is to come!
Ty’s CDH Story
I've followed Tiny Hero since before Ty was born, read all the stories, and found HOPE that I would someday get to share our sweet Ty's story. It's scary, it's intimidating, devastating, and nothing about your child having to go through this is fair, BUT it is NOT a death sentence. These babies are fighters; they have no choice but to be, and their parents and siblings are too!
Baylee’s CDH Story
Baylee has been living it up at home with her brother, getting stronger by the day and thriving every day. She is still very small, but that doesn’t stop her from doing anything. Baylee is now a year old and is the sweetest, most independent baby ever. This journey was not easy at all, but these babies are so strong and worth every bit of it!
Luca’s CDH Story
Luca is a very happy boy who loves to laugh, smile, make noises, and babble/screech, especially at his brother and fur siblings. He loves to wave at everyone all day long, including himself. CDH can't stop Luca from always smiling and bringing smiles to everyone he meets!