CDH Stories
Lillyth’s Story - Congenital Diaphragmatic Hernia (CDH)
Lillyth Fyre is a miracle. Every CDH kid is, in my opinion, no matter what their outcome is. We've learned to pour all of our love onto this child because we understand that tomorrow isn't promised. It's been a terrifying journey with moments of pure love and joy.
Aiden’s Story - Congenital Diaphragmatic Hernia (CDH)
Aiden spent 10 days on ECMO and was then moved from the CVICU up to the NICU. He spent 74 days in the hospital. Tiny Hero gave us the information that we needed to decide to travel to Florida to not only give our baby boy the best odds of survival but to thrive!
Braxton’s Story - Congenital Diaphragmatic Hernia (CDH)
On February 27, 2021, Braxton was finally discharged from the hospital with the lowest setting oxygen and some feeding issues beating all odds New York had said about him. I cannot thank Dr. Kays and his team enough for saving my son and giving him the living chance he deserved!
Grace’s Story - Congenital Diaphragmatic Hernia (CDH)
It was not an easy journey for our Amazing Gracie or our family, and it can still be challenging today. But we wouldn't trade our girl - exactly the way she is - for anything. Every day we're grateful for the gift of Grace.
Aria’s Story - Congenital Diaphragmatic Hernia (CDH)
Today, Aria is the most independent, beautiful, and determined baby I know. To all the CDH families that are reading this, Keep the Faith! During our journey, someone told me that CDH is not a race, it's a marathon. My mom gave Aria the nickname "Turtle" for that very reason. Slow and steady!
Cristian’s Story - Congenital Diaphragmatic Hernia (CDH)
These babies are so strong and they will show you just how strong they are. They’re a miracle. Please, don’t lose hope. This is treatable. Do your research and follow your heart. It’s not a race, it’s minute by minute. Every little accomplishment matters, so celebrate them. Don’t give up hope!
Ella’s Story - Congenital Diaphragmatic Hernia (CDH)
I fought hard for my little girl all these months and will continue to. I questioned them, brainstormed and spoke up when I needed to. I wasn’t afraid to pull everyone in and advocate for family meetings when I got frustrated. My sweet Ella turned one this month and I am forever grateful to be her momma. She is truly a blessing and I am happy to have her here with us all today!
Empress’ Story - Congenital Diaphragmatic Hernia (CDH)
Seeing what she's been through with CDH and how far she's come never gets old! She will be one in just a few days, and we are so thankful for her amazing surgeon and everyone involved in her care.
Elizabeth’s Story - Congenital Diaphragmatic Hernia (CDH)
Being able to hug her, see her smile, hear her babble is the best gift God could have given us. She's such a strong and intelligent baby. I can't wait to see what she does in life. I'm so happy Elizabeth chose us to be her parents.
Elisha’s Story - Congenital Diaphragmatic Hernia (CDH)
This was a long hard battle. I would do it a hundred times over for the life of my baby. Elisha is a fighter, and I'm proud to say that. I think this helped him through it all. Today, he will be 15 in September.
Ryder’s Story - Congenital Diaphragmatic Hernia (CDH)
That day you first learn the words “Congenital Diaphragmatic Hernia” is one you will never forget. May 10, 2019, will forever be a hard day for me. Only two days before my first Mother’s Day, our world was shattered.
Owen’s Story - Congenital Diaphragmatic Hernia (CDH)
If you take anything from this long story of ours, it's that your kid isn't the only one that survives CDH; you do, too. None of this is your fault, and you're doing the best you can, so allow yourself some grace.
Scarlett’s Story - Congenital Diaphragmatic Hernia (CDH)
We are so incredibly proud of Scarlett and everything she has overcome. She continues to amaze us daily with her strength, we are so blessed to be her parents, and we can’t wait to see what the future holds for her!
Landon’s Story - Congenital Diaphragmatic Hernia (CDH)
CDH is just a part of who my Landon is now, but because of what he has gone through, he can do anything. Landon is a survivor. He is a CDH survivor. He is an ECMO survivor.
Bailee’s Story - Congenital Diaphragmatic Hernia (CDH)
I had never heard of CDH before that day. Our original OB was wonderful and got us into a specialist the next day. We spent the next 20 weeks attending weekly appointments and meetings with different specialists before Bailee was born at 39 weeks in a pre-scheduled delivery.
Pippa’s Story - Congenital Diaphragmatic Hernia (CDH)
You learn so much in those first few days. It's so much to wrap your head around. But we clung to the smallest things people said that gave us hope.
Brody’s Story - Congenital Diaphragmatic Hernia (CDH)
He has an extreme love of all sports but especially baseball and golf. I've been told his hand-eye coordination in these sports is as good, if not better than a 5-year-old at only two years old! He continues to amaze us with his sweet personality and talents.
Jorja’s Story - Congenital Diaphragmatic Hernia (CDH)
She has defied all the odds. Home is where she belongs with her big brother, Leo. We are forever proud and grateful for her. There were many times we thought it was the end. We can't say thank you enough to all the healthcare workers for saving our warrior princess.
Quinn’s Story - Congenital Diaphragmatic Hernia (CDH)
Keep your head up. Take this on as something that is making you and your baby stronger in the end. Right now, your babies are caterpillars, but they will get their wings and become butterflies. When Quinn has her butterfly moment, and we go home, it’s going to be amazing! I’m looking forward to that.
Alexa’s Story - Congenital Diaphragmatic Hernia (CDH)
Alexa is a “spicy,” sweet, fun, determined, and loving little girl. It is so fun to see this personality blossom, knowing that it had a big part of her drive/success in her NICU days. She currently goes to preschool and loves it!