CDH Stories
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!
Morgan’s CDH Story
Since I have small lungs, I found hobbies I can do without too much strain. I enjoy puzzles, music, and almost anything crafty. I make my own holiday cards for my friends and family. Even though my lungs are scarred, I love to sing.
Savannah’s CDH Story
She celebrated her first birthday on April 20th. She is about to graduate from NICU this week and waiting for a bed at Almost Home Kids. Then after that, she will be home with us, her family, for the first time!
Vaughn’s CDH Story
We know there can always be more bumps in the road, but we have the best doctors on our side! We are so thankful to Tiny Hero and the JHACH team for believing in our family and Vaughn!
Legacy’s CDH Story
I share these details to say that even under the direst circumstances, there is HOPE! Yes, there is pain, grief, and fear of loss, but there is always HOPE!
Rhiley’s Story - Congenital Diaphragmatic Hernia
For all of the CDH parents out there currently in the thick of it like us, know that these babies are stronger than you can imagine. They fight like hell and are so resilient. Also, remember to give yourself grace and know that a whole community is available to help get you through what is most likely one of the hardest things you will ever experience.
Avery’s Story - Congenital Diaphragmatic Hernia
Avery ended up being in the hospital for two and a half months and coming home with a G-tube and no oxygen needed. Now at almost a year old, she's G-tube free and hitting all her milestones. Her heart has developed well, and her echos have been good. It's amazing how strong these babies really are. Even though it's hard, it really is true when people say not to lose hope.
Rylee’s Story - Congenital Diaphragmatic Hernia
My name is Samantha, and my fiancé's name is Mark, and we're the parents of our wonderful daughter, Rylee. Now that we’re home, she gets OT and early development therapy. She also sees a neurologist, cardiologist, and GI doctor. She is a Tiny Hero!
Trey’s Story - Congenital Diaphragmatic Hernia
Trey is absolutely thriving! He was able to wean from the oxygen completely in January after 4 months of being home. He is still 100% G-tube fed but is beginning to show more and more interest in purees and food. Trey truly had a story to tell, and it was our job to help him tell it. This is only the beginning.
Oliver’s Story - Congenital Diaphragmatic Hernia (CDH)
Oliver is our little warrior and so very smart. He can give a high five, clap, and sit up all by himself. He is the happiest, sweetest little boy in the world. He has been through so much in his short life here, and he is the absolute strongest baby!
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!