CDH Stories
Emma Isabella’s CDH Story
Do not give up and never lose your faith. We are warriors of CDH. Thank you, Tiny Hero, for your grain of sand, you will help me to be closer to my family on my island of enchantment, Puerto Rico!
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!
Ella’s CDH Story
Our family is so grateful for the Tiny Hero organization. We never would have learned that we could save our daughter if it weren't for the Facebook group with so many people recommending specialty hospitals. Our daughter would not have made it if we had stayed in the state for her care!
Masina’s CDH Story
I dove into hours of research on CDH and joined every support group, forum, and community I could find. The CDH support network from Tiny Hero became our beacon of hope, providing us with the knowledge we desperately needed!
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.
Grayson’s CDH Story
Grayson has definitely pushed through many obstacles thrown his way, but he comes out even stronger each time! He will turn three this year, and every time I look at him, I can’t even believe what he’s been through and how far he has come! This journey has not been easy, but it has helped to know that there is a community of families out there to which you can relate!
Zyaire’s CDH Story
Today, Zy is a happy, mostly healthy baby. He loves to play with his siblings, clap his hands, and climb on everything. He has mastered eating by mouth, crawling, pulling himself up to stand, and walking while holding onto something. For everything he has been through, he is the happiest baby we know, and we couldn’t be more blessed and in love!
Ellie’s CDH Story
Ellie loves spending time outside, swinging, reading, kicking everything in sight, and singing in the car. We wanted to write this story to give other families hope, especially those facing multiple diagnoses. CHD and genetic conditions on top of CDH can be complicated, but these babies are so strong. We are here to support everyone facing this scary diagnosis!
Amelia’s CDH Story
Amelia has not had it easy. But what I have found out through this journey is that she is not alone in her struggles. She is here with us. I can hold her, kiss her, rock her to sleep, and love her unconditionally every day. Being her mom is an honor, and I don’t take it lightly!
Nash’s CDH Story
Nash is the toughest guy I know. He is so resilient and has shown everyone to not always look at statistics and blow them out of the water!
Hazel’s CDH Story
Hazel was discharged without any medications, respiratory support, or other kinds of wires, just fortified breastmilk. She gained weight quickly and came off the fortified breastmilk at four months old. Hazel turned one this month and she is a very happy, healthy, and active baby.
Kendall’s CDH Story
Kendall is now over 3 months old. She is doing amazingly cognitively and physically! I don't think she'd be where she is without the care from Dr. Kays' team and without the Facebook page from Tiny Hero, where I got their recommendation. She really is a fighter and I can tell that in her personality already. I know she will do amazing things in her life!
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!
Cannon’s CDH Story
We didn't find out about CDH until I was 36.5 weeks pregnant. But now, Cannon is truly the happiest baby with the best smile and we are so lucky that he is ours!
Abel’s CDH Story
Once I knew this was going to be my life as a CDH mom and that there would always be medical ups and downs, I realized it's all about how you handle each bump in the road. Being a mom of a child with special medical needs made me so much more grateful for all the little things and milestones of Abel’s life!
Emma’s CDH Story
Since we had no idea about her diagnosis ahead of time, nothing was prearranged or planned. We were blessed with friends and a church family that helped us financially. We are thankful for our baby girl, Emma, and would do this crazy all over again for her. She is so full of life and truly one of the strongest girls I know!
Amelia’s CDH Story
Amelia is almost four months old and absolutely thriving and doing ALL the growing baby things. I look at her with such admiration because all I see is strength in such a little body. Her big brother is her best friend, her dog is her biggest protector, and her parents are grateful each and every day for our wonderful, resilient - Tiny Hero.
Dawson’s CDH Story
Now, at two years old, it's hard to believe Dawson ever faced this battle. He is strong, resilient, and busy. His favorite toy is any kind of ball (or anything he can find to throw!). Dawson is thriving in all areas of life, and we are so very grateful.
Arden’s CDH Story
Despite CDH and all the other challenges she has faced, Arden brings joy wherever she goes. She is the HAPPIEST child. We are thankful for my cancer because, without it, she wouldn’t be here. Arden has changed my life, and I am forever grateful we get to grow old together.