CDH Stories
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.
Addison’s CDH Story
At exactly three weeks old, Addison got to come home. She is now two months old. She loves all the attention and is starting to find her voice. I know when you get the diagnosis, the worst thoughts come to mind, but life does not always turn out to be the worst-case scenario. I am so proud of my CDH warrior!
William’s CDH Story
William is so much more active and hungry, and his communication skills have skyrocketed! He is a super active toddler who just turned three years old. He is happy and curious and wild! I cannot wait to see where he goes from here!
Jerry’s CDH Story
Jerry is a true miracle! He is very active and goofy. He is talking, jumping and rocking, rolling, crawling, pulling himself up, sitting up, and trying to stand up - all the normal baby things. We are about to celebrate his one-year birthday!
Aspen’s CDH Story
Aspen is a bubbly, happy, and very curious 2-year-old who loves going to the playground, playing with Play-Doh, doing Legos, and going shopping with her parents! Her story proves that CDH diagnosis doesn’t define your child and their future in any way.
CC’s CDH Story
We cannot thank the CDH staff at Boston Children's Hospital enough! They saved CC's life, and after almost 114 days, we are home.
Stefano’s CDH Story
Though our CDH journey, by some standards, may seem less severe, it was emotionally taxing. Yet, within our shared CDH community, I find solace and strength. My heart beats with yours, and I send prayers for healing to every CDH family.
Maximilian’s CDH Story
For the families who get this diagnosis, with the right team, strength, support, love, and belief in a positive outcome, you will emerge in a world that seems unimaginable at first. The outcome is so different from the beginning. It's a slow, brutal path in the starting weeks and months, but seeing this blessing in action now makes those days feel like a distant memory.