CDH Stories
Weston’s CDH Story
When I tell people about his story, they are shocked that this is the same baby. He is a thriving, happy, and healthy little guy. Weston is a speedy crawler and pulls himself to stand. He just started cruising along tables and couches. Some of his favorite things include watching Miss Rachel on TV, chasing after our dog, playing with cars, eating French fries, and laughing at his big brother!
Oliver’s CDH Story
I am hopeful that our complicated and rare journey can help someone someday. Oliver is one in a million and truly a miracle! We feel blessed to have our baby alive and thriving. I am so thankful for the many people and doctors/nurses who have helped us along this crazy and stressful journey.
Margaux’s CDH Story
Looking back at Margaux’s journey in the hospital, we are reminded every day how strong and resilient our precious girl is and continue to be thankful for the lifesaving care she received.
Sonny’s CDH Story
Sonny has blossomed into a perfect, beautiful soul, reminding us that life's challenges can be conquered with unwavering faith and a positive mindset. Your presence in our lives is a daily reminder of the incredible strength that resides within you and the incredible love that surrounds you.
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.
Vance’s CDH Story
Vance is active and healthy — he plays ice hockey and soccer and enjoys competing in 5K runs. He is outgoing and social, always making others laugh and smile. His pediatrician once told us with CDH, no two stories are the same, and Vance is writing his own.
Copeland’s CDH Story
Now our sweet boy is almost seven months old and is starting to rock his feeds orally with only needing to use the G-tube once through the day and sleeps all night, so he is fed through the tube at night. He is finally reaching his developmental milestones and is such a sweet and happy baby.
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!
Thiago’s CDH Story
Thaigo has brought so much joy into our lives, and we will forever be grateful to the team of doctors and nurses who worked tirelessly for our Tiny Hero!
Jasper’s CDH Story
Joining Facebook groups and hearing all the positive stories gave me so much comfort and hope in the scariest time of my life, and hopefully, I can do that for others by sharing his story. He’s now two months old and doing great!
Luke’s CDH Story
I'm so thankful for the care we received at John Hopkins. The entire CDH team on that floor is incredible and I will never forget them. I am also so thankful for the Tiny Hero community and the hope I received when I had none!
Presley’s CDH Story
She's now a feisty two-year-old who keeps us on our toes. She loves to do anything in the water, including swimming, going to the lake and feeding the ducks, or, when we're lucky enough, going to the beach. We cherish every moment we get with Presley because it's one more moment we weren't guaranteed, and that makes every moment that much more special!
Charlotte’s CDH Story
After 68 days in the NICU, our sweet miracle came home! Charlotte is now ten months old, developmentally right on track, and eating completely orally. She is still small, but that doesn’t stop her from doing anything! This journey is so hard, but these babies are strong and worth the fight!
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!
Oliver’s CDH Story
Ollie is almost two years old and the happiest, most loving, playful little boy. If you are a parent just finding out or in the thick of it, know that these Tiny Heroes are stronger than you think and will be ready to fight!
Charlotte’s Story - Congenital Diaphragmatic Hernia
Charlotte came home on December 29th with an NG tube and no medications except Pepcid and vitamin D. Within a week of being home, the pediatrician allowed us to take out the NG tube since Charlotte was taking a bottle and breastfeeding just fine. Our sweet girl is absolutely a Tiny Hero, and I hope that she continues to beat everything thrown at her!
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.