CDH Stories
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.
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!