CDH Stories
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.
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.
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!
Charlotte’s Story - Congenital Diaphragmatic Hernia (CDH)
Charlotte is so happy and hitting all her milestones. We can't believe she will be 1 in June! We love our little wild child and are forever thankful to Tiny Hero for their support during the hardest time of our life.
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!
Violet’s Story - Congenital Diaphragmatic Hernia (CDH)
On October 8, after 25 days in the hospital, Baby Violet was discharged from the CDH unit with only 0.1 L oxygen flow. March 14 was her half birthday. She is still a great eater, and she has two teeth coming in. She cries when she isn't being held, but when she looks at me, she smiles bigger than I've ever seen before. I am so thankful for that smile every single day!
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!
Wells’ Story - Congenital Diaphragmatic Hernia (CDH)
Everyone from the nurses to the doctors to the front desk staff knew what CDH was and why we were there. No one ever told us our baby wasn't going to make it, and no one doubted he would go home healthy and thriving. I highly encourage every parent to find the place where they feel comfortable for their child's care. Johns Hopkins All Children's Hospital was that for us.
Blakelee’s Story - Congenital Diaphragmatic Hernia (CDH)
Blakelee is now a year old, standing by herself, eating table foods, on no medications, no oxygen, and no tubes. This journey has been far from easy, but it has been rewarding. There is hope!
Cristian’s Story - Congenital Diaphragmatic Hernia (CDH)
These babies are so strong and they will show you just how strong they are. They’re a miracle. Please, don’t lose hope. This is treatable. Do your research and follow your heart. It’s not a race, it’s minute by minute. Every little accomplishment matters, so celebrate them. Don’t give up hope!
Athena’s Story - Congenital Diaphragmatic Hernia (CDH)
This journey hasn't been easy, but you never know about things like this until it happens to you—all of the sleepless nights at the hospital, surgeries, all the waiting, the nerves. The list could go on and on. Every CDH journey is different but we are so alike in many ways.
Ryder’s Story - Congenital Diaphragmatic Hernia (CDH)
That day you first learn the words “Congenital Diaphragmatic Hernia” is one you will never forget. May 10, 2019, will forever be a hard day for me. Only two days before my first Mother’s Day, our world was shattered.
Scarlett’s Story - Congenital Diaphragmatic Hernia (CDH)
We are so incredibly proud of Scarlett and everything she has overcome. She continues to amaze us daily with her strength, we are so blessed to be her parents, and we can’t wait to see what the future holds for her!
Navy’s Story - Congenital Diaphragmatic Hernia (CDH)
Today Navy is one year old. He's SO close to walking. He eats food of all kinds. He loves dancing, swimming in the pool and going to the beach. He gets a huge smile whenever he sees Mickey Mouse or his sister. He is his mommy's sweet cuddler and daddy's wild baby.
Brody’s Story - Congenital Diaphragmatic Hernia (CDH)
He has an extreme love of all sports but especially baseball and golf. I've been told his hand-eye coordination in these sports is as good, if not better than a 5-year-old at only two years old! He continues to amaze us with his sweet personality and talents.
Aubrey’s Story - Congenital Diaphragmatic Hernia (CDH)
Fast forward two months, and Aubrey is a happy and healthy six-month-old. She is eating pureed fruits and vegetables along with breast milk, working on rolling over, and having the time of her life in her new bouncer.
Carsten’s Story - Congenital Diaphragmatic Hernia (CDH)
Although we will never know exactly why Carsten was born with CDH, we do know that he has shown us a kind of strength we did not know existed and the sheer determination to fight no matter what.
Kaidence’s Story - Congenital Diaphragmatic Hernia (CDH)
With every beautiful breath she takes and every high-pitch squeal we hear, we are reminded of God’s grace and the amazing work He is doing through Dr. Kays and the JHACH team.
Lincoln’s Story - Congenital Diaphragmatic Hernia (CDH)
2020 has been a year like no other. Having a CDH baby in the middle of a global pandemic sounds like a riveting fiction novel. God works in mysterious ways, and this journey of a lifetime has challenged our whole family to reimagine what’s possible in life.