CDH Stories
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.
Birdie’s Story - Congenital Diaphragmatic Hernia (CDH)
Birdie has been thriving, smiling, working hard with physical therapy and occupational therapy. Nothing can stop this sweet girl! We are beyond blessed and thankful for Tiny Hero and everyone we've met through her experience and look forward to educating and spreading awareness for the CDH community.
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!
Lilith’s Story - Congenital Diaphragmatic Hernia (CDH)
Our family is so blessed to have only spent 33 days in the NICU with Lilith. Everyone was amazed with how well she was doing, and at 12 days old, I finally was able to hold her.
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.
Isabella’s Story - Congenital Diaphragmatic Hernia (CDH)
Isabella is our little rockstar. She brings so much joy to those around her. We are praying for your Tiny Hero, too, and believing in your miracle; they really do happen!
Elisha’s Story - Congenital Diaphragmatic Hernia (CDH)
This was a long hard battle. I would do it a hundred times over for the life of my baby. Elisha is a fighter, and I'm proud to say that. I think this helped him through it all. Today, he will be 15 in September.
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.
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.
June Bee’s Story - Congenital Diaphragmatic Hernia (CDH)
Today, she thrives and still beats all odds. My baby is 2 now, but she's still our Tiny Hero.
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.
Carter’s Story - Congenital Diaphragmatic Hernia (CDH)
We left the hospital at 41 days. She came home on .1 liter of oxygen and was off it in 3 months. Now, she is seven months and a thriving little girl.
Arabella’s Story - Congenital Diaphragmatic Hernia (CDH)
Today, Arabella is absolutely amazing. Of course, she may have minor issues in the future, but if this terrible defect was a magazine, Bella would be on the cover. To think we were so close to losing her. So close to not giving her a shot to survive.