CDH Stories
Ronnie’s Story - Congenital Diaphragmatic Hernia
Ronnie spent 5 weeks in the NICU and made it home the night before Christmas. It was a miracle! We have had ER visits, urgent care, and hospital stays even after discharge. He is a Tiny Hero!
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!
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!
Robert’s Story - Congenital Diaphragmatic Hernia (CDH)
On January 20, 2022, after 113 long days in the NICU, he was discharged home to us on a CPAP of 9 and 5 liters of oxygen. Robert very much loves life. He is a pretty happy-go-lucky guy and blows mommy and daddy away every day with how hard he fights.
Eli’s Story - Congenital Diaphragmatic Hernia (CDH)
Eli is now 5 months old and is truly thriving. We know his journey was unique and that not all CDH babies come home without breathing or eating support. For that, we are eternally humbled and grateful. We went through some very dark times before he was born and throughout the early days of his life. I'm here to tell you to have faith—there absolutely is hope for these CDH warriors.
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!
A’moura’s Story - Congenital Diaphragmatic Hernia (CDH)
Being in the NICU stirred up all kinds of emotions. It was hard healing from childbirth while sleeping in chairs, but I did it all for my baby! I knew she needed me by her side. I had many rough days, but we fought together. She was such a strong fighter, my Tiny Hero!
Bryson’s Story - Congenital Diaphragmatic Hernia (CDH)
Bryson is a vibrant, active, happy little boy who loves life and having fun! His surgery was performed laparoscopically, leaving not even a trace of a belly scar and his only scar is on the back where they stitched the hold from the breathing tube. His team has no reservations about his growth and development.
Chrissie’s Story - Congenital Diaphragmatic Hernia (CDH)
On June 29, 2020, we were filled with excitement as we headed to the anatomy scan to find out if we were having a boy or a girl. While the scan was going on, we were so happy to see our baby, but suddenly our radiologist said she needed to call the doctor. It was then that we learned our baby girl would be born with Congenital Diaphragmatic Hernia.
Theo’s Story - Congenital Diaphragmatic Hernia (CDH)
Being a parent to a CDH baby is a whole load of anxiety, but they are the strongest babies in the world! Believe in yourself and believe in your baby. They are miracles!
Empress’ Story - Congenital Diaphragmatic Hernia (CDH)
Seeing what she's been through with CDH and how far she's come never gets old! She will be one in just a few days, and we are so thankful for her amazing surgeon and everyone involved in her care.
Kyson’s Story - Congenital Diaphragmatic Hernia (CDH)
Kyson is thriving at home. We are so blessed and thankful for our little miracle. CDH is a scary diagnosis but these little warriors are such strong fighters! Have faith in your Tiny Hero - they can accomplish anything!
Callie’s Story - Congenital Diaphragmatic Hernia (CDH)
Callie is doing really well, and her personality is emerging now that she is home. She still sees a lot of specialists very regularly, and we still have a lot of obstacles ahead of us, but we will continue to fight!
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!
Aria’s Story - Congenital Diaphragmatic Hernia (CDH)
We are amazed by our little superstar and could not believe how fast she became well enough to go home. She's now 8 weeks old, feeding and growing well.
Leah’s Story - Congenital Diaphragmatic Hernia (CDH)
Leah is the most content, alert and happy wee girl! We appreciate every single minute with her. She is perfect, and people are shocked when they learn her story as she doesn't look like she was ever sick!
Cash’s Story - Congenital Diaphragmatic Hernia (CDH)
Cash currently holds the record for the quickest CDH recovery at that children’s hospital. He is now 5 1/2 months old and thriving!
Owen’s Story - Congenital Diaphragmatic Hernia (CDH)
If you take anything from this long story of ours, it's that your kid isn't the only one that survives CDH; you do, too. None of this is your fault, and you're doing the best you can, so allow yourself some grace.
Avery’s Story - Congenital Diaphragmatic Hernia (CDH)
We never expected her CDH journey to be that quick, but we are so lucky that it was. You would never know what that first month of her life entailed, and there will never be enough thank you’s in the world to thank Dr. Hedrick and every other doctor/nurse who took care of her. She is our strong and brave little girl, and she has been a rockstar since day one.