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!
Trey’s Story - Congenital Diaphragmatic Hernia
Trey is absolutely thriving! He was able to wean from the oxygen completely in January after 4 months of being home. He is still 100% G-tube fed but is beginning to show more and more interest in purees and food. Trey truly had a story to tell, and it was our job to help him tell it. This is only the beginning.
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.
Oliver’s Story - Congenital Diaphragmatic Hernia (CDH)
Oliver is our little warrior and so very smart. He can give a high five, clap, and sit up all by himself. He is the happiest, sweetest little boy in the world. He has been through so much in his short life here, and he is the absolute strongest baby!
Lillyth’s Story - Congenital Diaphragmatic Hernia (CDH)
Lillyth Fyre is a miracle. Every CDH kid is, in my opinion, no matter what their outcome is. We've learned to pour all of our love onto this child because we understand that tomorrow isn't promised. It's been a terrifying journey with moments of pure love and joy.
Kenzleigh's Story - Congenital Diaphragmatic Hernia (CDH)
There were many bumps in our road, and she still needed half a liter to keep her stats up where they wanted them. We worked on feeds and had the NG tube removed because she was taking full feeds by mouth. At the end of January, we were completely off oxygen. She is now a happy, healthy 5-month-old baby girl!
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!
Grace’s Story - Congenital Diaphragmatic Hernia (CDH)
It was not an easy journey for our Amazing Gracie or our family, and it can still be challenging today. But we wouldn't trade our girl - exactly the way she is - for anything. Every day we're grateful for the gift of Grace.
Aria’s Story - Congenital Diaphragmatic Hernia (CDH)
Today, Aria is the most independent, beautiful, and determined baby I know. To all the CDH families that are reading this, Keep the Faith! During our journey, someone told me that CDH is not a race, it's a marathon. My mom gave Aria the nickname "Turtle" for that very reason. Slow and steady!
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!
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!
Roman’s Story - Congenital Diaphragmatic Hernia (CDH)
As Roman approaches his first birthday, we couldn’t be any more proud of him. He is the happiest, most determined, and cheeky little boy. He’s hitting his milestones and we are so grateful for him every day.
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!
Ella’s Story - Congenital Diaphragmatic Hernia (CDH)
I fought hard for my little girl all these months and will continue to. I questioned them, brainstormed and spoke up when I needed to. I wasn’t afraid to pull everyone in and advocate for family meetings when I got frustrated. My sweet Ella turned one this month and I am forever grateful to be her momma. She is truly a blessing and I am happy to have her here with us all today!