CDH Stories
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!
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.
Sinead’s Story - Congenital Diaphragmatic Hernia (CDH)
We are so proud of Sinead, she never let CDH get to her, and she continues to amaze us every day. To all parents that have CDH kids - it can sometimes be a long battle, but well worth it!
Hayden’s Story - Congenital Diaphragmatic Hernia (CDH)
We still can't believe Hayden is doing as well as he is today. He has oxygen support at ¼ liter and does have a G-tube, but it seems pretty minor compared to what they were expecting for our little guy. He is both a miracle and a blessing, and we thank God every day that he proved everyone wrong.
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!
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.
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!
Sophia’s Story - Congenital Diaphragmatic Hernia (CDH)
Sophia has been thriving at home ever since. She’s developing normally and growing like a weed. No one who meets her would ever know how rocky her start was!