CDH Stories
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.
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!
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.
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.
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.
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!
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.
Elizabeth’s Story - Congenital Diaphragmatic Hernia (CDH)
Being able to hug her, see her smile, hear her babble is the best gift God could have given us. She's such a strong and intelligent baby. I can't wait to see what she does in life. I'm so happy Elizabeth chose us to be her parents.
Trey’s Story - Congenital Diaphragmatic Hernia (CDH)
Trey has been through a lot but always bounces back better than before. Yesterday, he started his senior year of high school. He is a strong, funny, and kind CDH survivor. Now, he is 17 years old and the light of our lives!
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.
Cole’s Story - Congenital Diaphragmatic Hernia (CDH)
Cole continues to grow, laugh, and exceed our expectations every day. According to his pediatrician, he is in the 40-50 percentile for his weight, height, and head measurements.
Cooper’s Story - Congenital Diaphragmatic Hernia (CDH)
Cooper is our miracle and our CDH warrior! He is currently 8 months old, fully weaned from the NG tube, and doing so well!
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!
Pippa’s Story - Congenital Diaphragmatic Hernia (CDH)
You learn so much in those first few days. It's so much to wrap your head around. But we clung to the smallest things people said that gave us hope.
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.
Aero’s Story - Congenital Diaphragmatic Hernia (CDH)
After 57 days in the NICU, we were able to come home a couple of weeks before Christmas. October 11th will forever be a day to remember!
Jorja’s Story - Congenital Diaphragmatic Hernia (CDH)
She has defied all the odds. Home is where she belongs with her big brother, Leo. We are forever proud and grateful for her. There were many times we thought it was the end. We can't say thank you enough to all the healthcare workers for saving our warrior princess.