CDH Stories
Oliver’s CDH Story
Ollie is almost two years old and the happiest, most loving, playful little boy. If you are a parent just finding out or in the thick of it, know that these Tiny Heroes are stronger than you think and will be ready to fight!
Charlotte’s Story - Congenital Diaphragmatic Hernia
Charlotte came home on December 29th with an NG tube and no medications except Pepcid and vitamin D. Within a week of being home, the pediatrician allowed us to take out the NG tube since Charlotte was taking a bottle and breastfeeding just fine. Our sweet girl is absolutely a Tiny Hero, and I hope that she continues to beat everything thrown at her!
Rhiley’s Story - Congenital Diaphragmatic Hernia
For all of the CDH parents out there currently in the thick of it like us, know that these babies are stronger than you can imagine. They fight like hell and are so resilient. Also, remember to give yourself grace and know that a whole community is available to help get you through what is most likely one of the hardest things you will ever experience.
Avery’s Story - Congenital Diaphragmatic Hernia
Avery ended up being in the hospital for two and a half months and coming home with a G-tube and no oxygen needed. Now at almost a year old, she's G-tube free and hitting all her milestones. Her heart has developed well, and her echos have been good. It's amazing how strong these babies really are. Even though it's hard, it really is true when people say not to lose hope.
Rylee’s Story - Congenital Diaphragmatic Hernia
My name is Samantha, and my fiancé's name is Mark, and we're the parents of our wonderful daughter, Rylee. Now that we’re home, she gets OT and early development therapy. She also sees a neurologist, cardiologist, and GI doctor. She is a Tiny Hero!
Asaiah’s Story - Congenital Diaphragmatic Hernia
Asaiah was born at 32 months and 2 weeks and has been fighting ever since. He is now 2 months old now and currently taking 80 ML. He is stable on CPAP and we might consider rehab for him in the near future. He is our Tiny Hero.
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.