CDH Stories

Liver Up - Right Sided Elizabeth Cummins Liver Up - Right Sided Elizabeth Cummins

Kash’s CDH Story

Kash acts like a baby who was never hospitalized for 2.5 months and was never on ECMO/intubated. We have a wonderful team and physician to thank as well as an amazing God who guided us throughout our entire journey. Kash has the devoted backing of family and friends “Kash’s Krew” who gave us unconditional love and support while being so far away from home!

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Elizabeth Cummins Elizabeth Cummins

Ella’s CDH Story

Our family is so grateful for the Tiny Hero organization. We never would have learned that we could save our daughter if it weren't for the Facebook group with so many people recommending specialty hospitals.  Our daughter would not have made it if we had stayed in the state for her care!

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Elizabeth Cummins Elizabeth Cummins

Masina’s CDH Story

I dove into hours of research on CDH and joined every support group, forum, and community I could find. The CDH support network from Tiny Hero became our beacon of hope, providing us with the knowledge we desperately needed!

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Liver Up - Left Sided Elizabeth Cummins Liver Up - Left Sided Elizabeth Cummins

Kendall’s CDH Story

Kendall is now over 3 months old. She is doing amazingly cognitively and physically! I don't think she'd be where she is without the care from Dr. Kays' team and without the Facebook page from Tiny Hero, where I got their recommendation. She really is a fighter and I can tell that in her personality already. I know she will do amazing things in her life!

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Liver Up - Left Sided Elizabeth Cummins Liver Up - Left Sided Elizabeth Cummins

Aspen’s CDH Story

Aspen is a bubbly, happy, and very curious 2-year-old who loves going to the playground, playing with Play-Doh, doing Legos, and going shopping with her parents! Her story proves that CDH diagnosis doesn’t define your child and their future in any way.

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Liver Up - Left Sided Elizabeth Cummins Liver Up - Left Sided Elizabeth Cummins

Oliver’s CDH Story

I am hopeful that our complicated and rare journey can help someone someday. Oliver is one in a million and truly a miracle! We feel blessed to have our baby alive and thriving. I am so thankful for the many people and doctors/nurses who have helped us along this crazy and stressful journey.

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Liver Up - Left Sided Elizabeth Cummins Liver Up - Left Sided Elizabeth Cummins

Baylee’s CDH Story

Baylee has been living it up at home with her brother, getting stronger by the day and thriving every day. She is still very small, but that doesn’t stop her from doing anything. Baylee is now a year old and is the sweetest, most independent baby ever. This journey was not easy at all, but these babies are so strong and worth every bit of it!

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Liver Down - Left Sided Linda George Liver Down - Left Sided Linda George

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!

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Liver Up - Left Sided Linda George Liver Up - Left Sided Linda George

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.

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