CDH Stories

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

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!

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

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.

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

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.

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

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!

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