CDH Stories

Liver Down - Left Sided Elizabeth Cummins Liver Down - Left Sided Elizabeth Cummins

Presley’s CDH Story

She's now a feisty two-year-old who keeps us on our toes. She loves to do anything in the water, including swimming, going to the lake and feeding the ducks, or, when we're lucky enough, going to the beach. We cherish every moment we get with Presley because it's one more moment we weren't guaranteed, and that makes every moment that much more special!

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

Charlotte’s CDH Story

After 68 days in the NICU, our sweet miracle came home! Charlotte is now ten months old, developmentally right on track, and eating completely orally. She is still small, but that doesn’t stop her from doing anything! This journey is so hard, but these babies are strong and worth the fight!

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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 - Right Sided Linda George Liver Up - Right Sided Linda George

Charlotte’s Story - Congenital Diaphragmatic Hernia

If I could talk to myself or someone else in my position during those dark few days shortly after diagnosis, I would tell her that there can be a happy story. You can find strength you did not know you possessed, and you can find support to get through the long days. Charlotte is still full of fire. I can't wait until she is older and I can share with her just how amazing she really is!

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

Kai Michael’s Story - Congenital Diaphragmatic Hernia

To think back to November 2022, when the doctors told us to terminate, to now a happy, healthy, thriving little boy is such a miracle. For all of those parents having to endure the same battle we did with CDH, don't lose hope. We have learned that CDH has a wide variety of outcomes. The numbers listed are just that, numbers. These warriors we are blessed with are that and so much more!

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Leah Coonley Leah Coonley

Tiny Hero Memorial

Once a Tiny Hero, ALWAYS a Tiny Hero! These miracle children will never be forgotten.

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