Adelyn's Story - Congenital Diaphragmatic Hernia (CDH)

Adelyn James Sanchez is our six month old LCDH survivor. She is our third baby, but also our second CDHer. When we received the news of the CDH, we were so devastated knowing the journey she would have ahead of herself, but we also were filled with so much hope because we knew that with the right team, she would do great. We could also look at her older brother Jaxson and see that his big happy smile was just a glimpse into Adelyn’s future. 

She was born with a small cry (which was a big deal) and these big bright eyes that kept looking at me when the wheeled her by me after she had been stabilized. She had 12% of her liver, her stomach, intestines and spleen in her chest and only 23% of her lung volume. 85% of her diaphragm was missing and Dr. Kays used a GoreTex patch to sewn in the rest. She cruised right along skipping ECMO, much to our surprise, and only requiring ventilator support for 15 days. At 5 days old, she had her life saving surgery. She had a couple hiccups along the way and my husband and I were on pins and needles wondering if she would need ECMO. 

Thankfully with Dr. Kays’s tricks and knowledge, she continued to do well and was off all O2 support by her third month. She struggled eating for a while, but once she got the hang of it, she did fantastic. At 62 days old, we got to bring our Tiny Hero home to her siblings. At home, she has continued to thrive. She is meeting milestones, growing appropriately, and we couldn’t be more thankful. Today, at 2 years of age, we couldn’t be more grateful that though her beginning was tough, a diagnosis did not slow her down. We are very in love with her!