Elizabeth’s Story - Congenital Diaphragmatic Hernia (CDH)

Her name is Elizabeth, our little nugget. She was diagnosed with left CDH when I was 16-weeks pregnant, and sadly, doctors kept pushing towards termination, but we knew our nugget was strong and a fighter. She was born on May 6, 2021, weighing 6 lbs, and was 19 inches long. My baby was intubated right away. We didn't hear a cry, and she was purple as soon as they cut the umbilical cord. As much as we tried to prepare and educate ourselves by asking different doctors and getting other opinions, we weren't ready to see her in those circumstances. We knew all the procedures that would occur and could be done, and we were hoping she wouldn't have to go through any of them. Unfortunately, she did, and she showed us she is the strongest human we know. She went under 3 ventilators, PICC lines, and then to ECMO. She was only on ECMO for 7 days in order to get her stable for her repair surgery at 16 days old. She was intubated until June 14. Her lungs are finally strong enough to be on a nasal cannula and now on 1/2 liter of oxygen. She's currently weaning from narcotics and working with a dysphasia team at Children's Hospital Los Angeles. We're taking it day by day. She is so close to coming home!

No one could love her as much as we love her. Seeing her overcome everything has been such an incredible journey. Words can't describe how happy she makes us. At first, all we can do was watch her, and after a month in the NICU, we could hold her. We're still waiting for the day to have skin-to-skin with her. I know that day will come soon.

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. We've had the opportunity to be with her during this CDH journey. Many people doubted us and our strength during this journey because we're a young couple in our early 20's, but we've been able to be here for our Tiny Hero. The NICU team here at CHLA was so amazed at how well we've managed to hold it together. It's tough at times, but she is our daily reminder of strength. Throughout this CDH journey, she has overcome so much and has conquered everything put in her way. She truly is a warrior!