Abigail’s CDH Story

At our eight-week ultrasound, we were surprised to discover that we were having twins. I was nervous and scared, and my husband was ecstatic. At our twenty-week scan, we found out that Baby A (Abigail) had what appeared to be Congenital Diaphragmatic Hernia (CDH). We were devastated that there was something out of the normal going on and didn't know what to expect after hearing the news. We did what anyone would do and looked up on Google what CDH was, which only made the news worse.

After several ultrasound appointments and consulting with an MFM, we were referred to the Children's Hospital of Colorado. The Children's CDH team created a game plan for Abigail and Lillian's arrival and reassured us that they had extensive experience with CDH babies and that they would do their best. I had a planned C-Section on the 10th of February, but Abigail couldn't wait any longer and decided the 8th of February would be the day. Hours after she was born, she was put on ECMO and then had her CDH repair on her second day of life. She was classified as Class D LCDH, and it was heartbreaking to see how many machines she was connected to, all critical to keeping her alive as she recovered.

As time went by, she got bigger and stronger, allowing for some machines to be removed. The happiest moment for us was when she was finally extubated, one of the last machines vital to supporting her respiratory system. She eventually had surgery for a G-Tube and Nissen Fundoplication due to reflux issues, both of which would aid in keeping her growth on track. She spent a total of 116 days in the Children's Hospital NICU, and we were again shocked once we got home. Not everything was what we expected. Postpartum depression hit us hard. The days are getting easier, and Abigail is continuing to grow. Her sister Lillian is hitting all her milestones and developing normally. It's nice having a community like Tiny Hero to connect and share experiences with other CDH parents around the country.