Avery’s Story - Congenital Diaphragmatic Hernia

Avery was born on December 29, 2021. We had already known that she had a moderately severe left-sided CDH. Her stomach, bowel, and liver were all up in her chest. We also have a three-year-old and were very nervous about juggling everything.

Avery was almost immediately intubated and taken to the NICU. They were able to get her somewhat stabilized, but her condition was worsening. They eventually transported her to the Children's Hospital, about 10 minutes away. That was always part of the plan, but getting her stable enough to travel even that far was difficult.

Once at the Children's Hospital, they called me to get permission to put her on ECMO and let us know she would be in the PICU. The surgeon had said her case was now considered a worst-case scenario - she would need ECMO to survive.

She was on ECMO for about a week and a half. They wanted to trial her off to the oscillator, but the trials were not going as planned. She ended up bleeding in her brain and needed to come off of ECMO. Thankfully, she did well on the oscillator and was able to have surgery about two weeks after she was born. Everything went pretty well with her surgery, and she was moved from the PICU to the NICU. We did not get to hold Avery for the first time until she was almost three weeks old.

After being weaned off of meds, and the many steps off oxygen, the biggest hurdle was feeding. She had an NG tube on continuous feeds for what seemed like forever. We also dealt with some pretty bad reflux, where she was spitting up multiple times a day.

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. Thankfully, Avery did not have any other major health issues. Her heart has developed well, and her echos have been good. It is amazing how strong these babies really are! Even though it's hard, it really is true when people say not to lose hope.