Avery’s Story - Congenital Diaphragmatic Hernia (CDH)

I will never forget that second anatomy scan. I went to that appointment alone, expecting it to be just a quick follow-up to get additional angles just like it was for my first child. I couldn’t have been any more wrong.

The ultrasound tech scanned for a full hour and still couldn’t get what she needed. She called in the doctor, and he was robotic. He scanned in silence and did not look away from the screen. I remember being able to hear my heart pounding in my ears. The room was so quiet. After 20 minutes, he said, “if you can meet me in my office, I have some concerns.” It was then that my heart sank, and I knew this pregnancy was not like my first.

I got into his office, and he wasted not one second telling me my baby had a congenital diaphragmatic hernia (CDH). After a brief description of what CDH actually was, he told me, “but unfortunately in this state, you only have 6 days left to decide on termination.” My eyes glazed over, and I didn’t hear anything he said after that. Never did I imagine hearing those words. I got out of my car in the pouring rain and called my husband, sobbing that something was wrong with our daughter.

Three days later, we had our first of many visits at the Children’s Hospital of Philadelphia (CHOP). After countless hours of testing, we left knowing we had a moderate case of LCDH with her bowels in her chest, and her liver was down. I remember sitting on the Tiny Hero website reading every single LCDH story with liver down. The more I read, the more nervous I became, but I also became educated, and for that, I am grateful.

Avery was born on March 18, 2021, within minutes of us arriving at CHOP (what a long ride to the hospital that was). And just as quickly as she was born, she was whisked away to be evaluated and intubated.

Two hours later, we got to see her briefly before they took her down to the NICU, and nothing about that night even felt real. Within hours of birth, they switched Avery to an oscillator from the conventional ventilator. The next few days would show that she hated that vent, but who could blame her? She stayed stable and was switched back over to the conventional vent and thrived. Two days later, at 13 days old, she had a primary CDH repair with no patch needed. The repair was seamless, and we finally got to hold her.

Five days after her repair, she was extubated to high-flow oxygen, and she did great. Two days after that, she was on regular oxygen, and just two quick days later, she was breathing room air. Avery took the world by storm and showed everyone just how strong she really was.

Avery was discharged after 38 days with just an NG tube that she was weaned off of just a short 3 weeks later. We never expected her CDH journey to be that quick, but we are so lucky that it was. You would never know what that first month of her life entailed, and there will never be enough thank you’s in the world to thank Dr. Hedrick and every other doctor/nurse who took care of her. She is our strong and brave little girl, and she has been a rockstar since day one.