Eden’s CDH Story

As we come up on Miss Eden’s one-year anniversary of being diagnosed, as a CDH mom I sit and reflect on our journey. Eden was diagnosed 12 days after she turned 2! Just the night before, she was dancing and singing at a local holiday parade. How could this be?

It started as just a cold, or so we thought, going to the ER where X-rays said she had pneumonia. As we returned home with medication, she seemed to never get better. Something in my heart told me there was more to the story. With uncontrollable vomiting that lasted over 24 hours and nonstop sleeping, I then went to wake her up, but she was not even able to open her eyes. Her eyes rolled back in her head, and I immediately gathered her up and headed for the ER.

After the third ER visit, we did repeat X-rays. The unimaginable happened as the doctor came in and sat down to share the news. We found out that all of her small intestines and half of her colon were in her chest cavity. We awaited a transfer to UW Children’s via ambulance to have a CT scan to confirm the diagnosis. This is when we learned that her CDH was most likely missed on a 20-week ultrasound, and she had been going about her days with a hole in her diaphragm for 2 years! After getting the diagnosis, I was asking myself, was this my fault as a mom? How could this be missed, and how is this reality? She underwent surgery to repair her left-sided CDH the next morning, with only a 7-day hospital stay that seemed like forever. We then went home.

As a first-time mom, this was one of the scariest, most intense situations I couldn’t even understand. I am so proud of the moms who have medically complex children, but trusting your mom instincts is something I will never question. As parents, we are responsible to fight and make sure we are heard for our child’s sake. If I wasn’t persistent, I might not have had my baby here with us today!