Lily’s CDH Story

March 27, 2025—the day our doctor in Stuttgart, Germany, found the left-sided congenital diaphragmatic hernia (CDH) in our little girl. I was only 16 weeks pregnant and terrified.

The tone from the doctors left me unsure if we would even be able to raise her. They categorized her CDH as moderate to severe, and suddenly our pregnancy was filled with fear and uncertainty.

I felt overwhelmed by the thought of going through the NICU journey without many friends or family nearby, while also facing a language barrier. We had only been living in Germany for six months. After many conversations, Jonathan and I made the difficult decision for me to return to the United States so we could receive care at Primary Children’s Hospital and be closer to family.

Our first appointment at Primary Children’s was on April 28th with Dr. Bruno, where they performed another extensive ultrasound. The CDH diagnosis was confirmed, but they also discovered another concern—a ventricular septal defect (VSD) in her heart.

Once again, our hearts were broken. It felt like every appointment brought more difficult news.

About an hour later, we met virtually with Dr. Yang. For the very first time, we felt a glimpse of hope when she said, “I feel confident in taking care of your little girl. I don’t think she’s going to die.”

I started sobbing over the phone. It was the first time someone had spoken about our daughter’s situation with such positivity and hope.

Lily spent 60 days in the NICU, and we witnessed so many miracles along the way. We are incredibly grateful for all of the gifted surgeons, doctors, and nurses who cared for our little girl.

Amazingly, when we left the hospital, feeding was our biggest challenge. Her heart issue had resolved, she was breathing room air, and she went home with an NJ tube. About a month later, after what I thought was an impressive amount of time, Lily pulled out her NJ tube, and we decided to try an NG tube. Thankfully, she did well.

Two months later, we were able to celebrate another milestone—Lily was tube-free!

Today, Lily is thriving, and we couldn’t be more grateful. Her journey has been filled with uncertainty, challenges, miracles, and so much hope.

Lily is our little fighter and a reminder that even in the hardest moments, hope can carry you through.