Sophia’s Story - Congenital Diaphragmatic Hernia (CDH)

Our 20-week ultrasound showed an unknown abnormality near Sophia’s right lung as well as some slight fluid buildup in the chest cavity. After 8 long weeks of monitoring, testing, and an MRI, we were finally diagnosed with right-sided Congenital Diaphragmatic Hernia (CDH). A good portion of her liver was in her chest, almost no right lung was visible, and there was considerable fluid filling her chest (called Pleural Effusion).

We made the tough choice to relocate to Cincinnati for the remainder of the pregnancy and Sophia’s care following birth. It meant negotiating remote work with our employers, rehoming our pets for the duration, and finding housing, but it was ultimately the best for Sophia. (We can’t say enough great things about Ronald McDonald House Charities!)

Thanks to the wonderful team of CDH specialists, we had a shunt placed in Sophia’s chest in utero at 31 weeks to drain the fluid. This relieved much of the pressure in her chest, allowing her right lung time to expand and grow before birth. Her progress was closely monitored with twice-weekly ultrasound appointments and another MRI to plan for delivery.

Sophia made her entrance naturally at 37 weeks and was immediately intubated and whisked down to the NICU. Thankfully, she was easily stabilized! Dad was able to stay with her the whole time and Mom was wheeled over just a couple of hours later. Being able to deliver at the children’s hospital was one of the biggest blessings in our CDH experience.

On day 3, Sophia’s hernia was repaired with a primary closure. She recovered well and we started our journey toward coming home. Sophia made quick progress on her milestones, losing the ventilator on day 6, oxygen support on day 19, and her feeding tube on day 20. She was released with no oxygen support and 100% oral feeding on day 24!

Sophia has been thriving at home ever since! She’s developing normally and growing like a weed. No one who meets her would ever know how rocky her start was. All our love and thanks goes out to the fantastic teams in fetal care, special delivery, and the NICU at Cincinnati Children’s Hospital!