Barb and Andrew Carr share the inspiring story of their son, Benji’s, diagnosis of Congenital Diaphragmatic Hernia. The video originally aired on our 2020 CDH International Telethon on April 30th.
Barb shared with us, “after years of fertility struggles and an ectopic pregnancy, we were thrilled when we found out we were pregnant with a boy. Our excitement came to a screeching halt at 20 weeks when an ultrasound showed his stomach in his chest, at which point he was diagnosed with a diaphragmatic hernia. We had never heard of CDH and the doctors didn’t know if he’d survive. We were referred to specialists and waited two long weeks before our initial consultation. We spent the entire day at the hospital, with more than 5 hours of it spent on ultrasounds and echocardiograms. Patients at this hospital with CDH generally had a 70% survival rate which, while higher than the national average, was frightening for us as first-time parents. Benji had a left CDH and his stomach, small and large intestines and part of his liver were all up in his chest.” Watch the video to hear how Benji’s NICU journey ended and what he is up to now.