Trey’s Story - Congenital Diaphragmatic Hernia (CDH)

Trey was born July 1, 2004, with undiagnosed left-sided CDH. He was born about a month premature but we had no idea anything was wrong. After delivery, he was retracting with low O2 saturations, and he was kept in the nursery. We did not get to hold him or breastfeed. An hour later, the on-call pediatrician came into my room and said, "you have a very sick boy." My heart dropped. I just found out that my baby was a boy, but now he was sick too. Plans were in discussion to transfer him to a larger children's hospital. We had to learn quickly about CDH and all that it involves while trying to navigate telling our families.

Two days later, he had surgery and was off the vent later that week. We were told he had a collapsed lung on one side but had enough lung tissue to reinflate and repair the diaphragm. He was a fighter the entire time that he was in the hospital for those three weeks. It was a learning and growing experience for all of us. We didn't get to hold him or feed him until two weeks in because of the vent, BiPAP, and all the IV lines. I never got to do skin-to-skin, a bath or newborn pictures. It was heartbreaking and yet beautiful at the same time. We were just so thankful he was alive and improving.

Once home, he was an uncomfortable and crying baby for the first few months. He had an inguinal hernia repair surgery three months after discharge. When they pushed his organs down from the chest into the belly, a large loop of bowel found its way out of the belly cavity and caused a common hernia in the groin area. He had that repaired by our same surgeon, who is the best and smartest man I know, Dr. Edmund Yang! The next few years were hit or miss with a child who cried a lot, had trouble with formula, and vomited a lot! We learned so much about CDH and how lucky he was -- later finding out that as many as 50% of the babies with this defect don't make it. At age three, his hernia reopened. It was very difficult to diagnose because he couldn't really tell us what was wrong due to his age. We went back to the same hospital and had our same surgeon AGAIN do his repair, which was great. He remembered us and was happy to again save our son's life!! Since that repair at three, Trey has been thriving. He has been through a lot but always bounces back better than before. He is a strong, funny, and kind CDH survivor. Now, he is 17 years old, just started his senior year of high school, and the light of our lives!

Sincerely,

David and Lisa Barmore of Kentucky.