Cole’s Story - Congenital Diaphragmatic Hernia (CDH)

Baby Cole was diagnosed at our 20-week ultrasound. Instead of having a gender reveal, we were told the news that Cole's stomach was in his chest, which typically means CDH. We were told that there were a couple of different options, but our care was immediately transferred to Park Ridge, IL, to a specialist (an hour away from home). A couple of days later, we had an ultrasound and a fetal MRI with the specialist, and they confirmed that our baby had CDH. The day seemed like it was never going to end. We had meetings all day with different doctors that would be caring for Cole immediately after delivery. Our brains were pumped full of medical terms and scenarios that could happen during the pregnancy but mainly about Cole's care after he was born. We were told every CDH case is different, and for the remainder of my pregnancy, we couldn't do anything to help him. Cole was born a week early. He had a left side hernia, liver up. At 7 days old, he had his hernia repair surgery, and all went well. He never needed ECMO, and he amazed us every step of the way. He truly is a warrior.

The last month of our stay at the NICU was him getting off medications. He was off all breathing machines. At about 2 months old, Cole graduated from the NICU of Lutheran General, and we were sent home on NG feeding ONLY (no oxygen). Due to him burning calories so fast, he is on 24cal formula. He will be having G-tube surgery to hopefully slow down the spitting up.

Cole continues to grow, laugh, and exceed our expectations every day. According to his pediatrician, he is in the 40-50 percentile for his weight, height, and head measurements. My one tip is to ignore the statistics and the numbers that doctors give and stay positive. These babies are fighters!