Ronnie’s Story - Congenital Diaphragmatic Hernia

We had a really tough pregnancy. I had Hyperemesis starting at 7 weeks and lasted my whole pregnancy. As soon as I started feeling slightly better, around 20 weeks, we received the bad news. We were so excited to learn that Ronnie was a boy, but as soon as the ultrasound technician said that the doctor would be coming into the room, I knew something was wrong. My heart sank into my stomach. The doctor told us that his stomach was in his chest, and they believed it was because he had a hole in his diaphragm. The doctor continued to talk, but my brain was racing, and I don’t remember the rest of the conversation. I remember they had us talk to a genetic counselor, wanted to do an amniocentesis, and talked to us about termination. I remember us feeling so lost, and I couldn’t stop crying. I felt like I did this to him. It was my fault, but it wasn’t. 

We were able to keep fighting for 36 weeks. We tried to induce to deliver naturally because we were told that was best for the baby, but my blood pressure became dangerously high. We ended up having an emergency cesarean section. Ronnie was born! He was bright red, and he didn’t cry. I cried and told my husband to check on him. From that point on, my husband stayed with him, and I could see him a few hours later. They were blown away at how amazing he was doing. They were even at one point unsure if he truly had a Congenital Diaphragmatic Hernia or was it something else.

On the best day, he took a turn for the worst, and we were scared out of our minds. The doctors didn’t know what was going on. There were so many x-rays because it looked like CDH but didn’t at the same time. Finally, they decided it was CDH and that Ronnie would need surgery. He continued to need more and more support. He switched from a regular ventilator to an oscillating ventilator within a few days. At that point, the doctors said he wouldn’t be able to have surgery because of being on the oscillating ventilator. (It causes the whole body to shake, making it hard to do surgery). After 4-5 days, they decided to switch the ventilators back and schedule his surgery. He had his surgery at 5 days old. It lasted like 8-9 hours, and we were going crazy! Even after surgery, there were a bunch of ups and downs. There was extubating and re-intubating, CPAP, off and on oxygen, change in medications, TPN, PICC lines, feeding tubes, and monitors. He spent 5 weeks in the NICU and made it home the night before Christmas. We have had ER visits, urgent care, and hospital stays even after discharge.