Santiago’s CDH Story
We were so excited when my husband and I found out we were having a baby. Mainly because we always had a 4-year-old, and we couldn’t wait to give her a sibling. When we went in for my anatomy scan at 20 weeks, I was told I had complete placenta previa and that I would have to get a few ultrasounds done to see if it had moved throughout my pregnancy. We also found out we were having a baby boy. While the news of having PP was disheartening, and so was the fear of having a c-section, nothing could take away the joy we felt about bringing life into this world. Throughout my pregnancy, I received five ultrasounds, including an anatomy scan.
Our baby boy was healthy in each one according to the radiologist. At last, a c-section needed to be scheduled at 38 weeks because my placenta had not moved. Santiago was born at 10 am on July 18th, 2024, and weighed 7lbs 9oz. I got to hold him for a few minutes before the nurse noticed he was having a hard time breathing. They swept him away and took him to the NICU. I was able to see him a few hours later, and they said they wanted to keep him overnight to see if his breathing got better. The next day, seeing no improvement, his nurse ordered an x-ray to make sure he didn’t have any fluids in his lungs. A few moments later, the NICU doctor delivered the news, that our baby boy had his intestines in his chest. My husband and I were so confused we didn’t know what that meant. Quickly, the doctor let us know he needed emergency care and that they were not equipped to help him at this hospital. They intubated him, and he was sent off via helicopter to the Children’s Hospital of Orange County. Walking into that NICU was terrifying, not knowing what to expect. Doctors assured us that he was in the best care. Watching my baby be hooked up to so many cables was the most heartbreaking thing I had ever felt.
Our baby boy remained stable and did not require ECMO. At 5 days old, he had his CDH repaired. His surgery lasted 4 hours. His surgeon let us know he had a B/C grade hole in his diaphragm and that he was able to close it using stitches; however, the last stitch would not hold, so he had to use a tiny patch to cover that last area. Santiago spent 7 days intubated, and he was on the nasal cannula for 9 days. Slowly, everything started to come off, and we started feeds. Feeds were difficult at first as he didn’t want to take the bottle, but gradually, his feeds started to go up, and his feeding tube was removed. We got to bring our baby home after 3 weeks in the NICU.
Santiago is almost 6 months old. He is tachypneic at times, which was expected, with one lung being smaller than the other. I’m sure we have a long road ahead of us, especially with the cold season coming up, but we are so grateful to have our baby here with us. We are also grateful to everyone at the CHOC NICU!
