Lincoln’s CDH Story

At my 20-week anatomy scan, we were told that his heart was on the right side of his chest, and we would have to start seeing a high-risk OB from now on. At 27 weeks we were told he had Congenital Diaphragmatic Hernia (CDH) with stomach and intestines up. We were sent to Johns Hopkins in Baltimore, where I continued my prenatal care until Lincoln was born on October 10, 2023. His first few days in the NICU were pretty normal, and then that Thursday, he took a downhill turn. His blood pressure was all over the place, and the vent settings were maxed out. They placed him on the NOXBox and gave him a blood transfusion, which helped him tremendously. He had his repair at 5 days old, and at the time of his surgery, he had a type C defect, and his stomach, intestines, spleen, and part of his liver were up. He was successfully extubated and had his umbilical lines removed at 8 days old so we were finally able to hold him.

That same night, he had three unexplained seizures that thankfully did not have any long-lasting effects. After that hiccup, he didn’t have any other complications and was completely oxygen-free by 2 weeks old. The nurses and doctors were all shocked by his progress and called him an enigma because of how well he was doing. He learned to eat super well and was discharged a day after 32 days in the NICU. When Lincoln was almost 4 months old, he went back to Johns Hopkins, where he ended up having a blockage from scar tissue on his small intestine that caused his intestines to twist around themselves and cut off blood flow. Over half of his small intestine was removed, and he now has Short Bowel Syndrome. He spent 10 more weeks in the hospital and then came home with a G-tube and PICC line for TPN. He had three other hospital stays between then and now for line infections but is now PICC line-free and down to 20 hours a day of g-tube feeds. He is a happy but ornery 1-year-old and is the light in our lives.