05/29/2026
I had a normal pregnancy until 29 weeks, when I began having repeated preterm labor scares with no clear explanation. At my 30-week growth scan, an abnormality was seen near my baby’s heart, and I was urgently referred to maternal-fetal medicine. Before I could be seen, I went into preterm labor again at 33 weeks, and further testing revealed the cause: my son, Robert, had congenital diaphragmatic hernia (CDH). I was also experiencing severe polyhydramnios, which was rapidly shortening my cervix and pushing my body toward early delivery.
Robert was born just two weeks later at 35 weeks and 3 days. Because I have severe idiopathic gastroparesis managed by a gastric pacemaker, I could not safely undergo an MRI, leaving us unable to determine how severe his CDH was before birth. We entered delivery knowing our son had a life-threatening condition, but without a clear prognosis.
Nothing prepared my husband, Paul, and me for the NICU journey that followed. Initially, Robert did surprisingly well for a CDH preemie, even with a grade 1 intraventricular hemorrhage. On day seven of life, he underwent CDH repair surgery and began to improve, giving us hope that the worst was behind us. Five days later, that hope was shattered when he suffered a sudden pulmonary hemorrhage. ECMO was not an option, and we faced the very real possibility of losing him. Despite overwhelming odds, Robert fought through some of the darkest days of our lives. Before discharge, Robert required two additional surgeries: a PDA clip and a Nissen fundoplication with G-tube placement due to severe feeding and reflux issues.
Now, four years later, Robert’s biggest challenge is GI issues. He is J-tube dependent but slowly learning to eat by mouth. He is nonverbal and on the autism spectrum, yet joyful, determined, and thriving in his own way.
NICU Mama Heather
