The NEC Society frequently shares stories of babies impacted by NEC; Clifford’s story is one.
We went into our 19 week ultrasound hoping to learn if our first child would be a boy or a girl, and we came out having learned that we may never meet our son. Despite a healthy pregnancy and no risk-factors, our son had a birth defect. He was diagnosed with an extremely rare abdominal lymphatic leak called congenital chylous ascites. Only a few prior cases in the world had ever been documented. His condition progressed to severe non-immune hydrops. Frequent in-utero interventions, including percutaneous fetal surgery, allowed us to maintain our pregnancy (despite pre-term labor) until 32 weeks.
When Clifford was born by emergency cesarean section, he needed immediate resuscitation, intubation, and surgical procedures. We began a very long Neonatal Intensive Care Unit (NICU) journey. He had a lot of surgeries, several life-threatening infections, countless blood transfusions, constant ventilation, and months with no food. For the first few months of his life, we were uncertain if we would ever take him home. Because his condition was so rare, there was no clear course for how to treat him. The neonatologists and pediatric surgeons at C.S. Mott Children’s Hospital began their research even before he was born. And while Clifford fought for his life in the NICU, his medical team kept brainstorming and trying different ways to help him.
Clifford’s lymphatic leak was eventually healed through a combination of surgery and medications. One drug, Octreotide, was heavily debated amongst his physicians. Its documented success in healing chyle leaks was inconsistent, and also posed the risk factor of developing necrotizing enterocolitis. It was eventually decided that Octreotide would be administered. It was one component, of many, that aided in Clifford’s chyle leaks eventually healing and finally being extubated at 3 months. However, as his medical team had cautioned, he developed necrotizing enterocolitis.
We were changing his diaper and noticed a small fleck of blood. We brought it to the attention of our nurse, who sent it to the lab, and paged the doctors. Our neonatologist ordered an abdominal X-ray, which confirmed her suspicion that he had necrotizing enterocolitis. Octreotide was pulled and all feeds were stopped. The necrotizing enterocolitis was caught so early that they were able to fully treat it with antibiotics and withholding food. Clifford was over 1 month gestational age when he developed necrotizing enterocolitis. The Octreotide was a necessary evil for him, and we fortunately had a medical team who acted very quickly when he presented with a symptom.
After 127 days in the NICU, Clifford finally came home. Over 3 months of pumping and freezing breastmilk while Clifford could not eat, combined with a lot of Kangaroo Care, allowed us to bring him home as an exclusively breastfed baby. We are forever thankful that extraordinary measures were taken to save Clifford’s life. He has grown into an incredibly healthy, happy, and bright boy.
A video of Clifford’s story can be viewed here.
You can read other babies’ stories on our NEC Stories page.