Necrotizing Enterocolitis: What You Need to Know

What Is Necrotizing Enterocolitis (NEC)?

Necrotizing enterocolitis (NEC) is a disease of the intestines that most commonly affects premature babies. It is characterized by excessive inflammation of the intestines that can lead to intestinal damage and death.

Despite significantly improved neonatal care, the morbidity and mortality associated with NEC have not significantly improved since the initial description of the disease six decades ago. NEC affects over 7,000 babies each year in the U.S alone, and the death rate is as high as 50%. NEC is currently the leading cause of overall infant deaths in the US. The exact cause of the disease is still unknown, as is the ability to determine which babies will develop the disease.

How Does NEC Develop?

The first time many families learn about NEC is when their baby is diagnosed with the disease, often when they are several weeks old. NEC can strike suddenly and progress rapidly; babies with NEC may be perfectly stable until they suddenly become extremely ill with abdominal swelling, bloody stools, decreased activity, and apnea (not breathing) and bradycardia (low heart rate).

Almost all babies who develop NEC have been fed. Some babies with NEC develop the disease within 2 or 3 days after a blood transfusion. Babies receiving a blood transfusion should have their feeds held to decrease the chance of them developing NEC. Approximately 10% of babies that develop NEC are full term. Term babies with NEC usually have a birth defect involving the heart or have experienced an episode of low oxygen levels in their blood.

Parents know their babies best. As important members of their baby’s care team, they should be aware of the signs of NEC and feel empowered to raise their concerns.

Can NEC Be Prevented?

While there is currently no known cure for NEC, the risk of NEC can be decreased by: 

• Feeding of mother’s own breast milk
• Feeding of donor human milk if mother’s own breast milk is not available
• Avoiding overuse of antibiotics
• Avoid using acid-blocking medications

Although still needing further investigation, administration of probiotics (beneficial bacteria) is becoming used more often to decrease the chance of developing NEC.

What Is the Treatment for NEC?

To treat NEC, all feedings are stopped. A tube is placed through the mouth into the stomach to keep the intestines empty, and antibiotics are administered. Blood tests and abdomen x-rays are obtained regularly.

In severe NEC cases, surgery may be needed. Surgical options include opening the abdomen (known as an exploratory laparotomy) to remove the dead portions of intestine, or placement of a soft rubber drain into the abdomen to allow drainage of damaged material (known as peritoneal drainage). Babies who only undergo insertion of a drain may need laparotomy hours or days later.

In the most severe cases all of the intestines may be dead which is called “NEC Totalis,” which is not survivable. Babies who survive NEC often have lifelong neurological and nutritional complications.

Progress in NEC research and awareness are rapidly advancing. The NEC Society is an excellent resource for parents to learn more about this disease, as is NEC Awareness Day, May 17. For more information about building a world without NEC click here.