What is NEC?

NEC is a gastrointestinal illness affecting roughly  1 in 1,000 premature infants and 1 in 10,000 full-term infants. NEC is most common in premature infants, especially those born before the 37th week of pregnancy and those weighing less than 5.5 pounds. It is also more common in infants who consume cow’s milk-based formula instead of human breast milk.

NEC occurs when the lining of the intestinal wall dies. Some infants recover with few symptoms, while others develop life-threatening holes or perforations of the intestine, allowing bacteria to leak into the abdomen.

Types of NEC

Doctors recognize several types of NEC, depending on when the disorder occurs and the age of the infant. These types include:

• Classic NEC: Affects infants born earlier than 28 weeks of pregnancy. Symptoms occur three to six weeks after birth. 
• Atypical NEC: Appears within the first week, sometimes before the first feeding. 
• Transfusion-associated NEC: Appears within three days of a blood transfusion for birth-related anemia. Some data suggests one in three premature babies develop NEC following a transfusion. A more recent study indicates this may not be accurate, but further study is needed.
• Full-term infants with NEC: Often have a related congenital defect, such as a heart defect, gastroschisis (a condition where intestines form outside the body) or low oxygen levels at birth.

The exact cause of NEC is not well known. In premature infants, the cause may be the infant’s immature digestive system. Doctors know that fetal intestines fully develop during gestation around the 26th week. An immature intestine cannot fully digest food. In that case, toxins can build up, inflaming the intestinal wall and leading to tissue death.

Other possible causes or factors in NEC include:

• Bacteria
• Certain types of cow’s milk based formulas
• Congenital conditions, such as heart disease that requires bypass surgery
• Inadequate circulation to the intestine
• Low birth weight
• Lack of a structural barrier in the intestine that blocks bacteria

NEC “outbreaks” in neonatal intensive care units (NICUs) that affect several infants at once are believed to be caused by bacteria such as E. coli contamination.

NEC typically has general, nonspecific symptoms. They can appear suddenly, usually two to six weeks after birth. Since NEC mostly affects premature and low birth weight infants, your baby’s healthcare team will probably notice the symptoms first.

However, NEC can also affect full-term infants and preemies who have been sent home for care. If you notice any of these signs and symptoms in your baby or a baby you care for, you should immediately contact a doctor or seek emergency treatment.

• Abdominal pain, swelling or bloating
• Changes in heart rate, breathing or blood pressure
• Diarrhea with blood in the stool
• Fever
• Lack of appetite or difficulty feeding
• Lethargy
• Vomiting with green or yellow vomit

These symptoms can be signs of a serious infection. Whenever a premature infant has a fever with vomiting and diarrhea, parents should contact the baby’s doctor immediately.

How is NEC diagnosed?

NEC is diagnosed with a combination of symptom identification and x-rays. When a baby has symptoms like a swollen abdomen, bloody diarrhea and loss of appetite, doctors may perform an abdominal x-ray. NEC appears as “bubbles” in the intestine and sometimes outside the intestine in the abdominal cavity.

Doctors may perform other tests to confirm NEC and check for infection in the infant’s system. Some tests can include:

• Blood tests for bacteria or lactic acid, meaning there isn’t enough oxygen in the blood
• Stool exams for blood or bacteria
• X-rays or ultrasound tests for air in a blood vessel (the portal vein) in the liver

These tests also help determine how serious the condition is. For instance, air in the abdomen could indicate a hole in the intestine that requires surgery to repair.

Treatment for NEC depends on the severity of the condition and the age of the infant. NEC has three stages of severity. Stage one includes mild bloating, vomiting and diarrhea. Stage two involves abdominal pain and gas in the intestinal walls. Stage three, the most serious, includes inflammation, severe pain, fluid and gas in the abdomen and breathing difficulties. Each level calls for increased care and treatment.

Treatment steps for each level involve supportive care, such as IV fluid, stopping any tube feeding, giving antibiotics for infections and providing oxygen. More serious cases may require:

• Creating an ostomy, which is a hole in the baby’s abdomen that connects the intestine to the outside of the body. This bypasses the damaged section and lets that section of the intestines recover. Typically, an ostomy or drain can be removed after about six to eight weeks. The infant should have fully recovered from NEC by that time.
• Inserting a drain into the abdomen to remove gas and fluids
• Keeping the stomach drained with a nasal tube so the intestinal inflammation can recover
• Removing dead sections of the intestine surgically

Are there long-term effects of NEC?

Even with treatment, NEC can have serious long-term effects. Because NEC affects premature and newborn infants, ongoing follow-ups are necessary to monitor their development after recovery. Delays in physical and psychological development are common, especially after surgery.

More serious long-term effects may include:

• Abdominal infection and sepsis. If a hole develops in the intestine, bacteria enters into the abdomen, causing an infection called peritonitis. This infection can enter the bloodstream, a condition called sepsis. These are life-threatening infections of the entire body, and survivors experience organ failure, mental impairment and other problems.
• Intestinal stricture. A “stricture” is a narrowing of the intestines. This develops a few months after the baby recovers from NEC. The narrowing makes it harder for food to pass through the intestines. Some children need surgery to re-open the intestines.
• Short bowel syndrome. Sometimes called “short gut” syndrome, if NEC destroys enough of the intestines, the child can’t absorb enough nutrients through that part of their bowels. This results in malnutrition. Children with short-bowel syndrome need lifetime care, and possibly tube feedings to survive.

NEC can be frightening for parents, but there are answers for most questions you may have about the condition.

Is NEC preventable?

Doctors do not know how to prevent NEC. Women at risk for premature birth can get corticosteroid injections, which may help improve the health of the developing fetus, and may lower the risk of lung and intestinal problems after birth. Feeding the newborn breast milk instead of formula can also lower the risk. If the birth mother’s milk is not available, pasteurized donor breast milk can be used instead.

What is the prognosis for NEC?

NEC affects 2% to 5% of all premature infants. Nearly 8% of all NICU admissions are due to NEC. Infant mortality in cases of NEC range from 10% to 50%. Stage three cases, involving perforation of the intestine, peritonitis and sepsis have a mortality rate close to 100%.

When recognized early and treated aggressively, the prognosis for infants with NEC can be good. Parents should bring babies with abdominal pain, vomiting and diarrhea to their doctors right away for the best outcome.

Are there NEC lawsuits?

Yes, there are baby formula lawsuits claiming premature babies developed NEC after being fed specific Similac and Enfamil formulas. Parents and guardians have filed NEC formula lawsuits against formula manufacturers Abbott Laboratories and Mead Johnson.

Motley Rice attorneys have sought justice and fair compensation for children and families affected by exposure to toxins and dangerous drugs.

Motley Rice has helped parents and children by:

• Representing parents of children with birth defects allegedly caused by medical drugs, including Effexor, Zofran and Zoloft
• Negotiating $305 million settlement to fund lead paint cleanup and abatement efforts in 10 California communities. Lead exposure has a significant impact on children.
• Investigating product liability claims, including cancers caused by consumer goods like hair relaxers.
• Negotiating a $600 million settlement for residents of Flint, Michigan, that resolved legal claims against the state for allegedly causing the contamination of Flint’s water supply with lead and other harmful substances
• Representing hundreds of children allegedly harmed by social media addiction.