NEC FAQs: Everything You Need to Know About NEC

May 17th is NEC Awareness Day, an important opportunity to have much-needed conversations about the often-devastating intestinal disease that affects vulnerable premature infants in their first few weeks of life. In order to spread awareness of NEC and help parents and non-parents alike understand what it is and the kind of impact it can have, this article offers an overview of the most frequently asked questions about NEC. 

Please note that we are not health care professionals and that this information is strictly informational, not to be used as a substitute for the purposes of medical advice, diagnosis, or treatment. For professional advice, please seek the counsel of your physician and qualified healthcare providers.

What Is NEC?

NEC stands for necrotizing enterocolitis, and it’s a serious gastrointestinal issue mostly affecting premature babies within two to six weeks after birth. With NEC, the intestinal tissues become inflamed and die, potentially forming a hole in the baby’s intestine. This allows bacteria to leak into the abdomen or bloodstream. When left untreated, NEC can lead to serious infection and even death.

NEC Symptoms in Newborns and Premature Babies

Symptoms of NEC differ from baby to baby. They can appear over the course of a few days or quite suddenly in otherwise healthy babies. Symptoms include the following:

• Abdominal swelling and bloating
• Abdominal pain
• Bloody stool or diarrhea
• Green or yellow stomach fluid or vomit
• Issues with heart rate, blood pressure, breathing, and body temperature
• Lethargy or sluggishness
• Refusing to eat
• Lack of weight gain
• Feedings staying in the stomach and not moving through the intestines

Note that other digestive conditions can produce similar symptoms to NEC, so it is important to see a doctor for a definitive diagnosis. If your baby is in the NICU, their medical team will be aware of NEC and be on the lookout for its symptoms.

Does Baby Formula Cause NEC?

Studies have shown a link between NEC and premature babies being fed baby formula instead of breast milk. Most recently, an October 2021 study published in the journal Pediatrics and Child Health demonstrated that neonatal babies fed with formula had an increased risk of NEC compared to those fed with pasteurized donor human milk (PDHM). The researchers concluded that their findings “support the current literature that infants who receive formula are at increased risk for transfer for suspected NEC compared to those who receive PDHM.”

While multiple studies have pointed to the fact that formula increases the risk of premature babies getting NEC, scientists haven’t been able to identify a specific reason why this is the case. A working theory suggests that the intestines of premature infants aren’t able to protect themselves as well as those of fully developed infants. Human milk may add protection, reducing inflammation and bacterial invasion, they hypothesize, but cow’s milk could actually encourage the growth of unhealthy bacteria.

Which Baby Formulas Are Problematic?

The baby formulas that cause the most concern about NEC are those based on cow’s milk such as Enfamil and Similac. Unfortunately, these brands do not list NEC as a potential side effect of their product or offer any warnings. As such, there are active lawsuits being brought against their manufacturers, Mead Johnson and Abbott Laboratories, filed by parents whose families were affected by NEC after using Enfamil and Similac products. The lawsuits argue that the manufacturers had a responsibility to communicate the risks of their product and failed to do so. Anybody who has been affected may be eligible to come forward to participate in the legal proceedings.

How to Tell If Your Baby Might Have NEC?

If your baby was born premature, approximately two to six weeks have passed since their birth, and you notice any of the following, it may be indicative that they could potentially have NEC. If you are concerned, it is recommended to speak to a doctor who will be able to offer a proper diagnosis.

• A swollen, red, or tender belly
• Difficulties feeding
• Food staying in the stomach longer than expected
• Constipation
• Diarrhea
• Dark or bloody stools
• Low activity levels or lethargy
• A low or unstable body temperature
• Green vomit
• Trouble breathing
• Slowed heart rate
• Low blood pressure

Can Full-Term Babies Get NEC?

Science shows that NEC is much rarer in full-term babies than it is in premature infants, with about 85% of cases of NEC occurring in babies born at under 35 weeks. The incidence of NEC in very low birth weight (VLBC) premature babies is 1 in 1,000, compared to about 1 in 20,000 in full-term infants. So while it is possible for full-term babies to get NEC, it is much less likely.

Do Babies Recover From NEC?

Approximately 75% of babies with NEC recover. There are multiple ways to treat NEC, both including and excluding surgery.

In less severe cases, the baby can be treated without surgery. This requires the use of a nasogastric tube to prevent the baby’s stomach from filling with air. The tube is kept until the baby can handle regular feedings. They also receive IV fluids for hydration and nutrients and to keep their blood chemicals and blood pressure normal. They are given antibiotics intravenously for about 10 to 14 days to fight infection, during which they are monitored closely. They may need blood pressure medicine during this time.

In more serious cases, NEC can be treated surgically to remove any parts of the bowel that have died or been perforated. 

Once the baby has responded to treatment, they will be able to get back to a regular feeding schedule after a week or two. After NEC treatment, is recommended to feed babies with breast milk which is easily digested and supports the growth of healthy intestinal bacteria and immune function. 

Most babies who are treated for NEC make a full recovery and have no further feeding problems. In some cases, however, the bowel narrows or scars, leading to future blockages. If that is the case, more surgery might be needed.

For babies who had surgery to treat their NEC, there may be future issues absorbing nutrients, which can require having nutrition delivered directly into a vein until the intestine heals well enough to tolerate having normal feedings.

Is NEC Infectious to Other Babies?

NEC itself is not viral or bacterial in nature, meaning that it cannot be spread infectiously from one baby to another. However, the bacteria that plays a role in exacerbating NEC can spread, which is why NICUs must maintain very high standards of cleanliness and sterilization in order to help prevent the spread of infection.  

Conclusion

NEC can be a devastating disease for premature babies and their families. While it is often treatable, it can lead to tremendous suffering, loss, and even death. In honor of NEC Awareness Day and beyond, we encourage people to educate themselves about NEC and its causes.