Necrotizing Enterocolitis: A Guide for Preemie Parents

Necrotizing enterocolitis is a gastrointestinal disease primarily affecting premature babies. Here, we offer a guide for preemie parents on all things NEC.

Parents who have premature (preemie) babies should be aware of a condition called necrotizing enterocolitis (nek-roh-TIE-zing en-ter-oh-coh-LIE-tis). Necrotizing enterocolitis, or NEC, is one of the most common gastrointestinal diseases affecting preemie babies. Unfortunately, it is not a disease that is often discussed with new parents, even in the neonatal intensive care unit (NICU).

That’s why Birth Injury Guide has created this helpful and simple guide explaining what NEC is and how it could affect your baby. When it comes to healthcare, knowledge is power. The more information you have, the better equipped you are to make important decisions for your child.

What is Necrotizing Enterocolitis?

NEC is a gastrointestinal disease that primarily affects premature babies. It is most common in preemies who are fed infant formula instead of breast milk. Because a preemie’s system is not fully developed, formula is not as easily digested. As a result, bacteria can build up in the intestines causing inflammation and infection.

In some cases, the inflammation and infection leads to a bowel perforation, which causes germs to leak into the abdomen. This can lead to serious infections or death.

What Causes NEC?

There is no consistent documented cause of NEC. However, experts believe that there are a few things that may contribute to it developing. These include:

  • Underdeveloped intestines and gastrointestinal tract (common in preemies)
  • Too little oxygen to the intestines during labor and delivery
  • Injury to the lining of the intestines
  • Bacterial growth that erodes the intestinal wall
  • Bacterial or viral infection in the intestines
  • Feeding a strictly cow’s milk-based formula diet

Research shows that babies fed cow’s milk-based formula have a much higher risk of developing NEC than babies fed breast milk. Experts strongly recommend that premature babies be fed only human milk – from the mother or a donor – in order to reduce the risk of NEC.

Who is At Risk?

Experts estimate that one in every 2,000 to 4,000 babies has NEC. It can develop in full-term babies, but it is rare. Premature babies are definitely more at risk of developing NEC. There are some additional risk factors that could make your baby even more at risk, such as:

  • Being fed infant formula
  • Having oxygen deprivation at birth
  • Having too many red blood cells
  • Existing gastrointestinal infections
  • Being serious ill or requiring a blood transfusion

What are the Symptoms of NEC?

The symptoms of NEC can vary from baby to baby, but there are some general things that parents should be aware of and report to their doctor. These symptoms include:

  • Bloating or swelling in the belly
  • Constipation
  • Diarrhea
  • Blood in the stool
  • Difficulty breathing
  • Low heart rate
  • Low body temperature
  • Vomit containing bile
  • Apnea (breathing pauses periodically)
  • Bradycardia (slow heart rate)

If your baby is still in NICU, their doctors and nursing staff should recognize any of these symptoms. However, if you notice symptoms, changes, or worsening symptoms, make sure to let your doctor know right away.

Diagnosing and Treating NEC

To diagnose NEC, doctors will perform a thorough examination and will evaluate the baby’s symptoms. Next, the doctor will likely order an X-ray of the baby’s abdomen. An X-ray can show the intestines and may show areas with tissue death or a bowel perforation.

Next, your doctor may withdraw some fluid from the baby’s abdomen to test it for bacteria. To do this, a long needle is inserted through the belly into the abdomen, and fluid is collected. The presence of fluid can indicate NEC or a bowel perforation.

If your baby is diagnosed with NEC, treatment should begin immediately. Treatment may include:

  • Stopping all feedings (temporarily)
  • Orogastric or nasogastric drainage (a tube in the nose or mouth into the stomach drains fluid and air)
  • IV fluids to replace feedings and provide nutrition
  • Antibiotics to prevent or treat infection
  • Surgery if there is a bowel perforation

For mild or moderate cases of NEC, treatment is usually effective at resolving symptoms within a few weeks. If surgery is required, recovery may take longer. Also, severe cases of NEC may require more invasive treatment, which also has risks.

If your baby needs surgery, the surgeon will remove dead or damaged intestinal tissue. Then, the intestines can be sewn back together. If the intestinal damage is too severe, an ostomy bag may be required. An ostomy is an opening into the abdomen that allows stool to safely exit the body. Ostomy’s are generally temporary until the intestines are healed and the opening can be closed.

Prognosis for Baby’s with Necrotizing Enterocolitis

When NEC is diagnosed and treated immediately, the prognosis for babies is generally very good. Most babies recover fully without any additional health problems. Of course, there are possible long-term complications of NEC, such as narrowing of the intestines, but those are very dependent on the severity of NEC and the baby’s response to treatment.

It is totally normal and reasonable for you to be worried about your baby’s health if they have NEC. What is most important is that you understand the disease and how to manage it. The best thing you can do for your baby is to report any symptoms or concerns to your doctor right away. Also, whenever possible, feed your baby breast milk. If you are unable to breast feed, consider using a donor milk program through your hospital. A strictly breast milk diet reduces the risk of NEC substantially.  

Meagan Cline

Written By Meagan Cline

Meagan Cline is a professional legal researcher and writer. She lends her expertise to the team at Birth Injury Guide to provide up-to-date and relevant content that clients can count on.