NEC Education:
Understanding Necrotizing Enterocolitis

A newborn infant with its hands in the shape of a heart.

Note: It’s important for mothers to know that they did nothing wrong. Necrotizing enterocolitis (NEC) can develop for many reasons, even when parents and healthcare providers are doing everything they can to protect the baby’s health. Whether you choose to breastfeed or not, it’s possible for a baby to be diagnosed with NEC. This is an incredibly heartbreaking condition, and despite our best efforts, it can be difficult to prevent. Please know that you are not alone, and this is not a reflection of your care or choices.

What is Necrotizing Enterocolitis (NEC)?

Necrotizing enterocolitis (NEC) is a severe gastrointestinal disorder primarily affecting premature infants, with the potential to be life-threatening. It is caused by inflammation of the intestinal tissue. NEC affects about 1 in 1,000 premature babies and 1 in 10,000 full-term infants. The infection weakens the intestinal walls, which can eventually rupture, allowing bacteria to leak into the abdomen and cause serious infections or even death if not treated promptly. The condition can lead to blood poisoning, widespread infection, and in severe cases, destruction of the intestinal wall.

Infections from NEC often require surgery, which can result in further gastrointestinal issues like Short Bowel Syndrome (SBS). SBS involves the surgical removal of parts of the intestine, reducing nutrient absorption and increasing health risks for the infant.

  • Abdominal pain, abdominal swelling
  • Changes in heart rate, blood pressure, body temperature and breathing
  • Diarrhea with bloody stool
  • Green or yellow vomit
  • Lethargy
  • Refusing to eat and lack of weight gain

  • Babies born prematurely (before the 37th week of pregnancy), those fed through enteral nutrition (with a feeding tube in the stomach), and babies weighing less than 5 ½ pounds at birth are at higher risk for developing necrotizing enterocolitis. However, any full-term baby can be at risk of developing NEC. The risk is higher when the baby is not fed their mother’s milk, which helps their body develop faster and helps fight infection.

  1. Classic: The most common type of NEC. Typically affects infants born before 28 weeks of pregnancy. Classic NEC usually develops three to six weeks after birth, often occurring unexpectedly in an otherwise stable and healthy baby.
  2. Transfusion-associated: An infant may require a blood transfusion to treat anemia (a deficiency of red blood cells). Approximately 1 in 3 premature babies develop NEC within three days of receiving a blood transfusion.
  3. Atypical: A rare occurrence when an infant develops NEC in the first week of life or before the first feeding.
  4. Term infant: Full-term babies who develop NEC typically have an underlying birth defect. Potential causes include congenital heart conditions, gastroschisis (a condition where the intestines develop outside the body), and low oxygen levels at birth.

  1. Classic: The most common type of NEC. Typically affects infants born before 28 weeks of pregnancy. Classic NEC usually develops three to six weeks after birth, often occurring unexpectedly in an otherwise stable and healthy baby.
  2. Transfusion-associated: An infant may require a blood transfusion to treat anemia (a deficiency of red blood cells). Approximately 1 in 3 premature babies develop NEC within three days of receiving a blood transfusion.
  3. Atypical: A rare occurrence when an infant develops NEC in the first week of life or before the first feeding.
  4. Term infant: Full-term babies who develop NEC typically have an underlying birth defect. Potential causes include congenital heart conditions, gastroschisis (a condition where the intestines develop outside the body), and low oxygen levels at birth.

Treatment will begin immediately when NEC is suspected and/or diagnosed. Here are some of the possible treatments you could expect:

  • Temporarily stopping all feedings
  • Nasogastric or orogastric drainage
  • IV fluids for fluid replacement and nutrition
  • Antibiotics for infection
  • Frequent exams and X-rays
  • Surgery in severe cases

  • The exact cause of necrotizing enterocolitis in infants remains unknown. However, it is understood that infants have underdeveloped immune and digestive systems. Since the immune system plays a crucial role in fighting infections, and the digestive system is still maturing, premature babies have difficulty fighting infections. Also, oxygen-carrying blood has a more difficult time reaching the intestines in premature babies. This leads to poor blood flow or oxygen to the intestine at birth.

Necrotizing enterocolitis (NEC) has no direct cause, making it difficult to pinpoint specific ways to fully prevent it. However, several steps may help reduce the risk of your baby developing NEC:

  1. Breast Milk: Feeding your baby breast milk, whether that be directly from the mother or a donor, can lower the risk of NEC. Breast milk contains beneficial nutrients and antibodies that help support your baby's developing immune system and help them fight infection.
  2. Corticosteroids for Preterm Births: If you are at risk of giving birth to a preterm baby, your healthcare provider may recommend corticosteroids. These prescription medications help reduce inflammation in your body and promote faster lung development in premature babies. This can decrease the likelihood of complications, including NEC.

Although there is no guaranteed way to prevent NEC, following these guidelines can help lower your baby's risk, especially if born prematurely. Always consult with your healthcare provider for personalized advice and recommendations.

The long-term outlook for babies diagnosed with Necrotizing Enterocolitis (NEC) varies depending on the severity of their condition and how quickly treatment is initiated. In more severe cases, surgery may be necessary to remove damaged portions of the intestines. While some babies recover fully, others may experience long-term complications, such as digestive issues or developmental delays. In many cases, these complications improve over time, but for some, they can persist into adulthood.

Early recognition and immediate treatment are crucial. The expertise of medical professionals can make all the difference in managing NEC effectively. As you navigate this challenging journey, finding a skilled doctor whom you trust is essential. You will likely work closely with them to monitor your baby's recovery and long-term health. Don’t hesitate to ask your doctor for referrals to specialists who can offer additional support and ensure your baby receives all the care they need. It’s important to remember that you are not alone in this, and with the proper medical guidance, there is hope for your baby’s healthy future.

When your newborn is diagnosed with NEC, it can be overwhelming, and it's difficult to know what questions to ask in the moment. With so much running through your mind, you may forget important details or uncertainties. To help guide your conversation with your doctor, here are some key questions you can ask during your visit:

  1. How severe is my child's situation?
  2. What treatments will be needed?
    • Why?
  3. What medications will be needed?
    • What do the medications treat specifically?
  4. What can I expect in the future?
  5. Can my child be treated in any alternative ways?
  6. What testing will be needed? What will the results show?
  7. What happens if my child does not do the treatment/procedure?
    • What happens if they don’t take the medication?
  8. When will the next appointment be?
  9. How can I contact you (the doctor) after office hours?
    • Is there a number I can reach for quick questions?
    • Is there an emergency number?