National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Necrotizing enterocolitis


Other Names:
Enterocolitis, necrotizing; NEC
Categories:
Necrotizing enterocolitis (NEC) is a condition characterized by variable injury or damage to the intestinal tract, causing death of intestinal tissue.[1][2] The condition most often occurs in premature newborns, but it may also occur in term or near-term babies.[2] Signs and symptoms may include abdominal distension, bloody stools, vomiting bile-stained fluid, and pneumatosis intestinalis (gas in the bowel wall) identified on abdominal x-ray. Affected infants occasionally have temperature instability, lethargy, or other findings of sepsis.[1][2] The exact cause of NEC is unknown. Treatment involves stopping feedings, passing a small tube into the stomach to relieve gas, and giving intravenous fluids and antibiotics.[1][3] Surgery may be needed if there is perforated or necrotic (dead) bowel tissue.[3] About 60-80% of affected newborns survive the condition.[1]
Last updated: 2/4/2013
The survival of infants with necrotizing enterocolitis (NEC) has steadily improved since the late 20th century. The mortality rate in NEC ranges from 10% to more than 50% in infants who weigh less than 1500 grams (depending on the severity) compared with a mortality rate of 0-20% in babies who weigh more than 2500 grams. Extremely premature infants (1000 grams) are still particularly vulnerable, with reported mortality rates of 40-100%.[2]

Of the infants who survive, about 50% develop a long-term complication and 10% of the infants will have late gastrointestinal problems, but the remaining 50% do not have any long-term sequelae.[2][4] The 2 most common complications are intestinal stricture and short gut syndrome. Intestinal stricture occurs when an area of the intestine heals with scarring that impinges on the inside of the bowel. It is most common in infants treated without surgery. Short gut syndrome is the most serious post-operative complication in NEC, occurring in as many as 23% after resection. It is a malabsorption syndrome resulting from removing excessive or critical portions of the small bowel.[2] The neonatal gut typically grows and adapts over time, but this growth may take up to 2 years, but it can result in persistent loose stools or frequent bowel movements.[2][4]  Babies who can never successfully tube feed and/or who develop life-threatening liver disease may need organ transplantation.[2]

Most of the babies who have not had extensive intestinal resection have normal gastrointestinal function at 1 to 10 years of age.[4] 

Recurrent NEC is an uncommon complication (occurring in about 4-6%), but it can occur after either operative or nonoperative management of NEC. Infants who survive NEC are also at increased risk for neurodevelopmental problems; however, these problems may result from underlying prematurity rather than from NEC.[2]

In a 2002 study of children who formerly had NEC (ranging from 5-10 years of age), the authors found that most children were enrolled in school full time, suggesting that children can expect a relatively favorable long-term outcome.[5] A 1998 study looking at the long-term outlook for affected individuals reported that several years after having NEC, most long-term survivors achieved a normal quality of life with no persistent health problems.[6]
Last updated: 2/5/2013

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Necrotizing enterocolitis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Organizations Providing General Support

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Necrotizing enterocolitis. Click on the link to view a sample search on this topic.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • I find all kinds of information about infants and NEC but cannot find any information about children in their late teens and into adulthood. I have identical twin sons now age 19. One twin developed NEC and the other did not. He asks many questions about his prognosis as an adult including life expectancy. Do you have any information I can give him or some internet sources that may answer questions for him that are not infant or child related? See answer


  1. Arthur E. Kopelman. Necrotizing Enterocolitis (NEC). Merck Manuals. February 2009; http://www.merckmanuals.com/home/childrens_health_issues/problems_in_newborns/necrotizing_enterocolitis_nec.html?qt=Necrotizing enterocolitis&alt=sh. Accessed 2/4/2013.
  2. Shelley C Springer. Necrotizing Enterocolitis. Medscape Reference. January 24, 2012; http://emedicine.medscape.com/article/977956-overview. Accessed 2/4/2013.
  3. Todd Eisner. Necrotizing enterocolitis. MedlinePlus. May 16, 2011; http://www.nlm.nih.gov/medlineplus/ency/article/001148.htm. Accessed 2/4/2013.
  4. Schanler RJ. Management of necrotizing enterocolitis in newborns. UpToDate. July, 2016; http://www.uptodate.com/contents/management-of-necrotizing-enterocolitis-in-newborns.
  5. Stanford A, Upperman JS, Boyle P, Schall L, Ojimba JI, Ford HR. Long-term follow-up of patients with necrotizing enterocolitis. J Pediatr Surg. July 2002; 37(7):1048-1050.
  6. Patel JC, Tepas JJ 3rd, Huffman SD, Evans JS. Neonatal necrotizing enterocolitis: the long-term perspective. Am Surg. June 1998; 64(6):575-579.