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Genetic and Rare Diseases Information Center (GARD)

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Necrotizing enterocolitis

Other Names for this Disease
  • Enterocolitis, necrotizing
  • NEC
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Your 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?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is the long-term outlook and life expectancy for individuals with necrotizing enterocolitis?

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%.[1]

Of the infants who survive, about 50% develop a long-term complication. 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. The neonatal gut typically grows and adapts over time, but this growth may take up to 2 years. Babies who can never successfully tube feed and/or who develop life-threatening liver disease may need organ transplantation.[1]

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.[1]

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.[2] 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.[3]

We were unable to locate information about the long-term effects or life expectancy associated with neonatal NEC in individuals who are in their teens or in adulthood.
Last updated: 2/5/2013

  • Shelley C Springer. Necrotizing Enterocolitis. Medscape Reference. January 24, 2012; Accessed 2/4/2013.
  • 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.
  • Patel JC, Tepas JJ 3rd, Huffman SD, Evans JS. Neonatal necrotizing enterocolitis: the long-term perspective. Am Surg. June 1998; 64(6):575-579.