Long term outcomes

If NEC destroyed a large proportion of the intestines, the baby may suffer long-term damage to various parts of the body. Massive bowel resection for necrotizing enterocolitis is the most common cause of short bowel syndrome (SBS), which occurs when there is not enough of the small bowel to absorb all the nutrients in food. This can necessitate long-term parenteral nutrition (TPN) and also lead to liver damage. In rare situations, this can mean that a transplant is needed.  The only study1 of babies born in the UK and Ireland who needed surgery for NEC found that, after one year, 12 patients still needed TPN,  1 required a liver transplant and 3 had not left hospital.

Clinicians are increasingly aware of the neurodevelopmental impairment in children who had severe NEC. However, there is not a large body of research in this area. This is partly due to the lack of reliable shared data, and there is also a need for more parents to participate in research and to bring their children to follow-up appointments.

In the UK, EPICure2 is a series of studies of survival and later health among babies and young people who were born at extremely low gestations (from 22 to 26 weeks). In studying NEC survivors3,they found that 20% had cerebral palsy; 35% had low developmental scores and there was a 60% increase in the rate of neuro-impairment.

In the United States, a recent research paper4 included the following data on complications and outcomes in patients with NEC, which was sourced from multiple studies:

Type of complication or outcome Incidence
Recurrence of NEC 4-10%
Mortality 15-63%
Intestinal strictures 12-35%
Stoma complications 50%
Short bowel syndrome 20-35%
Neurodevelopmental impairment 30-50%
Growth delay 10%

Support & More Information

These organisations are dedicated to NEC, were set up by members of families affected by the disease and have been represented at SIGNEC meetings.
These organisations  provide support for families affected by conditions that can result from NEC.


  • 1. BAPS-CASS National Study on Surgical Necrotizing Enterocolitis, Dr Amit Gupta, SIGNEC, October 2017
  • 2. EPICURE
  • 3. Prof. Neil Marlow DM FMESci, The contribution of NEC to the burden of long term impairment after preterm birth, SIGNEC, September 2014
  • 4. Necrotizing enterocolitis: new insights into pathogenesis and mechanisms. Diego F. Niño, Chhinder P. Sodhi, and David J. Hackam
  • doi:10.1038/nrgastro.2016.119 Published online 18 August 2016
Disclaimer: This information has been produced using contributions to meetings of the Special Interest Group in Necrotizing Enterocolitis (SIGNEC). It is intended to help parents and their families to understand this serious condition and ways in which it is treated. It is not a substitute for discussion with those responsible for the care of a baby as every baby is unique. The ultimate judgement regarding a particular clinical procedure or treatment must be made by the clinician in the light of the clinical data presented and the diagnostic or treatment options available. While all reasonable efforts have been made to check the contents of external sites, links are not an endorsement of those sites.