Necrotizing Enterocolitis (NEC)



Necrotizing Enterocolitis: Long Term Complications
Author(s): Catalina Bazacliu*, Josef Neu

NEC remains a complication of prematurity with high mortality and morbidity. Common complications of NEC include neurodevelopmental delay, FTT, gastrointestinal problems such as strictures, adhesions, cholestasis, SBS with or without IF that can be difficult to manage. Those infants would benefit from a multidisciplinary approach and careful follow up and assessment, with early intervention as a goal. More studies with a longer follow-up period are needed to better understand the later co-morbidities of those patients.

Long Term Outcome of Infants with NEC
Author(s):  Silvana Federicic, Lorenzo De Biagi* 

Neurodevelopmental outcomes of patients after NEC recovery have not been widely reported. Infants with NEC is a population of patients at high risk for adverse neurodevelopmental outcomes whose cause can be multifactorial and linked to perinatal events, severity of disease, surgical treatment and its complications and hospitalization. Understanding the morbidity of NEC with a longterm follow-up would aid neonatologists and pediatric surgeons to make informed decisions in providing care for these patients. Further research on this topic is needed.

Long-term follow-up of Patients with Necrotizing Enterocolitis.
Stanford A, Upperman JS, Boyle P, Schall L, Ojimba JI, Ford HR. J Pediatr Surg. July 2002; 37(7):1048-1050.

“Infants with stage II and III NEC who are treated operatively or nonoperatively have a favorable long-term outcome.”

Neonatal necrotizing enterocolitis: the long-term perspective.
Patel JC, Tepas JJ 3rd, Huffman SD, Evans JS. Am Surg. June 1998; 64(6):575-579.

Infants with stage II and III NEC who are treated operatively or nonoperatively have a favorable long-term outcome.


Necrotizing enterocolitis or NEC, is a serious intestinal disease that can happen to  premature babies while in the NICU. It happens when tissue in the small or large intestine is injured or inflamed. When this disease attacks intestinal tissue it can lead to damage and can even develop into a hole (perforation) in the intestinal wall making it difficult to protect itself from bacteria passing into the bloodstream. Waste then passes into the baby's abdomen and can make the baby very sick. The injured intestine, or sections of it, may die and need to be surgically removed. Surgery may require a colostomy, which may be able to be reversed at a later time.

There is no known cause of necrotizing enterocolitis. There are factors that play a part in its development, such as underdeveloped intestine, little oxygen or blood flow at birth or an injury, heavy growth of viral or bacterial to affected area.

Some babies that were diagnosed with NEC and recover normally don’t have problems but some may have some issues later in life, in particular if they had surgery and had some of their intestine removed. These problems could show as: Malabsorption of nutrients or Short Bowel (too little bowel to absorb nutrients needed), Scarring and narrowing of the bowel causing "obstruction" or blockage of the bowel and scarring can be linked to pain in affected area.   When there is a problem constipation and absorption of nutrients growth can be affected and also be linked to iron deficiency and other vitamin deficiencies. Anaemia and Iron deficiency should be reviewed regularly as well. Also, if there was surgery there may be a scare left and this may be something that a young person doesn’t like to be seen so support in body image is helpful. 

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, but it can result in persistent loose stools or frequent bowel movements.

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. It is important to remind GP’s and the medical profession that NEC was an event in the first year of life and to be alert to your child’s gastrointestinal issue’s and any vitamin or mineral deficiency that may be showing itself in symptoms or blood work. This detail could help improve chances of better school performance, growth and development especially during school years when puberty is starting. The best possible care in health check-ups will help during this time. As tummy aches can be a common thing for children this symptom should not be disregarded or not taken seriously because this could be related to the original problem of NEC.


Ask your doctor at regular check-ups for your teenager of any iron or vitamin deficiency. Check with your doctor how often these checks should be undertaken.

Signs and symptoms are related to the malnutrition resulting from inability to absorb nutrients, vitamins and minerals. In general, the following symptoms may occur at any time but exacerbations indicate lack of adequate nutritional management.
Things your teenager might notice:

  • Pale, greasy stools
  • Particularly foul-smelling stools
  • Diarrhea-worsening
  • Edema
  • Weight loss
  • Fatigue
  • Lethargy
  • Blood in stools
  • Increasing abdominal distention
  • Slow growth

Useful Links:

World NEC Awareness Day takes place on May 17th. 

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Disclaimer: This publication by Miracle Babies Foundation is intended solely for general education and assistance and it is it is not medical advice or a healthcare recommendation. It should not be used for the purpose of medical diagnosis or treatment for any individual condition. This publication has been developed by our Parent Advisory Team (all who are parents of premature and sick babies) and has been reviewed and approved by a Clinical Advisory Team. This publication is not a substitute for professional medical advice. Miracle Babies Foundation recommends that professional medical advice and services be sought out from a qualified healthcare provider familiar with your personal circumstances.To the extent permitted by law, Miracle Babies Foundation excludes and disclaims any liability of any kind (directly or indirectly arising) to any reader of this publication who acts or does not act in reliance wholly or partly on the content of this general publication. If you would like to provide any feedback on the information please email [email protected].