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 Federici, 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.


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. 


During the times of symptoms and check-ups there would be memories of this event in the NICU and it is important to acknowledge this and allow yourself to adjust to your feelings and know that these symptoms can be taken to your health care provider and treated. You are the greatest advocate for your child.

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].