One page summary: Necrotizing enterocolitis (NEC)

In two sentences

Necrotizing enterocolitis, or NEC, is a serious illness in which part of a baby's bowel becomes inflamed and the tissue can die. It happens mostly in babies born very early. ¹

It can start with signs that look minor: a belly that is a bit full, a feed that was not tolerated, a baby who seems slightly off. It can then progress within hours. That is why NICU teams react quickly to small changes in feeding and belly appearance in a very preterm baby. ¹

The numbers, with their sources

• Who it affects. Mostly babies born very early. A review reported that necrotizing enterocolitis affects about 7 percent of infants with a birth weight between 500 and 1,500 grams ¹
• How serious. It is one of the most serious gastrointestinal emergencies of the newborn period, with substantial mortality among those who need surgery ¹
• What protects. Feeding with human milk is associated with a lower rate of necrotizing enterocolitis than formula feeding ¹
• How it is staged. The modified Bell staging system describes suspected, definite and advanced disease, and it guides treatment ¹
• The diagnostic sign on X-ray. Gas within the wall of the bowel, called pneumatosis intestinalis, which is the characteristic finding ¹
• The emergency finding. Free air outside the bowel on X-ray, meaning a perforation, which requires surgery ¹

What to do this week

1. Ask what stage of NEC your baby has and what would change it.
2. Ask what the X-rays show and how often they are being repeated.
3. Ask whether surgery is being considered and what would trigger it.
4. Ask about human milk, including donor milk if your own supply is not established. ¹
5. Ask when feeds will restart and how they will be advanced.
6. Ask about stricture, and what signs to report after recovery.
7. Ask for developmental follow-up to be arranged before discharge.

Questions to take with you

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the neonatologist

• What stage is this, and is it advancing?
• What do the X-rays show, and how often are they repeated?
• What would make you call the surgeons?
• How long will feeds be stopped?
• Can my baby have human milk, including donor milk?

For the surgeon

• How much bowel is affected, and how much would be removed?
• Will there be a stoma, and when would it be reversed?
• What is the risk of short bowel syndrome?
• What should we watch for after recovery?

For the feeding team

• How will feeds be restarted and advanced?
• What are the signs of a stricture?
• How do we prevent feeding aversion after this long without oral feeding?

You can also build a printable list with the question generator.

Where to read more

The full page on this condition covers how it happens, causes split into what happens even with perfect care and what is associated with gaps in care, signs by age, diagnosis, treatment, outlook, daily life and lifetime cost.

Read the full page on Necrotizing enterocolitis (NEC)

Related pages are listed at the bottom of it, including the events that can lead to this condition and the guides that cover therapy, school and money.