Necrotising enterocolitis (NEC)

Necrotising enterocolitis (NEC) happens when some parts of the bowel tissue become inflamed and die. NEC may affect just the inside lining of the bowel or the whole thickness of the bowel wall. It may also affect different parts of the bowel.

NEC is the most common gastro-intestinal emergency in newborn babies. Around 9 in 10 babies with NEC are preterm babies (babies born before 37 weeks of pregnancy).

Babies born with a low birthweight are also more likely to get NEC. The lower the birth weight, the higher the chance of getting NEC.

Around 1 in 3 babies with NEC will die from it. Of the babies that survive NEC, around 1 in 4 will have long term medical problems because of NEC.

Babies with NEC will get specialised care in the neonatal intensive care unit (NICU). You and your baby may need to transfer to a larger hospital if the hospital or birthing unit where your baby is born doesn't have a NICU.

The symptoms of NEC can vary, but they can be divided into gastro-intestinal symptoms and more general symptoms.

The gastro-intestinal symptoms include:

• abdominal distention (a swollen tummy)
• vomiting
• feeding intolerance (your baby's gut will have difficulty absorbing food)
• blood in your baby's stool

The more general symptoms include:

• temperature problems (your baby's body temperature may vary a lot)
• a low heart rate
• apnoea (where your baby may temporarily stop breathing)
• low blood pressure
• lethargy (being tired)

There are a several risk factors that can lead to NEC.

Premature birth is a big risk factor, but NEC can happen in babies who are born on time. Full term babies are most likely to get NEC if they have other congenital medical problems or if they need major surgery on their heart or gut.

Problems with blood flow to the gut caused by some health conditions can also cause NEC.

NEC is also more likely to happen in babies who have been fed. It's less likely to happen in babies who get fluids or nutrition through their veins (intravenous, or IV). However, about 1 in 10 babies with NEC have never been fed before.

Babies who are being fed formula are 6 times more likely to develop NEC than babies who are only fed breast milk.

Premature babies have underdeveloped and delicate digestive systems (guts). This makes their gut very sensitive to changes in blood flow and infection, which means they are more likely to get NEC. Doctors don't know why an individual baby gets NEC.

Giving your baby breast milk rather than formula helps lower their chance of getting NEC. If you have a low breast milk supply, or your milk is taking a while to come in, you can consider using donated breast milk. Ask your baby's doctor for more information about using donor breast milk.

Your baby's doctor might suggest giving probiotic supplements to lower their chance of NEC, but these supplements don't completely stop NEC from happening.

Your doctor might also suggest giving you corticosteroids before the birth, since this can also help reduce the chance of your baby having NEC.

If your healthcare team thinks your baby might have NEC, even when they aren't completely sure, they may suggest stopping your baby's feeds and giving them fluids or nutrition through a vein. This is to help stop the condition from getting worse.

To diagnose NEC, your baby's doctor will examine your baby, do blood tests and order an x-ray of your baby's abdomen (tummy).

Sometimes, it's easy to diagnose NEC. Other times, especially when NEC is just starting, it can be harder to diagnose.

If your baby has NEC, their doctor will stop your baby's feeds and any medicine taken by mouth. Your baby will get fluids or nutrition through a vein (intravenous or IV) instead.

Your baby will also have a tube put into their stomach through their nose or mouth. This tube will help remove air and fluids from their stomach and gut.

A sample of their blood will be taken and sent to the lab to look for infection. Your baby will also need antibiotics that can help prevent a wide range of bacterial infections.

Your baby may need to be put on a breathing machine (ventilator) if they are very unwell, and morphine may be given to help control pain. A paediatric surgeon will examine your baby to see if they need surgery.

For more information about NEC and its symptoms, diagnosis and treatment visit The Royal Women's Hospital page on NEC.

Miracle Babies Foundation has a 24-hour family support helpline, called NurtureLine 1300 622 243 (1300 MBABIES).

Read more on donor breast milk and milk banks.