Frequently Asked Questions (FAQs) about Necrotising Enterocolitis (NEC)

What is necrotising enterocolitis?

This is a serious condition leading to infection of the bowel. It affects some very low birth weight babies and sometimes babies born at term. NEC usually occurs between three to 12 days after birth (though later in preterm babies) and can affect any portion of the bowel. Damage to the bowel can lead to a hole (perforation), which allows the bacteria in the bowel to leak out and cause a more serious infection.

What causes necrotising enterocolitis?

There isn’t one single cause but a number of factors have been identified in preterm babies:

• Poor blood flowing to the lining of the bowel
• Babies born before term have immaturity of the bowel
• Preterm babies are more likely to get infections and are not able to fight this as well as babies born at term

How do you know that my baby has this condition?

In the early stages your baby may appear slightly unwell but as the NEC progresses other things may occur:

• Swelling and tenderness of the tummy
• Blood in the stools, or your baby stops passing stools
• Green vomiting
• Signs of infection such as sleepiness
• High or low temperature
• Redness of the skin over the tummy

It may become necessary to support your baby with a ventilator if he/she does not already need support from a breathing machine.

The doctors may suspect that your baby has NEC from these signs but they will need to take x rays to help with the diagnosis, which may show small bubbles in the wall of the bowel. They will also need to take some blood samples to test for infection.

How is this condition treated?

In many cases, NEC can be treated without surgery. The bowel is rested by stopping feeds and giving intravenous food. A course of antibiotics (usually seven to 10 days) will be given to treat the infection.

However, if a hole (perforation) in the bowel has occurred or your baby is not responding to the treatment it may be necessary to perform surgery. This will be carried out under a general anaesthetic. Occasionally a soft tube called a drain can be placed instead of performing surgery. Your surgeon will discuss which is thought to be best for your baby at the time.

When the surgeon operates he/she will discover how much of the bowel is affected and may need to remove those areas that are severely affected. A temporary stoma (opening from the bowel onto the wall of the tummy) may be formed to allow the bowel time to recover and heal. This will be closed at a later date.

How do I care for my baby with a stoma?

If your baby has had a stoma formed, the neonatal nurses will help you learn how to change the stoma bag. A stoma nurse specialist will also visit you within a few days of the operation to provide additional support.

What happens after the surgery?

Initially your baby will be nursed on a ventilator to help him/her overcome the operation. Pain relief will be given intravenously to ensure that your baby is comfortable. As soon as your baby is stable and the doctors decide that he/she can breathe without help, the ventilator will be taken away.

Your baby will receive food intravenously until the bowel has recovered. This type of food is called parenteral nutrition (PN) and is an alternative way of providing food while your baby cannot have milk either by mouth or tube. PN contains glucose for energy, protein for growth, fat for energy stores, vitamins to keep the body healthy and minerals to help with healing, so your baby will continue to grow and develop normally.

The PN will be given via a small tube introduced into one of your baby’s veins by an experienced doctor. Milk feeding will be slowly re-introduced with the amount increasing as your baby tolerates it. You will be encouraged to take over the care of your baby and re-establish breast/bottle feeding.

When can we go back to our local hospital?

If your baby was admitted to the NICU from another hospital, he/she will be transferred back to your local unit once the surgeons and doctors are happy that the bowel is recovering well. This will usually be when your baby is tolerating at least half of their milk feeds.