Necrotizing enterocolitis (NEC) is a rare complication affecting the intestines (also called bowel or gut), mainly in premature babies. NEC causes inflammation (irritation and swelling) and infection of the intestines. The intestines can become weak, and sometimes, parts of the intestine tissue can die. Necrotizing is when soft tissue in the body dies, and enterocolitis means bowel inflammation. NEC can cause the lining and the wall of the intestine to become so weak that a hole can form (called a perforation), allowing air and waste products to leak into the abdomen. If waste products that are supposed to be in the intestine leak into the abdomen, this can cause infection.

NEC is rare. When NEC does happen, it almost always occurs in a premature baby. Term babies with certain medical complications can also get NEC, but this is very rare. The more premature a baby is, the higher the chance of having NEC. Even so, only about 5% of babies born less than 1500 grams will get NEC.

Nobody knows exactly why NEC happens. Experts think there may be several factors that lead to NEC: • Premature babies have an immature immune system that may not be able to fight infection • Babies who get NEC may have had a period of time when their intestines did not get enough blood flow or oxygen (such as during a pregnancy or delivery complication) • Unhealthy bacteria in the intestines may grow too fast and cause infection

Not all cases of NEC can be prevented. It is nobody’s fault if a baby gets NEC. There are some things we can do to keep a baby’s digestive system as healthy as possible. For example, feeding babies human milk whenever possible and using a specific feeding plan for tiny babies (sometimes called a feeding protocol) may help lower the chance of NEC. Some research shows that certain probiotics may help lessen the chance of NEC.

The NICU team is always watching for any sign of NEC. Some signs and symptoms of NEC include: • Abdominal distension (swollen, large belly) • A belly that has an abnormal colour (red, grey or blue) • Abdominal pain • Blood in a baby’s stool • Vomiting that may appear green or contain blood • Lethargy, or a baby who is limp and not moving very much • An increase in “spells” (when a baby forgets to breathe) or a baby who needs more oxygen than usual • Temperature changes If the NICU team suspects NEC, they will arrange for urgent tests, including: • X-rays and sometimes ultrasound of the abdomen • Blood tests to check for signs of infection and inflammation • Sometimes, a test to check for blood in the stool may be helpful

Letting the intestines rest and giving time for the inflammation to heal is the best treatment for NEC. A baby who gets NEC will not be able to have any milk for at least at least 7-14 days, and sometimes longer. Instead of milk, a baby with NEC will get nutrition through an intravenous catheter (IV). While the intestines rest, a baby with NEC will also be on antibiotics to prevent or treat infection. For most babies, pausing feeds and giving antibiotics is enough for a baby to get better from NEC. However, some babies may develop a hole in their intestines (perforation) or have parts of their intestines that die. About 30% of babies who get NEC will need an operation to fix a perforation or remove any damaged intestine that cannot heal. Sometimes, babies may get very sick from NEC and may die from its complications. However, Most babies who have NEC make a full recovery and do not have any intestinal problems in the future. A small number of babies who had NEC requiring surgery and removal of parts of the intestine may need special care and follow-up. If your baby has suspected or confirmed NEC, your NICU team will discuss the treatment plan and keep you updated.

If your baby has NEC, you will likely be very worried. Talk to your baby’s NICU team and share your questions and worries. • Make a list of any questions you want to ask your baby’s team • Ask your baby’s team if you can hold your baby skin to skin or give your baby hand hugs (click here (https://www.cpbf-fbpc.org/kangaroo-care)to read more about kangaroo care and hand hugs) • Read and talk to your baby (click here (https://www.cpbf-fbpc.org/language-development)to read more about the benefits of reading to your baby) • Continue to pump and freeze your milk • Ask your baby’s team if you can place baby a few drops of breast milk inside your baby’s cheek (sometimes called oral immune therapy or “OIT”), or use breastmilk to clean your baby’s lips and mouth. Even one drop of breastmilk has many benefits for your baby! • Reach out for support when you need it by talking to your family or your NICU team • Join the Canadian Premature Babies Foundation peer support group.(https://www.cpbf-fbpc.org/peer-support-for-nicu-families)