A Parent's Guide to the NICU

Necrotizing Enterocolitis

What is necrotizing enterocolitis (NEC)?

"Necrotizing" means causing death to tissue, "entero" refers to the small intestine, "colo" refers to large intestine, "itis" is inflammation. Necrotizing enterocolitis is an inflammation causing injury to the bowel. NEC may involve only the innermost lining or the entire thickness of the bowel and variable amounts of the bowel.

Why do premature babies get NEC?

Premature infants have immature and fragile bowels. They are sensitive to changes in blood flow and to infection. We often do not know why an individual baby develops NEC.

Did my milk cause NEC?

No, breast milk neither causes NEC nor completely prevents a baby from developing it. Babies fed fresh breast milk get NEC less often than babies fed formula.

Is NEC serious?

Yes, baby's can lose some of their bowel from it. Some babies die of NEC. For this reason doctors may start treatment on simply the suspicion that your baby might be developing symptoms of NEC. This suspicion is sometimes referred to as "rule out NEC", "possible NEC" or a "NEC scare".

How will my baby act if s/he has NEC?

Your baby may show any or all of the following:

• general signs of being "sick": less active, more apnea, increased respiratory problems, difficulty keeping his/her body temperature normal
• poor tolerance to feedings, vomiting or having milk left in the stomach (called aspirates or residuals). These may be greenish in color
• increased size of the tummy
• redness or abnormal color to the tummy
• blood in the stool

What can be done for it?

If your baby's doctor thinks that s/he might be developing NEC any or all of the following might be done.

• All regular feedings stopped. This is called NPO. The baby will have an IV started so s/he can be fed by vein.
• A tube placed into the stomach either from the mouth or nose. The tube removes air and fluids from the baby's stomach and intestine.
• The tummy size measured with a tape measure and watched carefully
• X-rays of the tummy
• A sample of the blood sent to the laboratory (blood culture) to see if it contains bacteria
• Antibiotics started
• More frequent blood tests to look for signs of infection and imbalances in the body's chemistry
• The stools are checked for blood

What happens if part on my baby's intestine dies?

If only the innermost lining of bowel dies, the body can slowly regrow it. If the entire thickness of a piece of the bowel dies, contents of the bowel spill into the abdomen and the baby will need surgery. This may involve just putting drain into the abdomen if the baby is very small or very sick. Then, if needed, the baby will have surgery later to repair the bowel. Some babies to not need later surgery, but most do. If the baby is larger, or more stable, the baby has an operation to remove the piece of the bowel that is no longer alive. The end of the bowel above the removed piece may be brought to the surface of the skin (called ostomy). At some later time, after the baby has recovered and grown bigger, the two ends of the bowel are sewn back together again in a second surgery,. Occasionally, the ends of the bowel can be sewn together during the first surgery, and then no further surgery is needed. The surgeon decides this at the time of surgery.

Are there any long term problems from NEC?

Most babies who recover from NEC do not have further problems; but, future problems are possible, especially if there has been bowel rupture. These include:

• Malabsorption or inability of the bowel to absorb nutrients normally.
• Short Bowel - too little bowel to absorb all the nutrients needed by the body
• Scarring and narrowing of the bowel causing "obstruction" or blockage of the bowel
• Scarring within the abdomen causing later pain and possible female infertility
• Problems due to long term use of total nutrition by vein