Necrotizing enterocolitis (nek-roh-TIE-zing en-ter-oh-coh-LIE-tis), or NEC, is the most common and serious intestinal disease among premature babies. It happens when tissue in the small or large intestine is injured or inflamed. This can lead to death of intestinal tissue and, in some cases, a hole (perforation) in the intestinal wall.
In NEC, the intestine can no longer hold waste. So may pass into the bloodstream and cause a life-threatening infection. Waste may pass into the baby's abdomen and make the baby very sick. The injured intestine, or sections of it, may die and need to be removed.
What Are the Signs & Symptoms of Necrotizing Enterocolitis?
A baby with necrotizing enterocolitis might have these symptoms:
Symptoms of NEC can vary from baby to baby, and be like those caused by other digestive problems.
What Causes Necrotizing Enterocolitis?
There is no single consistent cause of necrotizing enterocolitis. In most cases, a specific cause isn't found. But experts believe these things might play a role:
an underdeveloped (premature) intestine
too little oxygen or blood flow to the intestine at birth or later
injury to the intestinal lining
heavy growth of bacteria in the intestine that erodes the intestinal wall
viral or bacterial infection of the intestine
formula feeding (breastfed babies have a lower risk of NEC)
NEC sometimes seems to happen in "clusters," affecting several infants in the same nursery. This might be coincidental, but some and bacteria occasionally have been found in babies with NEC. NEC does not spread from one baby to another, but a virus or bacteria that cause it can. This is one reason all nurseries and NICUs have very strict precautions to help prevent the spread of infection.
Who Gets Necrotizing Enterocolitis?
Most cases of necrotizing enterocolitis are in babies born before 32 weeks gestation. But full-term babies who have health problems, like a heart defect, also can have it. Babies with NEC usually develop it within the first 2–4 weeks of life.
How Is Necrotizing Enterocolitis Diagnosed?
In babies with symptoms of NEC, a diagnosis can be confirmed if an abnormal gas pattern shows up on an X-ray. This looks like a bubbly or streaky appearance of gas in the walls of the intestine.
In severe cases, air escapes from the intestine and shows up in the large veins of the liver or the abdominal cavity. A doctor may insert a needle into the belly to withdraw fluid to see whether there is a hole in the intestine.
How Is Necrotizing Enterocolitis Treated?
After diagnosis, treatment begins immediately. It includes:
temporarily stopping all feedings
nasogastric or orogastric drainage (inserting a tube through the nose or mouth into the stomach to remove air and fluid from the stomach and intestine)
IV (given into a vein) fluids for fluid replacement and nutrition
a consultation with a pediatric surgeon to discuss surgery, if needed
in severe cases, surgery may be needed right away
The baby's poop is watched for blood and the baby's belly size is checked regularly. A hole in the intestine or an infection in the abdominal cavity will make the belly swell. If a baby's belly is so swollen that it affects breathing, extra oxygen or a breathing machine (ventilator) will help the baby breathe. Also, blood tests will look for bacteria and check for anemia (a decrease in red blood cells).
After responding to treatment, a baby can be back on regular feedings after a week or two. When feedings start again, breast milk is recommended. Breast milk is beneficial for babies with NEC because it is easily digested, supports the growth of healthy bacteria in the intestinal tract, and boosts a baby's immunity — which is especially important for a preterm baby with an immature immune system.
For women who can't breastfeed or provide enough breast milk, doctors may recommend giving the baby pasteurized human breast milk from a milk bank, which is considered a safe alternative. Special formula may also be used.
Some babies will need surgery if their condition gets worse despite medical care. The surgeon will look for a hole in the intestine and remove any dead or dying intestinal tissue. In some cases after this removal, the healthy intestine can be sewn back together. Other times, especially if the baby is very ill or a large section of the intestine was removed, an ostomy is done. During an ostomy, surgeons bring an area of the intestine to an opening on the abdomen (stoma) so that stool can safely exit the body. A second surgery may be done to re-examine the intestines. If an ostomy is made, it will be closed 6–8 weeks later, after the intestine is fully healed and healthy again.
What Can I Expect?
Most babies who develop NEC recover fully and do not have further feeding problems. In some cases, the intestine is scarred, narrowed, or blocked. If so, more surgery might be needed.
Malabsorption (when the intestine can't absorb nutrients normally) can be a lasting problem from NEC. It's more common in babies who had part of their intestine removed. A baby with malabsorption may need nutrition delivered directly into a vein until the intestine heals well enough to tolerate normal feeding.
If your baby has NEC, it's normal to worry. And not being able to feed your baby can be frustrating — infants are so small, it just doesn't feel right to stop feedings or take away that precious bonding time. But that might be the best thing for your baby during treatment. And remember, there's a good chance that your baby will be back on regular feedings soon.
In the meantime, ask a member of your care team what you can do to care for and bond with your baby. There are ways you can help. Members of your care team are eager to support parents of preemies, as well as the preemies themselves, on the path to recovery.