Necrotizing Enterocolitis

In necrotizing enterocolitis (NEC), bacteria infect and irritate the bowels. The infection can cause part of the bowels to die. 

• “Enterocolitis” (pronounced ent-air-oh-co-LITE-iss) means inflamed bowels.
• “Necrotizing” (pronounced nek-roh-TIE-zing) means it causes tissue death. 

NEC may affect part or all of the bowels. It can be mild or life threatening. 

• In milder cases, the bowels may heal and be fine after medical treatment to fight the infection.
• In more serious cases, a baby may need surgery to remove damaged parts of their bowels.
• In the worst cases, the bowels may fail or the infection may overwhelm the baby’s body.

• Who is more likely to get NEC?
  • NEC most often affects babies who were born early (premature).
  • Babies born with other health problems, such as heart defects or gastroschisis, may get NEC.
  • Sometimes we treat older children who show signs of NEC on an X-ray of their bowels.
• Causes of NEC

  The cause of NEC is not clear. These factors seem to play a role: 

  • A baby’s bowels may not be mature enough or healthy enough to move food along well when the baby is fed.
  • A baby’s immune system may not be strong enough to protect the bowels from bacteria or may overreact to an infection.
  • Blood flow to the bowels may be poor.

We have treated hundreds of babies with NEC at Seattle Children’s. We treat this condition without surgery whenever we can. If surgery is the best treatment, our team has the skill and experience your child needs.

Contact our General and Thoracic Surgery Department at 206-987-2794 for more information about NEC or if you would like a second opinion. Providers, see how to refer a patient.

• Treatment without surgery
  • Our goal is to treat NEC without surgery if possible. Most babies we treat (about 70%) do not need surgery.
  • Because our surgeons have treated so many children, they have a sharper ability to decide when surgery is needed.
• If surgery is needed, the experts are here
  • Although we can help most children without surgery, some children do need an operation. Our surgeons are very experienced at removing the damaged part while leaving as much of the bowels as possible.
  • In a typical year, our surgical team treats more than 20 babies who need surgery for NEC. More cases add up to better outcomes.
  • Our Level IV Neonatal Intensive Care Unit (NICU) is skilled and equipped to care for the sickest babies. Our transport team of doctors, nurses and respiratory therapists are national leaders in safely moving fragile newborns.
  • We have all the experts your child needs. Your healthcare team will include specialists in newborn care (neonatology), pediatric surgery, nutrition, the digestive system (gastroenterology) and others as needed. We work together, and with you, to care for your child.
  • For children who develop intestinal failure after NEC, Seattle Children’s is home to the Pacific Northwest’s only pediatric Intestinal Rehabilitation Program. Studies show that children with this condition do better in specialized pediatric clinics.
• We treat your whole child
  • Your child needs care designed just for them. Babies and children differ from adults in how they react to illness, medicine, pain and surgery. That is why our surgeons are all board certified in pediatric surgery.
  • Our pediatric experts understand how treatments today affect growing bodies in the future. We do only the tests, radiation and surgery that your child needs. We use lower radiation doses than recommended by the American College of Radiology.
  • Seattle Children’s is 1 of just 5 hospitals nationwide recognized by ChildKind International for how well we prevent and treat pain in children.
• Support for your whole family
  • At Seattle Children’s, your family has a full team behind you. Our doctors, nurses,child life specialists and social workers help your family through the challenges of this illness. We connect you to community resources and support groups.
  • We take time to explain your child’s condition. We help you fully understand your treatment options and make the choices that are right for your family.
  • We work with children and families from around the Northwest and beyond. We can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Learn about our services for patients and families.

Most of the children we treat for NEC are premature babies who are in the hospital for other treatment. If your child has symptoms of NEC, your child’s doctor will: 

• Ask about your child’s illness
• Do a complete physical exam
• Test your child’s blood
• Possibly check your child’s poop (stool) for blood

• Blood tests

  Blood tests check for: 

  • High or low white blood cell count (caused by infection)
  • Low platelet level (caused by poison released by bacteria)
  • High level of acid in the blood (caused by dying tissue)
• X-rays to check for signs of NEC

  Your child may need X-rays of their belly and chest to look for these signs of NEC: 

  • Pockets of air inside the wall of the bowels
  • Air bubbles in the vein from the bowels to the liver
  • Air inside the belly but outside the bowels
  • Fluid inside the belly
  • Enlarged loops of bowels that do not move

If there are signs that any part of your baby’s bowels has died or has holes (perforated), your baby will need surgery to remove that part. The goal of surgery is to remove only the dead or perforated part, leaving as much as possible. Even if part of the bowels that’s left is inflamed or infected, it might heal. Your baby is likely to grow and develop better if they keep more of their bowels.

Before surgery, the surgeon and a doctor who specializes in newborns (neonatologist) will try to make your baby’s condition stable. Your baby will need the same treatments as babies who are not having surgery. These include an NG tube, IV fluids and antibiotics.

• During surgery

  If your baby needs surgery, we will give them medicine to make them sleep without pain (general anesthesia). The doctors at Seattle Children’s have extra years of training in how to give anesthesia to children safely.

  The surgeon makes a cut (incision), usually above the belly button, to open the belly. Then the surgeon cuts out any segment of bowel that is dead.

  The surgeon may leave parts of the bowels that are sick but not dead so your baby has as much as possible. Your baby may have another surgery within 2 days to see if those parts will survive or need to be removed.

  When surgeons have to cut out part of the bowels, they may use stitches to reconnect the bowels. This is called primary anastomosis (pronounced an-as-toe-MOE-sis). It is possible only if: 

  • A small segment was removed
  • The rest of the bowels seems healthy
  • Your baby is in good condition
• Ostomy

  If the rest of the bowels do not seem healthy or a large part was removed, the surgeon might not reconnect the bowels. Instead, the surgeon creates 2 small openings (stoma) in your baby’s belly wall. This procedure is called an ostomy (pronounced OST-uh-mee).

  The surgeon sews the upper end of the bowels to 1 opening in the belly. This lets bowel movements (poop) come out of the body into a plastic pouch attached on the outside of the body. Next, the surgeon sews the lower end of the bowels to the other opening. This end is called the mucus fistula. Usually very little comes out of this opening.

  If your baby needs ostomies, we will teach you how to care for the openings. These ostomies are temporary. When your baby is doing better, the surgeon will connect the 2 segments of the bowels to each other and close the openings in your baby’s belly. Usually this is done at least 2 months later and when your baby is growing well.

• Strictures

  As NEC heals, a scar may form that makes the bowels very narrow. This is called a stricture. It can happen: 

  • Where the surgeon sewed the 2 ends of the bowels together
  • In areas of the bowels that had NEC and didn’t need surgery 

  Most often if a stricture forms, surgery is needed to fix it.

• Short bowel syndrome

  If your child had a large part of their bowels removed, the remaining part may not absorb nutrients from food properly. This is called short bowel syndrome. It can cause serious problems with your child’s growth and development. Our team keeps as much of your child’s bowels as possible to try to prevent this.

• After surgery

  After surgery, your baby will continue to receive the highest level of care in our Level IV Neonatal Intensive Care Unit (NICU).

  When your baby is ready, they move to a regular hospital room. We give your baby antibiotics, pain medicine and other medicines to help them recover.

  The surgery and newborn care teams will stay closely involved with your baby’s care. As your baby starts to feed again, the neonatology staff will take over all your baby’s care.

  The surgeon will see your baby again if: 

  • The ostomies need to be closed
  • There are problems with short bowel syndrome
  • There are any other issues that relate to surgery