Consumer Information

Necrotizing Enterocolitis In Children

WHAT YOU SHOULD KNOW:

Necrotizing (NEK-ro-TIZ-ing) enterocolitis (EN-ter-o-ko-LI-tis), also known as NEC, is a serious intestinal disease that usually affects premature infants. This often occurs within the first 2 weeks of birth and after milk feeding has started. With NEC, the intestines (bowels) get infected and inflamed (swollen). This causes damage and necrosis (tissue death) of a part of or the entire intestine. Over time, this necrosis may prevent blood flow through the intestines causing pain, perforation (a hole), or bleeding. The exact cause of NEC remains unclear but many factors are thought to increase its risk. These include prematurity, low oxygen and blood supply to the intestines, milk feedings, and infections.
The signs and symptoms may appear after feeding your baby with milk. He may have abdominal (belly) pain, an enlarged abdomen, or trouble breathing or feeding. He may also have blood in his stools (BM) or greenish vomit (throw up). Abdominal x-rays and blood or stool tests may be used to diagnose NEC. Treatment may include an NG tube or IV feeding, surgery, or medicines to ease his symptoms. The earlier NEC is found and treated, the better the chances that your baby may live. With treatment, such as medicine and surgery, your baby's symptoms may be relieved and his quality of life may be improved.

CARE AGREEMENT:

You have the right to help plan your baby's care. To help with this plan, you must learn about your baby's health condition and how it may be treated. You can then discuss treatment options with your baby's caregivers. Work with them to decide what care may be used to treat your baby.

RISKS:

Treatment for NEC may cause unpleasant side effects. Some medicines may cause flushing, sleeping problems, headache, blurred vision, drowsiness, constipation, or dry mouth. There are also risks when having surgery, such as infection or bleeding. The intestines may also form scars and narrowing that may cause an obstruction or blockage. Babies with NEC are at higher risk for slow growth and poor nutrition.
If NEC is not treated, your baby's intestines cannot work well. He may not be able to absorb enough milk, food and nutrients needed by his body. Tissue damage and necrosis to the intestines may also lead to bleeding or perforations (holes). This allows bacteria to leak out and cause sepsis (blood infection) and peritonitis (swelling in the abdominal covering). Once infection spreads, your baby may have other problems that may be life-threatening. Ask your caregiver if you have questions about your baby's disease, medicines, or care.

WHILE YOU ARE HERE:

Informed consent: You have the right to understand your child's health condition in words that you know. You should be told what tests, treatments, or procedures may be done to treat your child's condition. Your child's caregiver should also tell you about the risks and benefits of each treatment. You may be asked to sign a consent form that gives your child's caregivers permission to do certain tests, treatments, or procedures. If you are unable to give your consent, someone who has permission can sign this form for you. A consent form is a legal piece of paper that tells exactly what will be done to your child. Before giving your consent, make sure all your questions have been answered so that you understand what may happen to your child.

Abdominal measuring: Caregivers use a measuring tape to measure around your baby's abdomen. His abdomen may be measured every 4 to 8 hours to see if it is getting smaller or larger.

Diet: Your baby's caregiver may stop feeding your child through his mouth for a period of time. This is to rest his intestines. A caregiver, called a dietitian, may talk to you about your baby's feeding and nutrition. High-calorie liquid feedings may be given through a gastric tube if your baby cannot drink milk. As he improves, he may be given a different milk formula or start having baby foods. Ask your baby's caregiver for more information about his feeding and nutrition.

CVP line: A CVP line is also called a central line. It is an IV catheter or tube. It is put into a large blood vessel near your child's neck, groin, or near his collarbone. The CVP line may be used to give medicines, draw blood, or to check your child's heart.

Chest x-ray: This is a picture of your child's lungs and heart. Caregivers use it to see how your child's lungs and heart are doing. Caregivers may use the x-ray to look for signs of infection (such as pneumonia) or other problems.

Gastric tube: This tube is inserted into your baby's nose or mouth and down to his stomach. This keeps air and fluid out of the stomach during surgery. Your baby may also need it if he throws up a lot after surgery. Food or medicine may also be given through this tube.

Intake and output (I&O):

Your child's caregiver may need to know how much liquid your child is getting and urinating. Caregivers may also want to know how much your child eats and if he had a bowel movement (BM).
Your child may need to urinate into a container in bed or in the toilet. A caregiver will then measure the amount of urine. If your child wears diapers, save them so a caregiver can weigh them. Do not throw away diapers or flush urine down the toilet before asking your child's caregiver.

IV: An IV is a tiny tube placed in your child's vein for giving medicine or liquids. This tube is capped or connected to tubing and liquid.

Medicines: Your baby may need one or more of the following:

Antibiotics: Antibiotics may be given to help your child fight an infection caused by a germ called bacteria.
Pain medicine: Caregivers may give medicine to decrease your child's pain. Tell a caregiver if your child's pain does not go away or comes back after taking this medicine. Pain medicine can have side effects. Tell a caregiver if your child has trouble breathing, is very sleepy, or has an upset stomach. Tell a caregiver if your child is allergic to any medicine.
Special milk formulas and vitamins: These may be given through the gastric tube to make sure your baby is getting the proper nutrition. Other special formulas that have fats and oils, which are easy to digest, may also be given.

Tests: Your baby may need one or more of the following tests:

Abdominal x-rays: These are pictures of the organs inside your child's abdomen. Caregivers use these pictures to look for problems, such as blocked intestines. These may also check for the presence of air in his bowels or large veins in the liver. Air outside the intestines and in the abdominal cavity may also be detected with these x-rays.
Blood gases: These tests are also called arterial blood gases (ABGs). Blood is taken from an artery usually in your child's wrist. ABGs may be done if your child has trouble breathing or other problems caused by his illness.
Blood tests: Your child may need blood taken for tests. The blood may be taken from your child's arm, hand, finger, foot, heel, or IV. Blood tests can give caregivers more information about your child's health condition. Your child may need to have blood drawn more than once.
Kidneys, ureters, and bladder x-ray: A caregiver uses an x-ray machine to take pictures of your baby's kidneys, ureters, and bladder. The ureters are tiny tubes that carry urine from your baby's kidneys to his bladder. The bladder is where the urine is stored before leaving his body. Caregivers use these pictures to help find any problems with his intestine, kidneys, or abdomen.
Stool test: A sample of your baby's stool (BM) may also be taken and sent to a lab for tests.

Treatment options: Your baby may need any of the following:

ET tube: Your child may need an endotracheal (ET) tube to help him breathe. An ET tube is put in your child's mouth or nose, and goes into the trachea (windpipe). It may be connected to a breathing machine called a ventilator. The ET tube will be taken out when your child is breathing better.
Surgery: Your baby may need surgery if the intestines have tears or holes. Caregivers may also remove a part of or the entire bowel. If stool spills from his bowel, a colostomy may be done. Colostomy is a surgery where part of the intestines will be connected to an opening on the abdomen. The intestines may be connected back when the infection and swelling have healed. Sometimes, your baby may need a bowel transplant. This is done by removing your baby's bowel and replacing it with a healthy, donated bowel.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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