The 5 Most Important Things to Know When Your Baby Is Diagnosed With NEC

Having a baby born prematurely and admitted to the neonatal intensive care unit can be stressful, especially if it's unexpected. Visiting your baby in the NICU takes planning and adjustment. Be it a spouse, sibling, or best friend, you will need to ask others for their support. While your baby grows and develops, your baby may encounter inevitable hurdles along the way, so find someone you can lean on during this difficult time.

Many factors can contribute to having your baby diagnosed with necrotizing enterocolitis (NEC), which is defined as an inflammation or infection that can cause damage or death to cells in the intestines. The intestines convert food into waste which exits the body through the stool.

When your baby is diagnosed with NEC, these are the five most important things to keep in mind:

#1 – Constant Communication 

Communicate with nurses and be present for daily rounds with the health care team. During rounds, neonatologists, attending physicians, residents, neonatal nurse practitioners and nurses discuss updates about your baby. This is also a great time to ask direct questions to them that you've been waiting to ask. Ask about medications, procedures or treatment given and why. Don't be shy.

UPMC Children’s Hospital of Pittsburgh and Magee Women’s Hospital state that rounds support “the goals for patient-family centered care and optimal patient safety.” You are encouraged to obtain the NICU’s phone number and providers’ names and call for updates if you cannot be at your baby’s bedside. This enables you to be proactive and understand your baby’s NEC diagnosis, treatment, and progress.

#2 – Frequent Tests and Measurements

When your baby is diagnosed with NEC, frequent blood draws are performed to check for other signs of infection or imbalances in the body. After a while you will get used to this routine, but in the beginning it can be stressful for parents, so expect to have little to no private time.

Abdominal X-rays may show pneumatosis, which is intestinal air or gas produced by bacteria. Your baby’s input (intake of fluids or medications) and output (urine, stool or other waste) are recorded.

While changing your baby’s diaper, note the color and consistency of the stool and report it to the nurse. “Often, one of the tell-tale signs of a baby with NEC is blood in the stool,” says Maritess Baldon, BSN, RN-C, Unit Coordinator, Neonatal Intensive Care Unit, Sentara Norfolk General Hospital. “There may be changes in your baby’s vital signs or behavior, but those can sometimes be very subtle.”

#3 – Bowel Rest

Another thing to know is that you will learn to monitor, look at, and feel your baby’s belly to determine if it is soft or swollen. “We also notice a change in abdominal appearance, increase in abdominal girth, and sometimes the infant’s belly appears loopy, hard, taut, and shiny,” Baldon says. Feedings are stopped to allow the bowels to rest. Baldon says that depending on the severity of the infection or pneumatosis, the general length of treatment is 10 to 14 days. Nemours Children’s Health notes that your baby will have an intravenous line in place to receive antibiotics, fluid replacement, and nutrition in place of regular tube feedings.

Additional treatment for NEC includes inserting a tube through the nose or mouth and ending in the stomach; this Salem Sump is “connected to low, continuous suction to empty out the stomach,” Baldon says. “Some are so severe that surgery is required right away, some lead to perforation [or hole in the intestines] and death in extreme cases.” As parents, what you see and feel are extremely important and can help the hospital monitor vital information.

#4 – Colostrum and Breastmilk

Continue to pump and save colostrum and breastmilk to have available when your baby resumes feedings. Colostrum can boost your baby’s immune system and growth, according to the International Breastfeeding Journal. Colostrum is “breast milk produced within 5 days after delivery” and has high concentrations “until 14 to 20 days after birth, especially in breast milk from mothers of premature infants.”

Many hospitals offer a milk bank from other mothers and donors, for mothers who cannot or are unable to express milk, for medical or logistic reasons. This is a great resource for mothers of NEC babies, as the value of this milk and colostrum can be so critical in early life.

#5 – Kangaroo Care

The last thing to keep in mind is to provide kangaroo care. This is the concept of holding your baby against your base skin to increase bonding and development for your baby. The value of kangaroo care is strongly documented and is extremely important. Although your baby may not be able to feed and may have lines in place during treatment for NEC, request to safely spend time with your precious one.

And don't worry, kangaroo care works with other people as well, not just the moms. So get your spouse, family, and friends involved. It will be a great bonding experience for everyone.

“Kangaroo care is important for infants to bond with their parents and helps them to regulate their heart rate, respirations and oxygen levels,” Baldon says. “Skin-to-skin [contact] with mom or dad helps keep them warm so it’s a better option than swaddling. If an infant is tiny and premature, it is also supposed to be beneficial to moms who are breastfeeding or pumping.”

Be an Advocate for Your Baby

Despite your baby’s diagnosis of NEC, these five things might help you and your baby heal, progress, and recover. Again, communicate daily with your baby’s health care team. Remember that diagnostic tests are helpful in determining the stage of NEC and the recovery phase. Feedings are held to allow your baby’s abdomen and digestive tract to rest. Continue to produce and collect colostrum and breastmilk for your baby. Kangaroo care provides stimulation and development. Most important, be active in your baby’s care. You are your baby’s main advocate. 

About the Author

Jennifer L Dizon, BSN, BA, RN-WCCM, CCM, is a writer, registered nurse, and certified case manager. Her clinical experience is in neonatal intensive care, cardiac intermediate care, and cardiac surgical stepdown.