NEC Prognosis — Is NEC Curable? What's the Survival Rate for NEC?

NEC, or necrotizing enterocolitis, is a gastrointestinal disease that affects infants. Most commonly, the disease occurs in premature babies — those born before 37 weeks gestation. When a baby has NEC, their intestines become inflamed and infected. This can result in tissue damage and death. 

Often, the symptoms of NEC come on very quickly, and this disease can be surprising and upsetting for parents. Some of the symptoms babies may experience include a distended stomach, bloody stool, inefficient feeding that may lead to weight loss, and inability to regulate their temperature. As soon as healthcare providers begin to observe these symptoms, they will start to evaluate babies for potential NEC. 

Is NEC Curable? 

NEC is a serious disease that pediatricians and care providers in the NICU are on the lookout for in young and premature babies. While serious, the disease is curable and many babies who develop NEC go on to live full and healthy lives. Your child’s NICU team will quickly develop a necrotizing enterocolitis care plan when your baby is diagnosed. 

About three in four babies who get NEC are able to recover with medical treatment alone. This may include interventions such as withholding traditional feeding, inserting a nasogastric tube, administering antibiotics, and providing oxygen. These treatments give the intestine time to heal and help the body fight off infection. Some interventions, such as providing oxygen, are supportive treatments that help keep your baby alive while their body is weak and fatigued. 

About one in four babies who get NEC will need surgery. Necrotizing enterocolitis surgical treatment often involves removing parts of the intestine that have completely died. Surgeons typically try to save any part of the intestine that is damaged but not so damaged that it can’t make a recovery. Of course, they will leave any healthy intestine intact. Some babies will also need an ostomy, which is a small hole in the baby’s abdomen for their stool to exit. The ostomy gives their intestines a chance to rest while they heal. Usually, the ostomy is removed after six to eight weeks.

Regardless of the treatment type, it often takes about a week for the infection that caused NEC to clear and for the baby to feel better. When your baby’s feeding tube is removed, breast milk is the best option for babies who are recovering from NEC. If you are not able to provide your own breast milk, ask the hospital if they are able to provide donor milk for your baby. 

What Is the Survival Rate for NEC?

Most babies fully recover from necrotizing enterocolitis. It’s estimated that 80% of babies who get NEC survive. Many of these babies make a complete recovery and have no long-term health complications. However, some babies do suffer long-lasting effects due to NEC. 

Some potential complications following NEC include scarred, narrowed, or blocked intestines. Some babies also suffer from malabsorption. This is when their intestines are not able to absorb the nutrients in their food. Unfortunately, malabsorption is a problem that can be lifelong. Babies may also develop an infection if their bowels become perforated as a result of their NEC. In severe cases, this can turn into sepsis.

These complications are more likely to happen in babies with severe NEC, particularly those who require surgery. 

Another potential long-term complication in a baby who had NEC and required surgery is short-bowel syndrome. This syndrome can happen in people of any age who have had a large section of their intestines removed. Some symptoms of short-bowel syndrome include diarrhea, weight loss, and malnutrition. 

In rare cases, a baby with NEC may need a bowel transplant. This may be necessary if a very large section of your baby’s intestine dies. This is also a potential treatment option for people who develop short-bowel syndrome. 

What to Do If Your Baby Has NEC 

Life with a premature baby is full of twists and turns, and just when your baby seems to be doing well, a diagnosis like NEC can crop up. It’s normal to feel scared and helpless when this happens. It’s reassuring to know that your child’s NICU team knows exactly what NEC is and how to treat it. It’s also comforting to know that NEC survival rates have improved over the last few decades. 

Ask your child’s care providers what you can do to care for your baby and help him or her recover. It’s also helpful to be informed on NEC so you can be another set of eyes to watch out for red flags and ensure your baby is getting the best treatment possible. 

Babies who are fed formula are more likely to develop NEC when compared to babies who drink breast milk. Some parents of babies with NEC have fought back against formula companies, claiming that they weren’t properly warned about the possibility of developing NEC as a result of using formula. If you would like to seek justice for your child, you can find information about NEC lawsuit to help fight your case.