What is Necrotizing Enterocolitis (NEC) and Why Does it Matter?

When you have a premature baby, there is no shortage of hospital personnel that comes to your room to tell you all the things that might go wrong. It is a string of doctors, therapists, consultants, et cetera that seem to come in and out like a revolving door of fear.

I spent nearly two weeks in the hospital trying to stop labor before our twin girls were born at 27 weeks and 6 days into my pregnancy. It was a terrifying time; just wondering every day if this would be the day I met them. Or the day I lost them.

During that time I talked with so many doctors. I met the MFM- maternal-fetal-medicine doctor. I met the neonatologist. I met a respiratory therapist. I met with an infectious disease doctor. And of course, I had plenty of ultrasounds. All in the name of monitoring me and my daughters.

But there was another side of the story.

Yes, the hospital was incredible. They kept my girls in for nearly two more weeks, giving them a higher chance of survival. But they also brought scary information with each visit. I was given statistics on the likelihood of survival each day and week. Not only survival but 'survival without deficits.'

I was told how they would likely end up on ventilators at birth. That they may not be breathing and would need to be resuscitated. As an EMT, I knew what a full resuscitation attempt entailed, and when I would close my eyes I could see a team working on a tiny baby. It made me physically ill to imagine.

I was warned about acquired infections, like MRSA that either I or the babies could get. Of course, I didn't need to be told how dangerous that could be for any or all of us. There was also the possibility of brain hemorrhage due to how fragile premature babies are.

So no, there was no shortage of terrifying information to process on a daily basis. All the while, I needed to remain as calm as possible to help my body fight off labor. Not an easy feat when you're more than two hours from your husband and other children, scared and worried all the time.

Then the day came; our girls arrived.

A newborn premature baby with montioring equipment.
Sadie, just minutes after birth.

You can imagine the emotional roller-coaster when the doctor said "they're coming now; I can't do anything more to stop labor." I was going to get to see my girls. But would they be okay? It was just so early. I pleaded with them in my head to be strong for me. I needed them, possibly more than they needed me.

And then sweet Sadie was delivered. I saw her eyes open. I heard her cry. It was weak, but it was a cry. She was breathing! She was whisked away by the NICU team, and I broke down. Tears of joy streamed down my face for my baby. Three minutes later, Sarah was born. Another set of blue eyes. Another weak cry! More tears from Mom.

Both girls were breathing on their own. Sarah too was taken away by her own NICU team while my surgery was finished. Very briefly, Sarah was brought back to my bedside and I was allowed to kiss her tiny head. Soon, I was in the OR recovery room with my husband and one of the girls' NICU nurses came to see us.

She brought us pictures of our beautiful girls and told us they were doing well. Neither girl had required resuscitation. Neither would need a ventilator as they were responding well to their enclosed, warmed, oxygenated isolettes. They were as healthy as could be expected for 27-weekers and things looked good. We were relieved.

The honeymoon phase.

For two weeks, things were great. The girls were doing well and even moved from the RNICU to the CCN. The regional neonatal intensive care unit is the highest level of care a neonate can receive. The continuing care nursery is a NICU step-down unit. We were elated. Our girls were progressing!

But at two weeks old, everything went wrong. Both girls got sick. In the middle of the night, my phone rang, and the doctor on the line told me Sadie was very sick and was going back to the RNICU. "We aren't sure what is wrong yet, but we'll keep you posted."

By the time we got there later, Sadie was fighting for her life and not expected to survive the night. How could this happen? She was fine when we saw her the day before. What went so horribly wrong?

We spoke to the doctor and were told that both girls had necrotizing enterocolitis (NEC) and that Sadie's was a 'total NEC,' meaning her intestines had perforated. It was probable that all of her intestines were dead, and she was septic. If it could be wrong, it was wrong.

It was the first time I had ever heard the term NEC, and it was killing my daughter. A nurse told me later that the first two weeks in the NICU were often called the honeymoon phase, and that it wasn't unusual for serious complications to occur just after that time.

NEC- a quick explanation.

NEC affects the intestines of babies, and premature babies are at higher risk. There are three stages of NEC. Each stage has its own presentation. This link provides some good information about NEC.

Stage one is suspected NEC, and babies will show symptoms such as unstable temperature, low heart rate, abdominal distention, or vomiting. A baby's feeds are stopped and the baby is placed on IV nutrition. Aggressive, supportive care is provided to try to prevent NEC progression.

Stage two is definite NEC. All the symptoms from stage one occur, as well as things such as lactic acid buildup causing the baby to become acidotic, lack of intestinal movement and bowel sounds, and gas buildup within the abdomen that is visible on x-ray. Babies are treated medicinally with powerful antibiotics and other supportive measures.

Stage three is advanced NEC. This is the most severe stage and these babies will be critically ill. Additional symptoms include periods where they stop breathing (apnea), dangerously low blood pressure, possible blood clot formation, and sepsis. Treatment includes all of the above and often, emergency surgery if the baby is stable enough.

Babies who develop advanced NEC do not have a good survival rate. In one interesting study that showed a 45.5 percent NEC mortality rate, seven of the eight babies who died were diagnosed with stage three NEC.

What causes NEC, and what are the survival chances?

There is much speculation on the causes of NEC and quite a few things have been linked to it as possible causes, but there is no one definitive cause. Some of the risk factors include:

  • Prematurity- babies born before the 28th week of pregnancy are at the highest risk. Babies between 2 and 6 weeks old develop NEC most commonly.

  • Being formula-fed- there is some indication that the use of infant formulas may lead to a higher chance of a baby developing NEC.

  • Transfusion-associated- often, premature babies need blood transfusions if their red blood cell count drops, and about one in three premature babies will develop NEC within about three days of being transfused. This is a scary statistic.

  • Other birth defects- there are some birth defects, such as gastroschisis, that can put an infant at risk for NEC.

  • Hospital-acquired- sometimes there can be a NEC outbreak in a NICU where several babies will get NEC at the same time. Germs such as E. Coli are often to blame.

The survival chances of NEC vary greatly depending on which stage a baby has. Earlier stages have up to an 80 percent chance of survival, while babies who have stage 3 NEC have a very low chance of survival, and almost no chance to survive without complications.

Why NEC matters to me.

I could write a book (literally) on how NEC affected Sadie, Sarah, and our entire family. It is a truly complicated and devastating illness for which there is no one cause and no cure. There are many things that are considered risk factors for developing NEC, but nothing is known for sure.

But one thing is known for sure; NEC changed the path of our lives forever. It took Sadie's life from her before she ever even had a chance. Because of that, I am now an advocate for raising awareness around NEC.

May is NEC Awareness Month each year. And every May 17th is NEC Awareness Day. So this May, I ask that you join Sadie's Purpose in helping to raise awareness for necrotizing enterocolitis. Because no baby and no family should ever have to go through NEC. Please visit the NEC Society to learn more about a great team raising awareness for NEC.

Please reach out to us if you'd like to know more about NEC or if you have your own NEC experience you would like to share with us. You may email Amanda at a.knight@sadiespurpose.org or comment here.

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