Looking for Causes and Cures of a Fatal Disease in Newborns

Jennifer and Noah Canvasser’s twin boys Micah and Zachary were born in 2012 at 27 weeks’ gestation, each weighing only about 2 pounds. After six weeks in the neonatal intensive care unit (NICU), both boys were doing well. They were up to 5 pounds and beginning to nurse.

Parents with preemie newborns
Parents Noah and Jennifer with twins Micah and Zachary.

“We were full of hope and excited about the future,” Jennifer Canvasser says. But suddenly, baby Micah became critically ill. The diagnosis was necrotizing enterocolitis (NEC), a disease she had never heard of. NEC causes the lining of the intestinal wall to die (“necrosis” is the death of cells in an organ or tissue). It primarily affects premature and medically fragile infants.

Micah needed several surgeries to remove parts of his bowels and remained hospitalized long after Zachary was strong enough to go home. For months, Canvasser and Zachary spent every day at the hospital with Micah. When the twins were 10 months old, Micah finally went home, too, although he had many complications from NEC, including short bowel syndrome and kidney failure.

Still, “we thought Micah had overcome his worst battles,” Canvasser says.

Then Micah developed pneumonia and had to be readmitted to the hospital. He died in the hospital, in his mother’s arms, just before the boys’ 1st birthday.

“I had to learn to breathe again,” Canvasser says. “I asked myself how I could live in a way that would keep his memory alive and find meaning.”

Mother and two young boys
Jennifer with Zachary and Elijah at a NEC Society Event

In honor of Micah, Canvasser started the NEC Society, a nonprofit organization to connect families, doctors and researchers, with the goal of “building a world without necrotizing enterocolitis (NEC) through research, advocacy and education.”

Through the NEC Society, she met Misty Good, MD, one of the world’s leading NEC doctors and researchers, and the division chief of neonatal-perinatal medicine at UNC Children’s Hospital. Together with other parents and doctors, they are seeking prevention, cures and support for families devastated by NEC.

Premature Infants Are at the Highest Risk of Developing Necrotizing Enterocolitis

Sadly, the Canvasser family’s story is not unusual among babies with NEC. Between 15 and 40 percent of infants who develop NEC do not survive. Some babies recover and thrive; other babies recover but have long-term problems with cognition, motor abilities and intestinal function.

Although the cause of NEC is unknown, infants born preterm (before 37 weeks of pregnancy) or weighing less than about 5.5 pounds are at increased risk.

“The smaller and more preterm the baby is, the greater the risk of NEC,” says Dr. Good, who came to UNC Health in November 2021.

About 9,000 of the 480,000 babies that are born preterm in the United States will be affected by NEC. The number of NEC cases seems to be increasing because medical advances are helping more low-weight and preterm babies survive, Dr. Good says. Full-term babies can also develop NEC (the rate is about 1 in 10,000 full-term babies), but most have another serious illness or risk factor, such as congenital heart disease.

What may be most alarming and terrifying for families is how quickly NEC progresses with often no warning signs. Most babies who develop NEC are between 3 and 6 weeks old and have been relatively stable in the NICU.

“Often, it happens suddenly,” Dr. Good says. “They can be fairly stable, then die within hours of the first symptoms appearing.”

An early warning sign may be blood in their stool or lethargy, Dr. Good says. But more often, a baby’s abdomen becomes distended and hard.

“These are babies who are being watched continuously in the NICU,” she says. “The baby is doing fine one moment, then they’re critically ill and it is devastating for everyone.”

When symptoms begin, all feeding is stopped, antibiotics are started, and X-rays are taken at regular intervals to monitor damage to the intestines. If there are signs that a baby’s intestine is severely damaged, surgery may be required to remove dead tissue. In the worst cases, the entire intestine may die, and the baby has little chance of surviving.

Research Aimed at Preventing Necrotizing Enterocolitis

Doctors cannot predict which babies will develop NEC, and we don’t know how to prevent the disease, Dr. Good says. However, babies who can receive maternal breast milk seem to be at a somewhat lower risk. Dr. Good and other researchers at UNC and around the world are trying to discover what components of breast milk provide some protection. Many mothers who deliver their babies early cannot produce enough breast milk—or any at all.

“These babies are often too tiny to latch on to the breast, so the mothers have to pump,” she says, “but every drop of breast milk the babies can get is like medicine to them.”

Often donor milk is used when mother’s milk is unavailable, often because of inadequate supply.

In searching for causes, treatments and prevention of NEC, Dr. Good and others are studying the disease down to the molecular level. She is the director of the NEC Biorepository, which collects samples from babies with and without NEC, looking for commonalities and clues. The samples include blood, urine, stool, gastric contents and sections of intestines that have been removed from babies with NEC.

Two brothers holding a picture of their brother
Zachary and Elijah holding a picture of Micah.

Dr. Good and her team are exploring the potential of treatments in mouse models and human cells from babies with NEC.

She also works with Canvasser and others through the NEC Society as a member of the Scientific Advisory Council, which works collaboratively to find causes, treatments and cures for NEC, and provides guidance on the NEC Society’s projects, website content and materials, including resources for families.

Dr. Good is passionate about helping more NEC stories have happy endings.

“I’ve seen too many of these babies die from NEC,” she says. “I’m trying to save the next generation of babies so that neither they nor their families have to endure the devastation related to this disease.”

If you have questions about your health or the health of your baby, talk to your doctor, or find one near you.