Mother Brings Awareness To Rare Deadly Disease That Took Life Of Her Child

A mother is bringing awareness to a rare and deadly disease that took the life of her child. This devastating disease was the subject of a conference at UC Davis.

In 2012, Jennifer Canvasser was shocked when she found out one of her newborn twins had Necrotizing Enterocolotis, also known as NEC.

"I had never heard about the disease before. My family, none of us were aware that he was at increased risk of this disease because he was born prematurely," says Canvasser.

NEC is an intestinal disease that mostly affects babies born at 28 weeks or less. The disease causes inflammation that can lead to intestinal tissue damage and death.

At six weeks old, Canvasser's son Micah developed severe NEC, which lead to surgery and then kidney failure. He died at 11 months old.

"Losing a child changes you completely to the core," says Canvasser. "Nothing is the same. It's before you lost Micah and after you lost Micah."

Now, Canvasser runs the NEC Society in Davis. It's a non-profit that aims to bring awareness to the disease.

"We want to know why does NEC strikes one baby and not the other, especially twins for example, and how can we prevent it and keep it from taking children from their families. It's just devastating," she says.

Up to 12 percent of babies born weighing less than two pounds will get NEC.

The best prevention is good prenatal care and breastfeeding once the baby is born.