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Families use grief journey to raise awareness about a devastating disease

Necrotizing Enterocolitis is a leading cause of infant death
Posted at 6:42 AM, Nov 10, 2022
and last updated 2022-11-10 08:27:38-05

GRAND RAPIDS — November is prematurity awareness month. When a baby is born before 37 weeks, it is considered premature.

The World Health Organization estimates 15 million babies are born prematurely every year. That's about one in ten babies.

In 2019, the CDC estimates black women are 50% more likely to have a preemie than Hispanic and white women.

Those infants face developmental challenges and can be more susceptible to illness. Preemies are also at risk for developing a disease called necrotizing enterocolitis, also known as NEC.

Nora and Cody Grigsby of Plainwell got pregnant with twin girls on their last try with invitro fertilization. (IVF).

After bedrest and complications during pregnancy, Nora delivered at 28 weeks.

Two weeks later, that little known disease turned the family's life upside down. On Nora's first visit with her newborn twin girls, everything changed.

"Kathleen threw up, and everybody flew into a panic, like the whole place. I didn't know what was going on," said Nora Grigsby.

Helen Devos Children's Hospital NICU doctors suspected necrotizing enterocolitis (NEC) a disease that attacks the intestines.

"There wasn't anything anybody could tell me. I asked them, how did this happen? What is this? And they don't know," said Grigsby.

NICU neonatologist Dr. Ben Doctor said the smaller the preemie, the greater the risk for NEC.

"Quite honestly, is it is the disease that we are most wary of, because it does come without warning. And it does come on very quickly, it can be very devastating. If you're more than three pounds, it's highly unlikely to occur. If you're less than two pounds, it may occur in about 7% to 9%. If you go smaller to about one pound, then the risk is even higher, it might be closer to 15%," said Dr. Ben Doctor.

Jennifer Canvasser has a similar story. She delivered her twin boys prematurely. She lost her son Micah after 11 months from complications of NEC.

In Micah's memory, Canvasser founded the NEC society to spread awareness and advocate for more research.

"We're actually looking to find biomarkers to help prevent and intervene earlier so that babies have a better chance of surviving and thriving after this disease," said Jennifer Canvasser, Executive Director, Founder NEC Society.

"There is very active, intensive study going on for bacteria that can be introduced into the intestine, and can be safely used as a preventative for necrotizing enterocolitis. The studies for our very smallest babies that we care for the babies that are at highest risk, those are still ongoing," said Dr. Ben Doctor.

Kathleen Josephine got to meet many families inside the Helen Devos NICU before she passed. As a member of the Gun Lake Tribe, a flame was lit in her honor.

Three years later, it's still hard for Nora to find the words to describe her grief.

"There are so many people that are not open to hearing about what happened to my daughter and that's a shame. Because maybe if we talked about it more, maybe if it was OK for me to say, this was my daughter, maybe you would've heard about NEC before now," said Grigsby.

Kathleen's twin just started school, her milestones a bittersweet reminder for Mom and Dad.

Breast milk is shown to make a positive difference in cases of NEC, but families like the Grigbys say much more needs to be done and discovered in order to save these infants.

If you'd like to learn more about NEC or how you can help advocate, click here.