necrotizing enterocolitis

They cut brain bleeds.

They cut a devastating bowel complication called necrotizing enterocolitis or NEC.

They cut death.

One course, two shots, that's it.

Yeah, yeah.

So we were initially exposed to NEC very nonchalantly.

We were approached by a woman in my antepartum room, actually.

And she was like, we are doing a study of collecting for premature babies that are vulnerable to contracting and developing NEC.

And we're like, what is that? And she's like, NEC is necrotizing enterocolitis.

And that means dying of the intestines, like as simple as that.

The intestines will just die off in premature babies.

And I know you didn't have a choice.

She will live a lot of her life in isolation, cut off from, from contact, you know, no meaningful peer-to-peer relationships.

[gentle music] Robyn, Margot was told, had developed a devastating intestinal disease called necrotizing enterocolitis, NEC, or NEC.

It occurs when portions of the intestinal wall become so severely inflamed that they lose their blood supply and begin to die.

The damaged tissue can break down and perforate, allowing bacteria and intestinal contents to spill into the abdominal cavity and bloodstream, which can lead to a whole other host of serious complications, including profound neurological impairments, organ failure, and death, and it's excruciating.

Some babies require heavy sedation simply to tolerate the pain Nurses who have cared for severe NEC cases have described the experience as incredibly dramatic.

Hearing the screams, watching helplessly as premature infants waste away rapidly from a disease that medicine still doesn't fully understand.

The precise cause of NEC remains unclear.

What doctors do know is that the more premature a baby is, the greater the risk.

In fact, the kids in the cow milk group had more mother's milk than the kids in the human milk fortifier group.

And they saw a remarkable decrease in the incidence of necrotizing enterocolitis.

And, you know, I saw you shake your head earlier when I said every NICU nurse knows what NEC is.

None of us ever want to see it.

Interestingly, we're seeing it less than we used to, which is sort of making it a little more difficult for new units to adopt human milk-based fortifiers from prolactin.

So, for instance, there's a couple of recent studies.

prospective randomized trials in the literature that say there's no difference in the outcomes, but neither of them has enough infants in the study to actually make that statement.

And There are probably 30-ish publications, including those, in the literature that support the use of human milk-based fortifiers from prolactin to decrease the incidence of NEC, to improve survival, to decrease severe retinopathy of prematurity, to decrease bronchopulmonary dysplasia, to shorten length of stay, to decrease late-onset sepsis.

Um, like, as they put it, it was distended.

They had mentioned the dangers of, um, NEC to me, and I just, I was kind of, like, focused on that, and I said it.

Like, what's NEC?

And so that's necrotizing enterocolitis.

Oh, that doesn't sound good at all.

But I was just shocked by that.

I was really going by what the author said in the introduction, which was NIPPV was going to basically extend the belly, extend the intestine, and most likely these kids were going to be more at risk of... of NEC, but it turns out it was the opposite.

So no statistically significance, just like a little bit of a signal.

But still, even then, I was like, oh man, that's not the direction I was expecting this to go.

Four infants had necrotizing enterocolitis stage two or higher.

Two infants with focal intestinal perforation and one with necrotizing enterocolitis required surgical exploration.

Their rates of NEC and were very, very low, like less than 3%.

So with that, I'm just going to leave you with the conclusion.

Oh, I see.

In an infant already suffering from poor gut perfusion due to hyperviscosity, introducing albumin drastically increases the risk of necrotizing enterocolitis, or NEC.

Wow.

So you literally risk triggering ischemic necrosis of the bowel simply by choosing the wrong diluting fluid.

Four infants had necrotizing enterocolitis stage two or higher.

Two infants with focal intestinal perforation and one with necrotizing enterocolitis required surgical exploration.

Their rates of NEC were very, very low, like less than 3%.

So with that, I'm just going to leave you with the conclusion.

They say that these results show that extended infusion feedings were non-inferior to intermittent bolus feedings for hospital weight gain in infants born with extremely low birth weight and with potential for early enteral feeding achievements.

Exactly.

It's better to be on partial enteral feeds.

But stay on some form of feeds for a much longer period of time rather than achieving a pre-specified goal and then be NPO for seven days because now you have to deal with the backlash of potentially working up a concern for NEC.

And I'm your co-host, Marissa Borja.

Today, we are honored to be joined by Jennifer Canvasser, the founder and executive director of The Next Society, which is a remarkable nonprofit working toward an urgent and deeply important vision, which is building a world without necrotizing enterocolitis or NEC, N-E-C. We'll talk more about this devastating disease shortly, but Jennifer's leadership has already transformed how families, clinicians, researchers, and policymakers come together to confront it.

Jennifer founded The Next Society after the tragic loss of her son, Micah, who died from complications of neck just before his first birthday.

Out of that unimaginable grief, she's built the world's leading nonprofit dedicated to neck.

So neck is, well, it's my least favorite disease.

I know it's probably your least favorite disease as well, but it's complicated and really it tends to affect premature and medically fragile infants.

How do you explain NEC to someone like a new parent who might be hearing about it for the first time? And why is it so frightening? How do you convey that energy before it happens?

Yeah, that's a big question.