Professor of Genetics & Biochemistry at LSU Health New Orleans School of Medicine, Sunyoung Kim, PhD talks about detecting NEC in premature babies earlier.
Interview conducted by Ivanhoe Broadcast News in 2023.
Can you explain was NEC stands for and what it is?
Kim: NEC is an abbreviation for Necrotizing Enterocolitis. And it’s a disease that affects the gut or the bowels of inside our bodies. And it’s an inflammatory disease that’s quite severe and has a high incidence of death as well as other complications if you survive it.
And it only affects mostly preemies. Are they born with it or did they get it during birth or after birth?
Kim: It mostly affects preemie babies. If they aren’t born with it, they get it after birth. And so the challenge is nobody knows who’s going to get it, when they’re going to get it, or if they’re going to survive it. And right now, the incidence in the US is about 10% and so you’re talking about 35,000 premature babies a year in the US alone who will get it.
And how does it usually present that you’re looking at the part and they probably have just gone home?
Kim: They have a lot of problems. They’re causing their parents a lot of anxiety. It’s a really dangerous period for them physically in terms of their growth, because basically all of their organs haven’t developed yet that were supposed to happen inside the mom. And so with this, it presents really with nonspecific symptoms. Initially they don’t know if it’s sepsis or some other type of infection, they can just tell there’s something, the baby’s not doing okay. And babies tend to be fussy. And so why they’re fussy or when they’re fussy is a tough thing to figure out. For any parent, they wouldn’t understand that. But it’s even more so when they don’t have the physical or cues, or the ability to communicate, even their distress to parents or their caretakers in a reasonable way. In the beginning, it’s really nonspecific. They just know something’s wrong. It rapidly occurs. And so they’ll see things like, well, the baby might be distended or they’re fussier, or their skin color looks a little not typical. But then it can go towards having blood in their stool and then full blown Necrotizing enterocolitis. Basically, the baby’s stomach looks like an inflatable balloon, and it’s clear that something has gone really wrong. It’s uncontrolled. But the challenge, there could still be several other diseases at that time point and the diagnosis methods are not that great right now. So usually by the time they figure it out, it’s about 24 hours they die.
And I have to think, we spoke for it with a new mother yesterday who has a baby in the NICU. And she said she went home and grab some lunch and take a shower, and the baby was totally fine when she left the hospital. By the time she came back at four or five hours, the baby was a completely different baby.
Kim: That’s right.
It can happen just that fast?
Kim: That’s right. That’s pretty typical of what happens. There is a story by a football player in Texas, and unfortunately do not remember his name. But apparently he was having the game of his life, but he had not released to the press that he had a baby and that it was a premature baby, his son. And before the game, he was told by his significant other that everything was fine. I think at the half time, he got a call saying something was really wrong with a baby. And so in one of his touchdowns, he made a gesture, as they are prone to do, to indicate that they did something well. But the gesture was rocking a baby, and no one understood what that really meant. And at the end of the game, he discovered that the baby had died. So if you think about the length of a football game or an afternoon, that is literally how fast the disease can go from non detected to death.
And until now, can you tell me how doctors detect it? How they make a diagnosis?
Kim: Currently, they use looking physical exam. But as I was indicating, that’s very hard to tell exactly what’s happening in which organ, which part of the body, just by visual inspection. They also do blood tests, but those blood tests are, again, non specific for any disease. What they really rely on as X-ray. If you think about X-ray, I think everybody knows, even in the general population that you’re looking at bones, something really hard and brittle that gives you that image. If you think about your soft tissues inside your stomach or in your gut, you don’t think that you can actually see anything. What they’re looking for is that they’re looking for air pockets that don’t belong there. If they see those air pockets, that means actually the gut has died and the tissue is already not functioning anymore and it’s going to cause additional problems.
You have dedicated that how many years?
Kim: I and a lot of other doctors, nurses, my fabulous staff, students, and postdocs here in the laboratory have really spent the last six years developing a new test and really trying to make sure that we can detect it early as well as accurately.
What does your test do? When do you give it? How do you give it?
Kim: We’re right now still in the research use only stages of it, but we’ve been lucky enough to have a look by the FDA. The FDA did give the test which we’re calling NECDetect, a breakthrough device designation which indicates that it’s first in class as well as a game changer clinically. So for the last few years we’ve been looking at this one protein that’s been found inside the human body. Each of us has this protein in our gut. And we’re trying to understand each individual babies form of that protein and how it’s behaving. When we can do that and monitor and we can do it safely. We can do it non invasively because we’re looking at the poop in their diaper. So that’s a direct read out of what’s happening in their gut. It’s not going through all the other systems, like if you tried to do a blood test. Also, blood draws are really dangerous for babies that are that small. This test is really individualized for each infant in determining what’s happening with their gut, how it’s proceeding, and whether or not they can handle and fight off any bacteria that might be forming in the gut that could harm them, and lead to necrotizing enterocolitis.
Do you see this as a test that would be given to every baby?
Kim: I do, and I would say it’s a kin to maybe what we saw in the pandemic. In a similar way, we didn’t know who was going to get the disease or how severe it was going to be. And so a lot of us decided collectively as a human civilization, that we needed to be able to test ourselves and we also needed to understand whether we can protect ourselves. And the same principles apply for these babies. I would envision that all babies should be screened and actively evaluated.
What would be the difference for these children if NEC is detected within a day of birth than when they’re five years old?
Kim: It would make a difference in terms of one, I think the disease severity would not be so great. Even with current management practices, they could probably lower the disease incidence by half. And what we’re really also striving for is that they won’t have to have intestinal surgery like you saw with a mother yesterday. And that alone will cut down a lot of the long term complications for the disease. Because as I said, if you have these air pockets in the severe form of the disease and the gut is already partially dead, you can’t have other things later on in life. You won’t be able to eat, even if you could eat, you can’t absorb the nutrients very well. You’re going to have growth problems, you’re going to have neurodevelopment problems, you can have behavioral problems. And so there are a lifelong set of complications that come even if you survive the intestinal surgery. So we’re hoping to eliminate that altogether. We’ve actually had about 350 babies around the country that have taken the test. And so part of it is we don’t want to be biased in our results, and we don’t want the clinicians right now to change what they do until the FDA approves it for in final form. But we’re very grateful and we’re aware of the parents. I usually unfortunately hear the parents, they’re allowed to reach out to me. But typically, I hear from them if, unfortunately the baby died. And then they want to make sure that their child, their life contributed for others. It’s an incredibly moving as well as a strong community of mothers and children who are really participating in this. I’m grateful to know Kimberly’s name and I’m very grateful that she’s willing to speak towards the test and what is needed for it.
Are we missing anything?
Kim: We hope that we’re going to move the needle permanently. So the disease was brought to me by doctors and nurses in the area. This was not my initiation or doing, and they were very adamant in repeating, coming to me and saying, we need help and we think you’re the one to do it. And I really had no idea, but I became educated quickly. And I would say for neonatology and the intensive care units, it’s really striking that this disease takes up 20% of their costs. It’s extraordinarily stressful, time intensive, financially intensive for the hospitals, the doctors, the nurses, the mothers, the fathers, the children. But it’s really also hard to understand that there are long term consequences as well. I think what surprised me when we first started and we did our first pilot test, was to realize there’s a pretty reasonable solution that can be easily implemented, never harm the baby, lower the number of X-rays that are being used and do good. We really made it our mission to make sure that that happens. We’re really grateful that we have the opportunity to do it here and we’re hopeful that it will move forward.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
If you would like more information, please contact:
Sunyoung Kim
Sign up for a free weekly e-mail on Medical Breakthroughs called First to Know by clicking here
