Ep. 8: GutCheckNEC—A Comprehensive Overview of Risk Assessment with Dr. Sheila Gephart

Dr. Sheila Gephart

Dr. Sheila Gephart. Photo courtesy of Dr. Sheila Gephart.

Episode 8 features Dr. Sheila Gephart, neonatal nurse scientist and assistant professor at the University of Arizona College of Nursing. During this episode, Dr. Gephart provides a comprehensive overview of GutCheckNEC, a first-of-its-kind, 10-item risk assessment that she developed for the early detection of NEC in premature infants. She discusses:

* Her transition from bedside nurse in the neonatal intensive care unit to her development of GutCheckNEC—what she calls a “real-time, early warning score for NEC,”
* The 10 risk factors that make up GutCheckNEC, their associated symptoms, and how risk is communicated,
* The development of NEC Zero, an intervention that has evolved out of the Unit NEC rate component of GutCheckNEC,
* The strength of evidence for the use of probiotics in the prevention of NEC, and
* The importance of shared decision making in the NICU.

Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network.

STEPHANIE VAUGHAN, HOST: Welcome to Episode 8 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis.

Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org.

Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund.

Today, my guest will be Dr. Sheila Gephart, neonatal nurse scientist and assistant professor at the University of Arizona College of Nursing, who developed a first-of-its-kind, 10-item risk assessment for the early detection of NEC in premature infants called GutCheckNEC.

During our conversation, she will discuss in varying degrees:

  • Her transition from bedside nurse in the neonatal intensive care unit to her development of GutCheckNEC—what she calls a “real-time, early warning score for NEC,”
  • The 10 risk factors that make up the acronym GutCheck and their associated symptoms
  • How risk is communicated,
  • The significance of the Unit NEC rate component in GutCheckNEC, and how that led her to develop the NEC Zero Intervention,
  • The strength of evidence for the use of probiotics in the prevention of NEC, and
  • The importance of shared decision making in the NICU.

With that in mind, let me introduce my guest today.

Hi, welcome to the show. This is my guest, Dr. Sheila Gephart. She is a neonatal nurse scientist from the University of Arizona College of Nursing. Hi, Sheila, how are you?

DR. SHEILA GEPHART, GUEST: Good, thank you, Stephanie!

STEPHANIE: Thank you! So, we have had more than one person mention you on our show in previous episodes, so I’m thrilled to have you join me today and would love to let you talk a little bit about your background and how you got involved with Necrotizing Enterocolitis.

DR. GEPHART: Well, I am very thankful to be asked to be on the broadcast today, and I will tell you that I started my interest in Necrotizing Enterocolitis risk understanding when I was a bedside nurse. I have been a nurse since 1997, and I worked in the neonatal intensive care unit as a bedside nurse taking care of babies, and many of them were really convalescing. They were doing well, but then we had a subset of babies, or a clump of babies, that all developed this horrible disease within about three weeks. And now I know the clustering of NEC is very common, or not common, but it does happen.

STEPHANIE: Right.

DR. GEPHART: But then I didn’t really understand a whole lot about the disease, but I was very concerned because I realized that we had been concerned about these babies, as nurses, for hours to days before the actual diagnosis of NEC was made. So what happened at that point was I had the role of getting into the data for our NICU. I collected the data and reported the data for a large registry called the Vermont Oxford Network. And so I was focused on looking at the baby’s case and looking at the research and looking at the data, and I realized that there was a constellation of risk factors that kind of coalesced for these kids, that all of these things seemed to snowball with these babies who developed NEC, and we really had no context for talking to physicians to communicate why we were concerned. We were using terms like something’s not right with this baby, and from there, it really launched me into the next five years of understanding more about NEC risk.

STEPHANIE: Okay. And can you talk to me a little bit about the protocol – I think it’s a protocol — that you’ve developed called GutCheckNEC and how you got from starting to look at the data to compiling and understanding this set of risk factors?

DR. GEPHART: Sure, I’m happy to talk about GutCheckNEC. So, being a bedside nurse, sometimes I would work in the middle of the night, and I needed a strategy for putting things together so I could remember them. And when I thought about NEC, I thought about well, we just need to check the gut. So GutCheck was kind of how it organized these risk factors, and I wrote GutCheck in a line straight down, and I remember one day I was at a delivery, and it was about three in the morning and it was taking a while for the baby to be born. And I was trying to understand all of the research that I had been reading about NEC risk and so what I did was I write GutCheck straight down on a napkin and horizontally for each letter I wrote the risk factor that was associated with that letter, and so that helped me organize what I was reading in the literature. But really it started out as just wanting to develop a risk assessment so nurses could really know what the risk factors were, physicians could know what the risk factors were, but then also put the symptoms in the context of what was going on with the baby. So that’s where I started, but then I went into a Ph.D. program, and in science you have to be very systematic. And so my literature review was the systematic beginning. But then what I did was I asked neonatal NEC experts how relevant they thought the different risk factors were to actually developing NEC. So I asked them to rate the relevance, and we went through three rounds of surveys to determine if we had the right list of risk factors, so that was very useful. We got rid of some, we kept most of them and added a few. And then, the next step was I got a very large dataset from a group of neonatal practices here in the US called The Pediatrics Medical Group, and I built, this is research speak, but I will tell you that I threw all of the risk factors into a statistical model to see what fell out as the most important, and the way statistical models work is that they keep the most important things that account for most of the explanation for what you’re looking at, and they get rid of everything that’s not quite so important.

STEPHANIE: Okay.

DR. GEPHART: So we went from like 33 risk factors down to essentially ten risk factors for GutCheckNEC. And then we tested it to see if it actually discriminated or told the difference between the kids that got NEC and the ones who didn’t, and it showed pretty good discrimination, or separation of groups, for the kids who had the most severe NEC compared to those who didn’t get NEC at all.

STEPHANIE: Okay.

DR. GEPHART: So that was the work we did, and now we’re taking this ten item tool and we’re trying to combine it with clinical science so that we can really have a real time early warning score for NEC.

STEPHANIE: Great. Can you sort of go down the list just for parents that might be listening or family members if they’re seeing any of these risk factors?

DR. GEPHART: Sure, I’d be happy to do that. The items that we kept in GutCheckNEC, like I said, there are two versions. There’s the one before the statistical modeling and then there is the one after, and the one that’s before is actually more comprehensive. And if you think about just writing GutCheck down linearly, you think for G, you’ve got growth restricted, so they’re born really small for gestational age, you’ve got gestational age. Those are the main ones that I always thought of with the G. And then with U, the one item that the experts recommended adding was the unit NEC rate, because infants who are in units with high NEC rates are more likely to get NEC, and so I didn’t understand that finding. I’ll talk about that in a minute, about the unit NEC rate. T, if you talk about T, transfusion. There is an association that we see in lots of studies with transfusion and NEC. We don’t see any evidence of causation, but the studies aren’t designed to show us that, so there is a temporal relationship or a time based relationship between transfusion and the most severe NEC. That said, there is a lot of babies who get transfusions and don’t get NEC. So that’s what makes it hard.

STEPHANIE: Right.

DR. GEPHART: What else goes with T? I’m going to stick to the final version, okay, as we think through the acronym. And then for C, signs of infection, so chorioamnionitis is when mom has a really bad uterine infection prior to the baby being born. Some preterm moms have this because—we don’t know exactly why they have this, but chorioamnionitis, particularly if it’s invasive, if it’s really severe, that is a risk factor. Also cardiac kids are going to be more at risk, so if you think of the C, kids who have had heart disease or heart malformations, particularly those that are low oxygenation kinds of defects…

STEPHANIE: Right.

DR. GEPHART: ..and there are some more for C but I don’t recall exactly what those were right now, but I’m just going to stick—oh, culture proven infection. That also goes with C. So if babies have had sepsis, particularly more than once, which sometimes these really early babies do get multiple bouts of infection, that is a risk factor. So that stayed in my model long term. Enteral feeding is definitely a risk factor that all babies are hopefully exposed to because we want them to be fed. That I understand a lot more now about the details of enteral feeding, and that particularly if the enteral feeding is formula, that is very important. We know formula is a high risk factor. There is a whole slew of argument about cow’s milk based fortifiers that go with that as well, so there is some argument about how extensive of a risk factor that is, but formula and enteral feedings certainly. And then the H, I skipped the H. That would be hypotension treated with medicines to bring that blood pressure up. So hypotension is low blood pressure. A lot of preemies have episodes of low blood pressure, but we know that the most sick are going to be hemodynamically unstable which means that their ability to regulate their blood pressure and keep their heart rate within a good level is not quite as solid as a kid who doesn’t have those light fluctuations, so that was a risk factor that did stay. Also race. Race stayed. The experts did not think that race was a risk factor, and they were pretty, if you remember the stages that we used to develop GutCheckNEC, we asked experts about how relevant they thought these risk factors were and they really didn’t think race was relevant. But it was so strong in the model, I couldn’t get rid of it. So if a baby is either black or Hispanic, that puts them at higher risk. Now, the reason for that we think, we don’t really know exactly why that stayed in the model, however, we know that black babies are very much less likely to get human milk…

STEPHANIE: Okay.

DR. GEPHART: ..than white babies, and that is something we can fix. So that’s really important. As I went through these risk factors that are in GutCheckNEC, I started to separate in my mind what’s modifiable, which is what of these can we do something about and what is non-modifiable? And what I saw really was quite a few of these things were modifiable that stayed in GutCheckNEC. You can do a query online for GutCheckNEC and it will pop up the actual, you’ll be able to find GutCheckNEC in the literature. It’s published so anybody can find it. But the thing that was so interesting to me, and I’m probably going to go off a little bit here, is that the NICU NEC rate consumed a huge amount of the variants in this tool which means that if we were to say that these items explained an infant’s risk for NEC. The NICU NEC rate explains three times as much as gestational age, three times as much as transfusion. So it was so important, and what we saw in the sample, we had 284 NICUs in the sample that we used to build GutCheckNEC and to verify it, of those 284 NICUs, we saw huge variance in NEC rates. So that was pretty concerning, and it wasn’t something that I went into the research expecting or looking for really even because I had read 70 papers about NEC risk, and invariably, they would start with Necrotizing Enterocolitis is a disease that we have very few answers for. We don’t really know why it occurs, but we know that premature babies are at risk and that is the most consistent risk factor across studies. So prematurity.

STEPHANIE: Right.

DR. GEPHART: Everybody blamed it on prematurity and low birth rate, and very few said anything about—oh, and we know, actually we have about six large studies from 20 years ago that show that unit NEC rate is consistently an issue. So that is something that I didn’t expect to find, but I found, and then I was able to go back into the literature and find other studies that verified it.

STEPHANIE: Excellent. That’s a phenomenal amount of information, and I think that’s really great for parents going into the NICU to have in their minds.

DR. GEPHART: And I think, I apologize to the parents for throwing out all these terms, but I know that you’re smart, and you can handle it. Okay, I’m just going to give you credit, because if you’re NICU parents, you’re super savvy, and you know how to find information.

STEPHANIE: Right.

DR. GEPHART: But one of the things we were really concerned about with NEC is how we communicate risk to parents and how parents are really the eyes and ears of understanding what’s going on with that baby just like the nurses are.

STEPHANIE: Right.

DR. GEPHART: And they are really better situated, honestly, to be able to identify the trends in their own kid, because that’s all they’re worried about.

STEPHANIE: Right.

DR. GEPHART: They’re not worried about the delivery down the hallway or all these other things, they are the expert. So one thing I’ve been working on trying to frame this message for parents as partners on the team looking for signs of any kind of complication and I think if they know to speak up. To keep track and to speak up if things don’t seem right, and I’ve heard many physicians actually say that it’s the parents indication of concern that will make them stop, and think slower, about what’s going on with that baby. So either the nurses concern or the parents concern, because often the physician, as excellent as they are, may not be right at that bedside…

STEPHANIE: Right.

DR. GEPHART: ..at that moment when something is changing.

STEPHANIE: Right. Right And we did have an experience between Morgan’s surgeries where there was a concern in the NICU, and I can’t even remember who had mentioned it at rounds of attempting to give him—I don’t know if it was formula or breast milk—but giving him something that the surgeon had previously not agreed to—and it was a whole day of me trying to get in contact with the surgeon and making sure that nobody did anything until the surgeon had said yes or no. And he called me back from outside of the surgical room and said if anything like this happens, call me, I will call you back. So we definitely found that the doctors are very receptive, and especially when you raise an alarm, and to give people concrete things to look at for their babies I think is a wonderful tool. So thank you for sharing this.

DR. GEPHART: Absolutely! And I can say that within the next few weeks, probably by the time this podcast is released, our website will be active, and on that website are parent materials that we’ve created that are designed to help them. Anyone can download these parent materials, they can use them in their NICU, and they are basically pamphlets to talk about things to watch for, what you can do to prevent NEC, and what the signs are, and a little bit about what happens afterwards. Because you know the first-hand experience of how different your life is…

STEPHANIE: Right.

DR. GEPHART: ..coordinating care for a child who’s had NEC.

STEPHANIE: Right.

DR. GEPHART: So the long term impacts of dealing with life after NEC, I know Laura Martin was on the broadcast…

STEPHANIE: Yes.

DR. GEPHART: ..recently…

STEPHANIE: Yes.

DR. GEPHART: ..and her story has been such an important part of my development as a nurse scientist. Think beyond just the NICU stay, to think about how NEC impacts these kids forever.

STEPHANIE: Right, right, and we’ve been very lucky that Morgan has had (knock on wood) minimal residual effects. We see a little bit, but I mean, I looked at Laura’s story and they are doing a phenomenal job with him. He is a miracle.

DR. GEPHART: Yeah, Joseph is pretty awesome. I haven’t had the chance to meet him in person yet, but Laura and I collaborated to write up his story, and that paper is going to be coming out in the next couple weeks in Journal of Perinatal and Neonatal Nursing, and it is a testament to his resilience.

STEPHANIE: Right. Hers too and her husband’s and the family’s.

DR. GEPHART: It’s pretty awesome.

STEPHANIE: Definitely send me those links and we can certainly share that with everyone—direct links in the show episode notes. So I’ll ask you, now that GutCheckNEC is I’ll say standardized if that’s a correct term, is there anything that you’re looking towards in your research moving forward from GutCheckNEC?

DR. GEPHART: Well, that’s a great question, and GutCheckNEC is a risk assessment, it’s a tool. It fits on one page. We’ve just gone through a process where we’ve added to it a structured communication protocol, so if a NICU wanted to use GutCheckNEC, we would have them complete a request form, and on one side is GutCheckNEC, and on the other side is the structured communication form, which also clues the nurses, the parents for which signs and symptoms to look for and how to communicate it. So that’s easy. So that’s where GutCheckNEC is going. We’re also trying to combine it with clinical science right now, so that’s the analysis I’m working on right now, and I’ve worked with a great collaborator, Sherry Fleiner from the Inner Health to do that work. But beyond that, one of the things with research, you do a project and then you have these findings and then there is something that just kind of nabs at you and it doesn’t fit like you expected it to. And for us, that was the unit NEC rate component of GutCheckNEC that carried so much weight in the score, and it demonstrated across the 284 NICUs how variable NEC rates can be. So what we did next is we asked the question, well, why are they different? Why are the NEC rates different? And what if we did something to try to standardize prevention care? So there are a couple of main things that prevent NEC. One is human milk—very, very important starting with colostrum for oral care. The other thing is standardized feeding protocols, stewarding antibiotics, and I can kind of get into more detail there, and then there is a lot of controversy about transfusions.

STEPHANIE: Right.

DR. GEPHART: So those components, those four things plus a strategy for early recognition, we’ve put those components into an intervention we call NEC Zero, and the name of it is designed to convey that we’re hoping to get NEC to zero rate. Now, this is an audacious goal. But why set goals if they’re not crazy? This is an audacious goal, but it was not my idea. There was an editor for Journal of Perinatology, his name is Jonathan Swanson, and he wrote a paper the year that I finished my dissertation, so I think that was in 2012, it might have been 2013, and the title of that paper was “Can We Get NEC to Zero”? And if you ask scientists this and clinicians this, you will hear a lot of concern that this is an audacious goal. Like of course, we’re not going to get NEC to zero, we don’t even know what causes it. However, we do know some things that consistently reduce the risk for NEC. So human milk is, like I said, those five components, but human milk is so primary. So now we’re trying to put those interventions together, make them implementable so that people in the NICU in Delaware could implement them with the same consistency and clarity that people in Texas could do.

STEPHANIE: Right.

DR. GEPHART: So that bundle of practices is NEC Zero. So the process for NEC Zero right now where we’re at in the project is that we’ve gone through kind of an expert process of refining the recommendations. So we’ve gone through that, we need to publish that, but we’ve got them. We had a really great expert group of almost 20 people, and four of those people were parents. Laura Martin was on that group. So we’ve got the recommendations, now we’re trying to break those recommendations into implementable steps, and we’re creating tool kit products to go with the NEC Zero intervention. So pieces of that are— GutCheckNEC is definitely a primary component of that. Frankly, GutCheckNEC has the least strong evidence of any of the components in the tool kit. But it’s something that is actionable, it’s something that we can use to monitor, and we know that monitoring and evaluation is a key component of implementation success for anything. So that’s where we’re at right now is we’re working on NEC Zero.

STEPHANIE: Great, that sounds excellent. Do you have a projection of when people might see this? You said you’re looking to get it published, or the first stages of it getting published?

DR. GEPHART: Right. We’re working on refining the recommendations really in terms of publishing any sort of a recommendation list or a guideline. They carry much more weight if you have the authority of a professional organization behind them. So our strategy right now is to try to link up with some professional organizations and see if we can get some endorsements for them. So if any of your listeners are prominent members of the American Academy of Pediatrics, the National Association of Neonatal Nursing, The Academy for Breastfeeding Medicine—any of those groups would be excellent proponents. So we have the recommendations, we have some parent products that will be available, like I said, within a few weeks once our website gets done, and the other pieces of it being available, I will say that we’re testing it right now. So with the testing, there are two things we’re doing. We have the recommendations, we’re asking experts to kind of assign relative importance to the different parts of the intervention, and that score, we’re creating a ten point score for the NEC Zero adherence score, and that’s almost done. And then we’re going to look at relationships between adoption of NEC Zero practices and NEC rates, because we really don’t have a great evidence body for understanding why NEC rates differ so much NICU to NICU.

STEPHANIE: Right.

DR. GEPHART: So this is kind of an effort to add to that body of evidence of understanding why are they different. We don’t know what we’ll find, that’s the beauty of research is you start with a hypothesis, you get your data, you test your hypothesis, and you see how it turns out.

STEPHANIE: Excellent. This is great work, Sheila. I mean, it sounds like it’s really sort of simple, but I’m sure it’s not.

DR. GEPHART: That’s right! It does kind of sound simple, doesn’t it?

STEPHANIE: Or that it maybe should be simple. Hopefully it will be simple, but it sounds like parents in the NICU could really take this information and be able to be confident in their monitoring of their children and really confident in voicing any concerns that they see.

DR. GEPHART: Right.

STEPHANIE: So I think it’s great.

DR. GEPHART: The challenge is that really statistically you’re not going to have a lot of kids get NEC. Even in a high rate NICU, you’re going to have a lot of babies who don’t get it, and a few babies who do. But the outcomes can be so devastating for those few babies. So the simple part is really important, and the other question is do the interventions of NEC Zero affect other outcomes? And really, the answer is yes, because interventions are things like human milk standardized feeding protocols, antibiotic stewardship—those things are good for any baby—

STEPHANIE: Right.

DR. GEPHART: Any baby! So the good thing is that any NICU clinician can implement those things with relative confidence. Now, the big wildcard here that people don’t agree to consistently is holding feeding during transfusion. So that piece is a little bit controversial, actually it’s a lot controversial right now, but that component—the health system I’m working with has already adopted a practice to do that, so that is part of our bundle, and we’re going to keep it that way, but as we get into the literature about transfusions and NEC, it is somewhat controversial, and the evidence is not really conclusive.

STEPHANIE: Right. We actually had an episode with a Dr. Hussain from Connecticut Children’s Medical Center, and in his conversation about transfusion associated NEC, he had mentioned GutCheckNEC. So it does seem to sort of all circle around.

DR. GEPHART: It does, and the thing with GutCheckNEC is that transfusions is a risk factor. So in our structured communications protocol, which is coupled with GutCheckNEC, understanding the context of if a baby has been transfused in the last 48 hours, that’s a trigger.

STEPHANIE: Right.

DR. GEPHART: So those two pieces put together do heighten our awareness of what a baby could be at risk for.

STEPHANIE: This was a really great conversation, Sheila. I really appreciate you sharing all of this. A lot of this, even though I have done a lot of research myself is pretty new in this context to me. So I think it really sort of simplifies some really complicated information. So I appreciate you sharing this with us.

DR. GEPHART: Well, it’s been my pleasure and honor to try to simplify things. I have to do that for my own brain. I will say that this is an audacious goal.

STEPHANIE: Right.

DR. GEPHART: People look at me cross eyed when I say NEC Zero. They think what are you talking about? Is that possible? But I will tell you that there are a handful of NICUs across the country who are getting to zero with their NEC rates, and they are models.

STEPHANIE: Right.

DR. GEPHART: The things they consistently do are they prioritize human milk feeding, it is critical, they use standardized feeding protocols, they start feedings early with trophic feedings, which is just small feedings, and they generally have a fairly specific approach to handling transfusions and feeding. So those things are very important. But the human milk is essential.

STEPHANIE: Right. Right. So before we wrap up, is there anything else with regard to NEC or your research moving forward that you would like to share?

DR. GEPHART: I appreciate that offer. I would like to just emphasize how we do have evidence. We have pretty good evidence about things that prevent NEC. Now, does that mean that we’re going to prevent every single case of NEC? I don’t know that yet.

STEPHANIE: Right

DR. GEPHART: But we have pretty good evidence, and one of the things that’s pretty controversial in our country right now is the use of probiotics. I don’t know if any of your experts have gotten into that realm yet, but-

STEPHANIE: We’ve touched on it and they’ve sort of said the same thing you did that it is sort of a controversial topic because if I’m saying this correctly, the FDA regulations and the procedures around that, but I know in other countries that they have seen reduced rates of NEC with probiotics.

DR. GEPHART: Right, right, and that is one thing that I would say is certainly controversial. There is one of the NICUs that I’m aware of that uses probiotics. They’ve been at zero for like six years. One of the issues we have, I’ve spent a lot of time lately understanding the strength of evidence for all of these components that prevent NEC, we don’t have randomized control trial evidence for most of them. But we have 24 randomized control trials that show a decreased risk for NEC with probiotics—thousands of babies—thousands, and even some people will say the preparations are different in these different studies, there is a recent study that actually pulled the results from just a certain type of probiotic and they still showed benefit. So the issue here we have in the United States is that probiotics are marketed as a food product. And so as a food product, their regulation is different with the FDA than as a medicine.

STEPHANIE: Right.

DR. GEPHART: However, I think parents should know this, frankly.

STEPHANIE: Right.

DR. GEPHART: I think this is one of those opportunities for shared decision making in the NICU where a physician, a nurse practitioner could bring up this issue with parents to say hey, look, we have this opportunity to give your baby probiotics and this is what is available, this is the evidence, this is the risk. See, this is shared decision making.

STEPHANIE: Right.

DR. GEPHART: You go and you have a test, your physician or nurse practitioner would say this is how you have to decide what’s important, but I think NICU parents are very, very smart people, and I think we’re at the point in the United States where it is time to open up the conversation about probiotics to make it a joint decision versus an “oh, we’re just not going to do it”.

STEPHANIE: Right.

DR. GEPHART: Because we have such strong evidence, it’s just that most of those studies were not done in the US.

STEPHANIE: Right.

DR. GEPHART: However, there are many things that have been developed in other countries that we can adopt. The other issue is a standard formulation, a safe, standard formulation. There was a case of sepsis a few years ago that was very concerning—that’s severe widespread infection in a premature baby. That is the risk. So that’s what the clinician would say to the parent. But it’s very, very small risk if you look at all of the benefits.

STEPHANIE: Right.

DR. GEPHART: So I’m not going to pretend we should be using probiotics, but I do think that parents need to start asking for them. They need to start asking why are we not using them…

STEPHANIE: Right.

DR. GEPHART: ..because we have such strong evidence. So we have actually stronger evidence for probiotics than we do for antenatal steroids or Surfactant. Those are common, important, consistently delivered interventions for NICU babies. But you have risks, and that’s the issue.

STEPHANIE: Right.

DR. GEPHART: So we’re at a place for decision making.

STEPHANIE: Right. And actually ironically, or maybe not ironically, I know that my boys did get probiotics, and that was five years ago that they were born.

DR. GEPHART: That is ironic.

STEPHANIE: We had an anomaly with Morgan. Nobody can sort of figure out why he got NEC when he did, but we did do all of the sort of standard care practices, probably even advanced practices for five years ago, and we had one that got it and one that didn’t. So…but knowing now what I have learned is they were doing the very best practices at the hospital where my sons were born. So I think we were at the right place at the right time and had the best outcomes that we could hope for.

DR. GEPHART: That’s awesome. That’s awesome. Did you feel like with Morgan that they were able to recognize it pretty fast and act?

STEPHANIE: I really think they did. I think that is probably the key that saved his life because he developed NEC at four days old and had really only had two trophic feeds, and it was colostrum.

DR. GEPHART: Okay.

STEPHANIE: Actually after the conversation that I had with Dr. Hussein, I went back and looked and he did not have a blood transfusion within that timeframe, so he sort of, it’s my understanding he’s just sort of an anomaly, but that’s why we’re looking to the researchers to piece together all of these things. That’s sort of what drives me is he doesn’t easily fit into something that could have, should have, would have, maybe been different and that seems to be the riddle that’s NEC.

DR. GEPHART: Sure. There’s an analogy for this it’s called, a wicked problem, I don’t know if you’ve heard of that term, but you were at my talk when we were in Connecticut,…

STEPHANIE: Right.

DR. GEPHART: ..and I talked about the wicked problem and how it’s like a forest fire, it’s not easily solved. There’s a lot of pieces to it,…

STEPHANIE: Right.

DR. GEPHART: …and I think NEC is really the neonatal wicked problem.

STEPHANIE: Right.

DR. GEPHART: So I’m so glad that Morgan got care so quickly and got such excellent care. And that’s the thing is that clinicians, physicians, dieticians, lactation consultants, nurses, nurse practitioners, they want to do the absolute best for your baby.

STEPHANIE: Right.

DR. GEPHART: Nobody has ill will. This is a team effort, but they’re human, and that’s the thing with wicked problems…

STEPHANIE: Right.

DR. GEPHART: ..is that you have humans operating in these complex systems, and trying to deal with things and what we know with solving wicked problems, like forest fires, it’s a combination of boots on the ground, and standard protocol.

STEPHANIE: Right.

DR. GEPHART: So it’s the strength and protection of both approaches that really is effective, maybe not taking away completely the wicked problem, but at least confronting it.

STEPHANIE: Right.

DR. GEPHART: So I’m so glad that Morgan got such great care.

STEPHANIE: Thank you. We are too. We are too. And like I said, I think it goes to show that I’ve heard multifactorial used and all kinds of big words with regard to NEC, and just knowing that there are researchers out there like yourself who are trying to distill this information and simplify it for parents and practitioners as well that this is one of the ways that I think we will get to zero NEC. That’s our goal as well. So I really appreciate you talking to me today, and would love to talk to you again, and any of these links when the website is up, would love to share. So thank you!

DR. GEPHART: Absolutely. It would be my honor to share those. It’s been fun to be with you.

STEPHANIE: Thank you. You too.

Direct links to more information about the GutCheckNEC can be found in this episode’s show notes.

In closing, I’d like to share a few thoughts about today’s conversation with Dr. Gephart.

Simply put, information is power. I believe that a risk assessment like GutCheckNEC can empower parents in the NICU by distilling complex medical information, and presenting it in a simplified, and actionable way.

Morgan was diagnosed with NEC at four days old. My husband and I were still in shock, and hadn’t even begun to come to terms with our twin sons’ unexpected and traumatic birth, when Morgan was transferred to another hospital and underwent emergency surgery.

In the days and weeks that followed, I diligently called two NICUs every morning after rounds for updates on our two babies. I took copious notes to share with my husband on weight gains, Oxygen levels, and whatever else each nurse made mention of during the phone calls. And during our daily visits, we spoke with each baby’s nurse personally about all of the day’s happenings.

Since then, I’ve learned a lot more about prematurity and NEC. And if we were in the same situation today, I would have a lot more questions to ask about all areas of our babies care. In retrospect, I realize we didn’t know what questions to ask. We took our lead from the nurses, and we looked to them to tell us what we needed to know.

GutCheckNEC presents parents the opportunity to learn what questions to ask about NEC. Objectively. And, proactively. And, it can help open up the dialogue between parents and caregivers in advance of potential crisis.

Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org/donate.

If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you!

Additional Information

You can make a donation directly to Dr. Gephart’s research in NEC at the University of Arizona College of Nursing by visiting https://www2.uafoundation.org/NetCommunity/SSLPage.aspx?pid=341

You can become a donor to the College of Nursing by visiting http://www.nursing.arizona.edu/giving/leave-your-legacy

Copyright © 2015 The Morgan Leary Vaughan Fund, Inc.

The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns.

The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

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One comment on “Ep. 8: GutCheckNEC—A Comprehensive Overview of Risk Assessment with Dr. Sheila Gephart
  1. One of the many goals of The New York Milk Bank is to level the playing field when it comes to health disparities among socioeconomic and race populations. Human milk is species specific and is an important factor in reducing NEC rates in our NICUs. We will strive to make pasteurized donor human milk (PDHM) available to all micro-preemies and we will lobby to have PDHM covered by insurance companies in New York. We hope to set a model of care that will be duplicated across every state.