Ep. 7: The NEC Society — Perspectives from Parents of Infants Impacted by NEC

Jennifer Canvasser

Jennifer Canvasser. Photo courtesy of Jennifer Canvasser.

Episode 7 features Jennifer Canvasser, Founder of the NEC Society, and Dr. Samir Gadepalli, NEC Society scientific advisory council member. In 2014, Jennifer founded the NEC Society, a non-profit organization dedicated to protecting fragile infants, after losing her son, Micah, to Necrotizing Enterocolitis.

During the episode, Jennifer and Samir share the findings from the NEC Society’s survey aimed at characterizing parent perceptions of the practices and events related to their child’s development of NEC. They discuss:

  • The design and development of the NEC Society’s online, international survey—research specifically focused on parents and their perspectives on NEC,
  • The survey’s five areas of interest: education, awareness, support of human milk, information provided and information providers, and parental empowerment in the NICU,
  • The survey findings including the demographics of the participants and their babies—all of whom were diagnosed with NEC,
  • The importance of raising awareness about NEC in the general public,
  • The NEC Society’s partnership with the Best for Babes Foundation® and the Miracle MilkTM Stroll, and
  • The NEC Society’s recently announced conference, Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes, in partnership with the University of California at Davis, and set for 2017.

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 7 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 guests will be Jennifer Canvasser, Founder of the NEC Society—whose mission is reducing the incidence of Necrotizing Enterocolitis through education, outreach, research, and advocacy, and the NEC Society scientific advisory council member Dr. Samir Gadepalli.

During our conversation, they will discuss in varying degrees:

  • The design and development of the NEC Society’s parent survey—research specifically focused on parents and their perspectives on NEC,
  • The survey’s five areas of interest: education, awareness, support of human milk, information provided and information providers, and parental empowerment in the NICU,
  • The survey findings including the demographics of the participants and their babies—all of whom were diagnosed with NEC,
  • The importance of raising awareness about NEC in the general public,
  • The NEC Society’s partnership with the Best for Babes Foundation® and the Miracle MilkTM Stroll, and
  • Plans for their upcoming conference Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes in partnership with the University of California at Davis.

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

Hi, Jennifer and Samir. Thank you for joining me. How are you guys?

JENNIFER CANVASSER, GUEST: Great. Thank you.

SAMIR GADEPALLI, GUEST: Great. Thank you.

STEPHANIE, HOST: So let me have Jennifer take a few minutes and introduce herself. She’s got a very compelling story with her son Micah, and has done some wonderful work based on a tragic situation with Micah, so let me have you share your story.

JENNIFER, GUEST: So, my name is Jennifer Canvasser, and in January of 2014, I founded the NEC Society. It’s a nonprofit dedicated to the prevention of Necrotizing Enterocolitis in fragile infants. And, it was because my son Micah passed away from complications related to Necrotizing Enterocolitis when he was 11 months old. And so really, the organization is dedicated to reducing the incidence of this devastating disease and making progress to bring families, clinicians, and researchers together to collaborate and make improvements on protecting babies and families.

STEPHANIE, HOST: Excellent. Thank you. And Samir, can you talk a little bit about your experience with NEC from the surgical perspective, and how you came to know Jennifer and get involved?

SAMIR, GUEST: Yes. So, I’m Samir. I’m one of the pediatric surgeons at Mott Hospital (C.S. Mott Children’s Hospital). I actually had the privilege of taking care of Jenn and her kids, and that’s how I met them. In fact, her husband Noah rotated on our service when he was an intern, and so I got to know the whole family in different aspects. For me, my experience with NEC really is related to the fact that as a pediatric surgeon it’s one of the things that you see a lot of, and it’s a very devastating disease and somewhat frustrating because outcomes are fairly miserable and you just wish there was a better way of handling this. There really hasn’t been a huge difference in‚—depending on who you ask‚—30 or 50 years. And so as a junior faculty member, one of the areas I had primary interest in was in Necrotizing Enterocolitis, and ways to approach it in a different way, because whatever we’d been trying for 30 or 50 years definitely hasn’t worked. I shouldn’t say that. I would say there’s been some progress, but the reality is it’s not as much as you would like it to be. And so, one of the opportunities that came up was when Jenn called me one day and said, “Hey listen, I was interested in starting a society focusing on NEC, empowering and educating families.” I said, “This is fantastic. This is exactly what I was looking for.” And so both of us kind of talked over the phone, and I sent her various ideas that I was thinking about and ways that I was hoping to approach it, different than it’s been approached before in terms of collaboration, and empowerment, and bringing different ideas together. And so, both of us talked about ways that we can get other people involved, not just clinicians but also researchers, parents. And she did all the legwork in terms of the NEC Society, and getting all these various members across the country on board who are all experts and are invested in solving the problem of NEC. And so, both of us wanted to try to invigorate the group and get them to start focusing on ways to work together and collaborate, so one of the things that we realized is one of our opportunities was to try to get a survey going and also to‚—how do you get a bunch of researchers to work together is research. That was a chance for us to motivate people in our group, and to start thinking of ways to approach the disease that hadn’t been done before.

STEPHANIE, HOST: That’s great. So, can you talk to me a little bit about how the survey was actually designed, and maybe the major components or question topics?

SAMIR, GUEST: Sure. What we did was we wanted to survey all the family members because we had access to over 200 parents across not just this country, but internationally, who all had an experience with NEC, various different types of approaches, different experiences and outcomes. We wanted to survey both demographics and see what kind of population we had, and also look at what their experience in the NICU was in terms of what kind of education they were provided, how much empowerment they had in decisions, who provided the education, what did they know about it beforehand, what kind of awareness existed, and so forth. And then we wanted to see if there was something that we could learn from and we can focus on in the future for our society to work on. I created a design, but then I showed it to Jenn to see if this is something, one, that’s easy to take and feasible and can be done within a few minutes and wouldn’t be inconvenient; it wouldn’t create any sort of PTSD (Post Traumatic Stress Disorder) for families who’ve been through a very traumatic experience. But also, we wanted to make sure we highlighted areas that we thought the families could access, and so there were quite a few open-ended questions within it. We didn’t want it to be cumbersome but it get enough data that we could use. Sheila Gephart (PhD, RN, from the University of Arizona College of Nursing) is someone who has a lot of experience using qualitative data and looking at Necrotizing Enterocolitis, and she played a valuable role in terms of the information we were trying to collect. Dr. (Jae) Kim, from (The University of ) California, was also very useful because he has a ton of experience treating patients with Necrotizing Enterocolitis. Between the four of us‚—Jenn, myself, and those two‚—we created the survey. We went over it with our scientific advisory council to make sure that everyone was in agreement with the type of questions we asked. Then we just sent out the survey via email, and our response rate was amazing. Pretty much everyone who got the‚— they were invested in it, and that’s one of the reasons why they decided to join NEC, I think, the NEC Society, was because they wanted to make a difference and let their voice be heard.

STEPHANIE, HOST: Right.

JENNIFER, GUEST: I think it was really empowering for the families who had been through these traumatic experiences that Samir is talking about to be able to have their voice heard, like he just said. They found it very empowering to share their experience with the hope of helping future families.

STEPHANIE, HOST: Right. Right. So can you talk to us about what you found in the study specifically?

SAMIR, GUEST: Sure. I think in order to really understand the study you have to start out with the demographics of the population. I think Jenn has the numbers right in front of her. I was trying to bring it up on my computer. But basically, it’s highly educated, mostly Caucasian, but college graduates who were part of this society, so they were online, and they had an interest and investment. They already had a lot of education and background. When you look at the study, you kind of think, okay, so here’s a population that has a lot of exposure and experience in life and should probably know a lot about NEC. This is a disease that affects a lot of premature infants. But then when you look at the data, when we went through it, it was kind of like pretty sad in terms of what it showed in our different healthcare systems. It wasn’t just us, as in United States, or us in Michigan or us in anywhere. It was internationally. It shows you how not-so-good we are at educating families and empowering families. Jenn, you want to comment?

JENNIFER, GUEST: Yeah, I just want to add something else that’s very interesting is that nearly 90% of the children of these parents who responded were born after 2010, and so this is a very recent occurrence.

STEPHANIE, HOST: Right.

JENNIFER, GUEST: So and so this wasn’t 15 to 20 years ago. This is happening now—in NICUs now. So I think it’s important to note that.

STEPHANIE, HOST: And do you want to talk to any of the specific measurements that you saw, or any topics that were maybe better than others, or ones that specifically need more improvement?

SAMIR, GUEST: We focused on five primary areas that we thought were important for us to hit. One of them was education. One of them was awareness. One of them was support that was provided in terms of using human milk or breast milk. One of them was regarding who provided information and what information they were given. And one was related to empowerment within their NICU experience. We found that they were predominantly‚—the kids were mostly 28 weeks gestational age, and 90% of them were less than 1800 grams (3 pounds 15.5 ounces). The majority were treated in a pediatric unit within an adult hospital, 55% of them, but about 25% of them were at a free-standing children’s hospital. And then the geographic distribution was pretty diverse, from all regions of the United States. About 12% of them were international. Many were treated at multiple centers, transferring to a higher level once NEC was diagnosed. They were diagnosed at median age of 31 weeks, so about 3 weeks of age. And the survival rate was about 64%, and about 71% had surgery. And of those survivors, about 44% of them had short bowel syndrome. Of those who passed away, about 60% of them were in the first month of life. So, it’s kind of a heterogeneous group, but pretty much the major outcomes that you would expect with NEC were seen.

STEPHANIE, HOST: Okay.

SAMIR, GUEST: About 15% of them worked in the medical field, and so when we looked we said, okay, so they may know a lot about the disease, but we found out that about 40% of the parents were informed only after the baby was diagnosed with Necrotizing Enterocolitis. And 23% of them felt that no information was actually provided about NEC. So, most of them were not satisfied in the amount of information that was provided. Only about a third of them thought they were pretty satisfied. These are much smaller numbers than we had hoped for. In support for breast milk, there was a huge variability. About 84% of the parents met with a lactation consultant after the baby was born, and about 60% on the first day. However, about 10% of them were never offered an opportunity to meet with a lactation consultant, and only 5% of the patients met with a peer counselor for lactation support. So, I think there were some areas that we did okay, but there were a lot of areas that we can work on.

STEPHANIE, HOST: Um-hmm.

SAMIR, GUEST: About three-fifths of the babies received donated milk, but many of them didn’t even know about the existence or weren’t even told about it. About 30% of them felt they felt pressured to give their baby formula. The surprising thing is more than half of the parents, about 54%, felt that their child’s Necrotizing Enterocolitis was preventable. And many of them, of those who developed short bowel syndrome, felt this way.

STEPHANIE, HOST: Oh, wow.

SAMIR, GUEST: About 56% of the parents suspected that something was wrong prior to the diagnosis of NEC, and all of them notified the medical staff except for one of them, but in less than half of the instances was anything ever done. And you have to realize, this is broad. It’s not like we picked on one institution or one region of the country…

STEPHANIE, HOST: Right.

SAMIR, GUEST: …or we picked on a population that was not well educated or had poor socioeconomic status. This is after 2010, and this is a population that’s well educated, that has access to Internet and is willing to provide feedback, and is an empowered community.

STEPHANIE, HOST: Right.

SAMIR, GUEST: This doesn’t even reflect the population of NEC.

STEPHANIE, HOST: What would you want to say to the parents that are listening, questions that they should be asking, and things that they should be looking for when they’re in the NICU?

JENNIFER, GUEST: Right. We actually have, if you just Google, “10 Things All Parents of Preemies

Need to Know.” When we developed this, we really had NEC in mind, but you can generalize it to any fragile infant, or any hospitalized child, for that matter. But specifically for babies that are at risk for NEC, this “10 Things All Parents of Preemies Need to Know” is very helpful, and it talks about asking questions and being involved in the care team, the importance of an exclusive human milk diet. We often hear a lot of families say, “Well, my baby did get breast milk,” but the breast milk is often fortified with formula, and we know that formula does increase the risk of NEC. So just making sure that they’re involved, and their voice is being heard, and they’re developing a primary care team. There’s some things that I hope people will check out, again, “10 Things All Parents of Preemies Need to Know.” Those are kind of the biggest things, and one of the other goals that we have for the NEC Society is to raise awareness for families who are not in the NICU right now, because even in my own personal experience there are many families who aren’t in the NICU now, but they’re going to end up in the NICU five years from now, or whatever it might be, or they have friends that are. Necrotizing Enterocolitis is one of the leading causes of overall infant mortality in the United States. It kills about 500 infants each year, but practically no one knows what NEC is until it happens to them.

STEPHANIE, HOST: Right.

JENNIFER, GUEST: And we’re really hoping that we can work to change that and raise awareness just in the general public, because I think when you raise that awareness in the general public there’s more at stake and more people are invested in making a change and protecting these babies and can put more resources and finances and more energy into preventing this disease and reducing the outcomes.

STEPHANIE, HOST: Right. Yeah, we couldn’t agree more. And I think you guys have taken a wonderful avenue. Ours is probably the flip side in looking at how we can help advance research through funding and that area. I’ve been on your website and have been following you, and I think you guys are doing wonderful things.

JENNIFER, GUEST: Thank you. And same to you.

STEPHANIE, HOST: Oh, thank you. Anything that you would like to share about other things that you are doing, or other points study related or not, please feel free.

JENNIFER, GUEST: Do you want to mention anything else about the survey and the research, Samir, before we get into other topics?

SAMIR, GUEST: In terms of the survey, we presented at different forums not for recognition per se as much as just awareness and creating that there is a need here, that partnering with parents and partnering with decision makers is not commonplace in medicine in general, but yet this is an area where we think it’s super key to do, because I think that access to donor milk or access to human milk is a priority in a lot of these babies, and there’s probably a lack of awareness overall. And improving quality in our NICUs is going to be through better communication and teamwork with families, early education engagement of families rather than just waiting until a disease happens, because I think a lot of parents don’t quite realize how much power they do have, and how much control they do have over the outcome of their child.

JENNIFER, GUEST: We are hoping that we can eventually get this published and share more of the results and the information and just get this information out there and use it to help better the practices in other hospitals for other families. So we’re not done, basically, with the work. We’re hoping to continue the momentum and continue to use what we have learned to improve practices. And then, the other thing I wanted to mention is over the past couple of years, we have partnered with and organization that’s fantastic. It’s called the Best for Babes Foundation. They have dedicated what’s called a “Miracle Milk Stroll” to raising awareness about the life-saving power of human milk for fragile infants. Studies have shown that an exclusive human milk diet for fragile babies can reduce the incidence of NEC by nearly 80%, yet many, many NICUs aren’t providing donor milk, and many institutions are not telling families how important it is to provide human milk. And so families are in a very difficult situation when you’re having a premature baby, and if you’re too overwhelmed to pump or you’re at a different hospital than your baby and you can’t get them your own milk, how important donor milk can be. Basically, we’ve partnered with the Miracle Milk Stroll with the Best for Babes Foundation to, one, raise awareness just through the general public, and it’s really been amazing to see the media coverage of this event, because it’s become international with hundreds and hundreds of locations all around the country and even internationally who together stroll in honor of these babies and raising awareness about the life-saving power of human milk. So one is to raise awareness in the general public. It’s also to increase human milk donations to milk banks. Because again, these babies need donor milk if their mothers aren’t able to provide it. And then, it’s also a fundraiser. So, it’s raising funds to help, again, protect these babies and making sure that they are getting access to the life-saving milk that they definitely need. So that’s one thing that we’re really honored, and so proud, and excited to be able to do, so we’ll be doing that again. It’s in the spring, kind of around May of each year, so we’ll be doing that again next year. It’s called the Miracle Milk Stroll with the Best for Babes Foundation. Another project that we have just started working on is the first conference on Necrotizing Enterocolitis in the United States. We just received an award from PCORI to host this conference. It will be in the spring of 2017 in conjunction with UC Davis in northern California. And it’s going to be a collaboration, again, between families, clinicians, researchers, and others who are dedicated to reducing this disease, and it’s going to be focused on prevention and just improving outcomes, so we’re really excited about that. And, Samir, please feel free to add anything you might want to about the conference.

SAMIR, GUEST: Sure. Stephanie, consider yourself invited.

STEPHANIE, HOST: Thank you. Yes, congratulations.

SAMIR, GUEST: I think it’s an exciting first step because I think just getting people together to talk, and share all their ideas, and collaborate is going to be a huge step in the right direction. And this is our chance to put everyone on the same forum, on the same table, and just say, “You know what, these conversations need to happen.”

JENNIFER, GUEST: Right.

SAMIR, GUEST: I think a lot of the issue right now is the funders are on one page, researchers are on one page, clinicians are on one page, and the families are nowhere on the table. I think this is kind of a loss at how our system works right now. And this is our opportunity to bring everybody together and talk about the different ideas and what they’re working on and say, “Hey, this has hope. This has potential. We should start focusing on this as a group and have larger clinical trials.” This is what they did with cancer 80 years ago. This is what we should be doing with all other diseases, and yet NEC is not even on the map. And so, finally, we have a chance now, and PCORI has given us a chance to fund us to make this symposium happen. We’re planning on doing it in 2017 in northern California, like Jenn mentioned, and our hope is to get all different parties together‚—researchers, clinicians, anyone invested in NEC‚—to talk about the various issues, whether it’s related to prevention, management, outcomes, way to improve those. I think it will be a great chance.

JENNIFER, GUEST: And I was just going to clarify really quick, PCORI stands for‚—and I want to make sure I’m saying it right‚—Patient-Centered Outcomes Research Institute, for people who are not familiar with PCORI awards.

STEPHANIE, HOST: Well, congratulations again. I can’t imagine the work that went into trying to get that grant, and I think it’s a wonderful thing. And we will definitely be there, and support in any way that we can.

JENNIFER, GUEST: I think that it’s just important to know that people like your organization and our organization exist, and we are trying to improve things for families and for babies, and that there is hope that things are hopefully going to be improving, and that there is a lot of room for improvement. I think that’s one key for hospitals and clinicians and NICUs, what have you, to understand is that there is a lot of room for improvement.

STEPHANIE, HOST: Right.

JENNIFER, GUEST: And I think that’s one thing that this survey really opened our eyes to. Parents have been saying, “I didn’t feel empowered. I feel like my baby’s NEC was preventable,” and now we have this information that really shows that, yes, there’s a lot of room for improvement, and we have these organizations out there that are working on doing just that.

STEPHANIE, HOST: Right. Right. And I was amazed when we first started, at finding how many researchers and doctors have dedicated their careers to this disease.

JENNIFER, GUEST: Right.

STEPHANIE, HOST: And unfortunately, no one outside of that tiny community knows about it, or knew about it.

JENNIFER, GUEST: Right.

STEPHANIE, HOST: So just like you said, getting everyone in the same place at the same time, I think will be a phenomenal step forward.

For more information about the NEC Society visit: necsociety.org. A direct link can also be found in this episode’s show notes: http://necsociety.org/

In closing, I’d like to share a few thoughts about today’s conversation with Jennifer and Samir.

As the parent of a surgical NEC survivor, two things struck me about the findings of the NEC Society’s parent survey. First, the findings of this survey are extremely relevant because the parents’ perspectives are so very timely. As Jennifer pointed out, survey participants were parents of babies born in 2010 or later. So, these parent perspectives reflect current NICU practices as they relate to NEC.

The fact that “54% the parents felt that their child’s Necrotizing Enterocolitis was preventable” is not only heart wrenching but also, in my opinion, wholly unacceptable.

The second critical point that Jennifer made is that NEC prevention needs to start with the general public: before a baby who’s at risk for developing NEC is born, before they and their parents enter the NICU. We need to create an awareness of NEC among this next generation of parents. We need to create opportunities for education about NEC before they find themselves in the position of being the parents of a baby who’s at risk for developing NEC.

I recently met a new mother of twins who were born at 34 weeks. She delivered her babies at a prestigious children’s hospital, and they spent two weeks in the hospital’s nationally ranked NICU. And, she never had heard of NEC.

We’re fast approaching the tipping point. In the U.S., NEC is the second leading cause of death in premature infants, and the 10th leading cause of infant death overall. (Sources: UC Davis Health System and CDC/NCHS). We need to create an awareness about NEC through which we can educate and empower parents, and advance research for a cure.

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 resources:

NEC Society. Perspectives from parents of infants impacted by NEC: NEC communication in the NICU. Poster presented at: Vermont Oxford Network Annual Quality Congress. 2014 Nov 1-2; Chicago, IL.

About Jennifer Canvasser:

Jennifer Canvasser has served on the Ecology Center’s children’s health, first food and environmental health campaigns since 2010. She completed UCSF’s Reach the Decision Makers Fellowship program in 2011, with a focus on reform of our national chemicals law. In 2014, Jennifer founded the NEC Society, a non-profit organization dedicated to protecting fragile infants, after losing her son, Micah, to necrotizing enterocolitis. She is a regular contributor to The Huffington Post on parenting, health and food justice issues. Jennifer completed her undergraduate studies at U.C.L.A. and earned her Master’s in Social Work from the University of Southern California with a focus on community organizing.

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.

Tagged with:
Posted in Podcast
One comment on “Ep. 7: The NEC Society — Perspectives from Parents of Infants Impacted by NEC
  1. The New York Milk Bank provides human milk to New York State Level III NICUs and Regional Perinatal Centers so that the risk of NEC is decreased. We plan to provide education about this awful and preventable disease through our website, conferences, and social media. The sooner info about NEC is in the general public, the sooner it can be eliminated from the NICU. Thank you Jennifer and Dr.Gadepalli for this revealing and informative study and for the work you do to educate and support families. #Give.Nourish.Thrive.