Ep. 12: Year in Review—The Epilogue to Speaking of NEC

{Speaking of NEC} album artIn Episode 12, Stephanie Vaughan, Co-founder and President of The Morgan Leary Vaughan Fund, goes from Speaking of NEC: Necrotizing Enterocolitis host to guest as media broadcaster Jeff Bradbury turns the microphone on her for a retrospective. Stephanie reflects on the podcast series itself, and her experiences as a mother-turned-prematurity-and-rare-disease-advocate-turned-podcaster. She also looks towards the future for The Morgan Leary Vaughan Fund.

Copyright © 2016 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network.

JEFF BRADBURY, HOST: Hello everybody and welcome to Speaking of NEC. My name is Jeff Bradbury, your host for this afternoon. I am here today to wrap up this first season of our Speaking of NEC podcasts. I am interviewing today the host of our show, Ms. Stephanie Vaughan. Stephanie, how are you today?

STEPHANIE VAUGHAN, GUEST: Good. How are you?

JEFF: I’m doing so well. It is so nice to have you on this side of the table. How are things with you?

STEPHANIE: Things are very good. Thank you.

JEFF: This is a little bit of a role reversal. Stephanie, we’re going to talk today all about the podcast, what it was, what it is, what your hopes are, what your dreams were, and where we’re going to be going. And we’re going to talk today a little bit about Morgan’s Fund. And really we’re going to look at the last year of Morgan’s Fund and see where it has not only helped out thousands of families but where we’re going to be going in the future with it. So if you’re out there listening, thank you so much for supporting our show for the last 12 episodes. We really enjoyed having you. And of course, if you’re listening to us for the first time, check us out on iTunes. You can subscribe to this and all of our episodes, and you can find out all the great information about Morgan’s Fund and how you can be a part of this journey on morgansfund.org.

STEPHANIE: Thank you, Jeff.

JEFF: Steph, let’s talk about the very beginning here. You and I had met when I was trying to start my own podcast to help out families of premature babies. And I met you through Twitter. And we did an episode much like this where you shared your experiences. For those who are new to this series, why don’t you give us the Cliff Notes version of how you got to that point. Why? Why Morgan’s Fund? What was the genesis of all of this?

STEPHANIE: Okay. My twin sons were born in October of 2010. And they were born at 28 weeks, one day gestation. And they were barely over 2 and a half pounds a-piece. And as if that wasn’t shocking enough in and of itself, at four days old, Morgan was diagnosed with NEC, which is Necrotizing Enterocolitis, and was transferred from the hospital where he was born which is Bridgeport Hospital in Connecticut. He was transferred to Yale for a consultation, which turned into a subsequent surgery and the loss of about 20% of his small intestine. And the day after his surgery, a woman came up to me in the NICU who was talking about some research that the hospital was doing in collaboration with, I want to say, maybe six or seven other NICUs looking at biomarkers for children that were either officially diagnosed with or assumed to have NEC. So she asked us if we would let him be in the research study.

And it was sort of a no-brainer for my husband and I. We graciously said, “Of course.” And the question that I had for her sort of before we signed anything was, “Morgan has a twin brother at Bridgeport. Do we need to be concerned? Is this something that’s genetic? Is it contagious?” It was such a shocking diagnosis and experience within a very short period of time, a couple hours really. So we were naturally concerned about his brother. And she said, “I don’t know. That’s the information “that we’re looking to get in this study. And at this point, we don’t know why one baby gets it and one doesn’t.” So that sort of sealed the deal to have us allow him to be in the study. And then it actually sort of planted the seed with me that this was a crazy experience and we wanted to help. And we weren’t finding any information online. We weren’t finding any national association or really clear information. So we took that ball and ran with it.

JEFF: And talk to us a little bit about those early days. I mean, as far as going through all this stuff, was there at that point in time a lot of information online? Was the Google search healthy on what NEC was? I mean, I know one of the reasons for doing a show like this was to provide information for families who are going through this now. But talk to us a little bit about that journey. When you’re hearing the word NEC for the first time, did you run to the library? Did you run to a Google search? Were there people at the hospital with you to educate you? What were those thoughts like, and what were those first few days and moments like?

STEPHANIE: Well, I think we had a really good experience with our surgeon. When we got transferred Morgan had had‚—well, I’ll go back a little bit. He was having his second feeding, and of course they test every three hours before a feeding if there’s any residual in the baby’s stomach. And his was, they said, tinged green. So obviously that shows some sign of infection. And they ran X-rays for him bedside and then they sent these up to Yale and they said, “No, we definitely want to transfer him. We definitely want to see him.” So then in talking with the surgeon, he explained that they were going to go in to do an exploratory surgery and that they were going to be looking at every inch of his intestine, looking for any perforations, anything that was wrong. And if they didn’t find anything, they would just sew him back up and he would be out in a relatively short amount of time. If they did see something, then they would deal with it as needed, and the surgery would probably run a little bit longer‚—hour, hour and a half. So we understood what he was going into the surgery for. And then when he came out, the surgeon very clearly talked to us about what he had found. He found one area had perforated and there were five areas in a very small section that were about to perforate. So they did do the resection, and he was going to have a colostomy bag, or ostomy bag because it was small intestine. And he talked to us about best case scenario was in six to eight weeks, he would be reconnected. He didn’t give us any indication that he would come home before he was reconnected. I think previously that was sort of the trend. But they said by the time he comes home, he will be “normal” [meaning] without the ostomy bag or anything like that. So I think we had clear communication with our surgeon. But then going home and looking online at one o’clock in the morning, there was really nothing. And one or two of the books that I saw, I feel, really sort of glazed over the severity of the disease. It was sort of like they would hold feedings, and some babies get it, some babies don’t. And there didn’t appear to be any urgency in the literature that I saw.

So one of the things that we wanted to do was be that place that someone at one o’clock in the morning could Google and see‚—or with the podcast actually hear a doctor give clear information that’s relevant. You know, doing any kind of Google search you don’t know what’s relevant and what’s not, what’s accurate and what’s not.

JEFF: As far as finding support groups or people out there in similar situations, what did you find? Were there Facebook groups? Were there Mommy and Me’s? What was available, or what is available out there?

STEPHANIE: I think there’s a lot more now than there was. I think we are now one of three organizations that are dedicated to NEC in the United States. When I was looking, I saw one Facebook group, I think, at the time. And most of the things that I saw posted were “who’s doing research? Where can I donate money? Isn’t anyone doing anything?” That kind of‚—you know‚—just lack of general knowledge. I mean, it wasn’t like cancer or heart disease, lung disease where you can go and just type it in and there’s support groups in every state or something. There just really was a lack of information.

JEFF: And talk to us a little bit about your decision to create Morgan’s Fund to be one of those support groups.

STEPHANIE: Basically after the initial surgery, Morgan did very well. He really didn’t have any setbacks. He had his surgery, his first surgery, the beginning of November. And by mid-January he was reconnected and came home three weeks later. And because of the amount of intestine that he lost percentage-wise was very small. And if you’re going to have it in a good location, he really hasn’t had a lot of residual from the NEC in terms of Short Bowel Disease or anything like that. He does not fall into that category. And again, we had sort of all along talked about somebody should really be doing something about this. This is really scary. And we later learned how easily we could have lost him with this disease. So I think out of thankfulness and sort of that, you know, we don’t want this to happen to anybody else‚—and there was nothing else‚—we decided to create our own organization. I had been in touch with the March of Dimes and wanted to donate through them and found out that it was really a general fund donation. You couldn’t specify where your money would go, which is perfectly acceptable. And they do donate to NEC research on occasion. But we really felt like this needs some attention, this needs some funding. And we wanted to do whatever we could, and maybe raise a little money, raise a little awareness. And it really seems to have taken off definitely with a life of its own and is much bigger than I thought it was going to be, which I think is a good thing.

JEFF: Well, tell us a little bit about that. When you say it’s much bigger, how has it grown? And most importantly, what kind of results are you seeing because of Morgan’s Fund?

STEPHANIE: Well, with this podcast, I mean, it was certainly nothing that we would have thought we were going to be doing when we were organizing the charity. It really wasn’t even on our radar. But talking to you and doing the interview, it was like this could be a really easy communication with parents that are dealing with this. Again, they’re easily accessible online. You can listen to them in your own home. Now it’s on iTunes. And you can pick the information that you’d like to listen to, and you get different doctors’ perspectives on different areas of concern. And we’ve seen‚—our listenership, I think, was over 1500 when I last checked. And I’ve actually gotten some emails and some donations from people that have found us online through Google searches and stuff. So I think for a minimally known disease, we’re gaining some traction. And like I said, there’s other organizations now out there and we’re networking with other prematurity support groups and organizations and on rare disease side as well. So I think we’re making some reasonable headway.

JEFF: You know, I remember talking to you first about starting this show when we were talking about who was going to be the host. And I forget whose idea it was, but next thing, you kind of got the idea that you were going to be the host of this, and you were going to be talking to people. And you were going to be the one trying to not just share your story but share their stories. And first of all, I’ve got to tell you, I’m extremely proud of you and all the great work that you’ve done with this. What have you learned about going from mother to podcaster? Tell us about those experiences.

STEPHANIE: This one honestly was really tough, I think. I assumed that you‚—having experience with media broadcasting‚— was going to be the host for me. And I’d give you some notes, and make some connections, and have you be the voice of the podcast. And I think your recommendation was that because it was my experience, and my family’s experience, I knew what other parents would be wanting to ask, and wanting to know. And in sharing my story with other parents that have had babies with NEC and had good results, and obviously devastating results and loss, again what they’re looking to know, what they’re looking to find out, and just have that one-on-one connection with some of these doctors and guests that we’ve had.

JEFF: And what advice or what recommendations would you give other families, other organizations out there that want to tell their story through podcasting?

STEPHANIE: I would say if you find a great partner, that’s really beneficial. I think that you’ve really pushed me in a good way outside my comfort zone. And this was really all about trying to get, like I said, accurate, good, solid information from the experts and sort of having a platform to do so I think gained us some really wonderful guests because they want to educate parents, and they want to educate the public. And they’re just as invested in curing this disease, and preventing this disease, as we as parents want them to be. But it’s really sort of finding those connections, and sharing with other families, and the public, that we see the need, the doctors see the need, and no one is less disinterested than the doctors that are in the NICU every day.

JEFF: And if you haven’t had a chance out there to watch or to listen to some of the episodes, they’re absolutely fantastic. And you know Steph, listening to the first couple episodes and listening to the last few episodes, growth of a podcaster has been really, really cool. And we’ve talked about that over the last few months of just how easy it is and how easy it sounds. People ask me about starting TeacherCast and staring my podcasting career, and I always say if I have a question about something or if I’m interested, I’ll bring somebody onto the show as an expert. And then not only am I learning it, I’m asking the questions that I want. But other people can hear it as well through the recordings. I’m curious as to your selection of guests. Did you have a series of people you wanted to bring on? Or did you bring on people who maybe you were searching for information. Podcasting can be a little bit of education. Podcasting can be a little bit of edu-therapy. How did you find this experience, getting a chance to talk to not only doctors but mothers, family members? What did you learn over the last 12 months about NEC and maybe about yourself?

STEPHANIE: I definitely think I learned a ton about NEC, much more than I had known even before we had started this. First I looked to our Scientific Advisory Board. And sort of how that was built was organically through contacts with the doctors who had treated Morgan. And what I asked them was, if you were going to recommend the top person to talk to about this disease, the person that you think is going to make the biggest difference in this disease, who would you talk to? And then basically I just cold called them like a salesperson and said, “I’m interested in starting this organization, and we’ve applied for a 501C3. We’ve got all our ducks in a row. And we’d like to ask you to be on our Board.” And really everyone that we asked said yes. And then when we said we were going to be doing this project, I think four of our doctors have been on the show. And sort of again, organically through them and through other connections with preemie parents and other organizations, I started to see one doctor would refer another who would refer someone else that they had worked with. And it was sort of a little bit maybe less NEC research specific, and more preventative, and the different areas of prevention with NEC, you know, sort of an expert in feeding, an expert in nutrition. We talked to Prolacta, who manufactures human milk‚—human milk-based human milk fortifier. So it’s sort of like all these critical areas that even if your child isn’t at risk for NEC would be beneficial for you to know as a NICU parent. And I think that was probably the biggest lesson that I learned is that all of these things are so interconnected. And anything that you can do to prevent NEC in the NICU really can only benefit any baby. And all the things that if it were to happen to us now, I would probably feel much more confident asking questions, and knowing what questions to ask. And that’s what we want parents out there to know.

JEFF: And I think that is the most important thing is knowing what the right questions are. I always go back to those wee hours when our triplets were born premature and you don’t know what to ask, and you don’t know what not to ask. And everyone’s very, very supportive. And it really is nice having that support group. And I know through this podcast series and just through all the hard work, you’ve been able to take the organization of Morgan’s Fund and really, really turnkey it into so many positive things.

Tell us a little bit about the last 12 months. I know you’ve had funds coming in, I know you’ve had a lot of donations, I know you’ve got people you want to say thank you to. Talk to us a little bit about what’s been going on in the last 12 months with the calendar and how people have helped you help other people.

STEPHANIE: Well first, I would definitely like to say thank you to Dr. William Petit and the Petit Family Foundation. They really took a chance on a brand new organization and a brand new, I think, concept in philanthropy and medical research fundraising, to fund this series. So I think that they definitely deserve great thanks and applause for backing us. And to be honest, when we met with Dr. Petit to get the grant funding, he said that he had to explain to his board, who selects who gets these grants, what the disease was. So it was sort of lucky for us that he was a physician by trade and had actually encountered NEC in his internship, I think, or rotation. So again, it’s a little known disease, little known charity, and they really took a big risk donating their funds to us. So we’re definitely thankful for that. And I’m thankful for all of the guests that we’ve had because again, organically one person leads you to another. And I think our exposure to them is great. And then their exposure to us as well. And then separately we’ve had a series of fundraisers, and we’ve been able to bring up Dr. Neu, who’s highly regarded as a NEC researcher, up to Connecticut Children’s [Medical Center] for a translational research seminar. And he came up, and spent the day, and toured their facility, and talked to their doctors and, I think, gave some input on some patients. And that was a really great experience. That was in December. And then we’ve gone to several conferences, and made connections, like I said, in the realm of prematurity and then also in rare disease. One of our Scientific Board members and his colleague, Dr. [Adam] Matson and Dr. [Arvin] Bundhoo at Connecticut Children’s actually helped us write a paper for the National Organization of Rare Disorders, which is NORD, and helped us get NEC recognized as a rare disease on their website. So now if you were to look on NORD, you would see that. You would see us as a support group for them, or the organization of the disease on the rare disease site. And that’s a whole community of people who have unusual diseases or little known diseases, and they’re really banding together to get funds for research for all of them. I think there are 7,000 rare diseases in the US. And sort of, we’re small in number, but when you get all of the rare diseases together, you’ve got a really powerful voice.

JEFF: So Steph, looking towards the future here, I know that Morgan’s Fund is going to be branching out to several different new categories. What are some of the things that we can look forward to in 2016 and beyond from you?

STEPHANIE: Well, we’re definitely looking to turn the content that we’ve developed in the podcast into some printed educational materials for parents. That’s one of our big goals this year, and I think that we’ll be looking for funding for that. And we’ve actually been invited to the SIGNEC [U.K.], which is a Special Interest Group for NEC in the UK, to their annual conference, which is going to be in September in London. We’ll probably be going to the Preemie Parent Summit, which is the Preemie Parent Alliance, which is a national organization of prematurity groups that’s, I think, maybe 35 groups all together. And they have an annual summit, so we’re looking to go back to that summit this year.

And probably some things next spring. We had the NEC Society, I think, back in September. And they are looking to launch a NEC-specific conference in 2017. And while we were on the show, we were invited to participate in that, so we’re looking forward to that. And I think we’ve got some other things that are sort of in development that really aren’t public yet. But we’re really excited. We’ve got some great ideas, and just looking for funding to launch these things.

JEFF: And for those of you who are new to the show, Steph, where can we reach out and learn more about Morgan’s Fund and participate and donate?

STEPHANIE: You can go to morgansfund.org, and there’s a donation page, and then we’ve also got the podcast and other information on our Board of Directors, Morgan’s story‚—you can read his whole story‚— and see some of our events. We’re also on Facebook and Twitter, and those are morgansfundorg at Twitter and Facebook. So you can follow us on that. And I think that’s it for social media.

JEFF: And I know that we definitely want to hear from you. I mean, if you’re out there and you’re listening to the podcast please take a moment and either email us here, find us on Twitter, leave a review on iTunes, leave a five-star rating on iTunes. We want to hear from you. This podcast, Morgan’s Fund, all this great support is here for you. And whether you’re a parent or a physician or somebody in the medical practice, we want to join together to help fight this disease. So Steph, in wrapping up here

I want to say thank you. It’s absolutely been a pleasure getting to know you over the last 12 months, creating this show, producing it knowing that the work that you and I are doing here has helped out

thousands of families, thousands of children. It is absolutely nice to know. I want to do something here we didn’t really talk about, but at the end of every show, Steph, you always do a little‚— I don’t know if monologue is the right word for the end of it‚—

STEPHANIE: Yep.

JEFF: And I always love editing and listening to those because they’re very, very personal‚—You talk about how the interview connects to your family, or your story, or something personal to you. I think before‚—or I should say I think instead of me signing everybody off, I’m going to invite you to take the last couple minutes of this show. Take a deep breath. Sign us off for the show. Sign us off for the season. And again my name is Jeff Bradbury. You can find me on teachercast.net and reach out at TeacherCast. It’s been a blast producing this show. Stephanie, thank you so much, and the floor is yours.

STEPHANIE: Thank you. I think this has been a really great opportunity for Morgan’s Fund to really be able to have a platform, like I said, to reach out to the doctors, to make some connections. And really my whole purpose, and our whole purpose, was so that no family has to go through what we went through at one o’clock in the morning on November [3], 2010. You know, it was just a really scary time. And one of the things that I clearly remember was walking Morgan down to the surgery and the nurse sort of holding him up to us and saying, “Give Mommy a kiss,” like he was a five-year-old running off to school. And our biggest concern from that moment on was what are we looking at five years? What are we looking at ten years? What are we looking at for him when he’s an adult? Is this really going to have long-term impact on him? And we’ve been so lucky that the impact that it’s had physically for him has been, I’ll say, pretty minor in comparison to other children. But the impact that it had on me to want to do something, to want to help, to want to move this cause forward and, like I said, to prevent any other family from having that sort of experience and especially to lose a child. We were so close and really didn’t even realize at the time how close we were. So I think this has been a really exciting opportunity, and one that sort of I wouldn’t have thought that I would have wanted to jump into. But it’s really when you’re sort of pushed outside your comfort zone that you make some big decisions, and those have a ripple effect. And people have started to find us, and want to work with us, and want to help us, and want to help the cause that we believe in, and that I believe in. So I really appreciate all of your help with this. I think it’s been fantastic. And if anyone wants to visit Morgan’s Fund, it’s morgansfund.org. A donation or an email, or share your experience. I am always willing to talk to anyone publicly or privately, just a phone call, a Facebook message. We just want people to know that there are people out there who’ve had this experience, and we want to help any way that we can. So thank you.

Copyright © 2016 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.

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