Hello Friends 👋
We are very excited to bring you an interview that many of you have requested. It is our sincere pleasure to welcome to the show the amazing Jenn Canvasser, founder of the NEC Society. She is an inspiration to Daphna and I, and we are so happy to dedicate this episode to Jenn's son Micah and amplify the voice of The NEC society.
Enjoy!
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Short Bio: Jennifer Canvasser founded the Necrotizing Enterocolitis (NEC) Society after her son Micah died from complications of the disease just before his first birthday. Jennifer completed her undergraduate studies at UCLA, earned her Master’s in Social Work from the University of Southern California, and is currently pursuing a doctoral degree in sociology at UC Davis. She has served as the project lead on three PCORI Engagement Awards and is proud to be part of the Chan Zuckerberg Initiative's Rare As One Network.
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The transcript of today's episode can be found below 👇
Ben 0:54
Welcome Hello, everybody. Welcome back to the incubator podcast. It is Sunday, Daphna. How are you?
Speaker 1 1:03
I'm doing well. We've had a fun week of recording, haven't we? That's a lot of great guests, and today is no exception.
Ben 1:13
That's right. We've been we've been meaning to speak to our guests today for some time, and so we couldn't be more excited to have Jen on with us. For people who are not familiar with who Jennifer canvasser is. Jen founded the necrotizing enterocolitis society after her son Micah passed away from complications of the disease. Just before his first birthday, Jennifer completed her undergraduate studies at UCLA earned her master's in social work from the University of Southern California and is currently pursuing a doctoral degree in Sociology at UC Davis. She has served as the project lead on three PCO ri engagement awards, and is proud to be part of the Chan Zuckerberg initiatives rare as one network. Jen, thank you so much for being on the show with us today.
Unknown Speaker 2:03
Thanks so much for having me.
Ben 2:05
So can you tell us a little bit about your story? And how that led you to the point right before I guess, founding the next society?
Speaker 3 2:18
Yeah, for sure. So my twins were born at 27 weeks gestation. So that's how that kind of story starts, as I was expecting to have babies that were born either at term or very near term, I was doing everything, quote, unquote, right. And then I was suddenly in preterm labor. So they were born weighing just two pounds each and for the first six weeks of their life, they actually did quite well, and they were stable, and mostly making the progress they needed to make. And I thought they would be out of the NICU soon, and maybe even around the same time. But mica suddenly developed necrotizing fasciitis was about again, his six weeks old, weighed about five pounds and was very stable, doing well, and became critically ill really, really fast. She ended up with multiple bowel resections. And she went into renal failure, lots of complications from the disease. Thankfully, we were able to eventually bring him home, he got through that initial, really dire period, and he was sent to the PICU, he recovered, not fully like he ended up in end stage renal disease, actually. So that was one of the reasons that he really suffered from the complications of neck, he ended up with short bowel syndrome. And in stage renal disease, he had liver disease from his exposure to TPN. But long story short, he was back home, we were getting ready to get him to a kidney transplant. And when we had the twins both at home, it was like a dream come true. At this point, I thought Mike had overcome his most difficult battles, and that I knew he was going to face some challenges in life. But again, I thought that he had survived the disease. And he developed pneumonia. And you know, he can imagine a baby like that doesn't have a whole lot of reserve. And so he was readmitted to the PICCHIO. And then just right before the twins first birthday, we lost Micah. And of course, it was a completely devastating experience for us to have to walk away from our son and kiss him goodbye for the very last time. And ever since that day that I walked away from mica for the last time. I've just worked desperately to keep him in my life. And after he passed away, I was just, you know, finding ways to honor Him to give back he received out he and his brother received a lot of blood transfusions during their time in the NICU and PICU as we I would hope blood drives, we started giving library to bring families together through books and I did a lot of different things to honor my goods again, keep him in my life. And as the months went by, I started really reflecting on how he died from those complications of necrotizing colitis that it wasn't necessary. Really, the renal disease that took his life for the liver diseases really like it went back to that, really the kind of the root cause of his death was necrotizing vasculitis. And I looked around and I was like, Well, I was working on neck. And of course, I found some amazing individual researchers, and clinicians, but there wasn't one organization bringing everyone together. And so that's why I found it, I kind of looked around, and I didn't see what I was looking for. So I created what I couldn't find. Wow.
Speaker 1 5:29
I mean, it's, it's, it's emotional, obviously, for us to hear your story. And I can just imagine, you know, we, we all have that feeling of this baby's done it, right, they're gonna leave the unit. They've made it and then to get so sick near what you anticipated to be, you know, the end of an admission? Gosh, it's such an initial trauma. Right. And then it sounds like, obviously, you had a lot of difficult interactions with the medical system before Mike passed. And it certainly sounds like you have been honoring his legacy in such an incredible way, you know, parents have always moved medicine forward, right, by advocating for their children or children that are no longer with them. But what you have done is is really a model for how families engage with medical professionals, and you didn't just stop it, like the clinical right, like you have been really interested. And even, you know, in the basic science and the research and funding. So how what, what is your background that you know, you know, allowed you to be so proactive?
Speaker 3 6:56
Yeah, so I am fortunate that, so my undergraduate studies were in developmental psychology, and then my master's degree was in social work and community organizing. And then after my master's program, I worked as a community organizer for a nonprofit environmental organization. So I really feel like for about a decade, I gained a lot of experiences working in nonprofit leadership and advocacy roles. And so I was basically able to kind of take all of that learning that I did, while I was working as a community organizer in the environmental movement, and apply it over to the neck and the NICU community. And what I am most proud of, I mean, I'm proud of the neck society for a lot of reasons. But one of the reasons I'm most proud of our organization is the way we're able to foster authentic collaboration between our team members, that are patient families, and our clinicians and our scientists, we've really worked together as one team, and there's no, you know, I'm in this position of power, and you're, you know, inferior adult, like, No, we are all working as partners, towards our vision of a world without neck.
Speaker 1 7:58
I mean, we feel that like, anytime you see something come out from the next society, or you guys are presenting something, or you have one of your, you know, fundraising events, like that's what it I mean, it screams community, but in a way that is, like you said, so inclusive, you know, and I just think that there are so few organizations that are able to do that. And you were able to do that in conjunction with medicine, right? You know, something that medicine has been trying to do for decades for generations to engage patients and families. And I still am in disbelief, but your your, your vision, I think comes across quite clearly in everything that you guys do.
Speaker 3 8:52
I also want to just say, like how important it is that we give people hope, because I think it's, you know, neck is such a devastating disease and condition and even with like my own trauma, and everyone has this trauma around this disease that we are working on. And yet, we still like to focus on the hope. And then, you know, effort towards prevention. And it's like really inspiring people to really dream bigger and think broader about how we can build, like you said, a more inclusive community and constantly working towards that vision.
Ben 9:27
You mentioned something that was actually quite interesting. You mentioned how you realized slash understood that the passing of mica was due to secondary complications of NDC, despite the fact that it may have been removed from that initial insult. I'm wondering, how long was the process for you to come to that conclusion? Because it is something that even for clinicians, sometimes you see many people not making that connection? What was that process like for you?
Speaker 3 9:54
Thank you for asking that question. I've never actually been asked that question. Because you can imagine And when he passed just before their first birthday, it was like, well, he died from with a system organ failure or he died because he had end stage renal failure. Really, no one was talking about necrotizing enterocolitis. And to be totally honest with you, I was looking at his death certificate. And it had a long list of all the things, and at the very bottom was necrotizing. vasculitis. And that's when like, that's kind of the moment that I realized that no, like, all the other stuff was just kind of secondary, like you just said, like, that's not necessarily why he died, he died because he developed neck when he was six weeks old. And then this cascade of other events happened.
Ben 10:44
And as a parent, as you then embark on this journey to, I think, number one, I want to commend you for the courage to dive into this pathology, because having gone through what you've gone through, I think it would have been perfectly reasonable to say I don't want to hear from I don't want to hear these three letters ever again in my life. But then you do this work, and then you enter the clinical realm. What is your feeling when you find out how little we understand of this disease, as a parent, and you say, because you can be in the NICU and you say these guys know a lot of stuff and look at them, they have opposite machines. But then you you, for people who are studying neonatology, you're like we don't know very much.
Speaker 1 11:20
And we talk even about neck, right? Like we know, we know what to do we know what to expect. And there's so little the
Ben 11:27
first thing that will every textbook will say the pathophysiology of neck is still unknown. Yeah, we still haven't figured that out. And even the management of neck is up for debate. So what is your feeling as a parent, after this traumatic experience when you see this and you're like, Whoa, like, this is really uncharted territory.
Speaker 3 11:43
So I love your question. Thank you so much. And there's a few things I want to say. The first is, I want to just acknowledge, and this isn't just speaking for myself, but I think any parent who intentionally like puts himself back into the situation of basically like, re traumatizing and reliving the trauma is, is I just think it needs to be acknowledged. And so I thank you for one, just acknowledging that, that this is a painful place to be pretty much all the time, like I hurt all I mean, I obviously am able to navigate my grief and my loss, I think pretty well, I'm healthy, I'm happy, I'm able to nurture my living children that are physically in my arms. But I like my heart hurts constantly, every day, every moment all the time. And a lot of it is triggered by the work that I do. So I don't want to come off as though this isn't like difficult work to do. It is very emotionally difficult. And still, I'm able to navigate it because I'm very fortunate in a lot of ways and privileged and, and so forth. But specifically in regarding to what it was like to begin to understand that this is a poorly understood disease, I clay reaction initially, because this was early on in my my grief journey. You know, of course, I didn't really understand it when I was in the NICU. But after after he died, I spent a lot of time reading articles and so forth. And I felt frustrated and maybe a little bit of anger because oftentimes in the NICU I felt shut down and disregarded and kind of belittled and not listened to. And it's like, you know what, what I was wondering like, what I wanted to know is if you don't know very much like Why couldn't you just like Hear me out and listen to my questions and concerns which were actually pretty valid now that I'm reading what is known and not known about this disease. And so that was kind of my initial reaction. And now like now that I'm here, and I have the next society, and it's really the next society is my way that I continue to nurture and Mother mica like, Now, it does give me a sense of purpose and drive and really compels me to keep going like it's not acceptable that we just don't know much about this disease. We don't know why or how it happens. We don't know which babies are going to get it. We don't know how severe it's going to progress, how quickly it's going to progress. And I just find that is completely unacceptable. And I'm here to help do something about it.
Speaker 1 14:03
I think your story is, is incredibly powerful. Well, for a number of reasons. One, I mean, you're powerful, right? Like you can you can sense how much you love. Mica right? And you like you said you're continuing to Mother him through the work and that comes across that the next society is is your baby, right for lack of a better word, and I can't I don't know how you continue to do it every day. But I am grateful that people like you exist and are are willing to, you know, put themselves through it again every day so that other people don't have to that is just I mean humanity at its most vulnerable. Right? And what I find most interesting about your story is we encountered neck unfortunately right and in all of our units in And even at discharge for or we've we have babies who live, and we have babies who don't live. But Micah, like you said, made it through the NICU admission, and there are so many stories that leave our NICUs. And we don't always know what happens to those babies after the fact. And yours is an exceptional example of all of the complications. We know about short bowel? Sure, of course we do, we see that we discharge babies homeless, who are feral all the time, into the outpatient world into the PICU. World. And so, as neonatologist, I think it's so important for people to hear your story in particular, because of how we counsel families, how we set them up for success at discharge, even when we feel like the admission has been a quote unquote, success, because the baby, you know, survived from this initial insult. And and can you tell us a little bit about just the way that you guys are connecting families, because, you know, first and foremost, that is a mainstay of what you guys are doing supporting families, in addition to this tremendous, you know, clinical and research work that you're doing? Well,
Speaker 3 16:23
actually, so the next society's main purpose is, unfortunately, not directly to support families, our mission and our what we do is to advance neck research, education and advocacy. And so I see the huge gap that is the emotional and support needs of families. And I do think we serve a little bit up like that need, but that is not why the next society is here. And I think it's a huge gap that needs to be filled. But we are doing it. That's not like we exist to build a world without NEC and to prevent NEC and to really drive the research, make sure that clinicians and families have the education that they need to improve outcomes that, you know, advocacy is taking place at both the state, federal and even the local levels. And as we do all of that we are providing resources to families. And we are connecting families. Again, that's not our main like vision or goal or purpose. But that is happening. And we are building a sense of community where families no longer feel alone, and we have resources for families who have recently been diagnosed with who have recently been tragically bereaved and have lost their child to this disease. We have resources that we've put together that we wish someone would have given to us when our baby was diagnosed, and when our baby tragically passed away from this disease. And, you know, we do have a private closed Facebook group where families can get together. But we, you know, we don't provide direct, you know, mentoring or any type of psychological support to families, but that is desperately needed.
Speaker 1 17:50
Well, I think you underestimate what that does for families, right to have to have a police that has the name of this disease process and is working towards making you know that better? Yeah, I think you underestimate just how empowering that is for families just to see the work that you were doing. And the the resources you have are actually quite comprehensive. So I think there's a real phenomenal resources,
Speaker 3 18:19
more needs to be done. I feel like it's it's shot. And you know, we're not doing enough because we can't, we're still really small organization. But I do i i Thank you for like calling it out that families feel less isolated, because we're here. Like there is a community. Absolutely, that didn't exist before the next society. And for that I'm grateful. I just know that that the families because I hear from these families as they're being diagnosed and struggling in the NICU and PICU. And they're reaching out and they're in desperate need of more help than we can provide. And it's but it hurts and it's frustrating as an organization because we are we are still limited. And we are small that we can't do more for the families. But we're working on it for sure.
Ben 19:01
I guess my I'm very curious about your your journey. And because I'm fascinated by what you've been able to accomplish. And, and to me, I'm, I want to go back a little bit to when you are looking at the massive burn that neck is neck research, how difficult it is to conduct you come across 10s decades of research work that have led to not very much how do you as a parent, who is not a physician, and I'm not saying this in a negative way, then say, well, I can help right? Because even for us as fellows, when we are assigned where say, hey, find a project you're interested in, you look at certain areas of research, you're like I'm not touching like nobody has figured this out in years. And I'm staying away. I'm curious to where is the energy coming from saying no, even though this has been a dead end for so many years? I feel like we're going to have room to do something here.
Speaker 3 19:58
Yes, thank you. I like I'm just kind of a naturally audacious person, I like to do crazy things like run marathons and do things that other people just find absurd. But I think one of the reasons we're able to do this is because we bring together really talented, dedicated, incredible people. So this is the next idea is well beyond me like, we have built an organization of people and community who are who share my dedication to this vision and who are just as committed as I am to building a world without neck. And I think by bringing so many people with diverse experiences and backgrounds and skill sets together, we are making progress and we are moving those mountains that haven't been moved ever.
Ben 20:46
I don't know if you're familiar with with the CEO of United Therapeutics, Martin Rosenblatt have she's, she's a fascinating individual who found herself in a position where I think it was her daughter who was sick, and there was no treatment for pulmonary hypertension. And she basically, I was I'm not I listened to a Tim Ferriss podcast, I'm not an expert. But she basically went to the library started digging through papers and found a therapeutic option. And with an I think the drive of the parent is something that is in nature difficult to surpass. And I think that's why I think we're fascinated by your story by what you will have the opportunity to achieve, because that, in my opinion, is where great things happen. And so if anybody is interested in that story as well, I mean, I highly recommend Tim Ferriss show and with Martine Rosenblatt and and not wasn't bad, Rothbart, I'm sorry, Ross bland. But I completely I completely agree that there's going to be great things.
Speaker 3 21:45
And if you look around, like you just said a lot of especially the rare disease community it is it's it is the patients, it's the patients who are stepping up in the families are stepping up to advance the work that really hasn't been able to happen. So I agree. I think, you know, patient families have a really powerful voice and unique perspectives and are driven like no other to make progress.
Speaker 1 22:08
I mean, I think what you even on a logistical task that you've taken on, we can hardly get, you know, two doctors on at a time to record with us. So I mean, how do you guys manage to, you know, to move the needle forward, you have to be getting together frequently and asynchronously to keep doing the work with people all over the country. Even International? Yep.
Speaker 3 22:32
I've just been really astounded by how many people believe and share a passion for this work. I think I've been very fortunate and lucky yet, whatever you want to call it that people from the beginning and have really shown up and have remained dedicated. I mean, people like Jay Kim, for example, has been with me since I reached out to him. He was actually I was reading one of his articles. After mica died. And I randomly reached out to him. I didn't know Jay. And I just said, I reached out and I said, Hey, my baby recently died from NAC. And I just want to say thank you for doing this research, because I know it's desperately needed. And he emailed me back. And so we started a conversation. And that's when I really began to realize that very little was no one was really working on that. And so Anyways, long story short, like Jay, and other people like Jay have been with me from the very beginning, believing in this organization believing in this in this work and this vision, and they keep showing up years later. And it's just amazing. I think they'll continue to stay with this organization. And so we I hope we eventually put ourselves out of business and shut down because we want yeah, and then
Unknown Speaker 23:38
something else,
Ben 23:39
you'll have the same fate as the March of Dimes, right? So people tend to forget that March of Dimes was made for polio support and and polio went away. And now they're focusing on our babies and the best story you could hear. Absolutely, it was fixed. I'm very curious about your perspective on the fact that neck research is something that I think before the next society was very fragmented, right? When we talk about working in silos, it's probably the definition many people doing many different things around the country. And I think the next society is helping coordinating all these efforts. But as someone who was not a researcher, when you embarked on this journey, what was your appraisal of how everybody was sort of working in their own corners?
Speaker 3 24:20
I just really didn't have any tolerance for it. I just, I don't tolerate egos. I'm a very direct, you know, open person i. And so I just started reaching out to people that I thought would be, you know, helpful to work with. I brought them no, no, I brought them all in and like we are, you know, I made it pretty clear that we were going to be collaborating working together and that wasn't going to be like competition, that we were going to nurture this organization and this community. I think people really bought in and believed in this work. And since then, we've created something called How to Host like an all in meeting and it's on our website, but it's it's talks exactly about that is how you get people to come out of their silos and to really collaborate in an authentic way and, and how we can actually move the field forward by doing so.
Ben 25:12
You've mentioned that the goal of the next society is really to work towards a world where without neck based on, I think this is a, this is a great goal. And no matter how idealistic it might be, I think it's it is it should be the goal. But if I press you on this a little bit, do you think that the world without a world without neck is something where we are so good at management of maybe antibiotic stewardship, maybe feeding regimens that we truly never encounter neck? Or do you think it is a world where we actually are very good at detecting neck so that it becomes almost a non event where you pick up on it, face it and then move on?
Speaker 3 25:50
Exactly. So in my kind of ideal brain, I hope that we're able, so we have the buyer repository, which if you've ever talked to Misty, good, Misty is leading the net buyer repository. And I really believe that that is going to be how we, you know, get to a world without neck I think, you know, probiotics and human milk and different, you know, feeding, feeding protocols, and so forth. Of course, those are really helpful and important. But what I hope we could eventually do is find a biomarker or find a way that we can detect what is going to trigger neck eventually, and we intervene and we stop it before it ever happens. So that is in my like, in my kind of ideal brain of how we eventually build a world without neck that it never even begins because obviously once it starts, it's really difficult to intervene into there's no cure for this disease.
Ben 26:35
But it's not completely utopic. It's not a utopia, either. Like we do have all the tools potentially to make this vision to effectuate this vision. So there's no reason why it wouldn't be possible.
Speaker 1 26:47
Yeah. Well, you you're you've alluded to things like the buyer repository, but tell us, you know, what are the other major pillars of kind of the the work that the next society is doing right now?
Speaker 3 26:58
Yep. So we have the buyer repository, which we're very proud of. We've done a lot of our own research and studies such on the long term outcomes of NAC that really was not even looked at, you know, past two years of age prior to the NEC society's work on it. We've recently developed a prioritized research agenda. And in terms of our kind of education arm that we do, we have our conferences that we host, we have actually a probiotic toolkit that will be launching in the coming weeks, we have a webinar coming up at the end of May. So we have resources on probiotics, we have a lot of different educational resources on our website, both for clinicians and for patient families, so that they can learn about the most protective and the risk factors that are associated with this disease. And then in terms of our advocacy, we're constantly advocating for increased equitable access to human milk. And actually, the state we I have a set an assembly member here in California, who is going to be working on it, she is already working on it, she's going to be introducing soon a resolution to declare may 17th, as neck Awareness Day in the State of California, which is really exciting to see other people beyond the NICU talking about necrotizing enterocolitis in a way that is hopeful and helpful.
Ben 28:11
There's, I mean, I think you can look at the calendar and you can see that every day is something's day. And I think while some of these things are less important than others, can you explain why in the context of neck or in the context of diseases that we don't understand very well, it is important to mark a point in time on the calendar as saying we need to bring awareness to this issue.
Speaker 3 28:32
Yeah, for sure. I believe that, you know, the reason why it's so important with neck is that too many families learn about neck for the first time when their babies actually been diagnosed. And which I think is unacceptable. And beyond that, there's still too many clinicians who are caring for babies that are at risk of neck who still don't understand in practice, what's you know, ways to most protect infants against neck and so I just feel like there's so much progress that we can do by declaring may as tech Awareness Month and may 17 is neck Awareness Day and really allow us to elevate the conversation around this disease to highlight the devastation that affects how it affects families, and then also to inspire hope and to let people know that yes, this is a traumatic and devastating and really scary thing. But there there are solutions there are ways that we can improve and here's what we're doing and how we can do even more if you join us
Ben 29:25
this episode is proudly sponsored by rocket to meet Johnson recognized Johnson is dedicated to the research and development of nutrition products that help support baby development at every stage including an extensive and female portfolio for premature and low birth weight infants learn more at HCP dot meet johnson.com And I think they are in my opinion, I can you can you can divide the world into two categories. You have people who are actively involved in neck research and I think that's one category then you have people like me, for example, who are very sympathetic to to the pursuit of of eliminating neck but we're not. I'm not really doing anything about it these days. So what can people? I'm being very honest. But what can people like me who are noticing that it is neck Awareness Month and that it is neck Awareness Day? Like what can we do aside from maybe reposting something on Twitter? What are the practical steps that people can take? So
Speaker 3 30:18
I'll just say, you know, what is good for neck prevention is probably good for all NICU babies, right? Like what's so I think we should one like broaden our mindset is like, Oh, I'm going to do this, you know, to help prevent neck or to hit you know, whatever it is. But really, probably whatever you're doing to help prevent neck is good for the most of the NICU population anyway. So I think that's important to know. And then in terms of what kind of everyday NICU community members can do. Yes, social media is great and helpful. But I would love for more people to join our email list, subscribe to our blog. Our blogs are not just about necrotizing colitis, they're a lot about a lot of different topics related to the NICU experience and journey. And again, a lot of our educational resources and information is not just neck specific. It's really specific to best practices and protective care for the whole for all NICU babies, again, like the same thing. We have webinars on a lot of different topics. May's topic is probiotics, our probiotic Toolkit, which you may say is more neck focused, but I think it's a little bit broader than just neck. And again, we have a lot of different webinars and recordings and so forth on our website that go well beyond neck. And same thing with our conference that we have coming up in August. While it's, you know, it's our next symposium, it's specific to NEC, we're going to be covering a lot of different topics that are relevant to other, you know, experiences, and then Nikhil,
Ben 31:44
yeah, and so the next symposium will take place from August, August 28. To from from the 20th to the 30th of August this year. And it's taking place in San Diego, California, at the Loews Coronado Bay Resort Hotel. And I think there's even opportunities for people who are interested in participating in the discussion to submit abstracts for presentation. And I think, I think by the time this episode airs, the deadline may have passed, but I'm sure that I'm sure that if somebody sends something, I'm sure you'll find myself
Unknown Speaker 32:14
speaking in their band or behalf here,
Unknown Speaker 32:16
if you said, you heard it on the on the incubator
Unknown Speaker 32:19
podcast.
Ben 32:21
As I crafted this sentence, I realized, oh, shoot, this is not
Speaker 3 32:26
good. It's all good. We we try to be really responsive to our community. So we try to be flexible. Go ahead.
Speaker 1 32:34
Well, in that vein, you know, we have a lot of trainees listening, and a lot of trainees who may not have decided on their career path. And so how do you what do you think is the and you've alluded to it a little bit, but really the the future of this research the future, the next society, I guess, if you had all the funding in the world, what would you what would you be doing
Speaker 3 32:59
with the next? Oh, my gosh, that is such a fun question. So I would love to do more advocacy work, and really bring in more dollars for research with that advocacy work and also pass legislation that provides more benefits to families that are in the NICU so that families aren't worrying having to really worry about child care and work and really what they their other responsibilities other than being at their babies bedside. So anyways, I would say that's a big one. And in terms of inspiring young investigators, and trainees, I think that the field of necrotizing fasciitis is so exciting, we actually just launched a mentorship program through our research incubator. And if we had all the funding in the world, we would continue to grow and expand this research incubator that we recently have launched. And the mentorship program basically, matches people who are kind of maybe interested in going into NEC but aren't really sure with are the members of our scientific advisory council, who are established leaders in the field. And we bring those two together. And I think magical things can happen by doing that, but yeah,
Speaker 1 34:07
well, I'll tell you, I came Admittedly, I came from a training program that that did a lot of work in neck and nutrition. And like Ben, I was like, I'm not sure I can do it. I can't but you make it seem possible, I think, for young investigators to enter this area, this discipline that seems so robust, like there's a lot of work happening but there's still so much work to be done.
Speaker 3 34:34
Absolutely. I feel like that all the time. There's we have so much going on and yet we still have some so far to go and so I think that could be really exciting for people who are just you know, beginning to decide what you know which path to take in the field. So please come join the next society.
Ben 34:52
I think you are you've created through the next society and through your your your your active involvement in the next Safety, paradigm shift in how we think about research for complex diseases, and how it is crucial to involve families in the discussion when it comes to research objectives, prioritizing focus areas and so on. Can you talk a little bit about what you feel like parents can bring to the table during those discussions?
Speaker 3 35:23
Yeah, absolutely. I'm a big advocate of involving patient families from the very beginning in any initiative or project that we're working on. So it's the that phrase, nothing about us without us. I really believe in that. And so if you're going to be doing something that you know, is relevant to NICU families, then a NICU family person should be there, providing their really unique and lived expertise because as, as professionals, you don't necessarily know really what it's like to be a family, a patient family in your NICU, you know, what it's like to be a clinician in your NICU. And so families are able to see things and experience things and provide perspectives that I think are blind spots for clinicians, and not in a bad way. It just, that's, that's, you know, we all have our different perspectives and the expertise that we bring to the table. And that's what families can bring is this really unique insight.
Speaker 1 36:17
I told Ben that this this very morning, that sentence, so I love your I love hearing that. I wonder for people, investigators, advocates, you know, who are doing work across neonatology well in anywhere, really, what is the best way to approach family members to engage them. So there's a lot of discussion in the community, especially now, even about our family advocacy committees, about which families when to approach them, like how much time needs to have passed that we feel like we can invite families back to, like you said, a place where even if their child is doing well is a place for trauma, trauma for many parents, for sure.
Speaker 3 37:06
And I'm smiling, because this is actually the main focus of my research work in my sociology program at UC Davis is Nikki family leadership, like how families transform from the trauma into leadership roles, and how are those decisions made? And how are certain families elevated and some families not given the opportunity and not really given the platform at all. And so I think it takes a lot of intention, so that we aren't just elevating the families with the most privilege and the most ability and knowledge to navigate the healthcare system and to, you know, to, because it's a complex process, right, but yet, I don't know what it's like to be in the NICU and to not have English as my first language. And I don't know what it's like to be in the NICU and to not have really expensive family supported or to live in poverty. And so I think those perspectives and those voices are really important as we're building resources for families. And we're figuring out like, how do we do our quality improvement work and so forth? A it's important to hear from families with diverse experiences and backgrounds, and not just families who have again, the best outcomes or who will have the loudest voice. And I think that's difficult to do. And there's, I think, a few you know, I have a few ideas on how to do it. One, we have to be very intentional to be able to interrupt that process that's happening and to I think we need to partner with there's, you know, an organization called the NICU Parent Network. It's led by my friend Kira and Kira, and I have this conversation, often of like, how do we make sure that we're not only hearing from basically white privileged mothers? Like how do we hear from other NICU families who have a more diverse experience and background so that we can continue to improve outcomes for all of our families?
Speaker 1 38:52
And the truth is, what's what's good for all the families, you know, yeah, is translatable. Right? So if we, if we provide the most comprehensive sources, it supports everybody, for sure. It's everybody. And absolutely. I had a question about family support, but in particular, I'm going to shift gears a little bit for bereaved parents, you know, bereaved parents are a group that has historically and been, quote, unquote, difficult to study. And some of that is because it makes researchers nervous to approach the bereaved parent and obviously, we've got some wonderful people in neonatology doing exactly that, but maybe you can speak a little bit to what was effective for you, and particularly from the medical professionals at that time of need.
Speaker 3 39:52
i That's a great question, and I really can't speak to it because I don't feel like I had support at all from our medical system after Mike passed away I remember on and and this is probably what also drives me to do this work is because I did not have what I needed. And I knew that if I didn't have what I needed, then a lot of other families weren't getting what they needed either. I remember, and I'm going to tell you two things that I remember vividly from literally the moment after mica had just passed away, you know, we're, we're, you know, in his room still, and we're just getting ready to leave and I must have been palliative care came. And they handed me a packet and like the front book, it's like this 32 page book. And it says, when, when I don't remember if it said when your baby dies, or when a baby dies, but basically when your baby dies, and like it was just it felt so out of touch. Like that is not what I needed in that moment is to read like I was just being I felt so my heart was shattered, I was devastated. And then to be handed this book that's like basically confirming like, remember, your baby just died. Here's your here's your book that says it. And here's the book that talks about it. It just felt like an extra stab in my heart. And then when as I walked out with Noah from the PICCHIO, MTR, and obviously without Micah, the woman at the front desk, who was a lovely sweet lady, she looked at us and she said, I'm so sorry, but you will have more children. And I just, again, just another like stab into the heart. And, and I you know, I wasn't matched or, you know, given any, I'm sure in that book that I never open because I found it too difficult and painful to even look at that book. Like, I didn't even open the book, but probably in the book may be like resources that I could have called but no one called me to be like, do you need to be like in counseling or here's a grief like, you know, bereavement group for families or parents like I didn't know anyone had that had lost a child after mica had passed away. And thankfully, like social media actually helped me because I was able to find other groups and outlets and connect with other bereaved families. And I was able to, I you can probably tell like, I'm a very direct person. So like, I knew how I wanted to remember Mike and how I wanted other people to keep him present in my life. Like, I don't want people to just think okay, well, now you just have Mike his brother. And well, let's just focus on that, like, No, I still have twins, they are always going to be twins. And this is how I needed to be able to tell people, This is how I want you to remember mica and talk about Mike and help me. And that. So I'm not really answering your question other. You know what, though, I would oh my gosh, I'm actually so excited. I just remembered this. And I don't know how I did remember earlier. But another thing that I lacked, after mica passed was the ability to talk to his brother about grief and loss. And, you know, thankfully, I was able to have one more baby after, after Mike and Zachary. And so I couldn't find a children's book that talked about the loss of a child that I could read with his brothers. And so I actually wrote and my mom illustrated, she's an artist, a book called forever, our little one. And it's for bereaved families to be able to share with the other living children in their life to remember the little one that they've lost, who then they now carry in their hearts and how they can find peace and strength by moving forward together.
Speaker 1 43:23
Well, I actually think you've done a wonderful job of, of both what we should not do, and what we can potentially do for families. I think everybody wants to do something. Right. And they, it's difficult, like you said, when the last interaction we have with a family as as they're leaving a unit shortly, shortly after a death, you know, yep, there's not enough time to, to let you even process what has been happening before the offering of resources. And it sounds like that's something parents need. They need a little time to process the shock.
Ben 44:06
But beyond the resource, right, definitely. I think what Jen, you're you're articulating is that in this moment, you're looking for humanity and human connection, and that you should not delegate to a pamphlet basic for sure. That you cannot say, Hey, here's our compassion printed in nice glossy paper like this is not. And I think despite the comments of the person at the front desk, I think that's still no matter how misplaced it might
Speaker 1 44:32
be considered, at least trying to do it. Exactly. Yeah, exactly. I
Ben 44:36
mean, just say something. And I think for us as neonatologist and attending who used to say your job is to just be comfortable in uncomfortable position. So it's never going to be pleasant, but just push yourself get in there and just say something and and that will be so much better than whatever pen foot your institution has put together to help parents cope with the passing of a child.
Speaker 3 44:56
And I you know, I also think that this is a place where fans We this is a perfect example of how family engagement and leadership like bringing back like a grief advisor, you know, a fair you know patient family is someone who has who has is bereaved to help, you know, and help palliative care or their clinicians navigate how to talk to families about loss. And yet, there's a lot of resources, there's a group called still standing that has fabulous resources on what to say and what to not say to bereaved families, and I will push back a little Ben is sometimes those words, when even when they're well intentioned, I'm like, Yeah, it'd be better if he just didn't say that, like, I know what you're trying to be. Okay. But sometimes, like, even if it's just like, a hand on the shoulder, or you like some type of other If so, I would say we need to do better for families, because I have had things that have, I knew, were well intentioned, well intentioned, but are still really hurtful. And anyways, so yes, we need to do more
Ben 46:00
100%. I think your story is an eloquent example of how the many parents who go through what you've gone through have very often the same question, how do I honor my child's legacy? And what can I do? And I think the most common question we get often is I can can we donate organs? Right? I mean, I think that's the first thing parents usually ask for us in the NICU. It's a very touchy subject, because obviously, they're not they're not this is not something that's that's done. And and parents are really seeking opportunities to say, how do I make the life of my of my daughter of my son means something for others. Now, you've you've shown through the next society that that this is definitely an opportunity, what are some of the ways that parents can honor their their children's legacy? What are the avenues that is available to them?
Speaker 3 46:47
For sure, thank you for asking. Beautiful question. So we have the neck registry, which we'll be launching soon, where families can come back in and they can share their their, their child's data and story with the organization that we can eventually use to advance research. We have different ways for families that they can get involved in the next society in honor of their child, we are always dedicating our webinars and our sessions and our learning resources to individual children and families. So there's a lot of different ways for and we share stories to help humanize the disease. So we're constantly working to to help families honor their babies in a meaningful way at the next society.
Speaker 1 47:29
I love that one of the central focuses, like we've been talking about is really advocacy, we've actually been talking about advocacy, the last few weeks on the podcast. So often we find that our colleagues say, Well, I'm a clinician, or I'm a scientist, or I'm a clinician scientists, what do you say to physicians and healthcare professionals who say like, advocacy is just not my lane.
Speaker 3 47:54
I think it's our responsibility in this community to advocate for our babies and families and children. And that's just my perspective, that I think it's actually everyone's responsibility in this community to be an advocate and to use our voice and our really unique, the insight and knowledge and expertise and credentials, and whatever, you know, platforms, whatever it is that we hold, I, in my opinion, it's a responsibility to use that to advance the needs of the most vulnerable babies and children among us. So I would
Speaker 4 48:26
push back really hard on that. And say, we must advocate. Yeah.
Speaker 1 48:34
Do you think do you have any recommendations for people who are newly newly interested in advocacy and where to start next society that the next is
Speaker 3 48:43
joining, you can always join us, I'm actually meeting with my legislators, and when I go to PS for DC, and so I think really exploring the various opportunities, whether it's making a phone call to your to legislators office, or you know, writing an email or meeting face to face in person, you know, in really exploring different ways to get involved. But absolutely, Nexus id.org is a great place to start in terms of advocacy. And we're hoping to do more in the coming years.
Ben 49:12
I wanted to we're on the we're on the tail end of the of the interview. And so I wanted to to ask you a little bit about what are some of the most significant challenges you and the organization has faced on this journey to make the world NEC free?
Speaker 3 49:26
I think the biggest challenge is that we are still a very small organization. And we have limited funding and limited people power in terms of paid staff. We have a lot of people who are eager to volunteer and serve as advisors. But in terms of the end, we actually didn't even have staff until a couple of years ago when we received enough funding to like actually pay. You know, we have a research coordinator and we have a development director now. And we have these roles that are paid that we didn't even have, you know, two years ago. So that's been a big change for us. And you can see that our capacity and our bandwidth is already expanding because we have the funds to do that. But that has certainly been, the biggest challenge is that we constantly have so much work to do. And yet we have a limited ability to secure the funding that's necessary to do the work that we are desperately seeking to do.
Ben 50:17
And do you see you've created basically an umbrella right for for neck research and for neck advocacy? Do you see hospitals? I know Cincinnati, children's has been a big supporter of the next society. But you see multiple institutions saying, Hey, how can we all come together under the umbrella of the next society to try to collaborate or share the work or the the ideas that we have?
Speaker 3 50:40
We hope so we we haven't formalized that yet. That's something we've certainly talked about. And we want to do, because, you know, like, see agency, for example, where all the different children's hospitals are coming together, it's powerful. So we hope to be able to get there at some point. And it's something that strategy that we've talked about. And again, just I think our limited bandwidth has prevented us from being able to take advantage of that opportunity quite yet. But we hope to get there. And I do think there's a lot of power between this different stakeholders, and then bringing in the children's hospitals to do this work. And we have been very fortunate, we've partnered with UC Davis, to present the next symposium, the University of Michigan and Cincinnati Children's now. So we are constantly building those partnerships.
Ben 51:21
And I've been part of many collaboratives. In the past, they all start the same way. It's like a zoom call, it just starts with a zoom call. So it's not like if somebody is interested in saying, Hey, I could be the one who spearheads this initiative. It's not like the beginnings are pretty much just getting people on a zoom call shouting from there so 100% Ugly.
Speaker 1 51:39
Yeah, well, and that's why it's kind of it's almost humorous, I think, to me, when you keep saying that you're such a small organization, when it's obvious that you are one of the largest organizations have, you know, a multidisciplinary team doing work in our space. So tell us about some of the wins some of the successes in the last since the inception. Sure.
Speaker 3 52:01
We are a very small organization, though. I think it's every once in a while I get an email, like, can I speak with your assistant? I'm like speaking they're like, can I speak with a
Unknown Speaker 52:11
social media person? I'm like, Yeah, that's me too.
Speaker 3 52:15
I think you know, Aaron Umbarger does our graphics she makes us look, you know, we and we are we are professional organization. But I think we look bigger out in the world than we actually are. Like, I'm constantly sitting here where you see me on my kitchen table working on that axis any we don't have, you know, an office, I think people are like, you know, I'm in Davis, can I can I visit the next society? And like, at my hat's like, we don't, we don't have an office. But anyways, yeah, some of the wins. The next society has been very fortunate to receive three awards from the patient centered outcomes research institute. PCORI, has really allowed us to have served as a springboard and really believed in us from the very beginning. And I remember we really had not done much of anything before we received our first award engagement award from the patient centered outcomes research institute. And that allowed us to host the next symposium in partnership with UC Davis and really has allowed us to continue to build that momentum. And then we received, we've received three awards from the Chan Zuckerberg Initiative. And that's been part of the rare is one network. And now we have a patient partner research collaborative that we've launched to expand the neck by repository. So those are just a few of the things that have been really exciting and allowed us to advance our bandwidth in a really significant way.
Speaker 1 53:37
Well, what I hear is that you pour your entire self into into the next society I do. And as we're finishing Allah, then close out the show, but I'm struck actually, by the fact that your last name is canvasser, which literally means you know, a person or people who are working to have others support someone or something. And I think that is just so melodic, given the work that you're doing with the next society. So I mean, I just thank you for being brave enough to share your story and to share Miko with us.
Unknown Speaker 54:15
Thank you. It is an honor.
Ben 54:18
It's really so I'm not sure exactly what I'm How am I supposed to come after this? I guess I don't really have a question. But in closing, if if you if you wanted to leave our listeners with one thought or idea, what what would that be?
Speaker 3 54:34
I would just say that I think the next society demonstrates how we are changing the narrative around this disease and it demonstrates the power of the patient family voice and reinforces the fact that parents are the most important member of their child's care team, that families need information. They need hands on support and guidance in the NICU. And they need empathy that you know the Nick You as a traumatic place to be. And really what happens during that time in the NICU, the interactions, the words, the comments, how they are made to feel the opportunities that you either have or don't have to nurture and bond with their baby really stay with these families for a lifetime. So quite the opportunity.
Ben 55:21
Jennifer, thank you. Thank you so much for sharing your story with us. Thank you for coming on the show. And in chatting with us. I think this was a very enlightening discussion, and we'll have all the resources possible that we can fit on our episode page, about NEC about Nick society and about the symposium. And we look forward to I mean, we're recording this right before PHS. So don't worry, we look forward to seeing you at PS Yes, thank you so much. Bye. Bye. Thank you for listening to the incubator podcast. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcast, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU podcast@gmail.com. You can also message the show on Instagram or Twitter, at NICU podcast or through our website at WWW dot v dash incubator.org. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns. Please see your primary care professional. Thank you
Transcribed by https://otter.ai
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