25: Learning to live with NEC Society founder Jennifer Canvasser

Hello, friends, and welcome to Grief Guts and Green Smoothies. I am your host, Melissa Dugalecki, and I am so excited to be here with you all to chat about ways in which we can all get through different adversities, challenges and loss and how getting outside of our comfort zone and maybe having a green smoothie or two can help us do so. We will cover different topics, ranging from interviews to recipes, to sharing my own stories of my grief journey and the loss of my daughter, Layden. And I'm honored to be able to share her light in hopes of helping you spread yours. Now let's dive in. Today we welcome Jennifer Cambasar, who is the most inspiring, strong, articulate, wise, kind and gracious mother. And a bereaved mother. With that, Jen and I crossed paths because we both lost our children to neck. And she has completely astounded me with the way that she has channeled this pain, this energy, this how do you bounce back from grief and taken that love, that love of grief and turned it into something that is impacting thousands of lives around the world. And she shares how that comes with anger. And she shares what she wished she knew when she was in the beginning stages of her grief journey and shares some awareness about this disease that nobody is talking about. I love chatting with her. I am continually inspired by her. I can't wait for you to hear Jen's story, so let's dive in. So, Jen, thank you so much for joining us on the podcast Grief Guts and Green Smoothies. I have really loved connecting with you and building our relationship and really understanding about the work that you've done. Our connection is one I wish we didn't have. The work that you do is really inspiring and I'm just so thrilled to have you here and share your story with the world.

Thank you. I'm thrilled to be here.

So before we get into the deep stuff, the gritty stuff, I like to start off with just a couple of warm up questions. So first, what does Greek Guts and Green Smoothies mean to you?

That's such a great question. Well, I love it because I feel like it kind of brings total health into perspective. Like our health is so interconnected, like the health of our soul, of our mind and our body. And so to me, it kind of brings it all together and it really allows us to be mindful of the different aspects of health and how you can't really have a healthy mind without a healthy body and vice versa and just the interconnectedness of our health.

I love that. And most importantly, what Is your favorite kind of taco?

Great question. It's funny. We eat a lot of tacos and tostadas and burritos at my house, so anything with, like, lots of beans and cheese and veggies is my preference. I'm mostly vegetarian, so lots of grilled veggies on my taco is my. I love that.

And you're out in Calif. We are.

We're in Northern California, outside of Sacramento and Davis.

Ah, so great. So great. So your story is incredible. I was so inspired to know about your journey, and when you first reached out to me, I didn't recognize your story. You reached out to me as, you know, the founder, the creator of the Neck Society. And I was intrigued. At that time, neck was something that was really hard for me to even touch. It was kind of my angry place. And then later, I found out that not only were you the founder of this international work, right, that's bringing some of the most brilliant minds in the world together, but that you're a bereaved mom who also lost her child to neck. I've just been in awe of your strength and your grace. And why don't you tell us a little bit about your story, you know, about your son, about nec, and about, you know, your decision to start this foundation, this society.

So thank you for the opportunity to share. I'm sure you well know we love the opportunity to talk about our children, so thank you for that. So my son, Micah, was born at 27 weeks gestation, unexpectedly. Clearly, like most moms, we don't in the nicu, we don't plan to deliver early or be in the NICU with our babies. And so I was very unprepared for the journey ahead. Micah was born at 27 weeks, weighing about two and a half pounds. And for the first six weeks of his life, he was doing quite well. He was doing what he needed to do. He was gaining weight. He was beginning to breastfeed. He was learning how to breathe and eat on his own. And so by the time he was about six weeks old, he had doubled his birth weight even actually more than doubled his birth weight. So he weighed about five pounds. And we looked to us like he was on his way home, that he would be able to come home and have a normal, healthy life. And so at this point, I was kind of breathing a sigh of relief and really looking forward to welcoming Micah home to our family. And then he very suddenly developed necrotizing enterocolitis, which is a devastating intestinal disease. And he survived his Initial infection with the disease, but he went into renal failure as a result of his infection and had a bowel resection. So he had pieces of his intestines removed. He developed liver disease because he was on TPN IV nutrition for so long. He developed lung disease because he was intubated for weeks and months, and just one complication after another because of this initial infection with necrotizing enterocolitis. So Micah eventually was able to come home to us, and we were thrilled. It was like a dream come true. And at that point, I thought that our biggest hurdles we had overcome, I thought we had made it, that Micah had made it. And we were just thrilled to have him home. And he was still in renal failure at this point. He had developed end stage renal disease. We were working to get him to gain enough weight to get a kidney transplant. And I was planning to be his donor. We had it all planned out. But tragically, just before Christmas and just before, Micah is a twin. And so just before the twins first birthday, Micah died of complications of necrotizing enterocolitis. And of course, it was absolutely devastating. I didn't know how to breathe, how to eat, how to sleep. And so it took me a long time just to figure out how to live without Micah in my arms and how to figure out how to live with him only in my heart. And it became very apparent quickly that I needed to keep him integrated in my daily life. I needed to have Micah part of everything that I do on a daily basis. And so for the first year, I was trying to figure out, like, what that looked like and what does that mean? And eventually I went into googling who's working on necrotizing trocolitis. I wanted to be able to donate some of my time and money and skills to whatever nonprofit charity was doing this work. And this was in 2013 that I started googling, and I realized that I wasn't finding anything, like, how is this possible? This is a disease that kills three to 500 babies every year in the United States and affects thousands more. There's got to be someone working on it here. And of course, there were individual labs and scientists that were doing their own thing at academic institutions, but there was not a nonprofit charity organization that was bringing everyone to the table and uniting diverse stakeholders, really, in an effort to prevent this devastating disease and improve outcomes. So I kind of looked at my background and my skill set and my resources that I had on hand, and I said, well, I guess we're doing this. And so it became Pretty apparent early on that I was gonna run with this and see where it led to. And thankfully, we've just been able to bring an amazing team on board and full of incredibly dedicated people who are really committed to the next society's vision of building a world without necrotitizing enterocolitis.

Yeah. And it's. The work that you do is amazing. I had the privilege to come out and attend the next symposium and see some of the most brilliant minds in the world coming together to really understand and learn and commit themselves to neck. And what's interesting is that everyone there is aware of it.

Right?

They understand it. They understand that there's a need to study it. But in our conversations and in your messaging and what you experience, not even being able to find anything on Google. I mean, what can't we find on Google anymore? You know, you said how. You know, there are thousands of babies every single year impacted by nac, and that one of the most common, if not the most. And you can elaborate on this denominator, as you found, between whether it was full term babies, premature babies, or cardiac babies, anyone impacted by necrotizing endocolitis was that the families had no idea what it was, and they all felt blindsided. So can you talk a little bit about that?

Yeah. So we actually even published a little study that we did that details about how families literally don't know anything about necrotizing natural colitis, that it exists, that their baby is at increased risk of this devastating disease until their baby is actually being diagnosed. And so, of course, families from all over the world experience tragically nac, and they have very diverse experiences. Some of their babies survive, some of them don't, and everything in between. But the universal. Or nearly. I should. I should say nearly. I'm sure there's a few here and there, but nearly universal experience is that these families know nothing about the disease until their care team is coming to them with a diagnosis. And that's just totally unacceptable.

It really is. And I am so grateful that, you know, you're raising awareness. I often share. In Leiden's case, I didn't know what necrotizing endocolitis was until it was on her death certificate.

Right.

Everybody focused on Leiden as a cardiac baby. And I mean, I live with every day the wondering of what if I.

Have to stop for one second and just talk about the death certificate thing? Because for Micah's. And I think that's a really big thing for bereaved parents is looking at that death certificate. It's Such a shocking and difficult thing to have to process just your child's death certificate. And so, like you, I remember looking at Micah's and it had all. He had many things that he died from. Liver disease, end stage renal disease, lung disease. It was all kinds of different things. Then at the very bottom, necrotitis, enterocolitis. And so you just. I think it's really profound to just share that. It's kind of the complication of everything stem from that one disease. It's just. Yeah, because unlike babies who don't survive then or, you know, who die right away from that initial diagnosis, because a lot of babies who develop NAC only live for hours or less, you know, than days, literally, they die within hours of their diagnosis. Many of these babies do. Tragically, their families often don't even get back to the hospital in time to be with them as they're passing. And obviously then it's very obvious that they're dying from neck. But for the babies who go on to survive and then die later, it's not always clear that they're dying from neck. And so I think that was important for me to see that he wasn't dying from end stage renal disease. He wasn't dying because he had liver or lung disease. He died because he developed necks when he was six weeks old. And this led to a host of other complications.

That's a really profound point and I think just important to drive home that we can get lost in all of these other things. But at the core of it, this is what was going on as two mothers who both really first learned about the severity of NIC through our child's death certificates. I would love to know how many babies are impacted by this every year and what advice you have, like how can we educate other families out there? And I know there's a lot of ways. So maybe we can just start with how many babies are impacted.

Yeah, I would say we don't have really good numbers on this, but it's probably. It looks to be between 300 to 500 babies that die from neck every year, and then thousands more are impacted. I don't have a really good number to share. I believe it's about 8% of the babies who are born prematurely develop NEC. In some cases it's lower, but it's difficult because then you're not capturing the babies that are born full term. And so basically, there's not very good data on the numbers of both preterm and term babies who develop necrotitis, neutral colitis.

No. And I think that speaks to the lack of knowledge around it, that there are probably a lot of babies impacted, that it's not even recorded. Right. It's not even accurately documented.

Absolutely.

And so how do we empower, you know, other moms, other dads, other families to, you know, be prepared to be aware? And what I love about you is, you know, striking that balance between informing and educating without overwhelming and scaring. And it has to be that balance.

Right.

Because we can't spend all day afraid of every single disease out there.

So, first of all, I think it's important to remember that necrotitis enterocolitis is a disease that typically affects medically fragile babies. Typically it doesn't affect full term healthy babies. Typically doesn't say that. It never does. Of course, every once in a while a full term healthy baby develops next, but it's mostly a disease of premature and medically fragile babies. So that's important to just keep in mind. Second, I think it's really critical for this conversation to take place before, while moms are in their prenatal care appointments, for example, when they're talking about the breastfeeding and just the importance of mother's milk for all babies. Of course, for medically fragile and premature babies, it's even more important. But when we're talking about mother's own milk, that's a great conversation and opportunity to bring up necrotizing and colitis, because mother's own milk is one of the most effective ways to help reduce the risk of this disease. It offers many protective benefits. And so to me, that is the best opportunity to talk about it. I think it's also what we've heard from families is they want to know about necrotitis enterocolitis as early as possible. We don't want to hear about it when our baby's actually being diagnosed. We want to hear about it when our baby is still in our womb and we're learning about all types of things. And so this could be just one of those conversations that come up, like around mother's own milk and why it's important and helpful for your baby.

Yeah, I think that's really important. Just asking the question. And can you clarify for listeners who may not be aware what differentiates a medically fragile baby from a baby who isn't medically fragile?

Yeah, that's a really good question. So babies who are born small for the gestational age, for example, so if you have a baby that's born at 38 weeks but only weighs 4 pounds, that baby's at increased risk of neck. If they're born before 32 weeks gestation, that baby's at increased risk of neck. If your baby's born with a congenital heart defect or some type of heart condition, they're at elevated risk of this disease. So those are just a few examples that come to mind. I know there's others.

Yeah. And for those listening, in case you're not familiar with my daughter Layden's story, she died of nac, but she was born with congenital heart disease, so she would be qualified under a more medically fragile baby. And like I said, we were at arguably the best or rated the highest pediatric hospital in the world, and nobody talked about it until it was on her death certificate. So it's why it's so important, this work that's being done to help these babies and to help our families. And, Jen, you're pioneering this work. And can you just tell the listeners, because I'm sure so many people tuning in right now are thinking, how did she find the strength, right, to be able to do this? And you talked about that first year, kind of gaining clarity on what you wanted and what you needed. And what was it like? Do you remember? Was it a moment? Was it a conversation? What was it that created that shift where you said, this is what I'm going to do. This is how I'm going to channel my grief?

Well, as soon as Micah Dieta began planning his life celebration, that was about a month after he passed away. And so for that first initial month of being without Micah, I was working on him every day as I planned his life celebration. And I was terrified after that. He died on December 11th. His life celebration was January 11th, and I was terrified what I was going to do on January 12th. Like, what was I going to do to stay connected with Micah after his life celebration? And so I knew I needed to come up with something, so I started a giving library. We read to Micah and his brother Zachary a lot in the neonatal intensive care unit. And so I started a giving library to donate books back to the NICU so that other parents would have the opportunity to read their babies. We established a music therapy program at our children's hospital. And so I was creating opportunities for me to stay close to Micah. And, you know, as I kind of built these ways for me to give back in honor of Micah and to celebrate his life, to do good because of him, that's when I kind of went down this path of, like, I hosted blood drives, I did music therapy. I did books. And then I was like, okay, I need to do something related to nec. And as soon as I realized there was no one doing this, it was like, okay, well, this is what I'm doing next. And thankfully, that was in 2013, 2014, when I started it. And here we are five years later, and it's still going as strong as ever. And we have an international team now and people from all over the world that are really excited and eager to contribute to our vision of a world without nac. So feel quite privileged and honored to be able to do this work.

Yes. And not only is it still going, it's growing. That was very, very evident at the symposium. Now, one of our other connections that we found was that we have found a lot of healing and processing through our commitment to health and fitness. As you talked about at the beginning of the podcast, Grief Guts and Green Smoothies, what that means to you is just how interconnected it is. And that's, for me, that's where I discovered the power of gut health, when all of a sudden I had energy in the depths of my grief from treating what I didn't even realize was a sick gut. But I would love for you to share more about your experience and how that self care really helped you when you were feeling down. Because I think in this world, and I want to know what you think, but I think that we're taught kind of opposite things. Like when we're broken, that's when you should go have the cake. When we're not feeling well, that's when you shouldn't get out of bed. And of course, there are some times when it's going to happen. Yes. But I think to get out of it, you've really got to find ways to fuel your body well and to move your body well.

Yeah, no, absolutely. So you may or may not know that I've been a runner for decades now. And when Micah and his brother Zachary were in the intensive care unit, I didn't really have the opportunity to run. So again, Micah was in the NICU for. And then he was transferred over to the pediatric intensive care unit for 10, 11 months. And so during that time, I obviously didn't prioritize running too much because I wanted to be next to their bedside and helping to care for them. But there were times when I physically, I could not be there. They literally kicked me out because they were doing, you know, bedside procedures or, you know, X rays or whatever that they were. They were doing where I literally couldn't be in the room. And of Course, there were other times where I needed just a mental break. And so, thankfully, I was able to get out on short runs during that time to just kind of ground myself, get some clarity, refocus, and gain some perspective on our really devastating situation that we were finding ourselves in. And then, of course, after I lost Micah, running.

No, take your time.

Running kind of became a way, like, almost therapeutic for me because it was a way for me to kind of again, just like what it did when they were in the hospital, gain a sense of clarity, gain perspective, and really just have time to myself. It's almost like my meditation time. I'm not really into yoga and meditating, but running and, like, being out in nature and really allows me to have a clear mind and kind of be creative. And so that's even when I began thinking about the neck society and, like, what we could do and what it would look like. Over the years now, I've been able to actually bring my love for running and Micah and the next society all together in one place where we've done runs to build a world without neck, and we're, you know, running in honor of other babies who have been impacted by this devastating disease and using, like, running to raise awareness for neck. So it's been just a really meaningful, fulfilling experience to bring it all together.

I love that. Yeah. I found a lot of my own healing and running, and you mentioned yoga, and it took me I could run before I could do yoga. Actually. It was too hard to sit with everything. You know, I think it's really important to be totally honest and raw with listeners, you know, many of them in their own grief journeys. For both of us. I know it hasn't just been running marathons, raising awareness, raising money, honoring our babies. Like, there's anger, right? And there's like, yeah, a lot of.

Anger and regret and resentment and really ugly feelings.

Yeah. I remember when we were chatting, you know, recently, you know, I think we're both like, this effing sucks. Like, this never should have happened. I want to be really authentic and honest with people listening. So nobody listening feels like, oh, no, why do I have this anger? Why do I have this guilt? Why do I have this shame? Because all of these things are part of grief.

I think that is so critical to bring up and to highlight and to put out there. I remember I felt so ashamed that I didn't even. Just by giving birth prematurely, I felt ashamed. And I didn't share that because I thought I knew logically it wasn't my fault that I had given birth so prematurely, but I couldn't help but blame myself. And so there was just, like, the shame and the guilt. And, of course, once Micah died, those feelings of anger and like you said, like, this never should have happened. This was, in my mind, entirely preventable. So, yeah, I think it's really important to talk about those feelings that are real and valid and essential to the journey that we're on.

You know, grief is an energy, right? And this energy can take many forms, whether it's running, whether it's creating a foundation, whether it's letting the anger out. It's so important, anyone listening, no matter where you're at, to make space for the energy that comes up and to process it. And when you're ready to release what you can release and, you know, to put on a little shelf what you're not ready to process, and then process it when you're ready and release what you can release. And I think that's really the key, not having that expectation that suddenly, I mean, we're both, you know, years out now. Suddenly this switch where you're over it, Right? That infinite phrase.

Yeah, there's no switch, and there's no getting over it. It's a lifelong process, and I like to think about it as losing a limb. Right? You lose your child, you're losing a limb, and you never grow that limb back. You just learn how to live without it. And that's what we're doing, is learning how to live without our children in the best way we possibly can.

I love that. So in terms of what we can share with someone going through grief, whether it's recent or not, what's something that you wish you knew, maybe in the beginning or in the depths of your grief that we can pass on and help educate others.

I wish someone would have told me, like, you know, within the days of after Micah passed, to do what I brought me peace and not worry about what. What it would look like to other people or how other people might judge me or feel about or interpret my processing of the loss. And so, for example, I keep Micah very integrated in my life. I talk about him. If people ask me how many children I have, I count him as one of my living children, even though I, you know, clearly he's not here with us physically. But I say I have three kids, and then if they start asking more questions, I'm like, yeah, well, my oldest son died. And I don't want to say I don't care that it makes people uncomfortable, but I don't really Care. That's not my problem. My problem is how I can keep my son in my life, not making other people feel comfortable. And I wish that someone would have given me that assurance, like, early on, because in those first weeks and months, I was really afraid to do it. And I wanted to write Micah's name on cards and include them, but I was really afraid of being judged, which is ridiculous.

But not uncommon, right? Right. It's not uncommon. I know I had that same struggle at first when I would put a picture, my very first Facebook post, of Laden, not kind of acknowledging her passing, but, like, a few weeks out, I deleted right away because I thought, what is this person gonna think? What if someone's uncomfortable? Am I sharing too much? And now it's like, not even a second thought. But the loss didn't change, the topic didn't change. I just had to really trust that this was my story to share, Layden's story to share. So thank you for reminding everyone to give themselves permission, like, that's the best advice, grief whoever you need to and not compare it to anyone else's.

Right. And I think it's important for us to do it because grief is so common, and even child loss, like, as devastating as it is, it happens tragically. And the more we talk about it and put our stories out there, you know, we are able to make it less tabooed for it to be spoken of. You know, I think of my great grandmother lost her son. I want to say it was in, like, early 60s, and she never talked about him after his funeral. Like, just kind of wiped it all away. I don't know how. I couldn't imagine doing that with Micah, and we shouldn't have to do that with our children. And so I think it's really critical to change the culture around grief. It's a part of life and making it something that we do talk about and that we are open about.

Yeah. Thank you. Yes. So we hope to do here in this podcast, right. Is create space to, like, just like, let's take that weight, you know, that. That shame, that fear away from it because grief is heavy enough. Lift that crap off of it, then equipped to manage it, for sure. Something that you touched on earlier that I'd love to circle back to because it was really fascinating for me to learn about at the neck symposium was the importance of breast milk in preparing and positioning babies to grow and to be healthy, particularly those vulnerable to neck. Can you share just a little bit more about that?

Yeah. So there's been a lot of Evidence that demonstrates the protective benefits of mother's own milk and even pasteurized donor milk for babies who are at increased risk of necrotizing dich colitis and even to the point where it's dose dependent. So the more mother's milk or the more human milk baby receives, the more protection that they have. And so it's really important that these babies receive as much human milk as possible. I think it's important for us to also talk about pasteurized donor milk because a lot of moms, especially if they are giving birth prematurely or there's other medical complications going on, a lot of these moms aren't able to produce the milk that their baby needs. And so that's when pasteurized donor milk comes in as a potentially life saving intervention for these babies that are at risk of neck.

Yeah, it's so important to make sure everyone knows those resources are out there. And that was a really hard thing for me to learn. And I really wanted to share that because for Laden, I gave her breast milk, but because the focus wasn't on neck, we added formula and vegetable oil to my breast milk to fortify it because that was what the doctors prescribed to get the caloric intake up so that she would grow. And I can't tell you, I constantly wonder what if, what if? Because I just feel like we were literally beating down on an already vulnerable and injured gut. And so, you know, when we talk about what can we do, whether it's what you said in terms of asking questions in your pregnancy or in your partner's pregnancy, educating and knowing that if your baby is premature or medically fragile, to really advocate for your own breast milk or donor milk. And I think thank you for highlighting donor milk because that's a growing, accessible resource, isn't it?

Yeah, absolutely. And I think it's important to share that. When I was in the neonatal intensive care unit with my sons, I didn't even know donor milk existed. Like, I had never heard of pasteurized donor milk. I had heard of like casual milk sharing, but I didn't realize that there's like this, it's called the Human Milk Banking association of North America, also known as himbana, this huge nonprofit kind of network of milk banks around the country that pasteurize and process donor milk to give back to NICUs, who need this again, life saving intervention for these babies that are at risk of diseases like necrotitis and colitis. So I think it's important just to highlight that it's there and it's available and it should be utilized. And also if you have a healthy full term baby and you have milk in your freezer, you should donate it to the Havana Milk Bank.

Yes, absolutely. I'm so glad you reminded people of that. So with the next society, what do you feel like is your biggest achievement so far and what's your next big goal? What's the next big thing you guys are going after?

Okay. I would say the biggest achievement is just the international community that we've been able to bring together with diverse stakeholders. So just the incredible diverse global community that we've been able to kind of bring together to the table to under one common vision of a world without nec and ways that we can move that forward. So that's just been incredible. And of course I would say this next symposium that you attended just a few weeks ago is really high up there too. We just hosted an international meeting and it was just an incredible transformative experience that brought diverse stakeholders to the table to drive research. And we're gonna have some follow up items that I think again are gonna kind of make that top few achievement list that you're talking about. We have a publication coming out in Pediatric Research later this fall that really covers a lot of the content that was discussed at the symposium. So I'm really looking forward to that. And in terms of what's coming up next, we have a lot of projects following up from the symposium around long term outcomes for the babies and who are oftentimes living until they're a teenage and adult years and so forth. We don't really have any good data on what long term outcomes look like for these babies who then grow up and have these long term complications. So we're looking to do some projects around what are the long term outcomes, what are the quality of life issues that next survivors experience, you know, again decades later after that original diagnosis, as well as diving into term neck babies who are born at term who then develop necrotitis and trocholitis are minimally covered in the medical literature and just have. I don't really understand, I don't want to say that they've been disregarded, but it's almost like similar to neck is kind of shrugged off as a complication of prematurity. At least that's how it's felt to many of our patient families over the last several decades. And we're working to change that. It almost feels the same thing with term neck, that it's almost, you know, it's going to happen to some of these babies because they're so medically fragile. And so that's why we're here to say no. There are things that we can do to better prevent and treat this dis disease and hopefully change practices and make progress. We also have our next next symposium that will be coming up in 2021 in partnership with Dr. Jae Kim, who's an neonatologist practicing at Cincinnati Children's Hospital.

So exciting. I'll certainly be there.

Awesome.

Yeah. So we have shared a lot. We've shared, you know, educated, hopefully, other people around this terrible disease. We've talked about our own grief journeys, the loss of our babies to neck, educating others on what neck is. We hit on how not commonly talked about it is, and trying to spread education around it. And really, one point I'd like to mention is that it's a critical disease. And you had shared that it was 30 to 50% of babies of babies who are diagnosed who have surgical intervention don't survive. We've got to do better than that.

And I have to believe that the morbidity and mortality rates around NAC have been pretty stagnant for decades. We have extraordinarily poor prevention and treatment options. And I have to think it's because we haven't had a unified voice demanding progress. I mean, until we have all just started to come together in very recent years. And now we see a lot, you know, more publications and more research and projects and conferences being hosted and conversations happening. But I think, again, for decades, no one was really talking about it, and so progress literally was not made. So I'm hoping that by bringing everyone together, we can finally make the progress that desperately needed. This is incredibly urgent work. Babies are dying every day because of this disease.

Well, thank you for, you know, streamlining and spearheading the efforts of all of these bits and pieces of research and knowledge to come together. I am so grateful. I am so inspired by your strength, by your love for Micah, and by your choice to channel that energy of grief into a way that's impacting and helping thousands. And Micah's light is shining, and I am just so grateful that Layden's light gets to be a part of that, too.

Thank you. And I'm so glad that Layden and Micah brought us together. It's an incredible thing to think about the people that our children bring into our lives, even years after they've left us physically.

It really is. So I hope everyone listening enjoyed this. Before we sign off, Jen, let them know where they can find you, where they can learn more about the next society.

Yeah. Absolutely. So you can Visit us@nextsociety.org and we're also on Twitter, Facebook, Instagram and YouTube. So hope you'll check us out.

Thank you. And everyone listening, we will have Jen's information in the show notes. I'll have it on my Instagram. And of course, you all know how to get in touch with me if you want to learn more, which I truly encourage you to do, so. Holy cow. Talk about inspiring. If you can see the light in Jen's eyes when she talks about her son Micah. If you could see the amazing work that she's done in the next symposium. That was the conference. I was out in Michigan. It is truly amazing and I think speaks to the power of the energy of grief. We all know that grief is an energy. We know how dynamic it is. And she is this incredible example of someone who has taken this and chosen to channel it in a way that aligns with her, that allows her to make progress so that she feels her best and honors her son. Like we say, it's different for everybody. But the way Jen has chosen to do it is something I am so grateful for, I am proud to be a part of. And I would encourage all of you for Layden, for Micah, if you or someone you know is expecting or has a medically fragile baby or a baby who is premature, please just ask the question about neck. Just ask it. There's nothing to lose. And both of us deeply regret first learning about this disease, the diagnosis of it on our children's death certificates. And we don't want any other parents to experience that. So thank you for joining. Thank you for tuning in. If you love this episode, please help us spread our mission. Head on over to itunes. Rate Review. As you know, this is my way of spreading Laden's light. And I am so grateful for all of you being here, helping me do so, and allowing her, all of us together, to make a positive impact in this world. Chat soon.