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#062 - Elizabeth Simonton


Elizabeth Simonton on the incubator podcast



Bio: Elizabeth Simonton is the Co-Founder and CEO of ICU baby, the largest volunteer based organization in Florida to support families with a baby in the NICU. Elizabeth is an attorney and former small business owner who started ICU baby in 2014 after having a NICU experience of her own. ICU baby has helped hundreds of NICU families each year since being founded and has won awards from the United Way of Miami-Dade and the Greater Miami Chamber of Commerce for innovative programming to meet community needs.

Elizabeth received her B.S. from Furman University with a double major in psychology and political science and graduated Cum Laude from the University of Richmond Law School in 2005. Elizabeth and the PAIRED Parent Advisory Committee won the 2021 Director's Award from the Florida Perinatal Quality Collaborative, was named a 2019 Miami Leader by the Miami Foundation and is a graduate of Radical Partners’ Social Entrepreneurship Bootcamp’s Cohort 6.


Find out more about ICU baby at: https://icubaby.org


Follow ICU baby on social media:

www.facebook.com/icubaby.org/


 

The transcript of today's episode can be found below 👇

Ben 1:09

Welcome Hello, everybody. Welcome back to the podcast. It's Sunday Daphna. How was your week?


Daphna 1:19

It's been a good week. Yeah.


Ben 1:21

It's been a good week. I'm trying to catch up post COVID Everything is just catching up with all the stuff that I left. Unintended unintended. And we have a special sponsor for this episode. This episode is sponsored by Casio as usual, obviously, but with by also by protractor. And so we thank them for their help. And they're also have helped us actually make this interview happen by connecting us with Elizabeth, who is on with us today. Thank you to Heather Apgar, who's been who's been very, very nice to work with, and helping us make this episode happen. She has the coolest last name, obviously. I mean, when you work in and around the unintelligent it's kinda it's really cool. Yeah. So without anything else that we need to talk about before we get this interview going?


Daphna 2:13

No, I don't think so. But I mean, Elizabeth is a delight. So let's get started.


Ben 2:18

Okay, so for the audience who are not familiar, Elizabeth Symington, is the co founder and CEO of ICU baby, the largest volunteer based organization in Florida to support families with a baby in the NICU. Elizabeth is an attorney and former small business owner who started ICU baby in 2014. After having a NICU experience of her own icbb has helped hundreds of NICU families each year since being founded and has won awards from the United Way of Miami Dade and the greater Miami Chamber of Commerce for innovative programming to meet community needs. Elizabeth received her BS from Furman University with a double major in psychology and Political Science and graduated cum laude. Am I pronouncing this correctly? Good. As you can tell, I didn't graduate come laude from the from the University of Richmond Law School in 2005. Elizabeth and the paired parents Advisory Committee won the 2021 directors award from the Florida Perinatal Quality Collaborative was named a 2019, Miami leader by the Miami foundation and is a graduate of radical partners social entrepreneurship bootcamp cohort number six. So thank you, Elizabeth, and welcome Elizabeth Symington to the show. Elizabeth, thank you so much for being on the show with us today.


Elizabeth Simonton 3:41

Thank you so much for having me. It's really an honor to speak with you both. Love the


Ben 3:45

honor. The honor is all ours that we were just saying off air how I have worked with ICU baby in the in the in the in the NICU at Jackson Memorial when I was a fellow and I think you do tremendous work for for the people who are not familiar with ICU baby, can you give us a brief overview of what is ICU baby? What are your goals and what are you doing?


Elizabeth Simonton 4:12

Sure. So ICU baby is an organization that supports families with babies in the NICU. And our our mission really is to unite families and provide them with informational support, educational support, emotional support and financial support so they can successfully navigate their NICU journey and really thrive together as parents and and babies in the NICU. And we were founded back in 2014 out of personal experience. I had a NICU experience myself and my son was in the NICU for a very short time only six days which is kind of the irony of this, you know, big organization here in South Florida. But you know that six days in the NICU really exposed me to a world I never knew about and I never been in and I saw so many of the other families and their experiences which are as we know in NICU also difference. And that's really what was the impetus for, you know, gathering a group of of like minded families and that had had a NICU experience to come together and support families going forward. And you know, that was seven years ago now, which is just so hard to believe. And we currently have programs and two of our largest queues here in Miami and holds Children's Hospital, which of course, is you M Jackson Memorial Medical Center, and also Baptist Health System, South Miami hospital. And collectively, they almost have 200 beds. So we're supporting every week, you know, dozens of NICU families, it and we're kind of meeting them where they are, you know, what we know about NICU support is that comprehensive support is the best type of support. And so I see baby's really proud to provide multi tiers of support to meet family's needs. And we're really proud of the work we do.


Daphna 5:51

And I want we have to get into the specific programs that you do. But I think your first sentence was so valuable. I think that people don't realize us NICU professionals don't realize how, what we call like a short stay, right 60s, can totally still change a lifetime for families. And so even though short stays, I think that's super valuable for people to realize that short stays impact families lives. And so we can imagine that as that state gets longer and more complex, how disruptive it is to our family. So


Ben 6:34

and let me let me add something to that document. Because you're I was thinking the exact same thing. Yeah. And also, I think as providers, we tend to think that it's the families who have been in the NICU, the longest, who will become the champions, and the advocates in the future, when in truth, it is not the case. And you're the perfect example of a mother who's been in the NICU for only several days, and your impact on hundreds and hundreds and 1000s of babies has been tremendous. So yeah, I want to I want to echo what Daphne was just mentioning,


Elizabeth Simonton 7:03

isn't that true? I mean, I'm a huge advocate for families with short term stays because one's a NICU experience for a family typically is a spontaneous emergency. Most families don't know they're going there. At the end of the day, and you hear countless times hope that, you know, mothers have experienced parent pregnancies with no issue. And then all of a sudden, the next day they find yourself in the NICU and what the heck is the NICU, by the way, right, they don't even know they weren't prepared. And I was one of those. I mean, the irony is my husband's a physician, and I still had no idea what the NICU was. But my six days, there were all that I could handle, to be very honest with you. I mean, it was a medical trauma, I had two babies at home, I had my son here. And and we see that time and time again, as we support families bedside is that the length of stay is not necessarily correlated with the amount of trauma a family experiences, you know, sometimes, so short term stays are very dicey. And families, you know, quickly have to, you know, work on their feet, to figure out childcare to figure out a transportation to the ground work arrangements. And now long term stays, as we know, have many more complications because of the length of the stick. But sometimes we forget that the short terms stay families really are suffering, you know, similar emotional trauma, especially in emergencies. And that's where we really see our role in supporting them and educating them and also providing the supplies they need to really successfully care for their baby in the NICU and allow them to be there. So I always appreciate people that say, you know, and we have a team of mentors, and I hear from them all, but my baby was only there for two weeks and only two weeks. I mean, that's a baby in an intensive care unit for only two weeks is a big deal. So we have to remember that NICU stays are relative just because babies weren't there for six months doesn't mean that the parents and the families aren't really aren't really feeling challenged by the whole experience.


Daphna 8:58

I think it highlights two other things. For me that one some of the reasons that babies end up in the NICU is that the birthing parent has had a traumatic experience also and then we send the babies even for quote unquote short stay home before that person has even really begun to heal. And the second is that you know, you and your husband your professionals have added you know, resources at your dispense and and that's a still a such a huge disruption to your life for everybody, no matter where you come from, or what your family looks like. And then as those challenges become multi, you know, multiplied it's even harder and harder and harder. So I'd love if you could speak to that.


Elizabeth Simonton 9:49

Sure. I think that's what I what I realized during the NEC displays Oh, my goodness, I'm suffering and I have met I have no education. I have a husband who knows doctors in the neck Do I have all these incredible privileges that many other family most other families don't have, and it's still traumatic for me. Little girls are still missing me at home. And, and I think that's really what ice baby is about. And I think that's why a woman with a six day stay is able to lead this organization because I recognize that many more states that have, you know, mountains, more complications, and my dad and I just barely survived this day. I was the one, you know, crying, praying, doing all those things. And, and so it was hard for me to imagine what seven days would look like or what seven weeks would look like. And I think as as health care providers, that's such an important concept to think about is the relativity of a NICU experience for any family. And then as you know, you know, something we're really passionate about ICU babies, just recognizing those barriers that family smells and outside of the NICU experience itself.


Daphna 11:00

Oh, go ahead. I have a to my list of questions. But go ahead, Ben, it's your turn. No,


Ben 11:05

I was. I was just going to say that we we tend to call the birth of a child like a celebration of life. And, and we've done a project with, with Richard Doty on on photography in the NICU. And what we've realized is that the NICU is this place where the celebration of life is placed on hold for an end, the life of the baby, and by extension of the whole family is placed on hold. And I think it speaks to what you were describing about how the length of stay in the NICU really doesn't matter. Because for six days for two weeks, for three months, your whole life is in suspense. Is this? Is this going to pan out? Are we going to finally get out of this hospital? Or are we not? And, and everything will definitely be different, regardless of what the outcome is. So I'm wondering if you if you felt that and and if you could speak to from the perspective of a mother who, who had other things going on in her life, you know, how what is the the impact of of the NICU where everything has to be placed on hold for an indefinite amount of time.


Elizabeth Simonton 12:14

And that's the incredible thing is we you know, placing things on hold so that you're able to be by the bedside of your NICU baby isn't possible for many times, wife can't go on hold, whether it's work, whether it's other children, whether it's other responsibilities, then we particularly saw that in COVID, right where we were, when we've had to all of a sudden homeschool their other kids or they couldn't go to school to drop them off and then get to the NICU. So the ability to put the life on hold is very difficult for most families, particularly those who have other obligations, and don't have, you know, don't run their own business and can say, Okay, I'm going to work from the hospital bedside. And that's really a challenge. And I think, you know, one of the you highlighted, one of the biggest mountains of the NICU is that everyone wants the destination, when are we being discharged. And you as physicians know that there is no crystal ball there. And so that uncertainty of the day to day and really the hour by hour for the families is almost unbearable, because they want that end date. The journey of the NICU is what's so challenging. But if you said to anyone, you know, like me, for example, your son is going to be here for 12 days, and then you you adjust your expectations as parents, right, you have the answer What's wrong, and you would just Okay, I think I can do this for 12 days. The challenge and then thank you is that rarely happens as we know. We're so hungry for that. Everyone's asking you physicians, when are we going to be discharged. And and the journey is the hardest part. And we know also that if you were to say your baby will be discharged on Monday, sometimes that doesn't happen and those equity patients crumble, and then we see a family crumble once again. The process and what you spoke of about play, I was such beautiful words you shared about placing the celebration on holiday and one thing we try to do is say Congratulations on the birth of your baby. Because I think people who don't know about the NICU which we know it's really a general community. It's a it's a hidden spot in the hospital. There may find out that their friend or family member has a NICU baby. They don't know what to say they don't know whether it's fans so sorry. Right? And or congratulations or that that's the hard part about community members. They want to support you, but I'm not sure what the right words are and we try to celebrate the baby, celebrate the birth celebrate that. But being mindful of how traumatic this is of the devil, mindful of what they're going through hour by hour, and that's really important to remember.


Daphna 14:48

That's awesome. i i i That's what I love about icbb is you're just so focused on how individual and each A situation is but really about celebrating individual milestones and get we have tons of programming that we want to get to. But I think about your story, and there must have been some experiences during your time in the NICU that made you say, We can do this differently. And, and we've spoken before, and you only have great things to say actually about your experience. And so I am hopeful you can tell us a little bit about what the kind of family integrated care experience you had was like, because it was actually pretty good. And then what made you say, but I still think that we can do more.


Elizabeth Simonton 15:46

And I love that question, because that's the truth. Here in South Florida, we're blessed with some of the best medical and health care teams in the country. I mean, our health care here is nationally renowned for NICU babies. And what we know is that babies that survived here in Miami might not in other places of our country, or even in our world, right. And we're so blessed by that. And we know that the healthcare teams are doing such an incredible job of taking care of the baby, what we say, because our parents have told us this is that ICU baby really takes care of the family, where and health care teams, we partner with them, we collaborate with them. And they're grateful to us for that, because even though some of the nurses get involved in it, even physicians get involved in so many of the complexities. And sometimes it's nice to have let's call in ICU baby to help with this. And specifically, you're right, my experience was was incredible. And we have you know, my son came home he is, you know, the end of the story is he has a healthy seven year old getting in trouble in school, and it's everything a parent would really want a child. But my experience, I was in open Ward, I was not in a private room. And so therefore I saw the the isolettes, you know, row after row next to each other. And there were two really, and I would love to meet these mothers. But there were two really critical points where I was sitting next to my baby that what made me realize that we could do better. And it number one was first of all, I was the only one that was there all day in that sport. And I was surprised at walking into the NICU. I remember my first thought was, Where are the parents? Why aren't they share their babies here? Where are they? And as I talk in the community about that first initial thought, my colleagues and friends were were were they were really, you know, they they have the same initial reaction. And so that was the first release. How come? They're not here was the question in my mind, right. And then there were two women that one was across from me, and one was the left and the the one across from me, she would come every night, one o'clock. By her baby's bedside, she couldn't touch the baby, she just would hold hands. And I thought to myself, what is it that's getting her hair at one o'clock at nine o'clock. And she told me I have to work all day. And my baby's been here already for three months. And this is the only time I can get here. And I'm always tired mother everyday walking enough to work at nine o'clock to be with her baby. That really stuck out to me. And then the other thing, and I won't forget, this is the mother that was to the left to me where they did the carseat test on the baby. And the baby fails. But a second time actually speaking with you now I get emotionally, I will not forget the cry that came from her mouth, which was an old deck. She was told one more time that that baby could not go home. And she had been there for weeks, perhaps even months. And I remember thinking to myself, who's holding her hands, who's going up, I wanted to write there I wanted to. And it certainly wasn't my goal to set out and start a nonprofit. But at all actually I was looking to volunteer. But when I realized that there was this void in this gap in our community, that's when I started talking to other members of our community. And they said, well, let's do something about it. And that's been the evolution of ICP.


Daphna 18:53

That's awesome. And I think it speaks a lot to the kind of person that you are because you actually turned around with three little three little children at home, and you had to have a professional career, and in a very short time set up this organization. So how did you do it? How did you get there? Well, I


Elizabeth Simonton 19:17

think it's a kind of a combination of a lot of things. You know, we do I'm lucky to mentor some women that are starting similar programs. And but I think the combination was I was surrounded by a group of families and women particularly in our community that had the passion to help also and saw that, you know, heard my story heard their story. My colleague had lost a baby and in Jackson at 28 weeks, so she had that extreme and I had this six day extreme. So we came together and then I had some really incredible partners that also came on really early. So this was certainly not created only by me. It was a combination of those brilliant minds are those three others joining me. And then also wonderful friends and family that said, here's $25 Get Started versus $100. And that funding and then also, we have here in Florida Fiscal Sponsorship on so Kiva skin Community Foundation, I didn't even live in Cuba skin and I went out and I said to them, I have an idea, but I can't start a 501 C three on my own. And they were wonderful and took us under their wing, and allowed us to really operate under them until we were too big, and they kind of scooted us out and said you're doing. And now we're of course we stand on our own. But I think it's the combination of just caring individuals in the community. And also, there was no one else doing this. So we had the great opportunity. I'm sorry. And one more really critical thing is the hospitals, hospitals that allowed us to enter their NICU with a team of volunteers, and allow us access to the families because truly, we couldn't do this without hospitals partnership.


Daphna 21:01

It's amazing. We've talked on here before. So I want to ask this question that I know Ben has some burning questions about how parenthood changes you. And then now you also have this kind of passion project, which it was in its inception, and how it kind of has changed your total trajectory. And I think that's true for a lot of families in the NICU, you know, their lives are never the same. And so how do you? How do you balance that?


Unknown Speaker 21:38

Balancing the family life and the career life?


Daphna 21:42

Yeah, I think that's a that's something that all many parents find themselves in, but especially the NICU family.


Elizabeth Simonton 21:51

So for us, you know, balancing it initially was a little challenging, but what we've done with ICU babies, I think we very intentionally grown. We are a collective primarily of mothers that have had a NICU experience. And what we know when we leave the NICU is that there really is this next chapter of the NICU. Right. So that means instead of having physicians and nurses coming to the bedside, now we're driving all over in Miami traffic, meeting with physicians at their office. And so it's a challenge. So even when we invite families on to our mentorship program, we always make them wait a year, before coming on, because we know that dance off during the NICU is very, very difficult. And you can never really estimate that a discharge, people thinking charges the end. But that's kind of a misconception, actually, if your parents go home, and they're frightened, they've had you all standing bedside, and now they're having to learn how to, you know, kind of, are they crying because there's something wrong and I have no one to turn to. So that was hard for us a little bit. But I think, you know, as an as a family with, still I have a different child that has a medical need. It really is finding strength in bringing your children into the world that you're in. So my children are very involved with ICU baby friends are involved with RSV, baby. And I think that that's kind of the ripple effect that you want, as you said, if parents have this experience is finding a way in the community to get involved in a way that's meaningful to them. And that allows their family to, if it's possible, celebrate their NICU experience. We know NICU experiences don't all have happy endings. So we that's something that's super important for us to acknowledge. Or to honor their experience. Honor that baby. And that's really important to us.


Ben 23:40

I wanted to I think we've, we've talked a lot about the the goals and the mission of ICU baby, I want people to get a very realistic picture as to what you guys do. I apologize. Can you can you walk us through some of the I know I've been at the bedside, I know all the things you guys do. I know what you guys bring to these parents. I know the support you provide. But for people who are listening who are not in the Miami area, and who are in a different state or in a different country. Can you describe to them what it actually looks like when you guys enter the unit? Because it's it's a it's a fun experience?


Elizabeth Simonton 24:16

Sure, extra. So we really we have three pillars that really leverage our programs, right. And I've said that before, we have the emotional support, informational support and the financial support, what we're known for, and I think this is where you're, what you're speaking about, is entering the NICU. That's our emotional support. And so what we do is we and this has changed by the way since COVID. I'm excited to share that update with you. But what you're accustomed to is us walking in every Wednesday, and we would go bedside to bedside and sit with either for 10 at 10 minutes or an hour the families that were there to really meet them where they were on their emotional journey that day. Sometimes that would mean we're celebrating, you know, let's see this the first time I was breastfed the first time I had grew care Sometimes we weren't celebrating. And sometimes they didn't want to talk, which was fair also. So this was the bedside emotional support that we provided by having a parent mentor who had a NICU experience with their own coming in and talking to that parent that was going through the NICU at that time. And there's something about having that NICU experience that gives you credibility with parents, they know you've walked in their shoes, and it's really an incredible connection predicts, particularly linguistically, we're very, as you know, in a very diverse community here in Miami. So we have Spanish speaking, mentors, we have Asian Creole speaking mentors. And that powerful connection is what we what we had during these bedside visits. Now, of course, the next question is what happened when the hospitals shut down? What happened with COVID, when you couldn't go bedside to bedside. So never would have imagined I'd be running a tele support program. And why we're so excited about that program. Although it tested the capacity of ICB, we had to increase our volunteers by 10. That by 10, actually 10 people is that we were able to meet families that we weren't otherwise able to that side. So as we talked about barriers to families being there, we know that not every mother or father, or caretaker can be there at noon every Wednesday, right? So now with tele support, we've made more connections with more families than we ever did prior to the pandemic. And now that we move back in on an emotional support program, we're doing hybrid. Amazing. Yep, we're doing hybrid. And that's been a really, so that emotional support pillars that bedside support. And then we also have these meat, we still have these meals, where we unite families, we say, people like to talk over breaking bread together, right. So what we provide some food they will come especially there, especially right outside the NICU where they're not having to travel far. And this has become our organic informal support group. When we call it a support group, they don't come when we say we're having Olive Garden for dinner, we'd love for you to join us, we have a special gift for your baby, they come and not only do they, they talk to each other and they create those bonds, not necessarily with the parent mentor, but they create the bonds with the other families that are going through the same experience at the same time. And that's also a critical emotional program as well.


Daphna 27:21

You know, we, we just had another interview where we talked about how neonatal neonatology has changed. And in certain places in the world, it's still like this, where the families who have babies in the NICU never leave the NICU, right. And they have that community. And here, especially in the States, we lack that that community for so many reasons, right, because of our structure and because of work and the financial underpinnings of our of our society. But you're finding a way to create that for families. And I, I hope you could tell us a little bit more about the you know, what you've learned through the meaningful meals, because I think it is a model that other places can adopt.


Elizabeth Simonton 28:10

And I thanks for asking our meaningful Meals Program is probably one of my favorite. And the reason for that is exactly what I said, it's not about bringing people together support groups and calling it out it more it's more of the organic support group. And why it's important is that what we've seen here in Miami, again, with the linguistic challenges of some families, is that we've had and the proudest moments are an English speaking family with a 28, weaker, and a Spanish speaking family with a 20 weaker having a translator in between them and supporting each other because of their shared experience. And that's invaluable. And we know in the NICU, because of HIPAA and other protocols, you always can't unite around an isolette, they have to have a separate space. And this space has allowed them to do that. And what we we talked about a lot with ice babies, we need a way to get there. So we talked about irredentist, what gets them to the meal, what encourages them to leave their babies bedside, which nobody wants to do, right. And a lot of times it's that something to do with their babies. So I mean, a program has our cuisine and crafts program. Very popular because folks come down and they make a baby box, a memory box for their baby, they do the painted picture frame for their baby, and that gets them there. And you'll see a lot of times, some parents just come down and they don't say a word. Feeling that craft allows the net space to feel it will allow them that space to get away from the NICU but not too far. So these meaningful meals programs have really been beneficial. And again, it's about meeting families where they are. Some people will never go to a meaningful meal program, but they love that bedside support and some people have no interest in having a parent mentor, but going to a meal is what would unite them with other pampered parents. So it's offering this multitude of programming that really needs parents where they are.


Ben 30:03

I really, really like that. And what I like about it is that it's not sophisticated, right? I mean, I think what what you're describing is some of the basics of a shared human experience that are going to bring people together, in. And we tend to forget in the NICU, that there may be differences, like you said, linguistic, the babies may have different pathologies, but the things that unite us are more numerous always. So So I really, really, I really liked that. I wanted to ask you a little bit about we're talking about ICU baby, and we're located in Miami. But I wanted to highlight a little bit some of the things you're doing with mentoring other programs so that these initiatives could blossom around the country and even outside the boundaries of the United States if if needed. How are you approaching that issue, which it's not, it's not an easy one.


Elizabeth Simonton 30:56

It's not the mentorship program that we've developed as again, then in collaboration with the hospitals, right. So we need to have that access to families. And with ICP, we were lucky that healthcare teams trust us. That's our number one platform, what we end what they do is that we're an immediate referral. So if a family is going to be in the NICU for two weeks or more, that family is immediately referred to ICU baby, it's an opt out program. Right? credible? Because if you came to my bedside and say, Hey, do you need support? Of course, I would say no, right? No, I'm fine. I've got my grandma and my mom. But to the contrary, what they've done so brilliantly, is they've put everyone in our program. And with TELUS support, if someone wasn't interested in that mentorship program, they just didn't have to call us back. No problem. And it was very, like you said, it's an informal and solicit simplistic model of what I see babies doing, I think, is what makes it work. Not overly complicated. And And when there is a situation where you know, mentorship, particularly on the phone, there's not much monitoring. So I know that's been a question I've been asked as well, how do you know that that mentor is saying the right to the right. And the beautiful thing is, all mentors should and must go through extensive training programs we don't do is take a former NICU family who perhaps is still experiencing the trauma and pump them with a current NICU family always have a training program that they require our volunteers to go through ICU baby has a multi level training programs are mentors. And then we do buddy calls. And it's really a process. It's not just that quick, let's make this connection. It's a very intentional process. And I would encourage any hospital that's looking into a mentorship program to say, okay, what are our systems getting that mentor connected to that family? And that's really what's been the root of our success, I think with that.


Daphna 32:49

What you describe actually does not sound simple at all. It's a lot, a lot of work. And so that's why again, I want to highlight,


Ben 32:57

I wanted to say I didn't mean to say simple, right? I meant to say, describe that. It's simple. I know. But I use I use the word simple as well. But I wanted to use that word specifically. Because I think sometimes when you think about a project, like ICU, maybe you say, Oh, my God, this is so many things, so many barriers. And then you've described so elegantly how, like a few interventions, like bringing people around a meal and just showing up at the bedside, just like showing up and the impact that this can have on a family and ICU and a whole community. That's what I wanted to highlight by saying, Yeah, simplicity is the highest form of elegance, right? I mean, that's what we say in design. So,


Daphna 33:33

so well, that and that was my point with the comment is you are you are building something enormous and enormous. But but one of your most successful programs is that meal time or craft time, if you can't afford the meals, where what I think NICU parents struggle with is no one in their immediate community, their families, their friends may understand what's going on. But no matter what differences they may have with another NICU parent, that's something that they share, which is so beautiful. So I hope people can can say, well, at least our unit could do that. And you guys are also doing another amazing program where you really are kind of harnessing the power of your local community and resources to the Youth Ambassador Program. Which is amazing. Because not only are you doing great things for families, but you're providing opportunities for people who are looking for volunteer opportunities. So I think that's another program that other places could could easily adopt. So tell them,


Ben 34:38

let's tell ya, I want to I want to be I want to tell us the youth Youth Ambassador sounds like yeah, go ahead.


Elizabeth Simonton 34:44

That goes back to the connected human experience that you were just and this program is one of our most acclaimed which I always laugh about because these teenagers are so passionate. So what we do is we we reach out to the community And we find former NICU babies that are now teenagers that are now adaptable. And we find former NICU siblings who have had an, you know, a brother or sister in the NICU, recognizing that ICU baby supports the whole family, not just Mom, Dad caregiver, we support the siblings to they're very much impacted. So these ambassadors do so much for us to raise awareness. They are hope for the family. I'm currently in the NICU. So one of the things that they do that is my favorite time of the year is they do a NICU car parade. Now, this was born also out of COVID. The ambassadors, they get in their car with their parents, and they make signs I was 23 weeks, and here I am. And now they're six one. So NICU parents, this is at


Daphna 35:53

tears. And so I can just imagine what that would do for a parent in the unit.


Elizabeth Simonton 35:59

And self made me hospital, they bring down the parents at that time, it's only in 10 minutes. They bring them down and They line them up alongside the route. And these parents see these towering, you know, eautiful healthy children for you know, holding the science and it is so magical. And that is human connection that these ambassadors bring. And they will they help us with our community walk here that we have for the NICU. They help us with projects at their school, they help us pack things for a special gifts, like for Parents Day that's coming up in May. They help us in so many ways, but I think their ultimate power their superpower is the hope that they bring parents that are hitting the cue to see them now. They see their future. And sometimes it's hard to see the next hour in the NICU as you know.


Ben 36:52

That's so awesome. Because Because right, you're describing that parents from the NICU, look out the window, and they see this parade of former babies who were in this same position they are now and basically like like a parade. I think you guys call it the whole parade, right? The parade of hope we have to


Elizabeth Simonton 37:09

have the whole parade which is our community walk and we have the whole carpet The carpet is for the parents comes down. Yes, good, so good.


Daphna 37:21

We've been talking a lot about hope and trying to show parents kind of the success stories. And I find actually that a lot of parent groups shy away from bereavement support. And icbb has not shied away from bereavement support at all, actually. And and obviously, it's complicated, and it's complex. And it's difficult, especially since you have some parent mentors. But I think it's really important, and it's a it's a needed thing that's lacking, you know, countrywide. So tell us more about your bereavement care,


Elizabeth Simonton 38:00

bereavement support was critical from our initial programming start, it is not something we've fallen into it is something that we recognize, because what we know about the NICU is that there are no guarantees. And that's the scary part. That's why hope is important. But realism is also important. And in everything we do, whether it's advertising for a gala or advertising for the walk, we always point out that we were celebrating the miracles and we're honoring those that didn't make it. And that's critical to our messaging. And, but more importantly, when a family does lose a baby in the NICU. We pair them with another mentor that has lost and that is our number one requirement for that mentorship pairing. A lot of this is founded on my co founders experience she had lost her baby before her baby died in the NICU. We also can't shy away from saying baby in the NICU, she teaches me that my baby was not lost my baby die. That wording is being taught to us. We train all of our mentors in grief support for that reason. And she said when when the social worker came to speak with her, the social worker hadn't experienced a loss and she didn't have that credibility and a co founders mind to really help her through that. You know, it's such a unique experience to lose a baby in the NICU and have all those dreams and hopes for the future. A Bereavement Support Program is really route that rooted in a parent's individual journey with bereavement, knowing that some parents need a lot of support and knowing that there are layers of the bereavement journey. So we pair mentors immediately on the loss. And they call once a week for four weeks and if there's no answer, it's fine. We just experienced that there was no answer and six months later they called that connection was made they were ready. With bereavement even more. We have to meet the parents where they Er, but it needs to be there.


Daphna 40:01

And maybe somebody was there, that's awesome. Those


Elizabeth Simonton 40:05

are invaluable. And we're lucky here in our community to have a bereavement support networks that we have those parents go through an assessment. And we're just mentors, we are not psychologists. So if there's a health need it, we have to have the wisdom to recognize where peer support, we're not psychological support. So we do refer out also.


Ben 40:27

And this takes a lot of strength and courage. I know, from experience that I don't like to make those posts, posts, you know, the baby passing away phone calls, and Daphna has usually been the one who reaches out to the families. And it's, and it's like, yeah, I have a lot of respect for that. Because it's it's not a pleasant experience, especially for us when you were involved in one way or another in the care of the of the baby. I wanted to ask you a little bit with we've been talking about the families and ICU baby and this perspective, but I'm wondering from from the years that you've you've, you've worked and ran ICU babies, what have some of the things you've learned that you could share with us for clinicians? And what clinicians can do to be partners in these right. I mean, in these in these projects, and these initiatives, not so much on the ground level, and maybe attending the gatherings, but I'm saying in the way they conduct themselves and in the way they deliver care in the ICU. What what are some of the experiences you could share with us?


Elizabeth Simonton 41:42

Sure. I think what NICU parents crave most is communication, want to know what's happening. And I think what's critical for healthcare teams to remember is that that communication could even be we don't know, just just that the messaging that presents the healthcare teams that makes parents feel at ease, where we see parents, you know, kind of shy away and back off, they're their child NICU carers, when they really don't know what's happening. It's them. So sometimes the answer of we don't know we can't be sure yet, or we're conducting these tests is just as powerful as the answer. So I would say to health care providers that and physicians and nurses that communication with parents in the NICU is really key. And you should not. I guess the other thing that's important to remember is that the intimidating stature that healthcare teams, particularly doctors to take, what we know is that a lot of our families are intimidated by doctors, the doctors know best and we're going to we don't want to ruffle any feathers. We don't want to say anything, it would be best practice really would be to share the information, but then to invite dialogue, invite question, remind them that they are part of their baby's health care team, that they're critical to their baby's health care that they're not just a visitor so to speak, but they're not server, but they're actually a really critical part and, and doctors particularly know that outcomes may be and often are better when moms and dads are participating caregivers are participating in the care of their baby. So that communication is also really important. I think, you know, most parents, as we've mentioned, don't know what a NICU is, and therefore they don't know their role in the queue. So as physicians, reminding them of how critical their participation is, is really key. And that involves making them feel comfortable in the NICU as well. And and that could be recognizing their specific culture and respecting their culture. That could be oftentimes if they don't speak English as their first language, they can converse in English, but they can't really understand complex medical conversations in English. So offering translators, when when we talk to families, they like to be included in rounds. But families don't know what rounds are. That's a really boring word. And why the heck do we call it rounds? Right? It doesn't make sense. So explaining, we're going to invite two rounds, but then explaining what rounds are. You know, rounds are our teams circulating the NICU and speaking about your baby and they want to be invited to those conversations. That's a really active way of including them in the baby's care. And then, ultimately, something that I see baby's very passionate about is recognizing the additional barriers parents have to NICU. And those three primary ones are childcare if they're siblings at home, work responsibilities, because they need to make ends meet and transportation ability to get to the hospital for those three reasons are the primary ones we see. So healthcare teams, acknowledging those barriers, doing what they can to mitigate those barriers, if it's possible, is really important for the parents to feel seen and understood during their baby's NICU journey. Because oftentimes, we'll hear you know, mommy Smith isn't at the bedside. And we wonder why. And well guess what, mum Smith has four kids at home, and she's trying to work, and her husband's working at night. And, and that's why. And so trying to understand where the parents are coming from, does help parents feel more supported.


Ben 45:41

I think I'm going to go one step further, I think you're talking about these as barriers to the proper delivery of care. But Daphna and I have been speaking about this for a while now, when it comes to the way we conduct medical research as well. So when we're looking at a lot of the research being published, and all the data being collected, demographics will include mother's age, maybe your level of education, but no one will ever look at how far away was this family from the NICU? How much gas does it take? Do they have transportation? Do they need a friend to drive them to the ICU to come see their babies? How old are the other three kids? Are they all out in on? Or out of the school and in college? Or are they like three, four and five years old, and are highly demanding because they're just young children? And then all these parameters when we talk about them on the podcast, or amongst ourselves, we all realize are tremendously important. And yet, this has I mean, this is an area where if you're listening and you're a provider, or anybody interested in pursuing research, this is an area that is untouched of what is the impact of all these barriers on the outcomes of these babies? Because too often we have parents who like you said, what kind of work do they do not to find out their level of education, but what time do they get out of work? And what is the strain? Nobody, like literally, I am not, um, there may be one or two papers out there. But this should be present in every single study that assesses babies in the NICU. And it's just not there.


Elizabeth Simonton 47:21

I'd love to comment on that. Because actually, that's where I see baby gets its most acclaim here in the community is that exact issue that you're talking about. This is where we win the most awards for innovative programming, which again, comes back to a very simple model. What we found in starting ice baby with emotional support programming, is that the only families that could benefit from our meal program and our mentorship program was families that could get there. Already, they're able to engage in in care without their baby, they're able to learn from the health care team, and now they have emotional support at the hospital. But how those families that can't get there. We know locally, we don't have a strong transportation system here public transportation. And we know across the country that babies are transferred from afar into hospitals that could be 100 miles away from their home, what does that look like for our healthcare system? But really, for organizations like ours that can back though, where are that this is kind of left off? So our program here is, I think, extremely simple. We offer a stipend to families to supplement transportation costs. And this is in collaboration with the social workers. We do not make any financial determinations, because that's not information that we need to have the social workers say this family is of a low income level and could benefit from this stipends that you offer. And it's not cash. It's not, you know, unfettered access. It is a segment that goes right to a gas station right next door to the hospital was $120. But what do we know about gas prices right now? Oh, boy. $150 a month. And that is all it has successfully taken for us to get a family to their baby, a month of their stay. And our transportation benefits if outcomes are met for that program are renewed month after month until the baby is discharged. And we have a 98% renewal rate. And what that renewal is based on is parent caregiver getting to the hospital to come with that second. And once they're they're engaged in a developmentally appropriate amount of direct care, that could be opening the side of the isolette and singing to the baby. And what the hospitals have found that we're partnered with on this is that we see parents in the NICU much more regularly. There's stress about the finances associated with getting there are gone. And so now they're able to kangaroo care. I mean, some of the most beautiful testimonials ice baby has is We give the statement The next day the parent is there and they're able to get through their baby. And that was the developmental outcome. Yeah, us physicians are looking for. Yeah,


Daphna 50:09

it's immediate.


Ben 50:11

And coming from Europe, were socialized medicine, which is not perfect, but but has its benefits. I think the idea of, of removing the financial preoccupation from parents when it comes to either paying medical bills or paying any bills related to hospitalization is more than people can imagine. Nobody should have to think of finances when they're in this predicament. So So kudos for for doing that.


Daphna 50:41

Well, that actually brings me to my question, and we're almost out of time. But we've talked thank you for some really concrete things that I think are feasible right for people to do, maybe not on the scale that you guys are doing it, but certainly in a way that may help their units. And we've talked a little bit about, you know, the little things that we do with families like inviting them to ask questions and explaining some of the lingo those are things we can change every single day. I wonder, though, in your experience, Now, having done this for nearly a decade, how are ways that we can in our organizations and in our hospitals, like what is the systematic change, like in our communities and in our medical systems? And that would provide the most benefit for families? Other than letting in parent groups like, like what you're doing?


Elizabeth Simonton 51:46

That's a great question. I think, really, the systematic change that can be made is this concept of family centered care, which I know you are both such big proponents of which is recognizing the family is really at the core of the care of their baby, and that the parents and caregivers are a critical part of the health care team and should be included at all times. That is where I see it goes back to what we talked about with communication with regard to parents feeling comfortable, holding kangaroo in their teeny, tiny baby, making them feel a part of that bedside is what I think is absolutely critical. Because what that does is it sets up a parent to be an involved and active participant, their babies care from the start of life. And so I just charge, which we hear time and time, again, is a very bittersweet time for our families, they feel like they've been very involved. And so they're more comfortable taking that big turn for them. So the systematic change really comes in inclusivity, with the care of the baby, and involving those caregivers and parents, acknowledging their barriers, acknowledging siblings at home, inviting them in when they can, and really, arguably reducing any barrier to a parent being at their baby's bedside, particularly now as we see COVID Hopefully melting away, but if it comes back, balancing the parent not being there with some of the effects that that could have on on the baby developmentally.


Daphna 53:18

What I what I love about that thought and that concept, and, you know, we think about family centered care and family integrated care, something that's like short lived about their time in the unit. But what we have the opportunity to do and what ICU baby does very well, like you told us about some of the requirements for the stipend, is really teaching parents about those bonding moments, those developmental care moments. And we know that development for premature babies and medically complex babies, mostly happens outside of the NICU. But we have this opportunity to teach them about it give them a crash course in in child development, and what are the important ways to meet your child's developmental needs, that that doesn't end when they leave the NICU. So those units that are able to do that those parents take those lessons, and they integrate them into the future of the baby. And so I think it's so eloquent is the word Ben keeps using how how you guys are able to kind of weave in the those educational components that probably have maybe the biggest outcomes on on development that we we can do. So I really am grateful for that. And I wanted to, to highlight that because it's not just about making families feel better, which is great, which is we should focus on but it's so much, it's that and when we talk about changing neurodevelopmental outcomes from the NICU,


Elizabeth Simonton 54:54

and if you don't mind, I would just love to comment on that. I mean, that's really been the evolution of what we've done in these NICUs is One big emotional support and recognizing kitty Second, we need to get them here. So we bring the financial peace but transportation program and really where we, as an organization and the evolution is, is exactly what you're talking about. Well, now parents are bedside, we've got them there, we've got feeling good, they're emotionally supported. But hey, they still have no idea what an neonatologist is they still haven't know how to breastfeed in the NICU. They don't know how to self care in the NICU. And this is really where our focus is right now, particularly as we look at the social determinants of health and how your educational level impacts your NICU stay. And we're developing what we call our it's our nest program. So NICU education support tools. And this is advice by parents, for parents, so by NICU parents, for NICU parents to say, you know, what's a checklist for going home? What do you need? What is what should you try to learn while you're there? What is that respiratory therapist? Where are they? It's this opportunity. It's almost like a teaching moment. Well, while families are there, we've got them in this area where they've there. They've got experts, they've got you as physicians, they've got nurses, they've got physical therapists, and this is a great opportunity to teach them about how to care for their baby so that when the baby is discharged, they can continue some of these really important practices and caring for their baby. And it really sets the family up for long term success, especially with a medically fragile infant.


Daphna 56:35

Yeah, the other thing we know, we've reviewed just a few papers recently, in the last few months, about how the stress and anxiety of a NICU admission continues for months to years. And it impacts the way that parents parent, for lack of a better word for the way they bond with their babies and the way they have those ongoing interactions for potentially a lifetime. I think once your NICU parent you always as you always are a NICU parent you associate your being your parenthood, with with the NICU. And so I think that for units that think you know, or are coming around, or maybe on the fence about this family integrated care that they may see as, as potentially, you know, a fluffy thing that we do. That's nice. It really I mean, it changed, it's it causes generational change is I think what I'm trying to say is that it helps families make it through the the unit, it helps them better bond with their babies, it changes their relationships, and that has kind of a domino effect. And so I can't underscore the work that you guys are doing and the way you have been innovative and providing these opportunities for families. So I know we're short on time, I always let them close out the show. But I just wanted I hope that people have taken the opportunity to just take some of these gems that you've left us with, about things that they can do like today in their unit and hopefully plan for the next stages for for their family integrated care.


Elizabeth Simonton 58:18

Well, thank you so much for having me on. And thanks for being trailblazers and highlighting work like ours. You know, it is our hope really that we we can inspire other hospitals to make some of these changes and, and to bring in former NICU families and I thanks for highlighting the work we're doing and and recognizing that it can be done really anywhere. And in any support we can provide for that would be phenomenal.


Ben 58:45

My last question to you, Elizabeth, as we know that being a doctor in the NICU is is life changing. Being a parent in the NICU is life changing? You have this added experience of being a champion for NICU parents and NICU babies and NICU families. How has your NICU experience changed you as a person?


Elizabeth Simonton 59:04

It's this is the most beautiful question. Because when beyond the blessing, I mean, sometimes I wonder, you know, why me? Why do I have this privilege of of being able to touch so many families and I and it really is just that it is privileged to have a team and the hospital is so supportive of what it means to support NICU families. It's changed me in a way that's really immeasurable. And it's been a blessing beyond belief to be able to utilize some of the skills I have in order to mobilize a team and it really is about Team Impact families in such a robust way.


Ben 59:42

That's beautiful. I think I think that's a definite right, we can end on that note. It's


Daphna 59:46

anything more than that. So we really appreciate your time, and we're hopeful to see you in our unit soon. Thank you, Elizabeth.


Unknown Speaker 59:56

Thank you so much.




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