Hello friends 👋
In this latest episode of The Incubator Podcast, hosts Ben and Daphna delve into the world of extremely preterm infants with a special focus on the Tiny Baby Collaborative. They are joined by an expert panel featuring Dr. Leeann Pavlek, a neonatologist from Nationwide Children's Hospital, Matt Rysavy, director of Learning Healthcare at UT Health Houston, and Courtney Vier, a mother with firsthand experience raising extremely preterm infants.
The discussion explores the challenges and advancements in caring for babies born at 22 to 23 weeks gestation, often referred to as "tiny babies." Dr. Pavlek shares insights from her research on developing and sustaining a small baby program, while Rashavi highlights the collaborative’s mission to optimize care through research and shared protocols. Courtney offers a deeply personal perspective, recounting her experience as a mother navigating the complexities of extreme prematurity.
The episode emphasizes the importance of collaborative efforts, evidence-based practices, and family-centered care in improving outcomes for these vulnerable infants. Through thoughtful dialogue, the guests provide a comprehensive look at the ongoing efforts to support both clinicians and families caring for tiny babies.
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Learn more about the tiny baby collaborative here: https://www.tinybabycollaborative.org/
The articles covered on today’s episode of the podcast can be found here 👇
Ethics and etiquette in neonatal intensive care.
Janvier A, Lantos J; POST Investigators.JAMA Pediatr. 2014 Sep;168(9):857-8. doi: 10.1001/jamapediatrics.2014.527.PMID: 25070167
Neonatal Intensive Care Unit Resource Use for Infants at 22 Weeks' Gestation in the US, 2008-2021.
Rysavy MA, Bennett MM, Ahmad KA, Patel RM, Shah ZS, Ellsbury DL, Clark RH, Tolia VN.JAMA Netw Open. 2024 Feb 5;7(2):e240124. doi: 10.1001/jamanetworkopen.2024.0124.PMID: 38381431 Free PMC article.
Prognosis as an Intervention.
Rysavy MA.Clin Perinatol. 2018 Jun;45(2):231-240. doi: 10.1016/j.clp.2018.01.009. Epub 2018 Mar 1.PMID: 29747885 Review.
An Immature Science: Intensive Care for Infants Born at ≤23 Weeks of Gestation.
Rysavy MA, Mehler K, Oberthür A, Ågren J, Kusuda S, McNamara PJ, Giesinger RE, Kribs A, Normann E, Carlson SJ, Klein JM, Backes CH, Bell EF.J Pediatr. 2021 Jun;233:16-25.e1. doi: 10.1016/j.jpeds.2021.03.006. Epub 2021 Mar 7.PMID: 33691163 Free PMC article. Review. No abstract available.
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The transcript of today's episode can be found below 👇
Ben Courchia MD (00:02.028)
Hello everybody. Welcome back to the incubator podcast. It is Sunday. We are back with another interview and we have some amazing guests for you today. Daphna, how's it going this morning?
Daphna Barbeau (00:12.994)
I'm doing quite well. You know, we're talking a lot about tiny babies in our unit. It is the hot topic in neonatology right now. So we are very pleased to have this whole group of tiny baby experts in with us today.
Ben Courchia MD (00:28.012)
That's correct. A group that we got to know at the CHNC symposium and learn more about the Tiny Baby Collaborative there as well. So without further ado, we're very happy to welcome to the show Dr. Leanne Pavlik, who's a neonatologist from Nationwide Children's Hospital and an assistant professor of pediatrics at the Ohio State University College of Medicine.
Daphna Barbeau (00:31.17)
Mm -hmm.
Ben Courchia MD (00:52.556)
We also have with us Matt Rysavy, who's the director of learning healthcare at UT Health Houston in Texas, and Courtney Veer, who is the mother of three children amongst who two boys aged five and three who were both premature babies and who's one of them was actually an ERBW. So thank you all for making the time to be on with us and to talk to us a little bit about the Tiny Baby Collaborative.
Matt (01:20.928)
Thank you, Ben. Thank you, Daphna.
Leeann Pavlek (01:23.363)
Yes, thank you for having us.
Kourtney vier (01:25.41)
and we're excited to talk about Tiny Babies, so thank you.
Matt (01:26.112)
excited to talk to you.
Ben Courchia MD (01:28.556)
Absolutely. So I guess my first question for you, Liane, would be you wrote, you were part of, you were the first author on an interesting paper in seminars in perinatology looking at the perspectives on developing and sustaining a small baby program. And so I think what's on everybody's mind is should I even take this on? Like,
small babies is a small segment of our population. It's not encompassing the majority of the babies that we care for on a day -to -day basis. So is it really worth, is it really a good bang for our buck to invest all these resources in standardizing the care for tiny babies and not work on something else? So I'm just curious to hear your thoughts on that.
Leeann Pavlek (02:14.403)
Yeah, that is a great question. And I think something that you talk about a lot. So one thing I will say is, although these patients are a small number of patients that we take care of, they certainly are patients who end up being in our units for months and take a lot of resources and a lot of care. And what we know from the literature is that as the years go on, rates of us caring for these patients go up and up. So I think that it's kind of our duty as those who work in the NICU to make sure that what we're doing for these patients is the best that we can do based on what we know.
in our own units and based on research.
Ben Courchia MD (02:47.404)
Matt, any thoughts on that?
Matt (02:50.4)
Yeah, you know, babies born at 22 and 23 weeks are about 1 in 500 births. So rare, but not crazy rare. That is in the realm of more than the incidence of Down syndrome these days. So somewhere between 1 in 500 and 1 in 1 ,000. And in our NICUs,
Ben Courchia MD (03:30.476)
Mm -hmm.
Matt (03:47.104)
I think we have an obligation as a field that if we're going to provide intensive care in this group to make sure that we know best what we're doing so that we can provide the best care for those babies and their families.
Ben Courchia MD (04:02.366)
Kourtney vier (04:10.274)
Matt (04:13.024)
Hey.
Ben Courchia MD (04:17.484)
No problem. No problem. But it works. It works. But I was going to go to you next. And so that's why I wanted to make sure that your mic was working OK before I. No, no, that's OK. OK.
Daphna Barbeau (04:17.986)
No, that's good. Sounds better.
Kourtney vier (04:26.21)
I'm so sorry.
Matt (04:29.28)
Ben Courchia MD (04:46.712)
You got it. You got it.
Leeann Pavlek (04:48.995)
I'm sorry.
Daphna Barbeau (04:49.378)
Do you want to do it over?
Ben Courchia MD (04:53.292)
Leeann Pavlek (04:57.047)
I'm sorry.
Daphna Barbeau (04:57.538)
Matt (05:00.64)
Ben Courchia MD (05:02.348)
Sure. All right. OK.
Ben Courchia MD (05:12.524)
Matt (05:19.936)
Okay, nobody gets to see my you don't want my face here on your website for you
Daphna Barbeau (05:24.642)
Ben Courchia MD (05:27.628)
Matt (05:32.128)
no okay take court nearly and alright
Leeann Pavlek (05:33.223)
I'm going to go to bed.
Ben Courchia MD (05:57.42)
about the care of these infants is actually much longer, spanning days and even the first few weeks. And so Courtney, I'm wondering for you as a mother, was there a feeling like this where you felt that, we just came through the first phase of this really extreme prematurity and we all say the same things as doctors, it's a whirlwind, it's overwhelming. But as a parent, as you go through it in real time, did you feel that you saw these phases?
and were you able to identify them?
Kourtney vier (06:28.386)
Yeah, I think not to go back to your first question for the previous question, but I think what's interesting is you guys as neonatologists get to choose, do you get to care for these tiny babies? And what will you do kind of in the practice? As a parent, we don't get the choice to have a 20, my choice would not be to have a 22 or a 24 -weeker, but that's what I was just given. And so I just want to say thank you to the doctors who are willing to say yes to caring for babies at this age because,
I didn't have a choice is what happened to me. And so I'm just really thankful that there are doctors who are willing to say yes and for you guys to have this podcast willing to talk about it and to start that conversation. So before I answer that, I just wanted to say that because I think that's really important as a parent to hear, you know, as doctors are choosing for me, I didn't get a choice. And so I think that in the whole, in the process of having a baby born at the gestation, there's, for some people it starts as,
Either, you know, I started having bleeding at 19 weeks. And so I knew early on, wasn't sure if this pregnancy was going to last. And so you go through the, will I have a baby that survives? And so there's that phase of it. And then you have the right after delivery, will the baby be able to be intubated? Will they be able to survive that piece? So yes, I experienced, so I have the, will the baby even get make it to delivery? Will they make it to intubation?
Will they get out of the scary phases of my son had necrotizing enterocolitis? So would he make it through the surgeries? And so when you say, do they go through the phase, as a parent, do you go through different phases? Absolutely. It feels like one hurdle to the next to see, will we make it to the next, however many days? Will we make it to the first time that he stools? Which is something as a parent I never thought, like, that's something I should care about. But yes, the...
Ben Courchia MD (08:22.668)
Right.
Kourtney vier (08:24.482)
Absolutely, if I could break down every phase of what we walked through, this would be a much longer podcast and probably not as engaging. So, but yes, thanks for your question. Absolutely.
Ben Courchia MD (08:33.196)
And to clarify what I said in the beginning, I think that most units, unless they are not credentialed to care for extremely premature infants, will take on whatever is needed for these infants. But where I was commending the collaborative, obviously, is to think about this proactively to standardize and organize care in a way that is deliberate for these specifically for these infants. So I don't want to...
I don't want people to think that I was mentioning doctors who would not accept care for these specific patients.
Daphna Barbeau (09:09.09)
I mean, I think that brings up a good point. And Courtney, to your point about how unique and special these babies are, I imagine there are still people in our community who say, well, we've always cared for babies on the edges of viability. And we've always pushed the limits. And we've always, that's what neonatology is, caring for the youngest, smallest, most fragile babies. And the Tiny Baby Collaborative just so.
everybody knows is focusing on the less than and equal to 23 weeks. So tell us, maybe Matt, you can expand a little bit about why it's important that we are looking specifically at this subset of the population. What's special about these babies? And why should units be saying like, we need special teams for these babies, or we need to be part of the collaborative?
because they require special focus different than the other babies in the unit.
Matt (10:10.528)
Yeah, thanks, Daphna. It's interesting. We're a relatively young specialty. Other medical specialties have no doubt come up in the last 50 years. But you have to remember that really our foundations are around the 1970s. When you look at old papers by the pioneers in neonatology, you find there's an old Joseph Butterfield paper from the early 70s where there were about 100
Daphna Barbeau (10:23.714)
Mm -hmm, absolutely.
Daphna Barbeau (10:30.338)
Mm -hmm.
Matt (10:40.032)
We didn't have the levels then, but descriptions of what we think of as I think a level three or four NICU in North America. And now we're talking about 800 in the United States. So we've changed amazingly. And, you know, the old ways that we talk about things really come from that era too. And so we have these terms like late preterm, moderate preterm, very preterm, and then extremely preterm of course is this sort of.
lower bounds category. We don't have a category that's anything less than that. And it depends perhaps on which reference we use, but let's say that's less than 28 or less than 29 weeks. And you see this really widely used by places like the WHO. You see this in papers all the time. Think about that span, 22 to 28 weeks. Can you imagine any intervention that you use at 32 to 38 weeks that should be exactly the same?
Daphna Barbeau (11:37.474)
Mm -hmm.
Matt (11:39.136)
If we put all those babies in a trial and said, let's do a trial of incubator care for every baby 32 to 38 weeks, I mean, how would that go? All the neonatologists would laugh. It's silly. You know, let's do that for respiratory support. Let's do that for nutrition. Any of these things vary so much, and that's because the babies are developmentally different. There's a lot of change between those weeks.
Daphna Barbeau (11:43.394)
Hmm.
Matt (12:06.72)
And I think in neonatology, we've done ourselves a little bit of a disservice by using what are outdated terms. Extremely preterm really referred to what was around the limit of viability at the time that that term came about. And so the doctors who practiced in the 70s and early 80s, it was extreme to have lots of survivors at 26, 27 weeks. And now when we talk about places that have 50 % survival at 22 weeks,
You know, really the reason for our collaborative, the way we like to say it is babies at 22 and 23 weeks aren't just smaller extremely preterm babies. Pediatricians love to say kids aren't just little adults. And I think the neonatologists like to remind their pediatrics colleagues, hey, preterm babies aren't just the same as little babies. They're different. They need different care.
Daphna Barbeau (12:46.594)
Love that. That's right.
Daphna Barbeau (12:58.05)
Mm -hmm. Mm -hmm.
Matt (13:01.281)
And I think the reason we need to talk about having specialized programs, doing special research in this group is babies at 22 and 23 weeks are different than just extremely preterm babies or ELBWs. That is a sort of clumsy term I think now to describe what is a very big category.
Ben Courchia MD (13:22.924)
My next question for you guys really relates to if we do overcome the inertia and say, hey, we want to think about this population, we want to really optimize their outcomes. I think the biggest hurdle that after resources we face is, well, there's a lot of uncertainty. And so it's always easy to implement something when you know what to do, but it becomes so much harder when you're not really sure what to do. And so...
I am just wondering, maybe Liane, you can start us off. How do you organize care for ELBW, for tiny babies, around all the uncertainty surrounding the evidence for these patients? Most notably, for example, interventions to reduce BPD. There are so many of them that we think may work. Some of them that has not really been tested in the most rigorous way, but there's a lot of anecdotal reports. So how do you approach this in a systematic system?
systematic manner that allows you to actually construct protocols and guidelines for a unit.
Leeann Pavlek (14:28.227)
Yeah, that's a really important point. And I think that's where all of these collaboratives come into play, where, you know, at each of our centers, we only have a handful of these patients per year. But if we bring all of our knowledge together, we can have some more significant numbers. And I think so for us, for example, here, we've had small baby guidelines for a long time. But about two or three years ago, we decided to make guidelines for these tiniest patients. And I think there certainly is a paucity of evidence to govern what we should do for them.
So we were really thoughtful in making our guidelines, but also having a plan for how will we track our outcomes. So we don't just make guidelines and set them free, but make sure that what we're doing is working. And if not have interventions planned to track what we're doing and then to make changes.
Ben Courchia MD (15:00.972)
Mm -hmm.
Ben Courchia MD (15:11.724)
Matt, any thoughts on that?
Matt (15:15.776)
Well, I think Dr. Pavlik's right. If we don't work together, it's really hard to learn in isolation. And as the collaborative, you know, there's really three things that we focus on. One is to say that our tiny babies aren't just smaller, extremely preterm infants. And I think that trying to understand what that means is really important. And then to have those guidelines. So you shouldn't probably have the same starting fluids.
in your local protocol for a baby born at 22 weeks and a baby born at 27 weeks. It's actually fairly common, but the physiology and, you know, emerging clinical data suggests that's probably not the right thing to do. The other thing we say is talk to parents and ask what they need. And I think that working together, we have an opportunity to do that. We learn those things on our own in our own centers, but I think by collaborating, we do so much better. And then the third is to say,
Do the research. So, Leigh Ann's right, take the academic approach. If you're going to implement practice changes, and what's really a largely evidence -free zone, there's very little robust evidence to guide what we do. At least do it in such a way that you're comparing against yourself previously or comparing against other centers' outcomes. Are we getting better? Are we getting worse? And maybe, at best, we can organize and do some of the studies prospectively.
Ben Courchia MD (16:24.044)
Mm -hmm.
Ben Courchia MD (16:33.932)
Right.
Matt (16:44.288)
We have through the collaborative a trial coming up here later this summer.
Ben Courchia MD (16:48.428)
And I think it's always this fine line where we want to implement guidelines to try to really accompany the care of these patients, but we also don't want to script every single thing either. We want to leave room for the customization of care, the precision medicine. And so I think that's quite hard. How do you know when to say, well, this is something that we will let the clinicians...
decide on their own versus this is something where we want to make sure we have some input in how things are done.
Matt (17:25.568)
I can give a little insight into this because I've been thinking about it for a long time. A long time ago, I think I was an intern. Two of my mentors at PAS had breakfast with me. And we got into this conversation and it was really, it left a mark on me as you can tell because I'm talking about it all these years later.
Ben Courchia MD (17:46.22)
Do you remember what you had for breakfast that day that will tell us if you...
Matt (17:48.288)
That I don't remember. I remember sitting, it was a beautiful sunlit room and very exciting for me as an intern to be with these giants of neonatology and to hear their thoughts and this came up. And one mentor said, you know where you don't know the best evidence, everybody should just do what they feel is best. Let the best one win, survival of the fittest. This sort of...
Daphna Barbeau (17:55.618)
Right? Mm -hmm.
Ben Courchia MD (18:17.324)
for the evidence you mean.
Matt (18:18.368)
Yeah, let people do what we want. Why would you pick a protocol? Because you're picking it based on what? If you have no idea, just let people do as they wish and then the best one will survive because people will notice that that one has the best outcomes. And the other mentor said, no, no, no, I don't think that that's right. I think you pick the standard. And we all work together and that...
Daphna Barbeau (18:24.706)
Mm -hmm.
Ben Courchia MD (18:25.42)
Mm -hmm.
Ben Courchia MD (18:37.516)
That's right.
Matt (18:47.52)
You know, one, we find that when we are all using a protocol, this is the work by Atul Gawande and others, the Checklist Manifesto, that you pay attention to other details, that there's actually value in just having a process and that we stick with it every time because you check those things off, even if the process is a little bit off target. But I think even more interesting is that when you have a norm, then you're always asking yourself if you deviate from the norm, why?
Ben Courchia MD (18:56.716)
-huh.
Ben Courchia MD (19:17.356)
Right.
Matt (19:18.048)
I've been thinking about this since I was an intern and here you are asking me on a podcast. But I've actually come around to viewpoint number two. I think that there's really a lot of value in having something that's normal and then deviating from it. Now you have to have the ability to give feedback. I run our learning healthcare program here and you don't have learning unless information comes back. So you have to have some sort of...
Ben Courchia MD (19:35.66)
Mm -hmm.
Matt (19:47.904)
System like in a lot of small baby programs, they meet weekly, for example, and talk about how are things going. And you have to have some adaptability. If you're rigid to the wrong protocol, obviously that's not going to work. But I think that the structure is important.
Ben Courchia MD (20:01.964)
And so as we define these protocols, I wanted to turn to you Courtney, because it's something that's mentioned many times on the Tiny Baby Collaborative website, on the publications that we want to have family -centered guidelines, care, and family -centered processes. What does that look like, especially in this context where we say, hey, we want to approach this degree of prematurity in a more systematic manner? How do we make sure that we do this in a family -centered way?
And how does that feel from a parent's perspective? Do we, because I feel like as a parent, we want our kids to get personalized care. I want the care to be tailored to my child. And maybe sometimes you're like, well, I don't want, maybe my kid is special. It's not going to fit into that box that you have set up for him or for her. So I'm just curious if you could share your thoughts on that.
Kourtney vier (20:49.656)
Yeah, I would just say prioritizing like the parent's involvement and encouraging parents with how they can be involved. I think the one thing that you have to kind of figure out for yourself as a parent, but also through the guidance of doctors and nurses, clinicians who's ever helping your baby is to help you to figure out how are you a parent in this situation. So when I envisioned being a mom to Zeke, that's my son, who was born in 23 weeks,
I did not envision, you know, not being able to hold him or to touch him or to feed him in the ways that were normal. And so I had to learn by the help of doctors and nurses on how do I actually care for him and be a mom for him in the situation. And so doctors prioritizing parents input, coaching them best that they can, like here's some things that you can do for your son or your daughter during this season. And so I think that...
prioritizing the parents voice and opinion, making sure parents understand to the best of their ability on what is happening. And so I think so often it's easy for a whole group of people to absolutely understand what we're doing with fluids and medications and vent settings. And as a parent, you're like, I have a degree in human resources. I have no idea what you're talking about.
Daphna Barbeau (22:10.882)
Hmm.
Kourtney vier (22:14.264)
And so taking the time, even though it's such a busy day on a unit and I was able to witness that sometimes when my child would act up, everyone had to rush over to my child. And so I know it's a busy day, but I appreciate, you know, doctors and nurses taking the time to say, hey, I'm going to prioritize you understanding this and making sure that the priority is that you can figure out how to be a parent in a situation that, you know, hopefully no, obviously you don't dream of that.
but really prioritizing coaching parents and being a part of the process is so important.
Daphna Barbeau (22:49.378)
And thank you for sharing. I think anytime we can get, you know, the firsthand experience from families, it's so valuable, especially for people who listen, you know, to the podcast because, and I think we will get to this, but so we're learning that so much more of a parent perspective needs to be part of our collaboratives and the protocols that we roll out. I actually have kind of the flip side of the question where,
There are things we do know about this tiny group of babies, but there's still a lot of things we don't know about this tiny group of babies. And I wonder how we can better explain that to parents. You know, what's important for a parent to know when there isn't a right choice or something that's totally defined by the evidence? How do you think we should be communicating that to families and engaging them in some of those decisions?
Kourtney vier (23:50.424)
Yeah, one of the first experiences we had with the neonatologist was when I was in antepartum and the doctor came in and told my husband and I like, you know, hey, you're here. This is the situation. It's likely that you're going to deliver in the next week or so. Here's the outcome for the baby born at this gestation. Here's what we can do. And so right off the bat, we were told statistics on what survival would be. But then past that, it was like, OK, I'm going to hold on to.
The hospital we were at was like I think I remember him saying like 65 % at three weeks or at 23 weeks Which I could be wrong on that. So don't quote me on the stats, but I remember thinking okay I'm going to hold on to 65 % and then when you know He was delivered and then he had you know, necrotized inner colitis and then had surgeries and had other complications and got sick It was like here's what we've tried to do in the past. I remember a doctor telling my husband I
there's more things that we can take, pull out of the bag and try, and we're going to try everything. And I think in the moment, I don't know if you can comprehend as a parent, like, we've done this on so many babies and this is the chance of it going well. I don't even know if that matters. I think it was more so just the hope of like, we're going to try something else.
There are more things that we can do. And so the hope of like the care of being for the baby, less of like, we have a ton of research based evidence to provide the support to know that if you change the vent settings to this, he's going to do well, you know? So I think the understanding of like, yes, all the evidence -based things will help you guys to make decisions and maybe to some parents would give some comfort, but at the same time, all you want to hear is we're trying something.
And I think that provides comfort. And even if like that didn't work, we're going to try something else is really comforting to my husband and I during the, or this season during the NICU. So.
Daphna Barbeau (25:56.354)
Thank you. That was very helpful. I hope people definitely wrote that one down. I think that's super helpful. And I think especially for this special population, I was really kind of moved, Matt, by your paper in Clinics and Perinatology about prognosis as an intervention. And I think that's held especially true for this population where...
We may have had some self -fulfilling prophecies about what was happening with those babies, and now we're taking a different approach. And hopefully you can speak a little bit to that.
Matt (26:34.08)
Isn't it interesting? This is something we do all the time as neonatologists. One might even say it's a really substantial part of our job. It's one of the most important, which is not just the formalities of, say, antenatal counseling and the relatively narrow range in which we're making decisions about whether or not to resuscitate. That gets written about a lot. But also, when you meet a mom at
28 or 31 weeks and you come down and talk with her or when the baby's up in the NICU and you meet with the family to talk about what's next and you know what the care plan is today or You know what to expect when can you go home and how are we going to make those decisions? There is really a growing group of people I really admire who are studying some of this now and who certainly know a lot about
more about it than me, but I think it's good for us as a field to recognize that this is actually an intervention just as much as giving dexamethasone as an intervention. That one's really easy to measure. And I think perhaps one reason we don't talk about this as an intervention is it's less so and it's less fancy and less technological. But how do we talk to families? How do we engage them?
What are our manners? You know, etiquette. There's a wonderful paper out by the Post Group in JAMA Pediatrics a few years ago about not the ethics, but the etiquette, the little ethics. And, you know, just very simple things like introducing people and calling them by name and sitting down, listening. These are all interventions that we have in our bag, to use Courtney's phrase there.
that I think deserve study and thought and attention. And then, you know, one other thing that's in that piece is how do you measure what's effective? I think something that we focus a lot on is the decision that families make. But we also have as an effect of this perhaps putting families at ease, reducing anxiety, bringing a great mentor uses the phrase,
Matt (29:03.072)
Less pain, more joy. Can we accomplish that? That the NICU is a good place for families?
Daphna Barbeau (29:05.602)
love that.
Ben Courchia MD (29:11.404)
tall task. Yeah. And it's but it's a great a great thing to live by. I wanted to then transition to the collaborative then and talk a little bit about what is what is the mission and what is the purpose of the collaborative. I think it's always whenever we have the word collaborative, we all understand there's an exchange of ideas. But.
when you're putting this together, what is your ultimate goal for this collaborative and what prompted you to say, all right, we need to organize ourselves as a team internationally to work on this.
Matt (29:56.864)
I can start, but then I'd like to hand it over to one of my colleagues here. I can tell you that this started fairly small as just like a curiosity back around 2019, end of 2018, beginning of 2019. This was an initiative just amongst a group of a few centers that had, I guess you could call them surprisingly, high rates of survival.
and lower rates of morbidity than were reported elsewhere in the literature and sent a cold email. They weren't researchers or clinicians that I knew but was very curious because you might hear from one institution, hey, we do X, Y, and Z, and these things seem so far out of our usual. Really, you do what? And to hear from other sites and start to begin to compare and contrast,
became just like a curiosity. I'm a PhD epidemiologist and researcher in addition to being a clinician and I study variation and this was relevant to my clinical practice and just kind of something I thought about. So I wrote the groups. I was at Iowa at the time and wrote the groups in Uppsala, Sweden at the University of Uppsala, University of Cologne and then the head of the Japanese Neonatal Research Network, Satoshi Katsuda.
Daphna Barbeau (30:57.794)
Mm -hmm.
Matt (31:26.112)
And we started with simple surveys. What do you do? What's your starting fluid? What do you put in the UAC? This sort of stuff. What are your starting vent settings? Sort of stuff I guess you'd ask if you were starting to write a tiny baby protocol, but it was really just, yeah, well, this is what the collaborative does, right? This is exactly what the collaborative does. So it's interesting. It became, I mean, it was like an email chain for a while.
Ben Courchia MD (31:43.532)
How do I get access to these results, please?
Daphna Barbeau (31:44.994)
That's right. When are these coming out? When are these...
Leeann Pavlek (31:47.619)
Thank you.
Ben Courchia MD (31:48.748)
I want to see that data, please, yesterday.
Leeann Pavlek (31:50.755)
I'm going to go ahead and close the video.
Daphna Barbeau (31:54.146)
Mm -hmm.
Matt (31:55.776)
Hey, have you guys seen this? There was a long discussion about meconium inspiration of prematurity or the Japanese neonatal network actually calls it MRI, meconium -related Ilias. It's in their data set like neck and sip. So it's a third three -letter bowel -oriented morbidity. And so we started conversations around things like this. What's neat, we just met at PAS for the second time.
Ben Courchia MD (31:57.292)
Mm -hmm.
Matt (32:24.608)
because of the pandemic. So after the first time, we had these few groups, very collegial, very small, very casual. And in 2022, we decided there were a bunch of other places that had been writing us trying to ask exactly what you just asked, Ben, like, what are your protocols? And instead of saying, well, here's the Iowa protocol or here's the Cologne protocol, it was like, let's give you all of them. Why don't you see for yourself what's in common, what's different?
And let's start to piece apart and see what we can learn by comparison. So we had a meeting at PAS this year with about 200 people attending. So our little group of about a dozen has grown. And we have now nearly 30 centers that have joined the collaborative up from fewer than half a dozen. But I'd like to turn it over to Leanne. So that's kind of how I got involved and I started it. But Leanne, you're
You're from a place that came and joined us. And you have one of these tiny baby programs that wasn't originally part of that, hey, you guys have extraordinary outcomes. What are you doing? So why did you get involved, Leanne?
Leeann Pavlek (33:37.411)
Yeah, that is a good question. So I think that these patients have always been my interest. And here at Nationwide, we've really been focused on, we have a great BPD program as well, so the entire spectrum of caring for these tiny patients. And we've really been focused recently on how do we improve our care for the tiniest of these patients with our new 22 and 23 week guidelines and just overall trying to further ramp up our very established program, but you can always make improvements as time goes on. So I think that we got involved for that exact reason.
to have a way to collaborate, contribute to research, and just work with these other centers that have been taking care of these tiny patients for longer and have the best outcomes that we know of. And really, how can we learn from each other to improve what we're doing here?
Ben Courchia MD (34:21.036)
Interestingly enough, I wanted to ask Courtney this question because when you go on the Tiny Baby Collaborative website, you look at the team and the names, it is extremely intimidating as a neonatologist. And so Courtney, when you're asked to join this group, I just wanted to let you know that for us, any neonatologist, I would be terrified just to be amongst these greats. But what is your reaction in terms of how...
Why are they calling up on me? And what can be my contribution? How do you wrestle with these emotions? And at what point do you say, all right, here's what I can contribute and here's what my experience can bring to the community?
Kourtney vier (35:00.856)
You probably know this from experience with just working with parents and families that after you have an experience, we were in the NICU for 182 days. So when you have an experience like that and you watch your child almost die several times, you have this emotional connection to the work of the NICU and to neonatologists and to want the desire to want to further care for babies.
And so I think every parent sort of has that kind of fire inside of them that I just watched my child go through something extraordinarily beautiful, but also terrible. And how can I help and contribute? And so, so often I know parents want to be a part of something. And so when we left the NICU, I had no idea what that would be for me, but I knew I was passionate about it. It was what I lived and breathed for six months when I was in Iowa City. And so...
Dr. Rysavy was cared for Zeke during his time in some of his worst days. And so he called me and said, hey, this is something that we're doing. We'd love to have a parent perspective. Would you be interested in joining? And I was like, yes, whatever I can do. So I'm not entirely sure exactly how much I contribute. The doctors are very complimentary that whenever I give my opinion, they're thankful for it. But.
I just want to do whatever I can to help serve the research, serve doctors, make a better experience for parents specifically, and so to shed light. So I, maybe I should be more intimidated by the group, but I'm not a neonatologist. And so, yeah, I was with doctors for 182 days. And so it just feels like I'm with another group talking about things that I feel passionate about helping parents with. And so.
Ben Courchia MD (36:40.908)
Ha.
Kourtney vier (36:54.072)
That's how I'm contributing and whatever they asked me to do, I'm happy to do it because it obviously impacted my family in such a great way.
Ben Courchia MD (37:01.452)
That's the right approach. And I think your answer gives us a great segue into our next question, where obviously I think it means that the group is, despite being staffed with so many great physicians, scientists, neonatologists, it is a very friendly bunch. And that's something we've seen on the podcast is that despite the aura surrounding some of these giants, there are always very nice people willing to collaborate and always surprisingly,
willing to learn. We think that the Edward Bells of the world have learned everything and yet they're always willing to learn more. And so I think that's what makes it so fun. I think what can you guys tell us, Matt, specifically about like people who say, I'm interested in joining, but, man, we don't have that many babies in my unit. Like we don't care for so many 22, 23 weekers. So maybe we're not the right partners for them. So we're not going to reach out. Can you?
Can you talk to these centers and tell them what their options are like or these neonatologists and researchers?
Matt (38:06.976)
Yeah, I can offer that we are open to anybody who's interested in talking to us and we'd love to chat with you and anything we can do to help improve care for moms and families and our babies is the goal. It is a really interesting question though, Ben, that there's like over 800 NICUs in the US that are level three and four and you know something that we talk about as a collaborative a bit is, is it really the right thing?
for every single one of those 800 NICUs to have a small baby program. You know, if I had a, it's a very resource intensive and it's really extraordinarily difficult work. You know, the margin of error can be much smaller. The tinier the baby, the tinier the margin of error. And so something we talk about is, you know, like if I had a family member,
Ben Courchia MD (38:42.412)
Mm -hmm.
Matt (39:02.752)
who needed a kidney transplant, also team -based care, really risky, really resource intensive. I probably wouldn't send them to a surgeon who only does one or two a year. That wouldn't be my choice if I had control over that. And sometimes babies just come, and we need to work with everybody to make sure that they can provide the best care. But we do have material. You can go to our website, tinybabycollaborative.org. And...
Ben Courchia MD (39:16.876)
Right.
Matt (39:31.776)
You can join our mailing list. You can send us a note on the contact page. And Jordan Knox, who's our program coordinator, can send you the information. And it asks things like, do you have a follow -up program? If you don't provide follow -up for babies born this early, then maybe you're not the place that we want to encourage setting up a tiny baby program. That seems like a pretty minimum requirement. And you can give us more information about your program.
Ben Courchia MD (39:44.044)
Mm.
Matt (39:57.856)
And we'd be happy to help support you if it's to set that up or if it's to set up, you know, getting moms and babies to the right places.
Ben Courchia MD (40:07.116)
Yeah, going back to that idea that we mentioned earlier on that it is such a gray area in terms of the available evidence and that how this feedback loop of being able to follow your babies and follow your outcomes to dictate whether what you're doing is the right thing or not really becomes almost the essential aspect, the fulcrum of this endeavor. So yeah, that makes sense.
Leeann Pavlek (40:30.787)
Yeah, and I think that there are ways to learn from the collaborative, even if maybe your site joining is not the right thing at this point in time. Myself and Noelle Young from Duke have put together this series of webinars through the collaborative. We've had six so far. We're going to bring together experts from around the world who are taking care of these patients for many years to talk about different topics focused on these patients. And there's a really nice kind of interactive part where the audience can write in questions beforehand to get a certain question answered by these experts. So I think even if...
Joining the collaborative in that approach isn't the right thing to do. There certainly are ways to just still be involved in collaborate and learn from one another.
Daphna Barbeau (41:07.042)
And I wanted to highlight actually how high yield I think these webinars really are. I mean, the titles are Antenatal Counseling, Meconium Obstruction of Prematurity, kind of the thought it's a different bowel condition, Alternative Approaches to Early Respiratory Management, the Hemodynamic Assessment, Fluid Management, and then Improving Care and Outcomes at 22 to 23 weeks gestation. So I think.
Ben Courchia MD (41:07.756)
Mm -hmm.
Daphna Barbeau (41:32.322)
If you were thinking about this group of babies and you said, what would be my top six things I needed to know? You guys have already covered that. And I understand that there will be more webinars. Can you tell us a little bit more about, I mean, obviously education is a big, one of the big arms of the work that you guys are doing. Tell us what some of the other pillars are.
Matt (41:58.368)
So education, it's really all about learning. It's about learning and supporting research. If we advocate for anything, it's just figuring out how to do this best. And I think the two primary ways that we currently do this are by... We run a study right now called the MINI study, the Multisite Inventory of Neonatal Perinatal Intervention. We need to make it squeeze in and call it MINI.
Daphna Barbeau (42:27.458)
Yeah, I love that mnemonic.
Matt (42:27.936)
And that has been great. We now have in our data set over 800 babies admitted with outcomes in the NICU and their treatment course, somewhat over 1 ,000 deliveries from now four going on five countries. And it's really valuable to understand how different people practice. So, you know, supporting research.
In this way, observationally has been valuable. We'll have a paper coming out here, hopefully later this year, that describes some of the results there. But we collect things on like what size ET tube did you use to intubate? And, you know, can look at outcomes related to that, which nobody has that size data set to do that. Or the between country variation with that sort of granular data.
We have, I mentioned, a trial coming up here looking at use of humidity in this population that's rolling out at a couple of our centers. And then the education component is a huge part. And it's not education like, hey, here's what we've discovered. Here's our center's protocol, which hasn't been adequately validated. It works here. But I think Leigh Ann and Noelle have done a really wonderful job of providing compare and contrast.
Ben Courchia MD (43:29.772)
Mm -hmm.
Matt (43:54.496)
of engaging discussion so people can understand. As another old mentor of mine used to say, there's multiple paths up to the top of the same mountain. But also in, you know, if you can both get there, what are the differences or what are the same principles that, you know, we can find across all our centers? So, you know, one of those things that came out really loud and clear in one of the webinars, the fluid management one, was that the physiologic principle, what makes this
group of babies different has to do with skin and trans epidermal water loss, evaporative losses, and you just need to remember that. And that's different than at 27 weeks. And however you manage it, you can get to the top of that same mountain a few different ways, if you put the fluid in or if you increase your humidity, for example. But that is a physiologic principle that I think you learn. So those are our two big initiatives right now, research and education, with the collaborative discussion.
Daphna Barbeau (44:39.682)
Mm -hmm.
Daphna Barbeau (44:51.714)
Yeah, I mean, I think that's such, I want to highlight that. I think that's such an important point. I love how exactly like you said, it's this ongoing collaborative discussion that it sounds like is leading to more research questions and potentially refining like what is the path? Do you think it's an end goal of the collaborative to outline some standardized protocols once we have a little bit more data?
Matt (45:20.672)
Yes, the end goal is to better understand what we're doing. And the protocol is really interesting. I'll tell you one thing that I have learned in the collaborative over the past half decade. It was the head of the unit in Cologne who said, Matt, you can't just take the orchid and go plant it in an Iowa cornfield. So you might see this one practice. And I think this happens in this area all the time. isn't that interesting?
Ben Courchia MD (45:22.124)
Yeah.
Daphna Barbeau (45:45.858)
Mm -hmm.
Matt (45:50.176)
first intention high frequency, starting fluids of 200 ml per kilo per day. You pick whatever thing you've heard from somebody's protocol around the world and you pick it in isolation. And if you don't have the right context to use the orchid, if you didn't have the right climate and soil and all of that, it's just not going to work. In fact, it may be hazardous. And so I'm not sure that there's like a master protocol.
Daphna Barbeau (45:59.746)
Yeah, one thing in isolation, kind of. Yeah.
Matt (46:19.168)
to answer your question, but to understand the basic physiology and the principles on which we should make decisions to understand some of those ecosystems and how we can make informed decisions about it so it works at your center. That's the goal.
Ben Courchia MD (46:33.356)
wanted to... Sorry, Daphna, you're muted.
Daphna Barbeau (46:37.954)
It just looked like maybe Leanne had something to add.
Leeann Pavlek (46:40.995)
that's okay. I was just going to totally agree. And I think that's where the education piece really comes in. I think I'm asked all the time, what do they do at Iowa for fluids? And I have to explain that exact sentiment that the entire picture is important. What are they doing for humidity, for the PDA, for the kidneys? So I think like this big education piece for why are these patients different than older preemies and why do they have different needs?
Ben Courchia MD (47:05.132)
Good. Lianne, I wanted to go back to you then. And, and as we get close to the end of this episode, I wanted to ask you specifically, since you've joined the Tiny Baby Collaborative, like how has this impacted your career as a neonatologist? You know, we have these opportunities in our careers as we've talked to so many people in the field that have the potential to be defining of saying, well, I made this, I've had this encounter with this person and, and, and the collaboration that ensued really changed my, my...
profile, my career, my trajectory. Can you tell us a little bit what has the Tiny Baby Collaborative meant to you as a neonatologist, as a scientist, as a collaborator since you and your team at Nationwide have?
Leeann Pavlek (47:47.235)
Yeah, I think it's been a huge opportunity. This is my fourth or fifth year as faculty. So I'm so honored to be able to have this collaboration and easy access over email or over monthly virtual meetings to these giants in the field. So I think that both in terms of improving our care here and helping our patients and improving what we're doing, but also for me personally, the opportunity just to collaborate this early in my career with these experts in the care of these tiny patients has been amazing.
Ben Courchia MD (48:15.148)
And Courtney, for you, how has this experience been? I mean, I think, as you mentioned earlier, there's always this drive to do, like you said, whatever you can to help potentially anybody else. But as we've discussed on the podcast before, for many parents, sometimes you realize that this process may just opening old wounds and may not be as pleasant as you anticipated. So I'm just wondering, since you've joined, how has this experience been? Do you find it rewarding and what is your message for other parents who might be interested?
in following in your footsteps.
Kourtney vier (48:46.456)
Yeah, I think the, well, one thing I didn't know going into the whole experience was maybe how rare of an experience this was for people. And so that not everyone in every place would be offered care or have the ability for the hospital to care for babies at this age. And so I'm always really excited when I hear this hospital has asked if they can join the collaborative. They'd like to add more information to the mini study. And,
and report information. And I just am excited about the continued progress of care for babies born at this gestation. And I'm happy to share my story and my son's story with many others, because I think when you get into the, maybe you have a bad week or, you know, every time you care for a 22 or 23 week or it just seems like it doesn't go well. But I'm happy to be a parent to say like, it does go well, you know, maybe not all the time.
but there are really incredible stories and my son is living proof of that. And so even though I had some of the worst days of my life in that NICU, we've had so many more better days. And so I'm excited when I get to hear about more people joining in, learning the amount of people jumping onto the webinars, just the interest of it and giving and bringing hope to parents that.
Ben Courchia MD (49:49.388)
Mm.
Kourtney vier (50:10.584)
This wasn't just our experience. We're not the only people who get to bring home a child and raise them for their life. But there's thousands of children all over the world who will have an experience just like us. And so it actually hasn't brought up too many tough wounds. It's more of an encouragement. And so I'm just super thankful to be a part of it.
Ben Courchia MD (50:28.108)
That's awesome. That's awesome. Matt, as we wrap up the episode, I'm just wanted to give you guys the opportunity to maybe share with the audience who are listening today and say, hey, like this is a good team that we would like to engage with and participate in the work that you guys are doing. Can you tell us a little bit more about how to find out more about the Tiny Baby Collaborative and what is the best way to get a hold of you personally, you know, at home at odd hours of the day?
Matt (50:55.296)
I'm not sure what I can do for you, but the Collaborative and our wonderful group, and you can put my email in the exchange, Ben, that's just fine, but tinybabycollaborative.org is a really great resource and you can find all the excellent webinars that Leanne and Noel have organized. There's a new series coming up here this next year. They are put on about every two months. You can join our mailing list.
Daphna Barbeau (50:56.194)
All right.
Leeann Pavlek (50:56.515)
I'm sorry.
Matt (51:23.616)
there and get updates for each webinar that comes out. And join as you wish. You can watch the old ones there. And if you're interested in contributing to the collaborative, and we're happy to bring in anybody who really is committed to doing the research, collecting the data, trying to improve care in this area, I think it's only by working together that we're going to do as well as we can. There's also a sign up there. You can send us a note through the contact link.
Send us our information and Jordan Knox, our program coordinator, will get in touch with you. So happy to do that. And then just like Leanne said, there's a lot of questions and stuff on the edges. You can use the contact form. You can email me. I can put you in contact with others from the collaborative. It's such an open and welcoming group. I think everybody just wants to do what's best for our families.
Ben Courchia MD (52:17.292)
Absolutely. So we'll put the link to the Tiny Baby Collaborative website. And as you said, there's a contact form. I think while we were recording, I didn't realize that there was a way to get these updates for the webinars, which are quite good. You guys have a dedicated YouTube page. So it's very, sometimes it can be clunky to watch these webinars, but just putting them on YouTube makes it so much easier because you have YouTube on your phone, you have YouTube on your iPad, you're on your computer. So I just sent you guys a little contact as well to add me to the mailing list so that I can...
be notified when these new YouTube videos are coming out. And we'll put all that information in there and some of the publications that we've discussed. This was a fantastic conversation. Congratulations on all the work you are all doing and taking a project that is not the simplest out of all the things in neonatology. This is definitely a tall task. So congratulations and thank you again for being so open and sharing all your experiences with us today.
Matt (53:13.6)
Thanks to both of you. It's really a service to our community what you do, Deft and Ben. I appreciate you having us on.
Daphna Barbeau (53:20.898)
Pleasure.
Ben Courchia MD (53:21.292)
Thank you, Matt.
Leeann Pavlek (53:22.787)
Yes, thank you so much for having us.
Ben Courchia MD (53:24.46)
Thank you, Lianne. Courtney, thank you for making the time.
Kourtney vier (53:26.264)
Yeah. thank you.