#329 - Neopedia: The Wikipedia of Neonatology for Families

Hello friends 👋

In this episode of The Incubator Podcast, Ben and Daphna are joined by Fabiana Bacchini, Dr. Tiffany Gladdis, and Bianka Gallina to discuss the development and launch of Neopedia, a free, multilingual online platform designed to support families navigating the NICU and beyond.

The team explains how Neopedia was created by an international group of parent advocates and medical experts to bridge the information gap many families face during and after neonatal hospitalization. They walk through the site’s structure—including tabs on pregnancy, NICU life, going home, and long-term outcomes—and explain how content was written to be accurate, accessible, and supportive without being overwhelming.

The conversation also explores how Neopedia addresses mental health, the importance of family-centered education, and how the platform is intended for both parents and clinicians. The episode highlights why this resource fills a critical need: empowering parents to ask better questions, understand what’s happening, and advocate for their children across different stages and settings.

Visit neopedia.org to explore the site. Available in English, French, German, Spanish, and Italian.

Link to episode on youtube: https://youtu.be/EWxjlUiAjLU

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Short Bios:

Fabiana Bacchini: Fabiana is the Executive Director of the Canadian Premature Babies Foundation and the author of "From Surviving to Thriving, a Mother's Journey Through Infertility, Loss and Miracles." As a parent of a preterm baby, she participated in the study of Family Integrated Care (FiCare), which inspired her to become a passionate advocate for premature babies and their families. Fabiana serves as an advisor on numerous committees, including the National Steering Committee for FiCare, the European Foundation for the Care of the Newborn Infant (EFCNI), and the Canadian Preterm Birth Network (CPTBN), and is dedicated to ensuring that the perspectives of parents are integrated into research and care practices for preterm infants.

Dr. Tiffany Gladdis: Tiffany Gladdis, Psy.D., is an Associate Professor at the University of Missouri-Kansas City and a Perinatal/Neonatal Psychologist at Children’s Mercy Hospital in Kansas City. In addition to her role as Associate Professor, Gladdis is the Medical Director for the Office of Equity and Diversity at Children’s Mercy and a board member of the Missouri Association for Infant & Early Childhood Mental Health. She also serves as a board member of Hand to Hold, a national nonprofit organization that provides emotional support, education, and resources to families during their NICU experience.

Bianka Gallina: Bianka Gallina is a geologist and science communicator with a background in Earth sciences and a growing interest in health equity and public education. She earned her undergraduate degree from the University of Michigan, where she was actively involved in the Geobiology Research in Terrestrial Systems (GRiTS) lab, contributing to geological mapping projects in Death Valley and co-authoring research on the region’s stratigraphy.

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

Ben Courchia, MD (00:00.974)

Hello everybody, welcome back to the Incubator Podcast. We are back today for a special recording with a team. Daphne is in the studio. Daphne, good morning, how are you?

Daphna Yasova Barbeau, MD (00:11.167)

Good morning. Happy to be here.

Ben Courchia, MD (00:13.55)

We are joined today by three guests. I'm going to go in order of how you guys appear on my screen. Our first guest is Fabiana Bacchini. Fabiana, welcome back to the podcast.

Fabiana Bacchini (00:27.984)

Thank you. Thank you for having me.

Ben Courchia, MD (00:29.902)

You are a preemie parent and today we're talking about a brand new tool that's made available by the GFCNI called Neopedia and you are part of the core expert group that created this amazing tool and you're a veteran of the podcast. You were here with us on episode 258. This is still one of my favorite episode title called Not Visitors Redefining Parenthood in the NICU.

So thank you for being on the podcast. You are joined today by Dr. Tiffany Gladys. Tiffany, welcome to the show.

Tiffany Gladdis, PsyD (01:06.043)

Hello, I'm happy to be here.

Ben Courchia, MD (01:08.406)

You are a perinatal neonatal psychologist at Children's Mercy Hospital, and you were a content expert for mental health on Neopedia. Welcome to the podcast. And our last guest is Bianca Galina, who is a co-leader of the Neopedia project and your communications manager for GFCNI. Bianca, welcome to the podcast.

Tiffany Gladdis, PsyD (01:16.359)

Yeah.

Bianka Gallina GFCNI (01:29.248)

Thank you so much for having me.

Ben Courchia, MD (01:31.374)

So we feel very privileged at the incubator because we were given an early access to Neopedia, a brand new tool that is available online for parents and professionals. Bianca, I'm going to start with you for the people who have never heard of Neopedia. Can you tell us a little bit what is Neopedia?

Bianka Gallina GFCNI (01:53.879)

Of course. So Neopedia, as the name suggests, is like an encyclopedia for neonatal care. It's an online platform that's free and easy to access, designed especially for families of preterm or sick babies. So just simply type in the URL neopedia.org in your browser and you'll be taken to the website. Exactly.

Ben Courchia, MD (02:21.198)

Yeah, this is a great summary. It kind of feels like a Wikipedia for neonatology, am I right?

Daphna Yasova Barbeau, MD (02:30.725)

huh.

Bianka Gallina GFCNI (02:32.564)

I'm pretty sure that's where the name comes from. Yes, our core expert groups, so the parent organizations that we worked with helped us pick this name and we all really like it. I think it's very suitable to what the platform is and I think it's a catchy name for parents and users to also remember it.

Daphna Yasova Barbeau, MD (02:34.325)

Hehehehe

Ben Courchia, MD (02:34.391)

You

Ben Courchia, MD (02:52.622)

I'm going to give people an inside look at Neopedia. Basically, the website is, first of all, beautifully designed. I don't know if there were more people that could have come on the podcast today to talk about how all the drawing, all the colors, it is a beautiful website. I'm going to start with that. And then the structure of the website is quite elegant. Basically, you have five tabs that comprise an overview of neonatal care. You have a tab on pregnancy and birth. You have a tab on NICU experience.

Daphna Yasova Barbeau, MD (02:58.463)

Absolutely.

Daphna Yasova Barbeau, MD (03:06.143)

Mm-hmm.

Ben Courchia, MD (03:22.24)

another one on going home and growing up, and another one on parent support. I think that each page then has a sub menu with different topics that are covered. I think that from my experience, the pages are super easy to navigate. And what's great is that there is content on every single page. And at the bottom, we have the name and the information on the expert that actually reviewed that data.

to make sure that it was both accurate and comprehensive. The website, I believe right now is available in English, but you guys obviously are now the global collaborative for neonatal care. So you plan to translate that into other languages such as French, Spanish, Italian and German. guess, Bianca, going back to you, maybe my second question to you is what was the need

Tiffany Gladdis, PsyD (04:06.919)

you

Ben Courchia, MD (04:18.798)

that you guys saw in the community that warranted the creation of this specific tool.

Bianka Gallina GFCNI (04:26.336)

Right, so what inspired the creation of Neopedia was this information gap that we know exists in many countries and in many languages. When a baby is born preterm or sick, there is often lot of fear and uncertainty, which is made even harder for the families by not being able to find clear or trustworthy information.

and especially in a language that they understand in many cases. And this need for information doesn't just end when the baby leaves the NICU, it continues well into early childhood and even beyond. So that was what inspired the idea behind Neopedia. We really wanted to create something that families could rely on, a comprehensive but easy to understand resource.

that supports families throughout the entire neonatal journey. Starting out, as you mentioned, from high-risk pregnancies to NICU stays, also discharge growing up. Each of these critical steps are followed. And actually right now at launch, we already have the content available in these five languages that you mentioned. So English, French, German, Italian and Spanish are available and we are planning.

for more languages to come in the future.

Daphna Yasova Barbeau, MD (05:53.865)

What really struck me as I was looking through all of the headings is at first it feels very simple as a neonatologist, right? But I have recognized after speaking with so many parents that, you know, we forget that most families don't even know what a NICU is when they have a NICU admission. And they certainly didn't expect that they would be admitted to the NICU. And so,

We've had this experience with, you know, even very well-educated families, even physician families who they come in and they just are at a loss. They have no idea what's going on. And I think this, what you guys have done here so cleverly is really break down the different components of the admission. You know, what is the NICU? Who are you going to see in the NICU? What are the things to worry about in the NICU? What are the questions to ask? What does going home look like? How can I participate in the NICU?

And then on the back end, we are recognizing, think finally as neonatal healthcare professionals, how many questions parents have about the future. And we're not very good at addressing those. And I think that brings parents a lot of frustration. But I think what you guys have done is said, you know, these are the things you would look for. These are the things that will require follow-up. And just kind of woven in this

through videos and accounts even of adults born preterm about how preemies are resilient and they can overcome many challenges. And I think that's so important for families to hear and see early on. And we fail to do that. We tell them a lot about the doom and gloom. We want them to know what's happening. But I think there's so much kind of hope.

in the website, and I think that's what parents are asking for. So after all that of my description of the website, maybe Fabiana and Tiffany, you can speak a little bit to what did those expert panels look like? Like, how many families did you even got? How many experts? How did you make a decision about what to keep and what not to keep?

Daphna Yasova Barbeau, MD (08:16.821)

I guess what was kind of the vision for the message for families?

Fabiana Bacchini (08:25.722)

I can start. It was such a great experience being part of the expert core group because we, so we were giving the medical information and then poor Bianca sometimes we destroyed full chapters. This is not super friendly. This is not a parent focus. This is still sound very medical. And it was a group of parents who lead organizations from many countries.

Tiffany Gladdis, PsyD (08:42.663)

you

Fabiana Bacchini (08:54.298)

with very different experiences from Turkey to US, here in Canada, a lot of European families. And it was so great to see different perspectives and how GFC and I took a lot of what we said into consideration and really adjust the content to parents. And I feel now the Neopedia is like your peer support website.

because it's, as you said, it's so broken down into pieces and you don't have to go into all the pieces at once. It goes low piece by piece as you need, but it feels like there is a parent there with you every step of the way. And I think that is what is unique about Neopedia versus other very comprehensive websites that are available. This one has that feel, I'm here with you. I've gone through this path. So I know what you feel. I know what you're looking for.

So it is a peer group and it's all evidence-based. So I think it's a great combination of our voice as parents with the evidence. we, and you work together in a collaboration with the medical experts, which was such a great experience for all of us, parent partners in this project.

Tiffany Gladdis, PsyD (10:10.801)

Yeah, that's great. There was a similar but different process for the content experts and each individual kind of found their own pathway towards being a part of the panel. So I'll just speak to mine specifically. One of the executive directors of NICU Parent Network, which is one of the NICU parent groups in the US referred me and then we had a big call where all of the experts were really debriefed about the project and

the purpose and the objective for parents. And from there, we were able to kind of opt in and say, is something that we wanted to participate in. And I know for myself, listening and hearing what the purpose of this website would be, I was like, absolutely, I want to be a part of it because it's so necessary and so needed for our families in the NICU. And there were about 20 plus content experts after that that dwindled down who participated.

and we were provided content and then asked to be co-authors of that information. And so there were parts that we would eliminate, add, edit, and so forth. And I think the way that I decided what would be important to include was really from my experience of working with families in the NICU. And then I also have the privilege of working with families after they discharge in our neonatal follow-up clinic. And Daphna, what you were saying is so true. Like it does not stop.

when families leave the NICU and in a lot of ways the stress and anxiety and depression and the PTSD really kicks up there because they no longer have the support of the NICU team and things can be even more uncertain or families go home with equipment and it really does just change the way that they expected their life to be. So I also love that Neopedia doesn't just speak to the NICU experience but the life

Daphna Yasova Barbeau, MD (11:50.613)

Mmm.

Tiffany Gladdis, PsyD (12:06.38)

because it doesn't stop for families.

Daphna Yasova Barbeau, MD (12:08.925)

Yeah, I love that. And I wanted to highlight and get more of your thoughts, Tiffany. It's almost like every page is giving, there's medical, there are some pages specifically for mental health, right? Like resources for families, things like that. But every page giving medical information is also kind of paired with support statements for families. Like,

Ben Courchia, MD (12:12.942)

Thank

Daphna Yasova Barbeau, MD (12:36.755)

ways to care for yourself while you're in the NICU, how to ask for help while you're in the NICU, how can you bond with your baby in the NICU. And I think that's a place where we really fail parents because we feel like they just need more information, they just need more information, and sometimes we're missing their cues to give them emotional support and we just can't get.

more information and more information. so given your experience in NICUs as a support mental health professional in the NICU, what are ways, not all units have people like you, right? And I think this website, the Neopedia does a wonderful job of that. I hope that people who are listening don't think that it's just for families. hope people will take a look at it. Professionals will take a look at it and say,

Man, that's something I can incorporate into my discussion with families on each page about these specific topics. Anything in particular you think that people should take away from this kind of thread of mental health messaging throughout the website.

Tiffany Gladdis, PsyD (13:49.297)

Yeah, I think there's lots of pieces that people can take away. I often say that, you know, we as NICU, as the NICU medical team, we get training on mental health and, you know, the experience of parents that's becoming more more popular. And like you said, not a lot of NICUs have psychologists. In fact, most don't.

And parents don't get any training on how to show up in the NICU or how to bond with their baby. Many are not prepared for the experience. And so one of the things that I think is great about Neopedia for those NICUs that do and those that don't have a mental health professional, they can go here and number one, receive access to resources. So there is a page that talks about local and national.

resources that they can utilize. And in the US, there are several that they can utilize virtually for free, which is amazing. But then also they can learn that their experience is normal. Oftentimes when I'm talking with parents, they're like, I'm feeling X, Y, and Z. Am I crazy? And I get to say, no, you are not. You are experiencing a normal reaction to a very traumatic situation.

and it's okay to not show up your best, it's okay to feel overwhelmed, it's okay to be stressed. And that's what a lot of the content talks about. And I think oftentimes when I'm able to communicate to parents and normalize their feelings and affirm the stress that they're expressing to me, I can almost see a weight lifted off their shoulder like, And then I can provide some reassurance that this is really hard right now, but it won't always feel like this.

And these are some of the things that you can do to take care of yourself while you're in this situation. And also providing some education about in order for you to take care of your baby, in order for your baby to best be OK, it's actually important for you to take care of yourself. You're not going to be able to do the parenting job well unless you do the self-care job well. So all of that is in there.

Daphna Yasova Barbeau, MD (15:59.573)

I love that. And I actually wanted to highlight one page where, Fabiana, you're the highlight video of the page, Coping with Worry. And I think that's such a beautiful page because, again, it seems so simple, but that's what parents are experiencing, this kind of worry. What were you thinking when you, you you're the video content for that page? What did you want to pass along?

Fabiana Bacchini (16:27.708)

I think, as you mentioned, the Neopetia is not only for parents, it's also for healthcare providers to understand how we feel and what we feel and validates how we feel. So when I was doing that video with GFC and I, was really thinking, okay, if I can send a message to the parents,

normalize their feelings, validate what they're feeling, but also for healthcare providers to understand what it is and talk to us in that way. Ask us how we are doing. Because that is one simple thing that people don't really ask how we are doing. Because you don't know what to do with the answer. I think that's what the problem is. Because, okay, what if I say I'm not well, I'm not doing well, so what are you going to do with that?

And I think just by asking and sitting there with us, it is great. It's a great opportunity just to show that, yes, I'm here with you. And I think Neopedia does that and help the parents, but also help the health care providers to come from that understanding that we also need support. And what I love about this whole Neopedia is it is because every page has that piece.

We are coming with you as a parent together with the evidence for the families.

Ben Courchia, MD (18:00.888)

Yeah, I think that you guys did a beautiful job when it comes to that. because it's kind of a fairly typical problem in unitology where each of these individual topics, domains, they feel very overwhelming. If you actually gather the evidence, you do a literature review or whatever we want to call this. It's kind of a mountain and you say, but which side am I going to start attacking the problem? And then the task to actually distill this information in

in something that is accessible, easy to read, and that carries the point across. I think that is probably the most difficult thing because especially when you're using a website where you could potentially just keep putting information and information, the editorial decision to actually make this concise gives, in my opinion, the value to the content. especially when we are talking about

some of the possible complications. So in the pregnancy and birth tab, you have a subcategory called possible complications in which basically the possible complications of a neonate are broken down by, I would say, organ system where we have the lung, the heart, the brain, the kidney, digestion, infections, temperature control, blood glucose, and so on. And I think that

they are very well constructed. I'm going to take the lung, for example, which is obviously an area that is very frequently affected when a baby is born preterm. And in there, you have basically six topics that are being approached. Apnea asphyxia, bronchopulmonary dysplasia or chronic lung disease, pneumothorax, pulmonary hypertension, and respiratory distress syndrome. I think this is phenomenal. Each topic is very well described. But I just want to find out from you guys

How hard was it to make this editorial decision about what to cover, what not to cover, and how do we always stay true to the mission of Neopia, which is we're going to center around the family.

Bianka Gallina GFCNI (20:06.098)

Right, so that was really one of the big challenges because we wanted to include as much information as possible to help parents understand what they or what their baby might be going through without overwhelming them with too much or too heavy information. this is why, for example, on the page you mentioned, we have included

these drop-down sections which gives the users the choice to div-diver in the topic, but only if they feel that it's relevant for them. So they can stay focused on what matters most to their situation and really choose what they want to read about. And I remember this was also one of

Fabiana's points in a video that we did with her where you're really focusing on what's going on at the moment, not overwhelming yourself with too much of what could happen. That's why we also have added these gentle disclaimers. You know, please only read the content that's relevant to you at the moment. And yeah, that was inspired by Fabiana's words.

Ben Courchia, MD (21:25.686)

I love that disclaimer. That disclaimer is at the top of the page and it says, like you said, please consider reading the information that is relevant to you and your little one, parentheses ones. By doing so, you can avoid overwhelming yourself with too much information in an already distressing time. It's absolutely beautiful. I was going to go back to a topic that was brought up, which is that this is a website that's really centered around parent and centered around the parent perspective. I'm going to highlight again this...

This can go unnoticed, but as we mentioned, obviously there are five tabs on this website. But what's amazing about it is that the NICU experience is in the middle. And what I really like about this, and I think that this is something that Tiffany brought up, is that it sort of reframes for families that the NICU experience is only a step along a much broader journey. And I think that sometimes it can feel like you're in the NICU and you don't know if this is going to be the last step for your family. But this website actually is a message of hope that...

No, there's going to be growth and there's going to be going home. So I think that's phenomenal. But I think that there's a tremendous value of the website for physicians and for trainees. I wish this was available when I was a fellow. Number one, because we don't often have the vocabulary to speak to families as physicians. learn the science, but...

it's, very difficult. We, we tend to think of, importance in terms of acuity and in terms of the seriousness of the, of the complication, but we tend to rarely be taught medicine in the form of what matters to family. So I think this is very important to allow us to reframe this, but for trainees, think that they are, are, a lot of opportunities to, learn a lot. I'm going to just mention a few that for me were very important. Number one, we know that as, as

physicians as providers were supposed to try to speak a language that families can understand. And if we use too many big words, sometimes it can be confusing. And I'm going to be honest, like sometimes I found that we use big words because I don't really know how to define this in another way. But the website does a beautiful job. Whenever a term comes up that is scientific or medical in nature, there's like a little question mark next to it. And then there's a bit of an explanation as to what it is. And I think that this is great for physicians to review about.

Ben Courchia, MD (23:39.084)

This is how I could describe this to family when I have to explain. The one that I really like is the one on blood pressure because sometimes families are like, I don't understand, what is the blood pressure? And you're like, my God, like how, you never really think about this, but how do I explain blood pressure in a few words so that families can understand the implications of that? I think that's really helpful. But I also think that for physicians, what's great about this is that

The website really frames the medical information in the context of family values and there's probably an opportunity there for us to review this and understand a little bit more of the parent perspective and tailor our care around that. I'm just wondering if when you guys designed the website and I'm going to maybe point this one to you Fabiana, did you have the clinicians in mind in terms of

not just accompanying the family, giving clinicians tools that they too can potentially use if they were reading these pages and these articles to better serve families.

Fabiana Bacchini (24:42.3)

I don't know if it was intentional or not, but I think so. I always feel like what is a turning point for a parent to wanting to know more? For me, was when the doctor sat down and said, okay, your son has a PGA and I didn't want to hear about it because I had just lost a twin from a heart condition. I didn't want to hear anything about PGA. But he said to me, you are the mom, have the right to know. He sat down with me and he drew a heart.

Ben Courchia, MD (24:45.343)

Hahaha!

Ben Courchia, MD (25:11.629)

Yeah.

Fabiana Bacchini (25:11.77)

And he explained to me how the heart works and what the PGA was doing. And it was my turning point of wanting to know more. And when I look at Neopedia, and I think it does exactly the same, because it breaks down for me, but also for you, how you can explain that for parents. If it was intentional, not when you were designing, I don't know. I certainly had that in mind because everything that I do here at the CPBF.

Ben Courchia, MD (25:16.782)

Yeah.

Fabiana Bacchini (25:41.314)

I always think, okay, all my infographics can also be used by the nurses and the doctors to explain to the families in the NICU because it's broken down, it's lay language, and it's so simple because everyone needs to understand and can understand. And I think having the glossary at Neopedia, it was so great, not only for us, but how you can explain to us what it is.

Because yes, it's all big words, all the one million acronyms that you need a dictionary on the side. There are a lot of people like me who have English as a second language in the NICU. So it's very important that the whole piece comes together as, OK, this is how you can teach parents what to do. And Neopedia does that so beautifully.

And I don't know, Bianca can say if it was purposefully done or not, but from my perspective, that's how I look at each chapter. How you could also sit down with me and explain to me, Denique, what each condition mean for my child.

Daphna Yasova Barbeau, MD (26:48.693)

That's great. I I love hearing that story, Fabiana. We've spoken to lots of parents who become a parent advocates. And we say like, why, why does some parents become parent advocates? And each time we've heard a story like the one you said, there was someone on the NICU team that empowered me that, I should know more. I deserved to know more. I could ask more questions.

and I think the website Neopedia does a really good job of signaling that to families, that perhaps, you can help, you can cope with this situation by learning more, by having the information and asking better questions. again, I don't know if that was intentional, but that's what comes across.

especially at a time where we're trying to empower parents to be present at bedside, but I'm not sure we're doing a great job at empowering parents on some of the education, on the medical information side, even though they'll have to carry that medical information for the rest of their children's lives. So what are some of those opportunities you think people can take from

Neopedia or how how do you hope that parents will translate what they read into kind of empowerment in the unit?

Fabiana Bacchini (28:24.602)

I certainly believe in education for families and how much we can grow from learning what is happening because the NICU days are very short in our child's lifetime. If you think about, okay, my son spent five months at NICU, but he's 13 now and the NICU carried on to the long-term outcome. And you need to advocate later on for the rest of this child's life.

We need to know what happened in NICU so we can share with the team in the community. So I think Neopedia invites parents to ask questions, right? And empowers us to ask the right questions with the right terminology so we can understand what it is from the get-go for the long-term. If family doesn't know, can I hold my baby skin to skin because my baby had an IV.

It happens, right? When we run peer groups, we hear all of this. I didn't hold my baby because my baby had an IV. It's like, that's not a reason why you shouldn't hold your baby. And I think Neopied explains that to the families, right? So you can ask the question, can I hold my baby or how can I hold my baby? Or is it okay to hold my baby today? So it gives you the chance to ask the questions to the medical team.

And I think that's what we need as parents because he has not all parents. We will have a healthcare provider coming to the bedside then to explain certain things. So you feel empowered, but if you can share Neuropedia, can we give this as an invitation to the family to participate in the care, making informed decisions with that tool, because it is evidence-based. So can I bring that one page on the website?

Should my baby's team say, why can I hold the baby today? Because based on this evidence from this website, and you cannot deny the evidence, I think it opens conversations, empowers the families to ask questions and advocate for their babies from the beginning.

Ben Courchia, MD (30:33.036)

I wanted to ask Tiffany about the section on the website called making critical care decisions, because I think that this is a topic that you alluded to earlier. But obviously it's probably the most difficult position to be in. And often the physicians can help guide the decision, but sometimes the physicians can offer options and it's up to the parents to make the decision. And it can feel very overwhelming.

I'm just wondering a little bit about what were the topics you were ready to try to touch on on this particular subject. think that you did a beautiful job on this page to try to remind families that they do have the privilege and the luxury of time and of seeking help. But I just want to find out from you a little bit about what is your vision for families being able to make critical decisions.

Tiffany Gladdis, PsyD (31:19.514)

Okay.

Ben Courchia, MD (31:29.272)

both with all the other things that are mentioned on the website with uncertainty, with worry. What was your idea behind this approach?

Tiffany Gladdis, PsyD (31:36.487)

Well, you know making critical care decisions can be hard for even the most involved parent who understands even has a medical background and If you imagine people who don't have all of those things it can be even much more complex or complicated and There are demographics of people who historically have mistrust

for the medical system just based on some of the aspects of care that they have received or been exposed to or heard about in the past. And so I think the uncertainty and lack of understanding can contribute to this mistrust because when you don't feel like you understand what the doctor is saying or things are changing and you don't understand why, that can really make you doubt and then.

what happens after that, like your alarm system starts to go up, you mistrust, you feel like you're in a state of panic and behaviors start to happen as they would for any of us if we were in a situation where we felt scared and our child's life was at stake. And so I think one of the things that Neopedia does is for people who might come from

backgrounds where their literacy is not as great or they have different styles of learning and they need to be able to visualize things or come back to them multiple times. That content is here, which then helps increase their sense of knowing and understanding, which then helps contribute to them making much more educated and comfortable decisions about the direction of their child's care.

Ben Courchia, MD (33:15.35)

I love that. I love that. And one of the aspects of that, and I'm going to turn this one to Bianca, but there's a section on the website called Neonatal Care Across the Globe, because I thought that was so avant-garde to actually put this on the website, because it's all about context. I think that for families, it's very understand to understand which context am I living in right now, both in my local context of what is the hospital I'm in with my baby and his or her.

specific issues, but also what is the global context to a better understand what does care for newborns look like maybe down the road, across the pond and so on and so forth. I thought that was very interesting just because it highlights specifically the great disparities that we can see in neonatal care. Can you talk a little bit more about why it was important to mention global neonatal care specifically in Neopedia?

Bianka Gallina GFCNI (34:15.304)

Right, so...

Bianka Gallina GFCNI (34:19.04)

Since we were aiming for a global information platform, meaning that the content doesn't dive into country-specific hospital practices, we really wanted to make the content feel relevant and useful to parents no matter where they are reading it from. This was the reason we also wanted to give this context and explain what NICU Care typically

involves around the world. This might give families a foundation, help them understand more what they are experiencing in their given context. And maybe just to mention, currently on Neopedia, we have content aiming to address upper

middle and high income countries, because this is where sort of care is more specialized when we are talking about NICUs or all the different procedures that are available. And in the future, we are hoping to expand this to also lower income settings. And so this is sort of the introduction to what the global context can really mean and how we are tackling that on Neopedia.

Ben Courchia, MD (35:46.488)

Yeah, but I think it's very important because sometimes I think that especially in developed countries, we have this sense, this entitlement, I would say, that we should have solved every problem in the world. there's no such thing that should be allowed to hurt my child. But when we hear maybe that a survival rate for a degree of prematurity or condition, maybe like, don't know, 80%, you would say, well, why is it not 100 %? But when you put that in the global context and you understand what is the burden of

of mortality for newborns, you start to understand, like actually we are fortunate, I may be fortunate to be in a context where my baby is not going to be at such a high risk. And I think that you guys do a phenomenal job also by, one of the rare pages that does link you to a complete outside website for more information in terms of the WHO. So I think this is great that you guys are able to link.

to more data on the WHO and you have a lot of graphics on this page that are again beautifully designed and easily to download for the parents. So I think this was phenomenal. I was very happy to see that particular page.

Fabiana Bacchini (36:55.654)

Can I just add something about this global piece? Because GFC and I, they bring us all together, right? We just came back from Germany. They have people from 37 different countries and we all advocating for the same thing, right? We are all raising awareness for the same things. And I think it does, you know, there's a lot of people from Africa, lot of people from South America, a lot of the Europeans are there, North America.

Daphna Yasova Barbeau, MD (37:10.377)

Mm-hmm.

Fabiana Bacchini (37:23.164)

So it brings us all together for the same purpose. And I think in Neopedia, when we start talk about Neopedia, it's like so many countries don't have the same opportunity that we have in our rich countries. So we have to have something for everybody, at least the basic to understand what it is. Even if they don't have their studies, but every parent has the right to be with their baby, no matter where they are born in the world. Every parent has the right to breastfeed.

to hold the baby kangaroo, carry skin to skin. So, and I think the platform even though is now is built for middle to high income settings. I think every country has opportunity to benefit from it as it's now because of the right of the babies and our journey on mental health laws is the same.

Ben Courchia, MD (38:10.798)

And a bit like what you were saying before, mean, if we start comparing notes and we see that skin to skin care is something that everybody across the globe advocates for, then it gives you even more power to say, hey, like I'm in New York City. Like, why wouldn't I be able to do skin to skin today if that is something that globally is being done and widespread? And it's also, by the way, I think we should recognize the fact that it is a commitment from

Daphna Yasova Barbeau, MD (38:26.185)

Mm-hmm.

Ben Courchia, MD (38:39.138)

the organization behind Neopedia, which was originally named the EFCNI, the European Foundation for the Care of Newborn Infants, that is now the GFCNI, the global foundation for the care of newborn infant. I think that this is truly an alignment in terms of having this commitment to the global community of newborns and their families.

Daphna Yasova Barbeau, MD (39:00.853)

Really beautiful. And something else you mentioned, Fabiana, is even all over the world, even though the medical experience may be different, there's something about the parent experience that's kind of universal, right? There are some cultural differences, there are societal differences, but that desire to protect and love and care for your baby is so...

universal and thinking about what is your baby's future going to be like? and actually, so I wanted to highlight one more section, this going home and, and growing up, because I think that no matter how long the parents are in the NICU, even from day one, they're thinking about going home and growing up. And we are not communicating with them anything about going home and growing up. Yeah.

Ben Courchia, MD (39:53.132)

Yeah, that's something we talked on the podcast before. Discharge planning starts on day one, right?

Daphna Yasova Barbeau, MD (39:57.171)

Yeah, yeah. And parents have these questions that I think we give really nebulous answers to sometimes because we don't have the information. And sometimes we do have the information and we can provide some of those, I guess, bumpers for families. Actually, one of the largest pages is this preemie care at home. And when I was looking through that, was

really struck about how little we do that for parents when they're in the NICU. And then they end up at home and like Tiffany said, they really didn't know what to expect. They don't have anybody to turn around and call and press the call button and say, what do I do now? And so I think this is useful for families at home, but hopefully for families before they go home so that they can think about what home.

looks like for them and what are the specific things that they will need. I also think the team did a wonderful job in highlighting this preterm birth long-term impact because I think the neonatal community is recognizing that it's not just about survival anymore, right? And again, that speaks to high resource countries, but we really want to...

talk about long-term outcomes and outcomes that are relevant to families. So I thought that was so neat how you talked about school aged, even through high school, what are maybe some social challenges in addition to the long-term health effects. And so I'm curious a little bit about that process, about giving enough information, but not too much information and highlighting.

how this is like a lifetime trajectory. We were talking a lot about life course and it's not just these few months in the NICU, but how does that shape the rest of somebody's life and the whole family?

Bianka Gallina GFCNI (42:07.85)

This was definitely one of the sections that we have put a lot of emphasis on. basically, the whole project, so Neopedia, has been a long-term plan and dream of GFC and I's co-founder and chairwoman, Zia Kamader. She is a mother who lived through this herself, so she knows the key role that clear and accessible information can play for families.

And the information on what happens after discharge, you know, pre-me care at home, what you mentioned, going home, growing up has been one of the experiences where this lack of information, the information gap has been most visible in her experiences. That's why we have put so much emphasis on

on this because we also know that this is very difficult to find information on online.

Right, this is just one of the sections that we have had most need for.

Ben Courchia, MD (43:20.268)

Yeah. And, and one of, again, everything in this website is done in a very innovative way. I thought that this was so special that for, specifically the pages, social experiences and relationship, you actually have a former preemie who is now an adult who comes to talk about the experiences of growing up, as a former preterm infant. think this is something that is not yet, is not done enough in our community. And that has tremendous impact for both the patients and their families to see, wow, like,

My baby can grow up. My baby can look like a normal adult and have a life. think these are very hopeful messages. I think that, yeah, I think that to me, the theme of this website is definitely to provide information to families, but it's also very much a message of hope. I'm just wondering if this was always the thread going through the ideation and the design and the rollout of the website to

continuously bring hope to families in the NICU.

Bianka Gallina GFCNI (44:23.19)

I must say the parent organizations that we have worked with provided fantastic input, especially on this. What sort of message do we want to provide with Neopedia? How do we want to write about these often difficult and heavy topics? so definitely our collaborating parent representatives have shaped.

the way this message is being formed. so we were able to take it further from an information platform to really this final result that, as Fabiana mentioned, almost holds your hand throughout the journey. It's there not just to provide you with information, but with advice and support and just that sort of human touch what parents might be needing.

Ben Courchia, MD (45:18.915)

Mm-hmm.

Ben Courchia, MD (45:22.456)

Fabiana, Tiffany, I was going to go in order, but Tiffany, you want any thoughts before we wrap up this episode.

Tiffany Gladdis, PsyD (45:30.523)

Well, I was just gonna add to what Bianca said and Ben, what you were saying, the hope piece is so incredibly important for parents while they're in the NICU because they are literally living out their worst nightmare. And as you mentioned, and rightfully so, you have to share all of the medical complications or things that they might expect for their child given where the diagnosis is or what the current situation is.

but parents are not often hearing the positive side of that. And I think one of the gifts for me working in the neonatal follow-up clinic and getting to see these babies at two and three years old running around like regular toddlers is that I'm able to help give parents that hope too that right now things are really hard. But for most of our babies in most situations, they end up doing really well.

especially as they get older. So that hope piece of being able to see the future and know that there are, know, everything is not going to be horrible forever. think it's just really important.

Ben Courchia, MD (46:37.838)

I agree. Fabiana, the last time you were on the podcast, you left us with a message of hope at the end saying that we cannot go anywhere alone. I'm just wondering if you're going to leave us with another pearl to keep us up. No pressure whatsoever.

Fabiana Bacchini (46:47.9)

No pressure.

Tiffany Gladdis, PsyD (46:48.551)

No question, right?

Fabiana Bacchini (46:53.308)

I don't know if I have something inspiring to say, but what I want to say is you always talk about, you know, everything goes on and babies grow up. But for a lot of us, our baby's going to have a diagnosis, right? Like my son has cerebral pals, I see a lot of families with babies with other diagnosis that we consider the not as good outcomes. And I think Neopedia covers all of it because despite what it is,

we are there together. So it's not only, okay, okay, my baby's developing according to the milestones, according to the books, everything is so perfect. Because now when you see these long-term outcomes and you see kids in the teenager years with behaviour issues, learning difficulties, social issues, it's happening. There's a lot of research happening that there is a long-term outcomes even for babies who are born late pre-term.

So, and we, I think Neopetia is giving that message of no matter what, we are together. Okay, so that is not my inspiring quote, but my reality quote that for parents like me or parents who lost a baby, they are not alone. And I think that's what it is, like is holding the hand for every parent, not only the parents who had, you know, a more smooth journey going home.

Ben Courchia, MD (48:20.354)

I really appreciate that. Fabiana, Tiffany, Bianca, thank you very much for being on the podcast. Congratulations on this great work. Neopedia is a new resource spelled N-E-O-P-E-D-I-A. You can find Neopedia for free on the web at neopedia.org. We wish you the best of luck and we are looking forward to continue seeing this platform grow. Thank you very much.

Tiffany Gladdis, PsyD (48:46.663)

Thank you.

Bianka Gallina GFCNI (48:47.671)

Thank you.

Fabiana Bacchini (48:47.868)

Thank you.