#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 Bacchini is the Executive Director of the Canadian Premature Babies Foundation (CPBF). Her advocacy began in the NICU with her surviving twin, who was born extremely preterm. She participated in the Family Integrated Care (FiCare) study, later becoming a global ambassador for the model. Her son’s cerebral palsy diagnosis strengthened her commitment to supporting preemies and their families. Fabiana collaborates with researchers worldwide to integrate family perspectives into research studies and serves on multiple advisory committees, including the Canadian Preterm Birth Network and GFCNI.

Dr. Tiffany Gladdis: Dr. Tiffany Gladdis is an Associate Professor at the University of Missouri–Kansas City and serves as the Perinatal/Neonatal Psychologist at Children’s Mercy Hospital Kansas City, supporting families in the Fetal Health Center, the Neonatal Intensive Care Unit, and the Neonatal Follow-Up Clinic. Dr. Gladdis is also the Medical Director for the Office of Equity and Diversity at Children’s Mercy. Dr. Gladdis’ clinical interests include attachment and bonding, trauma, infant and perinatal mental health, and empowering families who identify as Black, Indigenous, or Persons of Color (BIPOC). Dr. Gladdis’ research interests include the impact of psychosocial support for parents on the well-being of their baby and the power of attachment on the developing infant brain. Dr. Gladdis is on the board of directors and is a founding member of the Missouri Association for Infant Mental Health and Early Childhood (MOAIMH-EC), on the executive committee for the National Network of NICU Psychologists (NNNP), and an executive board member for Hand to Hold. Dr. Gladdis is also the owner of Hope.Love.Heal. Therapy & Consulting, where she provides training and consultation to organizations nationally.

Bianka Gallina: Bianka Gallina is a Communications Manager at the Global Foundation for the Care of Newborn Infants (GFCNI), where she works on international communications in the healthcare space. Her academic focus on cross-cultural communication has gone hand in hand with a career that’s taken her across borders and into diverse cultural settings. She is passionate about newborn health, making complex ideas accessible, and connecting people across borders through clear, thoughtful communication.

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

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

Daphna Yasova Barbeau, MD: Good morning. Happy to be here.

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

Fabiana Bacchini: Thank you. Thank you for having me.

Ben Courchia, MD: You are a preemie parent, and today we're talking about a brand new tool made available by the GFCNI (Global Foundation for the Care of Newborn Infants) called Neopedia. 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—still one of my favorite episode titles—Not Visitors: Redefining Parenthood in the NICU.

Thank you for being on the podcast. You are joined today by Dr. Tiffany Gladdis. Tiffany, welcome to the show.

Tiffany Gladdis, PsyD: Hello, I'm happy to be here.

Ben Courchia, MD: 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 Gallina, who is a co-leader of the Neopedia project and the communications manager for GFCNI. Bianca, welcome to the podcast.

Bianka Gallina: Thank you so much for having me.

Ben Courchia, MD: We feel very privileged at the Incubator because we were given early access to Neopedia—a brand new tool available online for parents and professionals. Bianca, I'm going to start with you. For those who have never heard of Neopedia, can you tell us a little bit about it?

Bianka Gallina: Of course. As the name suggests, Neopedia is like an encyclopedia for neonatal care. It's a free, easy-to-access online platform designed especially for families of preterm or sick babies. Just type in the URL neopedia.org in your browser, and you'll be taken to the website.

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

Bianka GallinaI: I'm pretty sure that's where the name comes from. Our core expert groups—parent organizations we worked with—helped us pick the name, and we all really like it. It’s very suitable for what the platform is, and it’s catchy for parents and users to remember.

Ben Courchia, MD: I’m going to give people an inside look at Neopedia. First, the website is beautifully designed. I don’t know if more people could have come on the podcast today to talk about the drawings and colors, but it’s gorgeous.

The structure of the website is quite elegant. There are five main tabs covering an overview of neonatal care: pregnancy and birth, NICU experience, going home, growing up, and parent support. Each page has a submenu with different topics, and the navigation is very user-friendly. Every page has content, and at the bottom, there’s information on the expert who reviewed it to ensure accuracy and completeness.

Currently, the website is available in English, but since you are a global collaborative for neonatal care, you plan to translate it into other languages such as French, Spanish, Italian, and German. Bianca, going back to you—what was the need you saw in the community that warranted creating this tool?

Bianka Gallina: What inspired Neopedia was the information gap that exists in many countries and languages. When a baby is born preterm or sick, there’s often a lot of fear and uncertainty, which is made harder when families can’t find clear, trustworthy information—especially in a language they understand. The need for information doesn’t end when the baby leaves the NICU; it continues into early childhood and beyond. We wanted to create a comprehensive but easy-to-understand resource that supports families throughout the entire neonatal journey—from high-risk pregnancies to NICU stays, to discharge and beyond. At launch, we already have content available in five languages: English, French, German, Italian, and Spanish. We plan to add more in the future.

Daphna Yasova Barbeau, MD: What really struck me as I was looking through all of the headings is that at first, it feels simple to a neonatologist. But after speaking with so many parents, I’ve realized that most families don’t even know what a NICU is when they’re admitted. They certainly didn’t expect to be there.

Even very well-educated families, including physician families, often come in at a loss. They have no idea what’s going on. What you’ve done so cleverly is break down the admission into components—what the NICU is, who you’ll see there, what to worry about, what questions to ask, what going home looks like, and how to participate in the NICU.

On the back end, we’re finally recognizing as neonatal healthcare professionals how many questions parents have about the future. We’re not very good at addressing those, which can frustrate families. But you’ve included what to look for, what follow-up is needed, and woven in videos and stories—even from adults born preterm—about how resilient preemies are and how they can overcome many challenges. That’s so important for families to see early on. We tend to focus on the doom and gloom because we want them to understand the risks, but this site also offers hope. That’s what parents are asking for.

After all that description, Fabiana and Tiffany, maybe you can speak a little to what those expert panels looked like—how many families you involved, how many experts, and how you decided what to keep and what to cut.

Fabiana Bacchini: I can start. It was such a great experience being part of the expert core group. We were given the medical information and sometimes told Bianca, “This still sounds too medical. It’s not parent-focused.” We even scrapped entire chapters and reworked them. The group included parents who lead organizations in many countries, from Turkey to the U.S., here in Canada, and across Europe. It was great to see different perspectives and how GFCNI really took our feedback to adjust content for parents. Now, Neopedia feels like your peer-support website. It’s broken into pieces so you can take it step by step. It feels like there’s a parent with you every step of the way. That’s what makes it unique compared to other comprehensive sites. It’s peer-driven but evidence-based—a great combination of parent voices with solid medical information, developed in true collaboration with medical experts. It was such a rewarding experience for all of us parent partners on this project.

Tiffany Gladdis, PsyD: Yeah, that's great. There was a similar but slightly different process for the content experts, and each individual found their own pathway toward being a part of the panel. 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. Then we had a big call where all of the experts were debriefed about the project and the purpose and objective for parents.

From there, we were able to opt in and say whether this was something we wanted to participate in. For me, after hearing what the purpose of this website would be, I thought, “Absolutely, I want to be a part of it,” because it's so necessary and so needed for our families in the NICU. There were 20+ content experts initially, which later dwindled down to those who participated. We were provided content and asked to be co-authors of that information. There were parts we would eliminate, add, or edit.

The way I decided what was important to include came from my experience working with families in the NICU. I also have the privilege of working with families after discharge in our neonatal follow-up clinic. And Daphna, what you were saying is so true—it does not stop when families leave the NICU. In many ways, the stress, anxiety, depression, and PTSD can really increase because they no longer have the support of the NICU team. Things can be even more uncertain, or families go home with equipment, which changes their expectations for what life would be like. I love that Neopedia doesn’t just speak to the NICU experience but also to life beyond it, because it doesn’t stop for families.

Daphna Yasova Barbeau, MD: Yeah, I love that. And I wanted to highlight and get more of your thoughts, Tiffany. It's almost like every page gives medical information—some pages specifically focus on mental health and resources for families—but every page that gives medical information is also paired with supportive statements for families: ways to care for yourself while you're in the NICU, how to ask for help, how you can bond with your baby. Those are places where I think we often fail parents. We feel like they just need more information, and sometimes we miss their cues for emotional support. Given your experience as a mental health professional in the NICU, what are ways—since not all units have people like you—that this website, Neopedia, can help? I hope people who are listening don’t think it’s just for families. I hope professionals look at it and say, “That’s something I can incorporate into my discussions with families.” Is there anything in particular you think people should take away from this mental health thread woven throughout the website?

Tiffany Gladdis, PsyD: I think there’s a lot people can take away. As a NICU medical team, we get training on mental health and the experience of parents—that’s becoming more common—but not many NICUs have psychologists. Most don’t. Parents don’t get training on how to show up in the NICU or how to bond with their baby. Many are not prepared for the experience. That’s why I think Neopedia is great—both for NICUs with and without mental health professionals. Parents can go here and access resources, including a page with local and national organizations they can utilize. In the US, there are several virtual resources available for free, which is amazing.

They can also learn that their experience is normal. Oftentimes when I’m talking with parents, they say, “I’m feeling X, Y, and Z—am I crazy?” And I get to say, “No, you’re not. You’re experiencing a normal reaction to a very traumatic situation.” It’s okay not to show up as your best self. It’s okay to feel overwhelmed, stressed, or anxious. When I normalize their feelings and affirm their stress, I can almost see a weight lift off their shoulders. Then I can provide reassurance: “This is really hard right now, but it won’t always feel like this.” I can also give suggestions for self-care while in this situation and explain that in order to care for their baby, they must also care for themselves. You can’t do the parenting job well without doing the self-care job well. All of that is in there.

Daphna Yasova Barbeau, MD: I love that. And I wanted to highlight one page where, Fabiana, you’re the highlight video—Coping with Worry. I think it’s such a beautiful page because it addresses exactly what parents are experiencing. What were you thinking about when you created that video?

Fabiana Bacchini: As you mentioned, Neopedia is not only for parents—it’s also for healthcare providers to understand and validate how we feel. When I was doing that video with GFCNI, I was thinking, “If I could send a message to parents, I would normalize and validate their feelings.” But it’s also for healthcare providers to understand what it’s like and to talk to us in that way. Ask us how we’re doing. That’s such a simple thing that often doesn’t happen, because people don’t know what to do with the answer. If I say, “I’m not doing well,” what will you do with that? Sometimes, just by asking and sitting with us, you’re showing, “Yes, I’m here with you.” Neopedia does that—it helps parents and helps healthcare providers come from a place of understanding that we need support too. And what I love is that every page has that piece: we’re coming alongside you as parents, together with the evidence for families.

Ben Courchia, MD: I think you all did a beautiful job. In neonatology, each topic can feel overwhelming. If you gather the evidence and do a literature review, it’s a mountain, and deciding where to start is difficult. Then comes the challenge of distilling it into something accessible and easy to read while keeping it concise—that’s where the real value lies. For example, under the pregnancy and birth tab, there’s a subcategory called Possible Complications, broken down by organ system—lungs, heart, brain, kidneys, digestion, infections, temperature control, blood glucose, and so on. Each section is well-constructed. If we take the lungs, there are six topics: apnea/asphyxia, bronchopulmonary dysplasia or chronic lung disease, pneumothorax, pulmonary hypertension, and respiratory distress syndrome. Each topic is very well described. How hard was it to make editorial decisions about what to cover, what not to cover, and still stay true to Neopedia’s mission of centering families?

Bianka Gallina: That was one of the big challenges. We wanted to include as much information as possible to help parents understand what they or their baby might be going through without overwhelming them. That’s why, on pages like the one you mentioned, we have drop-down sections. Users can choose to dive deeper only if they feel it’s relevant. This way, they can focus on what matters most in their situation. We also added gentle disclaimers, inspired by Fabiana’s words, reminding parents to read only what’s relevant at the moment to avoid overwhelming themselves.

Ben Courchia, MD: I love that disclaimer. It says: “Please consider reading the information that is relevant to you and your little one(s). By doing so, you can avoid overwhelming yourself with too much information in an already distressing time.” Absolutely beautiful.

I also love that the NICU experience tab is in the middle of the website’s five tabs. It reframes the NICU as just one step in a broader journey. That’s a message of hope—that there’s growth and going home ahead. This website also has tremendous value for physicians and trainees. I wish this had been available to me as a fellow. We don’t often have the vocabulary to speak to families—we learn the science, but not necessarily what matters to them. This site helps us reframe medical information in the context of family values. Whenever a medical term comes up, there’s a little question mark with an easy-to-understand explanation. That’s great for physicians, too—it’s how I could explain something like blood pressure to a family in plain language. This site is not just about accompanying the family; it’s also a tool clinicians can use. Fabiana, when you designed it, did you also have clinicians in mind so they could use these resources to better serve families?

Fabiana Bacchini: I don't know if it was intentional or not, but I think so. I always feel like there is a turning point for a parent in wanting to know more. For me, it was when the doctor sat down and said, “Okay, your son has a PDA.” 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 a PDA. But he said to me, “You are the mom; you have the right to know.” He sat down with me, drew a heart, and explained to me how the heart works and what the PDA was doing. That was my turning point in wanting to know more.

When I look at Neopedia, I think it does exactly the same—because it breaks things down for me, but also for you, so you can explain it to parents. If it was intentional when you were designing it, I don’t know. I certainly had that in mind because everything I do here at the CPBF is with that perspective. I always think, okay, all my infographics can also be used by the nurses and doctors to explain things to families in the NICU. They’re broken down into lay language, and they’re so simple because everyone needs to understand—and can understand. I think having the glossary in Neopedia was so great, not only for us, but for explaining to parents what terms mean. Yes, it’s all big words and a million acronyms that you need a dictionary to understand. Many people, like me, have English as a second language in the NICU. So it’s very important that the whole piece comes together as, “Okay, this is how you can teach parents what to do.” Neopedia does that so beautifully.

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: as something you could sit down with me and explain what each condition means for my child.

Daphna Yasova Barbeau, MD: That's great. I love hearing that story, Fabiana. We've spoken to lots of parents who become parent advocates, and we always ask, “Why? Why do some parents become advocates?” Each time we hear a story like yours, someone on the NICU team empowered them. They said, “You should know more. You deserve to know more. You can ask more questions.” I think the Neopedia website does a really good job of signaling that to families: that you can cope with this situation by learning more, by having the information, and by asking better questions. I don’t know if that was intentional, but that’s what comes across. Especially at a time when we’re trying to empower parents to be present at the bedside, I’m not sure we’re doing a great job of empowering them on the educational, medical side—even though they’ll have to carry that medical information for the rest of their children’s lives. What are some of those opportunities you think people can take from Neopedia? How do you hope parents will translate what they read into empowerment in the unit?

Fabiana Bacchini: 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. My son spent five months in the NICU, but he’s 13 now, and what happened there carried on into the long-term outcome. You need to advocate for your child for the rest of their life. We need to know what happened in the NICU so we can share it with the team in the community. Neopedia invites parents to ask questions. It empowers us to ask the right questions with the right terminology so we can understand what’s happening from the beginning—for the long term.

If a family doesn’t know they can hold their baby skin-to-skin because the baby has an IV, they may not ask. When we run peer groups, we hear stories like, “I didn’t hold my baby because my baby had an IV.” That’s not a reason not to hold your baby. Neopedia explains that, so parents can ask, “Can I hold my baby?” or “How can I hold my baby?” or “Is it okay to hold my baby today?”

Not all parents will have a healthcare provider who comes to the bedside to explain these things. If you can share Neopedia, you can invite families to participate in care and make informed decisions using an evidence-based tool. You could even bring up a page on the website and say, “Why can’t I hold my baby today? Based on this evidence, I should be able to.” Evidence opens conversations, empowers families to ask questions, and helps them advocate from the beginning.

Ben Courchia, MD: I wanted to ask Tiffany about the section on the website called “Making Critical Care Decisions,” because I think this is a topic you alluded to earlier. It’s probably the most difficult position to be in. Physicians can help guide the decision, but sometimes they present options, and it’s up to the parents to decide. That can feel overwhelming.

What topics were you ready to touch on in this section? I think you did a beautiful job of reminding families that they have the privilege and luxury of time and of seeking help. What is your vision for families being able to make critical decisions—especially while dealing with uncertainty and worry?

Tiffany Gladdis, PsyD: Making critical care decisions can be hard, even for the most involved parent who understands the situation and may even have a medical background. For people who don’t have those advantages, it’s even more complex.

There are demographics of people who historically have mistrust for the medical system, based on care they’ve received, witnessed, or heard about. Uncertainty and lack of understanding can contribute to this mistrust. When you don’t understand what the doctor is saying, or when things change and you don’t know why, you start to doubt. Your alarm system goes up. You mistrust. You panic. Your behaviors shift—just as they would for anyone if they felt scared and their child’s life was at stake.

Neopedia helps by providing information for people who may have lower literacy or different learning styles. They can visualize things, return to the content multiple times, and build understanding. This increases their sense of knowing, which helps them make more educated and comfortable decisions about their child’s care.

Ben Courchia, MD: I love that. And Bianca, I wanted to turn to you about the “Neonatal Care Across the Globe” section. I thought it was very avant-garde to include that because context is so important. Families need to understand their local context—the hospital they’re in, their baby’s specific issues—but also the global context. It helps people see disparities in neonatal care. Why was it important to include a global perspective in Neopedia?

Bianka Gallina: Since we were aiming for a global information platform—meaning the content doesn’t dive into country-specific hospital practices—we wanted the content to be relevant to parents anywhere. That’s why we explain what NICU care typically involves around the world. This gives families a foundation and helps them understand their own context. Currently, Neopedia’s content is aimed at upper-middle and high-income countries, where care is more specialized. In the future, we hope to expand to lower-income settings as well. This section introduces the global context and how we’re addressing it.

Ben Courchia, MD: That’s important because in developed countries, we sometimes feel entitled to perfect outcomes. If we hear a survival rate is 80%, we ask, “Why not 100%?” But when you see the global data, you realize we’re fortunate to have lower risks. You also link to WHO data and provide beautiful, downloadable graphics. That’s phenomenal.

Fabiana Bacchini: Can I add something about the global piece? GFCNI brings us together. We just came back from Germany, where there were people from 37 countries, all advocating for the same things. Many countries don’t have the same opportunities as high-income nations. But every parent has the right to be with their baby, no matter where they’re born. Every parent has the right to breastfeed, to do kangaroo care, to hold their baby skin-to-skin. Even though the platform is currently built for middle- to high-income settings, I think every country can benefit from it now because these rights—and the mental health journey—are universal.

Ben Courchia, MD: Exactly. If we compare notes globally and see that skin-to-skin is advocated everywhere, that gives even more power to parents to ask for it locally. It’s also worth noting that the organization behind Neopedia, originally the European Foundation for the Care of Newborn Infants (EFCNI), is now the Global Foundation for the Care of Newborn Infants (GFCNI). That’s a true commitment to the global newborn community.

Daphna Yasova Barbeau, MD: Beautiful. And something else you mentioned, Fabiana, is that even though the medical experience may differ globally, the parent experience is universal. The desire to protect, love, and care for your baby, and to think about their future, is shared everywhere. I want to highlight one more section: “Going Home and Growing Up.” No matter how long parents are in the NICU, they start thinking about going home on day one. But we rarely communicate with them about that.

Ben Courchia, MD: Exactly—discharge planning starts on day one.

Daphna Yasova Barbeau, MD: Parents have questions, and sometimes we give vague answers because we don’t have the information—or we don’t share it even when we do. One of the largest pages is “Preemie Care at Home.” I was struck by how little we prepare parents for that. At home, they can’t press a call button for help. This section is useful for families both at home and before discharge, so they can plan and anticipate their needs.

The team also did a wonderful job with “Preterm Birth Long-Term Impact.” The neonatal community is recognizing it’s not just about survival anymore, especially in high-resource countries. We want to talk about long-term outcomes relevant to families. I loved how you included school-age and high-school challenges—both medical and social. I’m curious about your process for giving enough information without overwhelming parents, and for framing this as a lifetime trajectory. It’s not just a few months in the NICU; it shapes the rest of the family’s life.

Bianka Gallina: This was definitely one of the sections we put a lot of emphasis on. The whole project, Neopedia, has been a long-term plan and dream of GFCNI’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. The information on what happens after discharge—premie care at home, going home, growing up—has been one of the areas where this lack of information, this gap, has been most visible in her experiences. That’s why we have put so much emphasis on it, because we also know it’s very difficult to find information about it online. This is one of the sections where we’ve seen the most need.

Ben Courchia, MD: Yeah, and again, everything on this website is done in a very innovative way. I thought it was so special that, for the pages on social experiences and relationships, you actually have a former preemie who is now an adult talking about the experiences of growing up as a former preterm infant. I think this is something that is not done enough in our community and it has tremendous impact for both the patients and their families. Families can see, “Wow, my baby can grow up. My baby can look like a normal adult and have a life.” These are very hopeful messages. 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 wondering if this was always the thread going through the ideation, design, and rollout of the website—continuously bringing hope to families in the NICU.

Bianka Gallina: I must say the parent organizations we 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? Our collaborating parent representatives really shaped the way this message was formed.

We were able to take it further from just an information platform to the 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, support, and that human touch parents might need.

Ben Courchia, MD: Do you all have any thoughts before we wrap up?

Tiffany Gladdis, PsyD: I’ll just add to what Bianka said and to what you were saying, Ben—the hope piece is so incredibly important for parents in the NICU because they are literally living their worst nightmare. As you mentioned, and rightfully so, you have to share all the medical complications or things they might expect for their child given the diagnosis or current situation. But parents are not often hearing the positive side. 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 can help give parents that hope—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. That hope piece—being able to see the future and know that everything is not going to be horrible forever—is just really important.

Ben Courchia, MD: 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 wondering if you’re going to leave us with another pearl to keep us going. No pressure whatsoever.

Fabiana Bacchini: No pressure! I don’t know if I have something inspiring to say, but I will say this—you always talk about how everything goes on and babies grow up. But for a lot of us, our baby is going to have a diagnosis. My son has cerebral palsy, and I see many families with babies who have other diagnoses that we consider “not as good” outcomes. I think Neopedia covers all of it because, despite what it is, we are there together. It’s not only, “Okay, my baby is developing according to milestones and the books say everything is perfect.” Because when you see long-term outcomes, you see kids in their teenage years with behavioral issues, learning difficulties, social challenges—it’s happening. There’s a lot of research showing there are long-term effects even for babies born late preterm.

I think Neopedia gives the message that no matter what, we are together. That’s not my inspiring quote, but my reality quote—for parents like me, or parents who lost a baby—you are not alone. And that’s what it is: holding the hand of every parent, not only those who had a smoother journey going home.

Ben Courchia, MD: I really appreciate that. Fabiana, Tiffany, Bianka—thank you very much for being on the podcast. Congratulations on this great work. You can find Neopedia for free at neopedia.org. We wish you the best of luck and look forward to seeing this platform grow. Thank you very much.