#318 - 🌍 Navigating the NICU: A Mother's Journey (ft. Tasmin Bota)

Hello friends 👋

In this episode, Tasmin Bota shares her  journey as a mother of a premature baby and the founder of Preemie Connect. Tasmin shares about her traumatic birth experience, the challenges faced in the NICU, and the lack of emotional support for parents of premature infants. Tasmin also highlights the motivation behind creating Preemie Connect as a way to fill the gap in support and resources for families dealing with prematurity. The conversation also touches on the current initiatives of Preemie Connect and the ongoing fight for better emotional care in neonatal units. The discussion also highlights the importance of community support, the impact of language used by healthcare providers, and the systemic issues that affect preemie care in South Africa. Tasmin also outlines her vision for the future of Preemie Connect and the necessary policy changes to improve outcomes for preemie families.

Link to episode on youtube: https://youtu.be/aFE9vF4NbVo

Resources mentioned in episode:

https://preemieconnect.my.canva.site/

----

Short Bio: Tasmin Bota is the Founder and Executive Director of Preemie Connect. Tasmin is the mom to a preemie baby who was born at 28 weeks gestation, weighing in at 1.08kg, due to placenta abruption. Tasmin started Preemie Connect because there were no support groups at the time, specifically South African based, who provided support to parents with premature babies. Preemie Connect is passionate about providing emotional support for parents as well as evidence based resources to ensure preemie babies survive and thrive. Preemie Connect is also a Parent Representatives for GLANCE (Global Alliance for  Newborn Care)

Contact:

Preemie Connect Instagram: https://www.instagram.com/preemieconnect/#

Preemie Connect Facebook: https://www.facebook.com/preemieconnect

Preemie Connect Twitter: http://www.twitter.com/preemieconnect

Preemie Connect TikTok: https://www.tiktok.com/@preemieconnect

----

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

Mbozu SipaloHello friends, welcome to yet another episode of the Global Neonatal Podcast. Shelly-Ann, how are you doing?

Shelly-Ann DakaraiI'm good. Always excited to have another interview and kind of catch up all at once.

Mbozu SipaloYes, super excited for today’s guest. Let me introduce our listeners to Tasmin Bota. She is the founder and executive director of Preemie Connect. She’s a mom to a preemie baby who was born at 28 weeks gestation, weighing in at 1.08 kilograms due to placental abruption. He is now eight years old. Jason is his name. She started Preemie Connect because there were no support groups at the time, specifically South African-based ones, providing support to parents of premature babies. Preemie Connect is passionate about providing emotional support for parents, as well as evidence-based resources to ensure preemie babies survive and thrive. It is also a proud parent representative for GLANCE—the GLobal Alliance for Newborn CarE.

Tasmin, hello and welcome to our podcast.

Tasmin BotaThank you so much for having me here.

Mbozu SipaloWe’re so glad to have you and to share your amazing story. To start off, before founding Preemie Connect, could you tell us a bit about yourself? What was your life like before this journey began? And could you also share your birth story?

Tasmin BotaLife was pretty easy and laid-back before I had my preemie. I already had one child at the time, so I was juggling motherhood and work. We were very, very excited to have our second child. It took a long time for us to conceive the second time, so we were super excited. Everything was fine—until it wasn’t. That’s the easiest way to describe it. A part of my story I don’t often share, but have started speaking about more recently, is that six weeks before I gave birth, I was in a motor vehicle accident. I was 21 weeks pregnant at the time. The doctors had no compassion. All they said was, “If your baby comes now, there’s nothing we can do.” Imagine experiencing your life flashing before your eyes, and then being told they can’t help your baby. I remember praying, “God, please keep him in as long as you possibly can.”

That turned out to be six extra weeks. In South Africa, the age of viability is 28 weeks. I had some bruising and scarring from the accident, but otherwise came out okay. When I hit that six-week mark, I finally felt like we were in the clear. I released this big sigh of relief. And then, out of nowhere, my placenta ruptured. Ironically, I was on the opposite side of town when it happened—nowhere near the hospital I was supposed to go to. But God works in amazing ways. I ended up at the one hospital in Johannesburg dedicated to maternal and child care, and it happened to be the closest one.

By the time I arrived, the bleeding had subsided a bit and I was feeling okay. I thought, “We’re gonna be fine.” I was even ignorant to how serious it was—I figured they’d just put in a stitch and send me on my way. But they admitted me for observation. That Sunday evening, during final rounds, the doctors told me everything looked good and I’d likely be discharged the next morning. I thought, “Great! A little vacay away from my toddler—feet up!”

But Monday morning, I was woken up by another placental abruption. Everyone went into complete panic mode. I barely had time to call my husband and say, “They’re taking the baby out right now.” I had just 10 seconds to tell him that.

There was so much happening. In that high-pressure situation, doctors are asking you questions but all you can think is, “Is my child going to be okay?” I knew very little about prematurity, so in my mind, I thought it was over. They had to put me under for the C-section. I didn’t see my baby when he was born. When I woke up, the first thing I asked the nurse was, “Is my baby alive?” She said, “Yes, he came out crying. He weighs 1.08 kilograms.” I thought, “Okay, babies are normally 2.5—what’s one more kilo? Not a big difference.”

But I wasn’t prepared AT ALL for what a premature baby actually looked like. It took about nine hours before I could see my baby. A lot was happening in the background. My husband had sent me a picture—he was wrapped in a blanket with a nasal cannula and looked like a normal baby. But when I got to the NICU, he was on a ventilator, and he was skin and bones. No one had told me what a premature baby would look like. Seeing him like that sent me into complete panic mode. When you hear the word “ventilator,” you know it’s life support. I thought, “There’s no way he’ll survive.” There were more tubes and wires and nappy than actual baby. I really thought, there’s no way. That’s how our birth story went.

Shelly-Ann DakaraiThank you for sharing that with us. That must have been a very traumatic experience, and we appreciate you being willing to relive those moments. You mentioned seeing him for the first time and being surprised. Can you walk us through those first few days, and how you adjusted to the reality of the NICU?

Tasmin BotaAs I said, I was completely taken aback. In my mind, my baby wasn’t going to make it, so I tried not to bond with him. I didn’t want to get too close because I didn’t know how I’d cope emotionally if he passed away. But again, God came through—especially through my husband. His faith didn’t waver one bit. He had enough faith for all three of us.

I stayed in the hospital for four days. At that time, paternity leave was only three days, which meant my husband had to return to work. I cried and begged him not to leave. I couldn’t go see the baby on my own. For that first week, I wouldn’t enter the NICU unless my husband was with me. One night, I went to deliver breast milk, and the nurse asked if I wanted to come in to see my baby. I burst into tears and said, “No, thank you. Here’s the milk.” It was only after the ventilator was removed—a week after he was born—that I thought, “He’s fighting. Let me try and fight alongside him.” But it wasn’t easy. That’s when information about prematurity started trickling in. I learned that preemies usually go home close to their due date. I thought, “We’ll be here for three months.” The hospital was across town, I no longer had a car—it was overwhelming.

And in the NICU, it’s not just your situation—you’re witnessing others’ journeys too. Your emotions are high for your own baby, but also for the others. You see those other babies every single day that you get so invested in their journeys as well. I’ll never forget one day walking into the NICU. My baby’s monitor faced the door, so every day I’d check it as soon as I walked in—if the monitor was on, I knew he was alive. One day, I walked in and saw a baby wrapped in a blanket. That was unusual—they’re usually only wrapped in plastic. But I carried on, eager to see my baby. It wasn’t until a family walked into the unit that I realized a baby had passed away. That sent me over the edge. I even said to the team, “You should have warned me. You shouldn’t have let me walk in like that.” But unfortunately, that kind of experience becomes normal in the NICU. It’s horrible to say, but it does.

Mbozu SipaloYeah, I can only imagine that scene of being a mother in the NICU, walking in and wondering, “Where is my baby?” Thank you for sharing that.

Just to explore that a bit further—you mentioned asking the NICU staff why they didn’t warn you. What kind of support systems were in place for you as a preemie mom at the hospital? And what have you done as the founder of Preemie Connect in that space? It would be great to hear a “then and now” perspective, especially in a developing context where emotional well-being is still a growing area of focus.

Tasmin BotaThat's a great question. You know, it's so complicated. When I was in the NICU, there was no emotional support provided due to resources, plain and simple. Only parents of very terminally ill children received support, and I think it was more focused on helping them cope with how the situation was going to end. It was a question that I kept asking, because I couldn't believe nobody would offer support. The nurses tried their best, the doctors tried their best. I think I vented to all of them. I was the mom constantly asking questions. I needed to understand everything going on all the time.

That’s one of the reasons Preemie Connect was started—because I saw this huge, huge gap. They provided as much support as they could with what they had. A lot of the time, the nurses were going above and beyond the scope of their job. Like that one morning when I walked in—usually I arrived just after they finished washing and prepping the babies for the day—and I don't think anyone was even thinking, “We need to stop the mother,” until I got there. And then I was in complete shock. So I don’t blame them. I understand they were dealing with so much. They had to do the job they were employed to do, and then also be your psychiatrist, psychologist, and educator, because you don’t understand a single thing that’s going on. They were trying to explain it in a way that made sense to you. So I never looked at it like, “You failed me.” Never. But I did realize that the system was failing us.

When I got discharged, I had what I would say was the best support that could be provided while we were in the hospital. But for me, the post-discharge period—that's the part I couldn’t understand. I was like, how can they trust me to go raise this very fragile baby on my own? It felt like one day I was in the hospital and then—boom—I got discharged a day or two earlier than expected. I was so shocked when they said, “You’re going home.” I kept calling my husband, like, a hundred times: “You better come, you better come,” because I thought they were going to change their mind and say, “No, we’re joking. Your baby has to stay.” But when I left that hospital, what I thought was for the last time, I remember thinking: “My gosh, how can they leave me with this person? Am I fit enough to take care of him?” That’s when I went down this rabbit hole of trying to find support. I had so many questions, every day I had a new one. “Why is my baby breathing like that? I never used to hear those sounds in the hospital. But obviously, there’s so much noise there that you don’t notice things like grunting. So what’s that about?”

During our time in the NICU, I had formed a bond with a few of the moms. So after discharge, I started a WhatsApp group. It was really cool in the beginning—during our 2 a.m. feeds, we were messaging each other, asking questions. But of course, our knowledge was very limited. I thought, there has to be more—someone who can provide evidence-based information. At that time, I honestly couldn’t find anyone. And I wanted specifically South African-based support, because we have such a diversity of cultures here. I wanted someone who could relate to how we parent and raise children. I couldn’t find that. Eventually, I was so frustrated that I thought, if I’m searching for this, there have to be other moms searching too. And that’s how Preemie Connect came to be.

Shelly-Ann Dakarai So I feel like this is a good spot to talk a little bit more about Preemie Connect—how it started, what it does now, and how it helps families.

Tasmin BotaPreemie Connect started as a support group. The original idea was to have a physical support group in every NICU across the country. Because the truth is, when you're in the hospital, you are at your most vulnerable. That’s when we need to equip parents for life after discharge.

As unpredictable as the hospital stay can be, at least there are people there who know what they’re doing. But like I said, I was discharged with a baby I didn’t know how to care for. The dream was to provide a safe space where parents could express themselves freely, without the fear of being judged, and where they could build the confidence to ask questions.

Often, we’re scared to ask. I remember being afraid to ask something as simple as, “Why are you pricking my baby’s heel every hour?” So our goal was to build that confidence in parents. Preemie Connect has taken on a life of its own. I always say it was God’s vision, not mine—I never planned for it to become a registered organization.

Even though my heart still belongs to the support group, it hasn’t grown the way I wanted it to because of all the red tape around entering medical facilities. But one good thing that came out of COVID was the increased recognition of the importance of mental health. Some facilities now have their own in-house systems for supporting parents. Not all, but some. Our support group still exists online—our moms are still active on WhatsApp. And during my own search for support, I literally went on a trip around the world. I started with March of Dimes—the only organization I had heard of. They couldn’t help, but they referred me to EFCNI, now GFCNI—the Global Foundation for the Care of Newborn Infants. They told me nobody existed in South Africa, but gave me a contact in Africa. After more meetings, I realized that I was looking for a unicorn.

So we formalized the organization legally, and became part of what you’re referring to as GLONS. That opened a world of opportunities I didn’t even know existed. I got to share my journey on a global scale through the 2019 Survive and Thrive Report.

But I have to admit—the underground work is intense. As the one running the organization, it’s a lot for your mental health. I’m a big empath, so it's been hard to navigate. Sometimes the moms only need you for the first six or twelve months of their journey, and then they disappear. My son’s journey grew alongside Preemie Connect. Prematurity “ended” when we left the NICU. I thought we were done. But then I got a discharge letter with follow-up dates. I assumed it was just for growth checks—but no, the appointments kept coming. That was another thing no one prepared me for. No one told me, “You’ll be coming back for years, because we need to check many developmental milestones.”

My son was doing great—until we hit the 10-month mark. We had a terrible time transitioning to normal foods, which I thought would be simple. People would say, “Remember, preemies have two birthdates, and you measure them based on this one,” so I kept saying, “He’s got the three-month window.” But eventually, they referred us to physical therapy, occupational therapy, speech therapy. I didn’t understand why we needed all of that. I think that’s another place where the system dropped the ball—no one sat me down and explained what the life of a preemie might look like. If someone had told me, “Many preemies will have developmental delays,” I would’ve been mentally prepared. I could’ve said, “Okay, the next two or three years will involve lots of hospital visits.” In our case, it didn’t stop. It’s been eight years. I did take a break when I had a third child—a high-risk pregnancy. At that point, I was mentally and physically exhausted. I told my husband, “I can tell something’s not quite right with our son, but I don’t have the mental capacity to manage both situations right now. Let me focus on getting this baby to term—just 37 weeks. If the concerns with our son haven’t resolved by then, we’ll deal with it.”

So that’s what we did. After that, we had to face the reality that something wasn’t quite right. At that point, we were in the public health system, and I felt like we’d gotten lost. I had built a rapport with our physical therapist—we got too comfortable. I felt like I wasn’t being seen anymore. So I tried a different approach. I took my son to a pediatrician. When I came out of that appointment, I left with an A4 page of everything that was wrong with my child. And I felt like—I had failed him. With all the information I had access to, I still felt like I had failed him. I cried, I felt sorry for myself for a moment. And then I said, “Okay. Time to put on the big girl panties and do what we need to do.” And that’s when the second phase of our journey began.

Shelly-Ann DakaraiThanks for sharing that. So before we touch on the second phase—if you're willing to share—you started Preemie Connect while caring for two children at that time. Some people go through challenges and get through with the support they receive, while others decide to make a change. Why do you think you felt, “I have to make this better. I have to go on this journey to make it better for others”? Can you share a little bit about that motivation? It's inspiring. Given everything you've had to deal with, it would have been easier to just focus on the four walls around you. But you made it a mission to help others who were in similar situations. What brought that motivation?

Tasmin BotaLike I said earlier, Preemie Connect has really been God’s initiative from the beginning. When you're sitting in the NICU for nine to ten hours a day, every day for 54 days, all you really have is time—and that time became deep conversations with my Maker. I was angry. I was so angry at God. I kept asking, “What did I ever do in this lifetime to deserve this?” That was my ongoing conversation: “How could You? How dare You do this to me?” But eventually, I was fortunate enough that He revealed why. I don’t often share that part of the story, but He made it clear why I was called to be in that situation, and why it was my duty to go out and make things better for others.

Sometimes, all someone needs is a listening ear—someone who truly understands. People have advice for days, but when that advice comes from someone who has actually walked your path, it lands differently. During my NICU journey, not once did my medical team tell me, “Your baby won’t make it.” That fear and that thought came entirely from me. And even though they kept reassuring me, “Preemies are strong, they’re fighters, they can make it,” I didn’t believe it. I thought they were just trying to make me feel better. But if that had come from another mother, someone who had lived what I was living, it would have made all the difference. I think that’s the gap between clinicians and parents: they need someone who understands both sides.

Now, I’m able to explain to a parent, “Hey, your baby has a PDA.” Because when they told me that my baby had a PDA, I thought, this is it, it’s over. But with the right explanation—that yes, it can be critical, but many preemies have it, and often with medication, it can resolve. I used to go from zero to one hundred, from “we’re okay” to “this is the end” in a second. I’ve seen how my story helps other parents. Clinicians talk about PDAs every day, it’s just part of the job for them. But when you hear it as a parent, your world turns upside down. That’s why I want to ensure parents really understand what’s happening. Yes, your baby may be in a tough situation, but I’ve been there. And if you see my son now, you’d never think he went through all that. That’s because I either had or made it my mission to have the right information.

It’s hard to find that information as a parent. Preemie Connect has given me access to insights that the average Google search won't uncover. I remember going to the Department of Health asking for stats on survival rates of premature babies in our country, and I was met with, “What do you want that information for?” But I needed to know—are we likely to survive? What does life look like in two, three, or four years? It’s sad that even with all the progress, there are still very few organizations doing this kind of work in my country. There are people who don’t’ know that babies born at 21 weeks can survive—I’ve met and seen those babies thrive with my own eyes. But systematic barriers make it so hard for the average parent to access that knowledge. That’s where we come in. We bridge the gap between the clinicians and the parents.

Shelly-Ann DakaraiSo can you share a little about what your organization is currently doing? You mentioned bridging the gap, education, and advocacy. What does Preemie Connect look like today?

Tasmin BotaWe’re still fighting the good fight of getting in-person support groups going. Nothing beats face-to-face interaction. Sure, I can be on WhatsApp all day sending messages, but there’s something powerful about putting a face to a name, hearing a voice, and sharing a story.

I’m still knocking on hospital doors, saying, “Hey, this is what we’re offering.” That part is still a struggle. But being part of global platforms has helped us reach more people. We run campaigns throughout the year to better educate parents.

Right now, for example, we’re entering the winter season here in South Africa, and RSV is a concern. I didn’t even know what RSV was during my baby’s first year, I just knew I didn’t want him to get sick. So I was extra cautious. No one told me about RSV, I found out later. That’s what we’re trying to change.

We’re also trying to raise funds to print pamphlets and go to local clinics. Because while we can find our parents in the NICU, once they’re discharged into the community, it becomes so much harder. In some areas, there may only be two or three preemie parents at a time. So the goal is to meet them where they go—clinics for vaccinations, for instance—and make sure they have access to the information they need.

Another issue is that many parents don’t realize they need support until later. You’re running on adrenaline. You’re just trying to get from one milestone to the next. It’s only when you finally pause that you realize, I have PTSD. I have anxiety. We’re trying to create a cushion. I don’t think we can eliminate that trauma, but we can at least help soften the blow. I believe every NICU parent has some form of PTSD, some worse than others. We want support to be easy to find. If someone searches “preemie support in South Africa,” I want Preemie Connect to be the first thing that comes up. And I want parents to know that the information we provide is evidence-based. I’m not just sharing my personal experience—I have access to what the World Health Organization says. We’ve done webinars with them, and that adds credibility. Parents know the information is coming from a trusted source.

Mbozu SipaloThank you for sharing your journey and what Preemie Connect is doing now. Just curious—since you’ve been saying “we” instead of “I,” what does your team look like today? How did you go from being one person with a vision to building a team and creating what Preemie Connect is today?

Tasmin BotaThat's an interesting question. There is a team, but when I say "team," I’m mainly referring to our board of directors. So, from an administrative standpoint, we do have support. But when it comes to the groundwork, our vision usually relies on me reaching out to my network—friends, former parents we’ve assisted—especially if there’s something specific we want to do. For example, if we want to host a World Prematurity Day event or hand out care packages, that’s where our resources come from. I’ve had some really difficult experiences when trying to bring people in. A lot of people have this misconception that we’re like the Bill and Melinda Gates Foundation or something—they think we’ve got millions rolling in and we’re going to be on CNN. But when they realize how hard it is—literally going from person to person, asking for help just to create the loveliness they see on social media—they tend to run away.

So I’ve had to keep things very close to me, and for now, I’ve kept it isolated just to preserve what we’re trying to do. But I believe that God will eventually provide the right people and the right channels. He’s carried us for the past eight years, and I don’t doubt that we’ll continue to grow in the direction He wants us to—with people who truly believe in and support our vision. Until then, we’ve been making it work the way we always have, and it’s been working for us.

Mbozu SipaloThank you for sharing that. It’s inspiring and really a testament to your resilience as the voice and vision behind Preemie Connect. Looking ahead, where do you want to see Preemie Connect in the next five years or so? First, considering what you have now, and then, if you had all the resources—what would the short-term and long-term visions look like?

Tasmin BotaTo be honest, I try not to plan too far ahead because God tends to laugh at our plans. So I don’t do the whole five- or ten-year projection. I’m really just focused on making it from here to the next step. For this year, if I could get just one in-person support group up and running, that would be a huge achievement. The goal is to find the right parent from that support group, train them, and empower them to continue running it. Then we can move on to the next hospital and repeat the process. That alone would be a huge win.

I don’t know what five or ten years looks like for Preemie Connect, honestly. I always have these wild ideas. For example, I started an online store that supplies preemie baby essentials. That’s also been a roller coaster. But again, I trust that God wouldn’t have placed it on my heart if it wasn’t part of His plan. I see all my ventures as my preemies—they take a little longer to grow, and they need extra TLC to become strong and fully developed. Right now, I’m taking it step by step. I’ve got a lot going on personally with my kids, and that’s a lot to manage. But I never want to lose the essence of what I’m doing with Preemie Connect.

As you said earlier, I seem resilient, but I probably quit three or four times a year. I’ll say, “I can’t do this anymore. It’s not worth it.” Just a month ago I was ready to quit and someone reached out and said, “I found you. I Googled you, read an article, and this is my situation…” That kind of moment gives me the fuel to keep going. It reminds me that I’m not doing this for the 99, I’m doing it for the one. If I can make a difference in one parent’s story, if I can help save one baby, or even just be there for a mother who’s lost her baby, then I’m fulfilling God’s calling.

Shelly-Ann DakaraiThank you again for sharing that and for your conviction. Like you said, every time you feel like giving up, something or someone reminds you why you’re on this mission. You mentioned earlier that, while some providers were great, other things could’ve been handled better. Since our audience includes both providers and parents, if you had a room full of clinicians who care for premature babies, what would you want them to know? Especially the blind spots that really matter to families?

Tasmin BotaOne thing that’s always stuck with me on this journey is the language clinicians use—it’s so important. For example, something that’s often said to preemie parents is, “Don’t worry, your baby will catch up by the age of two.” I clung to those words like my life depended on them. I kept thinking, “We just need to make it to two years old and everything will be fine.” But my child got to two, and everything still wasn’t okay.

We need to stop saying “catch up.” There is no “catching up” when your child is a preemie. They’re on their own unique path. Sometimes that path runs parallel to full-term peers, and sometimes it doesn’t come close. Even when your child is an adult, you need to remember: they were born prematurely. A baby may do well in infancy, but then in toddlerhood, something might seem off. Or they might breeze through toddler years, and then suddenly struggle in school. And you’re sitting there thinking, “What’s going on?” and you’ve forgotten they were born early. Even just a two-week difference in gestation can affect development. What happens in utero is important, and what happens outside the womb, especially in an incubator, also plays a major role.

That’s why I’ve been advocating for more research into life after discharge—what happens when they start school, or even as adults. Now we’re seeing adult preemies come forward, saying, “I’ve struggled with this my whole life, and doctors keep saying nothing’s wrong.” But no one is going back to ask, “Was this child born at 30 weeks? At 27 weeks?” When I took my son to a pediatrician and mentioned he was born at 28 weeks, the doctor looked at me like I was crazy. My son was three years old at the time, and the doctor said, “That’s got nothing to do with anything.” Sometimes, I just let those comments go, but other times I’ll say, “Let me reintroduce myself. This is what I do. I know what I’m talking about.” And, of course, their attitude changes—but it shouldn’t have to. One thing I always appreciated from our team was that they respected me as the parent. Even when I wasn’t bonding with my baby in that first week, I still knew him better than anyone. He recognized my voice when I walked into the NICU. He responded to my presence, even when I couldn’t touch him. So I want parents to know: Prematurity doesn’t end. You’re just running your own race. If more parents understood that, they wouldn’t second-guess themselves. They’d be better prepared.

Now, if I may dive into the second part of our journey—again, God put people in place to prepare me for what was to come. I didn’t even know the term “neurodivergent” until much later. But God brought people with cerebral palsy into my life, and while I was trying to support them with the little knowledge I had, I didn’t realize I was going to be calling them one day asking, “My son’s been diagnosed with mild hypertonic cerebral palsy—what do I do now?” I think I was in denial for a while. The reality hit me when someone asked if I had started looking at special needs schools for him. From the outside, my son doesn’t look like there’s anything wrong. A parent with a special needs child might pick it up immediately. A trained teacher would too. But the average person won’t notice. I haven’t even met another child with his exact condition. His is mild, so it doesn’t affect him in the same way as someone with a more severe form. It’s a complicated road to navigate, especially without the right support. Some people even question if I’m making it up or looking for sympathy. But my husband and I have just kept our heads down and focused on what matters. Honestly, I was relieved when the diagnosis came. We finally had a name. I had suspected cerebral palsy, but it's such a broad spectrum. Once we had clarity, we could start putting the right resources in place.

We’re fortunate—my son will grow up to live an independent, full life. He has delays and may need more help than most kids, but he’s thriving. And it’s only because I had those resources and that knowledge beforehand. Not everyone is that lucky. Not everyone has access. In fact, we were told that at six years old, we’d aged out of the public health system. Suddenly, every physical therapy session, every occupational therapy visit, every speech therapy appointment—we had to pay for it all. On top of that, we had to fund a special needs school, which is incredibly expensive. There were all these unplanned expenses. I had to quit my job during those first two years because my employer had no sympathy for our situation. We had to decide—do we keep the money or do we prioritize our child’s health and my mental well-being? Or do we cut back on our lifestyle to help our child survive and thrive?

These are things many parents don’t anticipate. No one plans to have a preemie. And most don’t realize just how long the impact lasts. One of my hopes is that we can eventually get funding to help parents with basic needs—like transportation to the hospital. Something as simple as that can become a financial chokehold. If parents can’t get to the hospital, they can’t provide breast milk, which is crucial for the baby’s survival. It’s all these little things that add up. And not everyone has the support system they so desperately need.

Shelly-Ann DakaraiYes, you touched on the bigger systemic issues. The NICU journey is intense—it's important, and you need those resources. But there are so many things that go into it. Like you said, the parents who can’t make it and are then seen as not invested in their child or as not being good parents—but people have no idea they’re taking care of three other kids at home. They don’t have anyone to watch them, and they can’t afford to come. Then there’s getting up every three hours to pump milk and all the many things that happen. And then the going home part—like you said, that’s a much longer phase of the journey. The discharge and navigating life after NICU can be more complex than the NICU itself. From the provider side, you celebrate that the baby is going home, without always realizing what that actually looks like for the family. So thank you for highlighting all those layers of the system.

Tasmin BotaI'm so sorry. Yes, when you talk about the going home part—what we’re seeing is more deaths post-discharge than in the unit. And it's because we’re discharging babies into communities that know nothing about prematurity. That’s why we’re trying so hard to reach these caregivers. In Africa, a lot of times, children don’t even stay with their parents. They’re left with grandparents who may know nothing about prematurity. It’s so important to ensure that parents are properly equipped so that when their baby goes home, they can give the best possible care. I don’t want to say we’re failing them, but we are failing them.

You’ll come and find, two or three weeks later, that the same baby is coming back—maybe with pneumonia or some other condition—because, number one, we don’t know what the living conditions are at home. Some places don’t even have running water. We had an electricity crisis—thank God it’s been a year without load-shedding issues in South Africa—but it used to be a huge problem, where you'd randomly lose electricity for hours. All of these things affect quality of life and a parent’s ability to provide for their children. Who wants to choose between working to support their child and physically being present to care for them?

Mbozu SipaloThank you for sharing that insight. It really shows how many layers there are—so much to consider. Support is key. I especially appreciate what you said about follow-up systems: the lack of them and the need to strengthen them in developing contexts, especially for preemies. We get very excited to send these babies home, but what does life look like for them in the short term? What about the long term? What does it look like for the parents? Those are really important questions.

Linking to what we've been discussing—if you could think of the top three health policies that should be at the forefront for policymakers when it comes to preemie care, parents, or clinicians—what would they be? We’re wrapping up, but it would be great to end on a note of hope and action.

Tasmin BotaI must say, when it comes to policy, South Africa has some of the best in the world. During COVID, the maternal and newborn policy was updated, and I was fortunate to be part of that process. I was amazed at how strong the policies were. But on the ground, they’re just not being implemented. We can have 50-page documents saying you must do A, B, C, and D—but it's just not happening. Of course, there are many layers to why that is.

Thinking about preemie parents specifically, one thing on my mind is maternity leave. I see many of my international counterparts, especially in first-world countries, pushing for changes in maternity leave. When my son was in the hospital for two months, that was already half of my four-month maternity leave gone. So I only had two months with him at home—and that was just unimaginable. Plus, those four months are unpaid. How was I supposed to pay for transport to get to a hospital across town? Sometimes babies are transferred between facilities based on the level of care they need. Where are parents supposed to get the money for that? On top of that, you often have to fight to receive unemployment. Many mothers of full-term babies take the four months unpaid, and still haven’t received their unemployment by the time they return to work.

It weighs so heavily on parents. Not just preemie parents—but everyone. How great would it be not to have to worry about finances? You’re already worrying if your baby is going to make it from day to day. Sometimes it felt like we were surviving minute to minute—"okay, we’re good... oh no, he stopped breathing...oh no they have to resuscitate.” Sometimes, moms in the NICU would gather money together so that one mother could afford to come see her critically ill baby. That’s how desperate the situation can get.

I also love the new IKMC policy—the global position paper and its implementation strategies are beautiful. I was part of that working group. But again, no one is implementing them, even though the World Health Organization says the mother-baby dyad needs to be together. Yes, we’re ahead in that we have kangaroo mother care (KMC) units in our hospitals—that's a good step. But is it enough? Because you still have to go through that entire rollercoaster before you get to the KMC stage. You still need to be readmitted and go through that journey. We need to redesign our hospitals to make space for the pair—for both mom and baby. No one seems to realize that doing so would shorten hospital stays and give parents the confidence they need to care for their babies at home.

My hope is that prematurity is placed at the forefront because we know it’s the leading cause of newborn deaths and deaths of children under five. And it’s mostly due to socioeconomic barriers. If parents had resources and education—no one wants their child to die. No one would intentionally do something to cause that. But when you’re struggling just to survive, how are you supposed to give your child what they need? And you’ve also gone through trauma yourself—your birth didn’t go as expected. No one asks if you’re okay. Does anyone ask, "Do you need help?" or "Can I get something for you?" Sometimes you don’t want to talk. You’re tired of explaining things. I was lucky—I had a good friend who just stepped up. They knew what we needed before we did. I had a car accident, and they said, “Here’s my car. Take it for as long as you need it.” They came to our house and cooked for us. Because who wants to come home and cook after spending ten hours in the hospital? Especially when there are still other children at home.

As much as we want to make sure the babies are okay, the age-old saying goes: “If mom is okay, baby will be okay.” Or she’ll make damn sure she does everything in her power to make that happen. We need to look at the bigger picture—the long-term picture. In the hospital, you’ve got support. But the minute you leave, no one calls. If you miss a follow-up appointment, no one checks in to ask why. That’s something that needs to change. We can’t just let these families fall through the cracks. The next time we see that baby shouldn't be in a medical emergency.

So yes—let’s implement those great policies and make sure they’re actually happening on the ground. Let’s ensure that parents are equipped and supported. For me, those are the top two priorities.

Shelly-Ann DakaraiThanks so much, Tasmin, for such an enlightening and inspiring conversation. We hope this message reaches the people who need to hear it. If someone wants to support Preemie Connect or get involved, how can they reach out?

Tasmin BotaThe easiest way is to follow us on social media. You can DM us, we’re on all the platforms. Just search for @Preemie-Connect, and you’ll find us. We’d love to connect with you and hear your stories. We understand that not all babies get to go home, and some go home but don’t get to stay. That’s why our support groups have grown. We now have four different online groups, not just for preemie parents. We support parents who have lost their babies, and parents of children with special needs as well. So please reach out—we’d love to support you in any way you need.

Mbozu SipaloThank you so much, Tasmin, for sharing your story and giving us deeper insight into what it means to be a preemie parent and advocate. What you’re doing is incredible, and I hope your plans to launch in-hospital support groups come to fruition soon. Looking forward to hearing a new chapter in the story of Preemie Connect. So, catch us next time on the podcast. Thank you for listening and being here with us today.