#318 - đ Navigating the NICU: A Mother's Journey (ft. Tasmin Bota)
- Mickael Guigui
- 6 days ago
- 42 min read
Hello friends đ
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:
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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
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The transcript of today's episode can be found below đ
Mbozu Sipalo (00:01.019)
Hello friends, welcome to yet another episode of the Global Neonatal Podcast. Chelleanne, how are you doing?
Shelly-Ann Dakarai (00:08.258)
I'm good, good, always excited to have another interview and kind of catch up all at once.
Mbozu Sipalo (00:14.953)
Yes, super excited for today's guest. So let me introduce our listeners to Tasmin Bota. She is a founder and executive director of Primi Connect. She's a mom to a Primi baby who was born at 28 weeks gestation, weighing in at 1.08 kilograms due to placenta abruption. He is now eight years old. JCN is his name.
She started Primi Connect because there was no support groups at the time, specifically South African based, who provided support to parents with premature babies. Primi Connect is passionate about providing emotional support for parents, as well as evidence-based resources to ensure Primi babies survive and thrive. It is also a proud parent representative for GLANS, which is the Global Alliance for Newborn Care.
Tasmin, hello and welcome to our podcast.
Tasmin Bota - Preemie Connect (01:15.948)
Thank you so much for having me on here.
Mbozu Sipalo (01:24.017)
Super glad to have you and for us to just share your story, your amazing stories. So just to get into our chat today, before founding Primi Connect, could you just tell us a bit about yourself, what your life was like before Primi Connect and what it looked like before this journey began and also your birth story.
Tasmin Bota - Preemie Connect (01:48.578)
think life was pretty easy and laid back before I had my preemie. I did have one child at the time, so I was just juggling motherhood and work. And we were very, very excited to have our second child. It took a long time for us to actually conceive the second time, so we were super, super excited. And...
Yeah, like life, everything was fine until it wasn't fine anymore. I think, yeah, that's the easiest way to describe it. And my birth story. So a part of my story that I tend not to talk about, but I have been doing it a bit more often now is that six weeks prior to me giving birth to my preemie, I was involved in a motor vehicle accident. And I still remember I was 21 weeks at the time.
The doctors actually had no compassion that I was pregnant at the time. All they said to me was, if your baby comes now, there's nothing that we can do. So imagine experiencing, you know, your life literally flashing before your eyes and then being told that should something happen to your baby, they can't help you. And I remember, you know, when those words came out, I was like, God, please, you know, just keep him in as long as you possibly can.
And that turned out to be six extra weeks, which in South Africa, the viable geostation is 28 weeks. And there were no signs. mean, obviously I had some scarring, some bruising from the motor vehicle accident, but came out, you know, pretty okay considering everything. And I think for me, it feels like I just finally was able, when I got to that six week mark, I was like, okay, we okay, we out of the woods, we in the clear. And it felt like I released this big sigh.
And next minute, know, out of nowhere, my placenta erupted. And it's so ironic, you know, just how I talk a lot about my faith journey on this as well. I was on the opposite side of town when my placenta erupted. And so I was nowhere near the hospital that I was supposed to go to. But, you know, God works in such amazing ways that he made it that I arrived at the right hospital.
Tasmin Bota - Preemie Connect (04:07.726)
In Johannesburg, we have one hospital that's dedicated to mother and child care. And that was the closest hospital to where I was that day. And so that's where I went. And the funny thing is by the time I got to the hospital, like the bleeding had subsided quite a bit and I was feeling okay. And I'm like, you know what? No, we're gonna be fine. In fact, I was very...
ignorant to the situation about how serious it really was but I kind of thought like they might just put a stitch in and send me on my way you know to keep my baby baking but they ended up booking me in for observation and on the Sunday evening when the doctors were doing their final rounds they're like everything's looking good you're looking good tomorrow morning you're gonna go home so I was like yeah you know I'm taking this as a little vacay away from my little kid and yeah feet up and
That Monday morning, I was woken up by my placenta abrusting for the second time. And all of a sudden, everybody went into complete panic mode. I barely had enough time to pick up the phone to tell my husband that, listen here, they're this baby out right now. I literally had that 10 seconds just to say that to him. And off we went. There was so much going on as well. And you know, it's so difficult when you're in such a...
high pressure situation and you're expected to give answers to the doctors and you know, while all of this is going on, while you're thinking of, my God, is my child gonna be okay? Because at that time, I really, really knew very little about prematurity. And so in my mind, I thought, you know what, it's over. Like that is what I thought. And so they had to put me out when they delivered my baby. So I did not see him when he was born. And when I finally woke up from the surgery,
first thing I said to the nurse was is my baby alive and they were like he came out crying this is how much he weighs they're like one one eight I think okay what can you know babies are normally 2.5 what's another kilo you know it's not that big of a difference and I was not prepared at all for what a premature baby looked like
Tasmin Bota - Preemie Connect (06:19.362)
So it took about nine hours. There were a lot of stuff happening in the background before I could actually see my baby. But my husband had sent me a picture of him and in the picture he was wrapped up in a blanket. He just had the nasal cannula on. He looked like a normal baby. But by the time I got to the NICU to see my baby, he was put onto a ventilator and he was skin and bones.
And no one told me that this is what a premature baby will look like. So I had no idea. And seeing him like that for the first time, it sent me into complete panic mode. I'm not even going to lie. I was just, when you hear the words life support or ventilator, you know, at that time I knew that a ventilator is life support. like, there's no way. Look how small he is.
He was surrounded by, there was more tubes and wires and nappy than there was actual baby. And I'm like, there's just no way. There is just no way. And that's how our birth story wins.
Shelly-Ann Dakarai (07:26.904)
Thank you for sharing that with us. That must have been a very traumatic experience and we appreciate you sharing because I cannot imagine how hard it must be to kind of relive those days. So thanks for sharing that. I know you talked about seeing him for the first time and how you were surprised. Can you take us a little bit through, if you're able to, like from those first few moments to those first few days and what it looked like?
getting, and I don't want to use the word used to, but kind of seeing that this was going to be your new place to be for an extended period of time.
Tasmin Bota - Preemie Connect (08:07.978)
So like I said, I was completely taken aback and in my mind my baby was not going to make it. So I was actually trying to do everything to not bond with this baby, to not get too close to him because I just don't know how I was going to emotionally cope if I was so connected to him and he would pass away. And you know, again, God comes into play when I think about the husband that he provided me. Like my husband's faith did not waver one inch.
And during that time, he had enough faith for the three of us. And for that first week, I was in hospital for four days. And at that time, a paternity leave was only three days, which meant that my husband was supposed to go back to work. I cried. I cried tears. And I'm like, please don't go. Please don't go. I can't go and see that baby by myself. I just cannot do it.
And I wouldn't, would not step, for that first week, I would not step into the NICU unless my husband was with me. I tried it one evening when I went to go and deliver breast milk while I was still in the ward. And the nurse said to me, she's like, do you wanna come in? Do you wanna see your baby? And I literally burst into tears right there. And then I was like, no, no, thank you. Here's the milk. And I continued back on my way. And it was only when he came off the vent, which was a week after he was born, he came off the vent and I was like, you know what?
He's fighting. He is fighting. Let me try and fight alongside him as well. And it wasn't easy because firstly, after that week is now when all this information about premature, he starts coming in drips and drabs. And everyone was saying, know, primaries normally go home close to their due date. So now I'm thinking, my gosh, we're going to be in here for the next three months. This hospital is on the
other side of town and I'm going to have to travel up and down every day. I no longer have a vehicle to get to hospital. was just, everything about the situation was overwhelming. And then the sad thing is it's not only you going through your situation in that NICU. You are witnessing everybody else's situation at the same time. And so your emotions are on a high for yourself.
Tasmin Bota - Preemie Connect (10:28.654)
but they're on a high for the other babies as well. And you get so used to every day seeing all those babies every day that you're also just so invested in their journeys and how they're doing and how they are making it. And for me, one of the things that completely threw me off was one day when I walked into the NICU and it's so funny, my baby's monitor faced the door, the entrance of the NICU.
So every day when I walked in, the first thing I would look at is the monitor to see if the monitor is still on. Then I would know, okay, my baby's still alive. And one day I walked in, I'm greeting everybody, about to go to my baby's incubator and I look and I see a baby wrapped in a blanket. Now, normally they're not wrapped in anything unless some plastic, but other than that, there's nothing. And I was like, that's weird, but carry it on, because I wanna see my baby.
and not realizing that there was a baby that had passed away. I only realized when the family walked in to the unit and that sent me completely over the edge. Like I even said to the team, I'm like, you should have warned me. You shouldn't have allowed me to come this far. You know, you should have asked me to wait outside, but guess what? It becomes the norm in the NICU. It's so horrible to say, but it becomes the norm in the NICU. Yeah.
Mbozu Sipalo (11:56.911)
Yeah, I can only picture that just that whole scene of being a mother in a Nikkyu and going in and wondering like, is this my baby? and where is my baby? yeah. Thank you for sharing that. And just to explore that further, you mentioned that you asked the staff in the Nikkyu, like, why didn't you tell me? Why didn't you alert me?
What kind of support systems were in place for you as a preemie mom at the hospital? Or what have you done as preemie connect founder in that space as someone who's experienced it? But yeah, it be nice to just have like, then and now sort of approach as you respond to the question, because it's definitely something that is a growing space in developing context, just caring about
the emotional well-being of patients and their babies.
Tasmin Bota - Preemie Connect (12:59.96)
That's a great question. You know, it's so complicated. So when I was in the NICU, there was no emotional support provided due to resources. That's the bottom line of it. So only very terminally ill children, their parents would get support. And I think it was more along the lines of helping them to cope with how the situation was going to end.
It was a question that I asked because I was like, I couldn't believe that like nobody would give you support. The nurses tried their best. The doctors tried their best. Like, I think I vented to all of them. I was the mom that was asking all these questions and I needed to understand everything that was going on all the time. And that is one of the reasons why Premier Connect was started, because I saw this huge, huge gap. And I mean,
They provided as much support as they could with what they had. A lot of the times the nurses are going above and beyond the scope of their job. Like in that instance of that morning when I walked in, I normally came in just when they had finished doing so they would wash the babies and get them ready for the morning. And that's the time that I walked in. So I don't think anyone was even thinking, oh my gosh, we need to stop the mother until I got there. And then I was in complete shock.
So I don't blame them because I understand that they're dealing with a lot. have to do the job that they're employed to. And then they've got to be your psychiatrist, psychologist, and they're going to be your educator because you don't understand a single thing that's going on. So now they're trying to explain it in a way that you understand. So I never looked at it as like, you guys have failed me. I never ever looked at it like that, but I did realize that the system was failing us. And when I got discharged, I mean, I had
I want to say the best support that could possibly be provided while we were in the hospital. For me, it was the post discharge, which was the part that I couldn't understand. I'm like, how can these people trust me to go and raise this very fragile baby on my own? It was like one day I'm in the hospital and literally I got discharged like I think a day or two sooner than expected.
Tasmin Bota - Preemie Connect (15:25.878)
And I was like so shocked when they're like, okay, you're going home. And I was running around. Like, I think I found my husband a hundred times. You better come, you better come, you better come. Cause I thought they were going to change their mind and be like, no, we're joking. Your baby has to stay. But when I left that hospital for what I thought at that time was the last time, I was like, my gosh, how can they leave me with this person? Like, am I fit enough to take care of him?
And so that's when I went on this rabbit hole of trying to find support because I had questions I had so many questions every day I had a new question like why is my baby breathing like that? I never used to hear those sounds when we're in the hospital But obviously there's so many sounds going on that you don't notice the grunting So what's the grunting about and there were so many things and I had during our time formed a bond with a few of the moms there
And so when we got discharged, I started this WhatsApp group. And it was really cool in the beginning because when we were having our 2 a.m. feeds, we were busy messaging each other and we could ask each other questions. But of course, our knowledge was very limited. And I thought there's got to be something more. There has to be more. There has to be someone who can provide actual evidence based information. And at that time, I honestly could not find any ones. And I wanted specifically South African based because, you know, we just have a
diversity of cultures here, that you want someone that is able to relate to how you are parenting and how you are raising your children. And I couldn't. And eventually I was so frustrated that I was like, if I'm searching for this, there's gotta be other moms that are searching for it as well. And that's how Primi Connect came to be.
Shelly-Ann Dakarai (17:12.078)
So I feel like this is a good spot to talk a little bit more about PreMe Connect and talk a little bit about, you said, how it got to be and kind of what it is that the organization is able to do now and how does it help families.
Tasmin Bota - Preemie Connect (17:28.398)
So Primi Konek started out as a support group and the idea was to eventually have a support group, a physical support group in every NICU across the country. Because the truth of it is that when you're in that journey of being in the hospital, that is when you are your most vulnerable. That is when we need to equip our parents for life.
after the hospital, because honestly, as up and down as the hospital is, there's people there that know what they are doing. But like I said, I was discharged with this baby that I didn't know what to do with. So the dream was to make sure that we provide our parents with a safe space where they can express themselves freely without the fear of being judged by someone that they consider superior to them, to give them the confidence that they need to ask the questions that they need to ask.
because a lot of the times we are scared. I was also at times scared to ask simple questions because like, why are you doing that? Like, why are you pricking my baby every one hour on the hill? You you're scared to ask those questions. So to build up my parents' confidence and Premier Connect has taken on a life of its own. And I always say that Premier Connect was God's vision. It wasn't my vision because I never ever planned to be any type of registered organization. I really didn't.
And so as much as my heart still belongs to the support group, the support group has not grown in the way that I've wanted it to grow. Due to all the red tape that comes with having to enter facilities. One thing that COVID did for us was that it opened up everyone's eyes to how important mental health support is. So what I've come to realize is that a lot of facilities have now put in place their own in-house
systems to provide support to parents. Not all of them. Some of them have, some still don't. But our support group still exists on the online space. So we still have our moms on the WhatsApp groups. And we then became, when I went on my search for support, I literally went on a trip around the world. I started with the only organization I knew of, which was the March of Dimes at that time.
Tasmin Bota - Preemie Connect (19:57.42)
And I reached out to them, I'm like, hey, this is what I'm looking for. And they're like, no, we don't know of anything. And that's when they transferred me to EFCNI, which is actually now GFCNI, we have gone global. It's the global foundation for the care of newborn infants. And they were like, listen, nobody exists in South Africa. Here's a lady that is in Africa, but not South Africa. Maybe she can point you in the right direction. And, you know, after having meetings and stuff, was like, no, like,
Obviously I'm looking for a unicorn. And so that's when we did the whole legal part of it and became part of what you're referring to as GLONS, which then opened up a whole world of possibilities that I didn't even know was there. Like I got to share my journey on a global scale, which was with the Survive and Thrive Report back then. I think that was the 2019 one.
that we did and then I was like, hey, there's so much more that I can do than just the support group. And I must be honest, know, the underground work is a lot for you as the person that's running the organization, for your mental health, because yeah, I think I'm a big empath. And so it's been very hard to navigate. Sometimes the mommies only need you for that little while, for that first six months or that first 12 months of their journey. And then
you know, they disappear. And something that I've realized with my son's journey, because Primi Connect has grown alongside him, is that, yes, I prematurity ended when we left the NICU. Like that day when I walked out with my child, was like, peace, I'm not seeing you guys again. And yet I got discharged with the letter that said, you need to come back on such and such a date. So it's like, okay, they just want to make sure the baby's growing. No problem. We go back for follow up.
No, no, you have to come back at such and such a day. And then they just kept coming and coming. And that was another thing that no one prepared me for that. No, ma'am, you'll be coming for many, many, follow up appointments because there are many different things that we have to make sure that your child is reaching. And my son was doing amazingly until we got to the 10 month mark. And we were having a terrible time transitioning to normal table foods, which I thought was like a simple thing.
Tasmin Bota - Preemie Connect (22:21.868)
And because everyone kept saying, know, premiers have their two birth dates. You measured them on this one. I kept saying, you know, he's got the three month window, you know? And then they were like, OK, no, we're going to refer you to physical therapy, occupational therapy, speech therapy. And I was like, I didn't understand what was the need for all these things. And I think that's another place where maybe the clinicians dropped the ball, is that no one sat me down and said, listen.
You know, this is what the life of a preemie looks like. Okay, not all of them go on this path, but a lot of them will have developmental delays. I would have been mentally prepared, okay, I'm gonna spend the next two, three years going up and down to hospital. In our case, it didn't stop. It's been eight years. I did take a break. I obviously had a third child, which ended up being a high-risk pregnancy. And I was like, at that time I was tapped out.
mentally and physically like I was over all those appointments I said to my husband I'm like, you know what I could see something wasn't quite a hundred percent with my child I'm like I don't have the mental capacity to focus on both situations at this point in time So let me focus on baking this baby to term the goal was 37 weeks I'm like, let's just get to 37 weeks and if you know what we were concerned about hadn't corrected itself by then
we would look at that. And so that's what we did. So we took a little break for that nine months. And after that, we had to face the reality that something wasn't quite right with my son. And that's when we went on our new journey. At that time, because we were in the public health system, I was like, you know, like maybe we've gotten lost in the system. Like I felt like we weren't.
Because you get used to, I feel like you, you know, I had build a rapport with my physical therapist. So like we got too comfortable with each other is what I'd like to say. And I felt like I wasn't being seen. So I'm like, you know what, let me try a different approach. And I took my son to a pediatrician. And when I came out of that pediatrician, I left with an A4 page of everything that was wrong with my child. And I was like, my gosh, I have failed my child.
Tasmin Bota - Preemie Connect (24:35.522)
With all the information that I have access to, I have failed my child. And I cried, I felt sorry for myself for a moment. And then I was like, okay, it's time to put on our big girl panties and do what we need to do and solve whatever the problem is. And so that started our second phase of our journey.
Shelly-Ann Dakarai (25:00.076)
Thanks for sharing that. So before we touch on the second phase, if you're willing to share, so you started PreMe Connect while caring for two children at that time. Some people go through challenges and they're able to get through with their support and some people decide to make a change. Why do you think you felt like 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? Because it's an inspiring one, because dealing with everything that you've had to deal with, it could be easy, and it would have been probably easier, to just focus on the four walls. But you made it a mission to try to help others who were in similar situations. What brought that motivation?
Tasmin Bota - Preemie Connect (25:54.702)
So like I said earlier, Premier Connect has been God's driving force behind it. When you're sitting in the NICU, I was there for nine to 10 hours per day, every day for 54 days. You literally, the only thing that you have to do is have a deep conversation with your maker. And that's what I did. I was angry. I was so angry at God. I'm like, what did I ever do in this lifetime to deserve this?
for days. That's the conversation I was having with him. Like, how could you, how dare you do this to me? Like, how dare you? I told God, I was fortunate enough for him to reveal why he did what he did. It's not a part of the story I like to share too much. So I'll keep the reason why, but he made it evidently clear to me why I was called to be in this situation and why it was my duty to go forth and make it better for other people. But you know, sometimes just
a listening ear and someone who understands because people have advice for days but it's advice coming from someone who has walked the path that you have walked, that you are walking now that makes all the difference. You can have, like I had my my NICU team not one time did they say to me your baby's not gonna make it. That was all me. That was all me saying that.
And they kept telling me, primis are strong, primis are fighters, primis can make it. And I'm like looking at these people and like, that's not what I want to hear. But had that come from another mother who had been through what I had been through, it would have made the world of difference. I can't exactly explain why. I think we feel sometimes maybe people in power just say things to say them.
so that I could stop being this nervous wreck and stop crying every two minutes and stop asking why are his stats desaturating every two minutes. I thought they were just saying it to make me feel better. I didn't know that they were saying it because it was the truth at that time. And so I feel like that is the gap that's missing between the clinicians and the parents. They need someone who understands both perspectives.
Tasmin Bota - Preemie Connect (28:13.858)
So now I can explain to you, hey, listen, your baby has a PDA because when they told me that my baby had a PDA, was like, okay, this is it. This is it, it's over for us. But had someone been able to explain it to me in a way that, yes, it sounds very critical and yes, sometimes it can be very critical. But listen, a lot of premiums have this and by administering medication and my clothes on it, no, I went from.
zero to a hundred really quick going from we're okay to my gosh it's over very quick and I think it helps I've seen that it helps that when I tell my story to other parents when they have questions I mean we think PDA you know the clinicians talk about PDAs all day every day they're so used to it like it's nothing for them but when you hear it as a parent your whole world gets turned upside down and so that's why I
I want to make sure that my parents, like, they understand, like, yes, this is the situation, but hey, I've been there and hey, look at us now. Like, if you look at my son, you wouldn't think that there's anything wrong with him. You wouldn't think that he's been through this rollercoaster of up and down and that he's still experiencing it right now because I was equipped with information or I made it, I made it my mission to be equipped with the information.
It's very hard to get to find information as a parent. And that's why having Primi Connect on my site opened up doors that the average person isn't privy to. So I have access to information that a Google search is not going to give to you. I remember when I approached our Department of Health and I was like, hey, I'm looking for stats on survival rates of premature babies in our country. I was was met with what do you want to do with that information? What?
do with that information you know but I needed for myself to know hey you know are we on the surviving side of life or aren't we what's life gonna look like for us in two three four years time and it's so sad that as much progress as we are making like in my country there's still not very many organizations that do this there's still people who will never know
Tasmin Bota - Preemie Connect (30:33.076)
if the baby is born at 21 weeks. 21, I have met and seen 21 weakers with my own eyes that have made it and are surviving and are thriving. And so there are just so many systematic barriers in place that make it impossible for the average mom or dad to get information. And that's where we come. We bridge the gap between the clinicians and the parents.
Shelly-Ann Dakarai (30:59.608)
So can you share a little bit about what your organization's currently doing? You were talking about bridging the gap education-wise, talking about data. know you're also doing some advocacy work. So can you tell us a little bit about what PrimiConnect is doing now?
Tasmin Bota - Preemie Connect (31:15.192)
So we're still fighting the good fight of trying to get the in-person support groups going. Nothing works better than having that face-to-face interaction. I can be on WhatsApp all day long, sending messages on the group, that face to, putting a face to the name, hearing a voice, explaining the story or the situation.
it makes the world of difference. So I'm still fighting that fight. I am still literally knocking on hospitals doors saying, hey, this is what we're offering. So we're still on the struggle bus there. But I feel like being a part of a global platform has given us a better reach. And so we are able to, we run campaigns throughout the year.
to try and better educate our parents. Like for example, we are going into the winter season now here in South Africa, RSV. My parents don't know what RSV is. I didn't know what RSV was. I went the whole first year. I just knew I didn't want my baby to get sick. And so I was just extra, extra, I just didn't allow sick people around my children, but nobody told me there was something called RSV. That was information that I came by after the fact.
So, you know, that's what we do. We provide parents with information and we are trying to get financial support so that we are able to print pamphlets and go to our local clinics. Because the other problem that I see is that we can find our parents in the NICU, which is why I'm pressing so hard for us to get into the NICU so that when they are discharged, they are equipped, they are fully equipped.
Once they are discharged into the community, it's so much harder to get access to the parents. So you'll find that, you know, in a specific area, there's only two or three parents with preemie babies at that time. But the goal is, you know, to go to our local clinics because all the babies have to go to clinics to have their vaccination and make sure that they have access to the information. But also a lot of times, which was even in my case, was that preemie parents don't realize that they needed the support at that time.
Tasmin Bota - Preemie Connect (33:30.754)
because you're running on pure adrenaline. So all you're trying to do is make it through. You're making it from the one milestone to the next milestone, to the next milestone. And by the time you actually take a step back, that's when you're realizing, my gosh, I've got PTSD. I'm suffering from anxiety. So we're trying to avoid or at least provide a cushion. I don't think you can avoid it. I actually believe that every parent that goes through the NICU will have some form of PTSD, some just worse than others.
So we wanna provide that cushion that parents need. But we also want it to be easy by just, if you search for preemie support in South Africa, we wanna be that first organization that comes up. And I know that I'm providing evidence-based research. So I'm not just talking about my own personal experience, but I have access to what the World Health Organization is saying. I'm doing work with the World Health Organization, whether it's, you know, we did...
a live webinar a couple of weeks ago, and not all parents have access to that. And I think that just gives credibility as well. So people don't just think I am just talking about my personal experience. They know that when the information is coming, it's coming from a credible source.
Mbozu Sipalo (34:47.216)
Thank you for sharing your journey and what PrimiConnect is doing currently. Just curious, I know the vision of PrimiConnect was started through you, but what does your team look like now? Cause you haven't been saying I, you've been saying we, which is good, but just curious how your team structure looks like and also how you...
how that came about, how you got to work with others and have Primi Connect be what it is today.
Tasmin Bota - Preemie Connect (35:23.49)
That's an interesting question. There's a team, but when I say team, I do have a board of directors. So when it comes from an administrative point of view, we do have that support. But when it comes to the underground work, our vision normally consists of me reaching out to my network, reaching out to my friends.
reaching out to past parents that we've assisted, if there's something particular that we want to do, like for example, we want to do a World Prematurity Day event, we want to hand out some care packages, that's where the resources come from. I have had some very, very bad experiences with bringing people in. A lot of people, I don't know, they have this...
misconception that we are, I don't know, do they think are we the Bill and Melinda Gates foundation or something when they look at us? But they think that we have these millions rolling in and it's going to be lights, camera, action, I don't know, we're going to be on CNN or something like that. And when they get to see just how hard it is, literally going begging from person to person to in order to put all this loveliness that you see on social media together.
people tend to run away. And so I've had to keep it very close to me and for the time being isolated just to preserve what it is that we are trying to do. And I do not believe that God will eventually provide the correct people and provide the correct channels. And he's carried us for the past eight years. So I do not doubt that we will continue to grow in the direction that he wants us to grow.
with the people who believe and truly support the vision that we have. But until then, we've been making it work the way it has been for the past eight years, so it's working for us.
Mbozu Sipalo (37:26.416)
And as a segue, thank you for sharing that, because that's interesting and a testament to your resilience as well as the voice and vision behind PrimiConnect. What do you see or where would you want to see PrimiConnect go in the next five years or so? if say, firstly, with what you have now and what you know now, and say if you had all the resources, like what is like the
short term versus long term versus this is what I really want to see with Primi Connect.
Tasmin Bota - Preemie Connect (38:05.254)
be honest I try very much not to overly plan because God tends to laugh in your face when you try to make all these plans and he's got another plan for you. So I don't do the whole five year, ten year. I'm actually I'm trying to make it from here to here and so like for this year honestly if I could get one in-person support group up and running that would be a great achievement for us.
And the goal is to train, find the perfect candidate, the perfect parent out of the support group and train them up in order to continue that support group so that we can move on to the next hospital where we can now start the same process again. So if I could do that in this here, that would be a great, great, great achievement for us.
I don't know what five to 10 years looks like for Primi Connect. I'm not gonna lie. I always have all these crazy, crazy ideas. Like along the way I've started a online store that supplies Primi Baby essentials. And that has also been a complete roller coaster ride. But again, I trust that God wouldn't have put that on my heart if it was not something that he wanted me to do.
So I always look at my ventures as my preemie. So, you know, sometimes they take a little bit longer to grow and, you know, they need a little bit extra TLC in order to become this great, amazing, fully grown adult. But for now, I'm just taking it step by step. Like I have a lot going on personally with my kids. So managing that is also a lot, but I never want to lose the essence of what I'm trying to do with Preemie Connect.
As you were saying earlier that I've got so much resilience, I think I quit three or four times a year. I'm like, I can't do this anymore. Like it's not worth it. And I promise you, I think like even a month ago, I was singing that song and somebody reached out to me and they're like, I found you. I went Googling and you did an article and I came across your name and this is the situation.
Tasmin Bota - Preemie Connect (40:19.022)
And then you know it's just that fuel that you need again to get going. And you're like, no, the reason why you're doing it's not for the 99, it's for the one. So if I can make a difference in one parent's story, if I can save one baby, and we can't save them all, if I can be that support that a mom needs who has lost her baby, then I'm doing what God has called me to do.
Shelly-Ann Dakarai (40:47.598)
Yeah, thanks again for sharing that and that conviction. Like you said, just, every time you are getting ready to quit, something comes up and kind of reminds you of why you're on this mission and why it matters. We covered a little bit earlier, you had talked a little bit about, you know, in some situations, the providers and the team were good about certain things, but then, you know, other things you felt like could have been handled a little bit differently. What, you know, our audience are probably a mix of
providers taking care of babies and others might be parents, things like that. But if you were talking to a bunch of providers who are taking care of premature babies, what are some of the things that you would like to share? Some of them may be the blind spots that we might not see that can really make a difference for families.
Tasmin Bota - Preemie Connect (41:35.352)
think on this journey, the one thing that has permanently stuck out is the language that our clinicians use. And the language is so important. Like for example, something that is always told to pre-me 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 it. I'm like, by the time, we just need to make it to two years old and everything is gonna be okay.
And my kid got to two years old and still everything was not okay. So the language is so, so, important. I want my parents to be aware of the fact that there is no recovering or catching up when your child is a preemie. They are on this particular path that they have chosen to be on and that's their path. Sometimes it's gonna run parallel to their full term.
counterparts and sometimes it's not gonna come anywhere close to it. And you have to keep in the back of your mind always, even when he's an adult, my child was born prematurely because somewhere along the line, you might find in the infancy stage, the baby's doing quite well considering that they're born prematurely. And then we get to the toddler stage and hmm, something's not quite looking okay. Or they make it past the toddler stage and they're still okay. And then they get to the schooling stage.
and best believe you're gonna pick up something. All of a sudden your child is struggling in school, they can't keep up with their peers and you're wondering what is going on and you've forgotten the fact that hey, my child came early. Those few weeks, no matter whether it's two weeks that your baby came early, they make a difference because there's so many things that happen in utero and then there's so many things that happen outside of the uterus when you're in that incubator that also affects
how you're going to develop, how you're going to grow. So it's something that I've been advocating so much for and I'm actually so happy that now research is going into what life looks after discharge. What does life look like when you start school? What does life look like when you become an adult? There's this community of adult preemies that have come out and they're like, hey, I've been suffering with this and this and this for my whole life and the doctors keep telling me nothing is wrong.
Tasmin Bota - Preemie Connect (44:01.358)
But nobody is looking back at the fact that, this kid was born at 30 weeks or 27 weeks. They just think, I know when I went to that pediatrician, he looked at me like I was crazy when I told him that my child was born at 28 weeks and that he's a premier. And at that time, I think he was three years old and he was like, that's got nothing to do with anything. And I'm like, and sometimes, you know, I'll sit back. Some battles aren't worth fighting. And other times I have to be like,
Okay, I'm sorry I didn't introduce myself properly. My name is and this is what I do. So I know what I am talking about. And then obviously the whole attitude changes after that but it shouldn't have to be like that. You know, one thing that our team has always been supportive on is that I'm the parent. I know my child best. Even when we weren't bonding in that first week of life, I still knew him better than they knew him.
He still recognized my voice when I walked into the NICU. He still responded when I stole a little touch, because back then you weren't allowed to touch the babies. And so if parents are aware that prematurity doesn't end, guys, it doesn't end. You just run your race. I think that would make life so much more easier for them.
And you wouldn't keep second-guessing yourself and you would know that hey down the road this might happen You know, let me store that in the back of my mind I mean in our I don't know if you guys mind if I dive into the second part of our journey in our case again God He's had his hand in everything. He put people in place to prepare me for the second half of our journey. So
I didn't know that all these different things come with prematurity that you'll have told neurodivergency was not a word that I had ever heard in my life. And so he started putting in place people who had cerebral palsy. And at that time, I also couldn't understand, know, but I was just trying to support people as best as I could with a little bit of information that I had not realizing that no,
Tasmin Bota - Preemie Connect (46:18.402)
I'm gonna, those very same people that I thought I was providing support or I was giving a platform to tell their stories would turn out to be the people that I was picking the phone up to to say, hey, my son has been diagnosed with mild hypertonic cerebral palsy. What do I do? What does life look like for us going forward? And I think I was in denial for a while. And I think maybe the penny only dropped for me when...
They said to me, have you started looking at special needs school for your son? And I was like, like I said earlier, when you look at my son, you can't see that there's something wrong with him to the untrained eye. A parent with a special needs child will pick it up immediately. A teacher that works with special needs children will pick it up immediately. But the average person won't notice it. And that's when I was like, my gosh.
And obviously I'm picking up the phone, hey, so and so, this, and I haven't even met somebody yet who has the same condition as him. His is mild, so it doesn't affect him in the same way as somebody who has, you know, a more stronger version of it. And it's just such a complicated road to navigate without having the support that you need. And people look at me when I tell them what his diagnosis is and they're like,
You know, it kind of seems like, she making it up? Is she trying to look for sympathy? And you know, my husband and I have had to just really put our heads down. I was actually quite grateful when the diagnosis came. I'm like, because we finally had a name. We had a name to put to it. And we could see something was wrong and we weren't, I was suspecting cerebral palsy, but cerebral palsy in itself is such a broad spectrum.
So when we got a name, I was like, okay, we've got a name, right? Let's put into place what needs to be put into place and let's the ground running in order to provide him with the care that he needs. Because, know, we are fortunate in the fact that my son will grow up to love an independent full life. You know, he, like I said, it's mild. So yes, we've got some delays and a little bit of struggles and he might need a little bit of more help than the average child. But...
Tasmin Bota - Preemie Connect (48:40.13)
He is doing amazing and he is thriving and it's only because I had those things in place beforehand. I had the knowledge and I had access, access, access to resources. Not everybody has access, not everybody can afford to. And I think another thing that came as a shocker was that we were told at six years old that we had aged out of the public health system. And so now we had to
pay out of our own pockets for every physical therapist appointment, for every occupational therapy appointment, if there was speech to still be had. Speech and all these things on top of having to go to a special needs school which come at a high, high, high cost. And so there have been all these things that we never ever planned for, all these expenses that we never ever thought about and I needed to quit my job.
in those first two years, because there was just no way that I could contend with an employer who had no sympathy to the situation and what I was going through. So we had to weigh it up. Was it worth the money over my child's health and my mental health? Or do we find a way to cut back on our lifestyle in order to ensure that I'm here with him to help him survive and thrive? And I think those are a lot of things that
a lot of parents obviously you don't know because number one, no one plans to have a preemie baby. Number two, you don't realize how long the impact of having a child born too soon is. And one of my hopes would be that we would be able to have funding where we can support parents in terms of something as simple as being able to get to the hospital can become a financial choke hold. So some parents don't go.
because they just don't have the money to go and then they can't provide the breast milk that the baby absolutely needs in order to survive. And so there are all these little things that add up in the long run and that not everybody is privileged enough to have the support that absolutely they require to have.
Shelly-Ann Dakarai (51:02.914)
Yes, you touched on the bigger systemic issues. The NICU journey is intense. It's important. You need those resources. But there's so many things that go into that. Like you said, the parents who can't make it and then are seen as not, they're not invested in their child or they're not the great parents, but you have no idea that they're taking care of three other kids at home and they don't have anybody to watch them and they can't afford to come.
And then the getting up every three hours to pump milk and all the many things that happen. And then the going home, like you said, that is a much longer part of the journey, the discharge and the navigating that than the NICU. And so, you know, on the provider side, you celebrate the fact that these babies go home, not realizing what that life really looks like for those families. So thank you for highlighting all of those things that are part of the system.
Tasmin Bota - Preemie Connect (52:00.214)
I'm so sorry. Yeah. When you talk about the going home part with us, we are finding that there are more deaths post discharge than in unit. And it's because we are discharging babies into communities that know nothing about prematurity. And this is why we are trying so hard to make sure that we are reaching these caregivers.
And, you know, in Africa, a lot of the times the children don't even stay with their parents. They are left with the grandparents and the grandparents don't know anything about prematurity. And that's why it's so important to ensure that the parents are properly equipped that when their baby goes home, they're going to get the best possible care that their parent can provide for them. And we are just, I don't want to say we are failing them, but we are failing them.
and you'll come and find two, three weeks later that same baby's coming back and that, you know, the baby's got pneumonia or the baby's got, you know, something because number one, we don't know what the living conditions are at home. know, some places don't even have running water, electricity crisis, thank God, you know, it's been a year now that we haven't had load shedding issues in South Africa. But at one point it was a terrible, terrible problem.
where you would just randomly not have electricity for hours on end. And all of these things, you know, affect the quality of life, affect the parents being able to provide for their children, because whoever wants to make that decision of whether I have to work to support my child or whether I'm going to physically be there to support my child.
Mbozu Sipalo (53:50.235)
Thank you for sharing that insight and just the fact that it just has many layers, like there's just so many things to consider, but also how support is key. I also really appreciate that follow-up system, the lack of it and the need for us to strengthen our follow-up systems in developing contexts, especially for premature babies.
because yeah, we get very excited to send these babies home, but then, yeah, what does life look like in the short term for that baby? What does life look like in the long term? What does it look like for the parents? Those are really important questions to ask. So I do appreciate you sharing that perspective and giving more focus to that. In linking with that question, mean, linking with what we've been discussing, what kind of...
policies, do you think, if you're to think of like maybe top three health policies, do you think would be good to be at the top of policy makers minds in terms of preemie care or parents or clinicians? And also noting that we are wrapping up, but would be nice to just end on a good note on something that you think would be good to implement.
in the preemie space as someone who is a founder of like the preemie connect and yeah just your thoughts on that.
Tasmin Bota - Preemie Connect (55:25.57)
must say, when it comes to policy, South Africa has some of the world's greatest policies in place. We just recently, it was during COVID, that they updated the maternal newborn policy. And I had the fortune of being a part of that. And I was amazed to see the policies that were there. But when you're on the ground, those policies are not being implemented. that's where we can have these 50 page documents that state.
that you have to do A, B, D, F, But, you know, it's not happening. And obviously, again, there's so many layers to it when it comes to these policies. But I think when it comes to parents are premium, one of the things that is also sitting at the forefront of my mind is and I'm seeing a lot of my international counterparts. But obviously, these are all first world countries where they are having change in the maternity leave.
I mean, I had to choose. I knew my son's been two months in hospital. That was two out of the four months of my maternity leave, which meant that at home I only would have two months with him. And that was something I couldn't wrap my mind around. And again, it was one of the reasons why we decided to opt for the path that we decided. And also that four months is unpaid. So how am I paying for the transport to get to and from the hospital that's on the other side of the town?
And it happens that babies are moved from facility to facility because of the care that they require. Where are the parents supposed to get that money? And then you still end up fighting for your unemployment. A lot of mothers, full term babies, take their four months of unpaid and still by the time they return to work have not received their unemployment. So those are things that really, really weigh heavily on parents in general, not only premium parents, but how
How great would it be to not have to worry about the finances? You're already worrying about, your baby gonna make it from day to day? There were times that we couldn't even survive hour to hour. I was like living minute to minute, okay, now we good, my gosh, no, he stopped breathing, my gosh, they have to resuscitate. So having to worry, my gosh, like tomorrow, and there were moms in the nephew, like we would gather money together.
Tasmin Bota - Preemie Connect (57:49.186)
just so that, okay, this particular mom doesn't have money to come, just so that she can come. Her baby is very ill and she really, really needs to be here for her baby. And also I love the new IKMC policy that is out. I mean, the global position paper and the implementation strategies, they are beautiful. They are wonderful. You know, I was part of that working group, but nobody's implementing them as much as the World Health Organization is saying that we need to have
the dyad together, mother, baby, it's not happening. I mean, we are miles ahead in the fact that we actually have kangaroo mother care units in our hospitals. That's already a step in the right direction. But is it enough? Because you still have to go through that whole roller coaster before you get to the K and C stage of being with your baby and being booked back into hospital and having to go through that journey. So.
we need to change the set up of how our hospitals are designed and make room for the pair. And no one's realizing that this is gonna shorten the time that the babies are staying in hospital and it's gonna give the parents the confidence that they need in order to look after these babies on their own. So my hope would be that prematurity is put at the forefront because we know that it's the leading cause for...
newborn deaths. know that for children under five years old and it's really really because of all these socio-economic barriers. That's all that it is. I believe if the parents had the resources, if they had the education, nobody wants their child to die. Nobody's going to purposely do something in order to cause that death. But when you are struggling just to make a day-to-day
How are you supposed to provide for this child? And then you've still gone through your own trauma. Your birth ended abruptly in a way that you never expected it to. Nobody looked at you and said, are you okay?
Tasmin Bota - Preemie Connect (59:51.096)
Do you need help? Is there something I can get for you? Or just came and sat next to you? Because sometimes you don't want to talk. Sometimes you get tired of explaining to people. And I was lucky. I had a very good friend who like, they just stepped up to the plate. They knew what we needed before we even knew what we needed. You just had a car accident. You need to go to the hospital every day. Here's my car. Take it for as long as you need it. You know, they would come to my house. They would cook food for us because
who after spending 10 hours at the hospital wants to still come home and cook? And I've still got, like you said earlier, you've still got other children at home. So we need to, as much as we wanna ensure that the babies are taken care of, the age old saying goes, if mom is okay, baby will be okay. Or she's gonna make damn well sure that she does everything in order for her baby to be okay. And we need to just start looking at the bigger picture and the long-term picture.
Because like I said, in hospital, you've got the support that you need. But the minute you leave that hospital, no one's picking up the phone. If you missed your follow-up appointment, no one's picking up to ask you, Tasman, why did you not come up for your follow-up appointment? And I feel like that's something that should be addressed because we can't just leave them to fall to the wayside and leave the babies to fall to the wayside. And then the next time you see the baby is when he's being rushed in for some medical emergency.
So yes, to implement those wonderful policies, to make sure that they are actually being done on the ground, and to ensure that our parents are equipped and that they are given the support that they need. I think for me, those are the top two things.
Shelly-Ann Dakarai (01:01:33.026)
Thanks so much, Tasmin, for a very enlightening conversation, also inspiring. And we hope that this message gets to who needs to hear it and that if anybody wants to connect and kind of help Primi connect with any of their endeavors, they'll be able to reach out. So how can folks connect with you?
Tasmin Bota - Preemie Connect (01:01:55.49)
I think the easiest would be to follow us on social media. can DM us. We are on all the social media platforms. So you'll just search for at PreMe Connect, P-R-E-E-M-I-E-C-O-M-E-C-T. And you'll find us there. And yeah, we'd love to connect with you. We'd love for you to share your stories with us. And we do understand that, you know, not all babies get to go home. We understand that some get to go home and don't get to stay.
And that's why our support groups have grown. Our online support groups, we actually have four different ones now, not only the premium one. And we support parents who have lost their babies. We support special needs parents as well. And so, yeah, please do reach out. We would love, love, love to support you on your journey in whichever way is that you require us to.
Mbozu Sipalo (01:02:51.76)
Thank you so much Tasmin for telling us your story and shedding like a deeper insight to what it looks like to be a preemie parent and also to be a preemie advocate. It's amazing what you're doing and I hope that your plans of having the support groups in hospitals or in a hospital this year comes into fruition and you have a new story to tell about.
your PrimiConnect organization. Thank you so, much.
So catch us next time on the podcast and yeah, thank you for listening. Thank you for being here with us today.
Tasmin Bota - Preemie Connect (01:03:26.05)
Thank you so much.
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