Cerebral Palsy Journey: A Neonatal Nurse's Perspective on Life and Value - Pro-Dignity, No Doubt, Episode 1

Episode Description:
Welcome to the inaugural episode of 'Pro Dignity, No Doubt,' a podcast dedicated to exploring the inherent value of all human life. In this episode, host Nicole Smith shares the inspiring and personal journey of her daughter, Cosette, who was resuscitated at birth and diagnosed with Cerebral Palsy. Joining Nicole is Kara Fowler, a veteran neonatal nurse with years of experience caring for children with health concerns. Together, they delve into the value and potential of children born with health challenges.

Timestamps:

• 00:00 - Introduction
• 02:30 - Nicole shares Cosette's inspiring journey
• 10:45 - Introduction of Kara Fowler
• 15:00 - Discussion on the value and potential of children born with health challenges
• 30:00 - Thought-provoking questions about societal impact and the inherent value of life
• 45:00 - Conclusion

Guest Bio:
Kara Fowler is a veteran neonatal nurse with years of experience caring for children with health concerns. She brings a wealth of knowledge and compassion to the discussion on the value and potential of children born with health challenges.

Links to Additional Resources:

• Cerebral Palsy Foundation
• Neonatal Nurses Association

Call to Action:
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Episode Transcription:
We provide a full transcription of each episode for those who prefer reading or are hard of hearing. You can find the transcription for this episode in the tab entitled "Transcrips" above. 

Transcript

Unknown: 0:23

Hello, my name is Nicole Smith, and we're here with another episode of pro dignity, no doubt. And this is a Podcast where we explore the question of what is the value of human life. And it's where we tell stories in order to ask questions in order to spark discussions. So here today, I'm with Kara Fowler. She is a NICU nurse resource nurse for a major Children's Hospital. And we're just here to kind of have her tell her story. And we're just going to start out with how we met. So really cool story of just like, how connections can come from all sorts of places. So actually, Kyra and I went to church together at one point, this church closes down and we sort of like just part ways, right? Right. Inter in 2020, April, fourth, I give birth to my beautiful daughter, coset. And things don't go as planned. And it lands us and NICU. And I get a call from my mother saying, you know, hey, we've got this nurse at our church that would love to, you know, come and just speak life over you. And she walks in the room at one point, and we're like, don't really connect it at first, but you ask if I have another child. And then I say her name? You're like, Hello, yeah, we went to church together. Yeah, so that was super fun. Just like, especially in such a stressful, like, period for us and our family. So, um, but yeah, our story will come out in this, this process our conversation, but I just wanted to start out with, you know, tell us about your like your family, tell us about your work experiences, like, you know, how you got into NICU and that kind of stuff? Absolutely. So I have three kids, and they're all 10 years apart. So yes, it's it's, yeah, that in itself was a challenge. But I was a late bloomer, I thought I wanted to be a pharmacist and then decided I wanted to go to nursing school and almost missed the letter saying, we need to hear from you today, if you're going to be accepting this spot in our nursing program. And I about, you know, flipped out. But I took the chance. And here we are, I actually thought I wanted to be a labor and delivery nurse. And my pediatric instructor said, I really think you have a thing for kids. Would you like to tour the NICU? And so I did. And she got me a couple extra shifts in there. And I absolutely fell in love. I really felt like this is where I'm supposed to be. This is my mission field. Because I've always thought about missions being going somewhere. Yeah. Not just in your career. Yeah. Korean, in my career. Oh, yeah, absolutely. So it was just extra sweet that that discovery was made that way. And so I ended up there X turning as a nursing student and finish up my nursing school career, and got hired. And it's been my dream job ever since. Yeah, and so 24 years. Yeah, but how did you like move up into being a resource nurse? Like, what is that and so resource nurse is, um, a resource to the nurses and the doctors as well, from an educational standpoint to procedures, if you just need an extra hand, because you're overwhelmed with assignment, and you're maybe your baby needs some lab work done, or you need an IV started or something, or all the way to the extreme that we're going to do bedside surgery. So that person that's helping and pulling stuff in and being a help? Yeah, so essentially, like care is the one that sort of like wanders around NICU and make sure everybody has what they need. Yeah, yeah. And you go between various different levels of care. So children that have very, very intensive care to ones that are a long term, you know, will be there for a while type type thing or don't really know outcomes, right. So yeah, so you know, really how I we got more connected in what Kara does, because I knew you were a nurse, but I didn't like know, until you like experienced that. So like I said, April 4, I give birth to a little girl that has a prolapsed cord. And that's essentially when the cord comes out and the umbilical cord comes out in advance of the baby cuts off oxygen flow. Creates brain damage. Yes. So she's born out breathing, they resuscitate. It takes us about four days to figure out something is amiss because she's not able to nurse she's sort of acting erratic, like she's having seizure activities. And, yeah, so once they sort of move us over, they move us from the adult hospital over to the Children's Hospital, and I think it was maybe I don't know. I mean, I had a C section. So I was in a lot of pain, too. And those rooms are not overly comfortable, like one little chair in the corner and like that raffle system, they kind of put you in at like 6pm, like, Hey, you might get it might get room might not, you know, to go lay down. And I kind of had to go cold turkey with the because I was afraid of putting narcotics in my breast milk. So I just yeah, that was super difficult to sit there. But like, you know, Kara walks in, and he just a beautiful warm presence. And it was it was a difficult time, but you definitely were very understanding. So one thing that stood out during that process with regard to our our interactions, is once we were starting to figure out like this is probably brain damage from the lack of oxygen. I had this overwhelming sense of almost peace, like if we haven't if we had named to name it, right, then we can declare victory over and we can work towards something. But it was really the unknown that was hard. So with regard to Kara, what was great is that you've been doing this for over 20 years, right? You've seen every sort of scenario imaginable, some of the most hopeless to the most, you know, difficult circumstances in which nobody really can can see outcomes, like when you're in it as a parent, but you came in and you're like, just started telling me all the miracles that you had seen throughout the years that spoke life into the potential of what cosec could experience throughout this, you know, you don't know outcomes as a medical professional, but you know, what God does in really hard time. So like, were there any impactful stories while you were in NICU that really just or multiple, like, what is it like the takeaway that you has as a NICU nurse? For me, it's never under my under estimate god. Yeah, you know, I mean, it can be a baby similar to coset, that had a neurological injury that you just don't know the outcome. And based on what we see, we can say, hey, we think this is going to be a poor prognosis. We've had babies that had six such significant injuries, that even maybe the brain has been so affected, that it's shifting, and that is not a good thing. I won't go into medical terminology with it. But it can seem very dire and hopeless. And we've had that talk with families, and they've called their family and just say goodbye, and all of a sudden, the baby starts doing baby things, you know, sucking has a gag response now. Whereas before they didn't, yeah, or they couldn't really hold a grasp on a pacifier or things like that. And those are beautiful moments. And, you know, the science still says, gosh, we just don't know how to how to explain how this happened. You know, and I'm sitting there thinking, it's God, it's, you know, I know how it happened. I, you you leaned into me at one point, like, I don't know how my colleagues really can't see God and the presence of this. Yeah. Yeah. And I think that that is a wonderful perspective, I think that that you have in hope, you know, for what the outcome is, but when you have one that doesn't result in this miraculous healing, what does that look like when you're with the families and with the children and that kind of stuff, you know, it can be it can be hard, especially if a family doesn't have a sense of hope, and they don't have a relationship with with our God or Jesus. And you just ought try and give them as much mercy and grace. Yeah, in those moments, because a lot of times the parents are wanting to blame themselves, or a situation and and there's just, there's just no hope for for seeing them again. Yeah. And I don't know, it's just so hard, they feel very vulnerable to just being told what they should feel. You know, and it's very science based. And yeah, there's, it's just hard to describe, I know, well, as a parent, having gone through that, and having, I mean, every day, you have like eight different people that you have to talk about this with, and they're not the same person the next day and the next day and the next day. So you hear a lot of words that are thrown at you. I mean, some of the times, yeah, I can look back on a couple of situations where I've even really bonded with a family and in one situation. The baby had a diagnosis that he could have made it through. He just couldn't he his body just couldn't stand the trauma. Yeah. And so the mom said, you know, why would God do this to me? And I automatically thought, you know, what if he had been given a mother who didn't care, wasn't here, bonding with him, even those weeks and months, that wasn't here loving him and showing him love and mercy and just being there for them. What if he had not had all that? And what's the impact of his life on her to exactly this day, she has said it has made the biggest impact. She's like, I never thought of what my baby needed. I was focused on what I was going through and not seeing. Yeah, I wasn't blessing to him. Yeah, absolutely. Yeah. Well, and I think, this sense of, of normalcy that we look for in life, right? That the struggle and the pain that it is to go through this with a child, and inevitably to win in some circumstances, and once you lose your child, in that moment, you don't feel anything but the grief of it, right? But distance gives, from a circumstance gives clarity, right? So again, as a parent that's gone through this, my child has cerebral palsy, now it's an it's turned out to be a more mild case. It's, it's definitely like at the beginning, you don't know. And, and time has to show outcomes, because even the physicians don't know, they'll tell you, maybe she will never walk, maybe she'll never eat because you need to vent and maybe she'll never, you know, maybe a lot of things, but maybe she'll walk just fine. Maybe she'll eat just fine. Maybe she'll speak just fine. There. Again, it's just estimates. But, you know, walking that path, when you're in the thick of things, all you see is you're just looking down to the stuff in front of you, right, and you don't really see that big picture. And as I've kind of gone down this path, I've realized how much I have a great sense of purpose that that this moment of struggle has really given me as a as a person. Yeah. Not just as a parent. Yeah. Right as your faith, and honestly, like what we should be doing within society to, to serve others. And again, it comes back to that idea of dignity, you know, you every day know that no matter the outcome for one of your patients, their life bared, meaning, yes, didn't matter. Doesn't matter what their outcomes are, as far as like walking and talking, being independent. They have value intrinsic value, and it's worth that fight. So for you, I know, as a Christian, that's what keeps you fighting for life and that dignity. But you know, what, what is it for you also a little bit deeper? On your day to day like, what keeps you kind of grinding through? Is it like the parents is children? Is it like a combination? Do you being able to speak God's Word into their life? Like, what is it for you? Gosh, I think it's gotta be a combination. Because some days, it may be the parents days, it's the patient. And I always pray that God opens my eyes to see what he wants me to see in that situation. Maybe it's me offering calming words or words to a family, maybe it's me touching and singing to a baby? Yeah. Maybe it's even talking with a physician that I know might struggle with some things and putting a different perspective on on things. Because sometimes it's even, even as doctors and nurses, we feel overwhelmed by this. And it's easy to say, Yep, let's just do that. Or let's just tell the family. I think we're getting better at really, and you know, for years, you know, go back 50 years, it was very science driven and very Doctor driven, we're going to do this or we're not going to do this we're in so now we're doing this with families, but we really need to make sure that as Christians, even outside the hospital that, you know, the war isn't finished with fighting for these babies, we still need to be able to support and kind of like this whole Roe v. Wade being overturned in this opportunity. You know, we have fought so hard to get to this point. Now we've got to show up. Yeah. And big ways. Absolutely. For families. Yeah. Well, I think so my husband's an engineer. And I think he had this moment in college, where he just had this idea of missions being something that you went out, and it deeply bothered him because God had didn't have a calling for him to get on a plane and go to Uganda and to serve the children and Uganda, which they God has called people for that, right. But he was called to be an engineer and to serve God and His mission field as an engineer, and to see that understanding of what missions really means is that every need, there's a need everywhere you look. And it's totally unique. Like as a NICU nurse, you know, every single child that sits in NICU is told they're totally different circumstances, right. And so once they exit the hospital, there is still a unique need that that to pour into the life of the parents and to pour in the life of the children and that kind of stuff and to get that sense of community but how we get that is understanding that those lives have intrinsic value. Yes. And and honestly even starts with recognizing that in ourselves, right so we can serve ourselves and knowing our value that we can serve others better, right? But it if you were to speak to a parent going through a similar circumstance to what, you know, we're talking to them right now, like, what would you tell them to encourage them through this moment in their, their journey with their children? I think offering them the hope building them up as parents and saying, sometimes you could use the words, you know, this is your platform that God has chosen for you. Other times, you can't say it like that, because, you know, maybe they aren't Christ followers. And you just build up that you know, you are, you're strong, you're capable. Your baby was specifically given to you, in this season. And I know, the mama bear and the mama advocate, and the or the daddy, you know, you can, you can do this. These are hard things. But there's hope. And we don't know, I had a physician many years ago that I think highly of that said, you know, you can look at an x ray of an hand, and you'll never know if that hand is only going to be able to, you know, hold a ball or if they're going to be a classical pianist. Yeah. And you'll never know. And so I think the support systems behind it, and finding a good church group I've been, I've said that many times, especially if it's a single mom, or in a situation where she doesn't have support, even her family is and what do you think about like a shift in mindset? So society, kind of, again, like Western society, we're really just, we're so lucky, I don't, we don't. It's understated. Like, we are really deeply lucky to be in a sense of access to different programs, that kind of stuff. So we have this mindset of like, what life is to seek out comfort, and normalcy. And if you don't have comfort, and normalcy and ease, that is not a desirable outcome for your life, right. But you see, so many parents that come into these situations in which there's a light that is lit inside them, that their child, and their circumstance gave them. Right, and so maybe shift Yeah, and so as a parent that went through that, too, you know, I understood like dignity and the worth of people and fighting, because I grew up in a family, where we did, my parents were ministers, and we served at risk youth, like, I grew up in that and understanding that they, it's worth the struggle to pursue them, because they were worth be showing up for right and trying to help meet them meet their needs. But I think as a parent, that was a good shift for me, too, that even though I had this mission of understanding what dignity was my I couldn't touch that the children and Uganda that I was like advocating for I couldn't touch the sex slave of Afghanistan that I was advocating for, or the abortion survivor of France that I was advocating for. But I could touch my daughter, like she gave me flesh and blood to the these ideas, that maybe that shift for me, like was a big thing as a parent, but you know, obviously, as a parent, you didn't necessarily go through this, but you, you see it, you know, so do you think that would be something that would be beneficial to like for the parent to just like, shift to literally shift? What what joy is purpose, right? Absolutely. I think society teaches us it's about us and how we look at their image, it's, you know, it's the perfect child, the perfect family, the perfect, you know, and, but the beauty sometimes is in being vulnerable to help your child and grow your faith in trusting that, hopefully, they're trusting in God. Hopefully, that if that's not the case, they've got people around them, though, that can step in that do know him and can support them and surround them with love and, and show them that beauty and love comes in so many different ways. And not that perfect image of, you know, my child is going to be the athlete, and they're going to touch the world and change it through their their body movements, or their brain and their, the, their intellect. Or sometimes we need to take a step back and realize that purpose is deeper. Absolutely. than that, right. Yeah, so, yeah, so let's just like hop into sort of your career set. Like there's this big, robust industry that surrounds what you do, right. And it guides a lot of the choices that you're able to make. Right. So what changes would you say to the healthcare industry that maybe could help people in these circumstances a little bit? I think because the hospital as a whole has just really separated itself from God. Yeah. The heart, the heart. Yeah. Because I think a lot of times there's so much passion when we're of Christ followers, and we want that to spill over but we don't want it to be the I don't know how to exactly say that. It's hard. Because there's boundaries. Yeah, I'm saying, Yeah. I think joy, like you said earlier when there's joy presents, yeah. Present. Sorry. I think you're making a choice in your urine I can't think of how does it that's that was the hardest one. But when the question is you deal with? I'm not really exactly sure how to answer that one. Well, maybe to bring the heart back into the healthcare system. I think that incomes so science driven, yeah. But in our in the neonatal, I'll tell you, when I first started, I really struggled with playing God, you know, in in some of the decisions, and I really was very tormented by some of that in the early days. Now we've become even better at what we do. You know, the, when I first started, if you were under 25 weeks, you really didn't have a chance now, at 24 weeks, you you're gonna probably going to beat the odds, you know, 75% chance, probably I'm not sure exactly. But I think just Oh, and your your knowledge of like, brain development, all of that stuff sort of has really come along scientifically. So you're helping the odds of outcomes for kiddos that are born really, really early. Right. But yeah, I mean, I coming back to being a parent in that circumstance. I think a lot of our struggles with this, that healthcare system has been that it was all about liability. Of course, yes. Not about about caring. Right, right. Yes. Is that science thing again? Yeah. For science? Yeah. Well, in the suit, the SU II culture that we kind of find herself in. We, we definitely felt that through the process. And early on, it sort of came out in a lot of questions like trying to sort of feel out whether we would be one to sue for it because of our circumstance. You know, we we sort of have theories about, you know, how we arrived at the circumstance in which, because it had a prolapsed cord. We were born in COVID era, lots of, you know, telehealth circumstances that I wasn't touched or seen, I didn't have all my testing done. You know, I show up and at the hospital and get the third degree, you know, and my husband just like, we're in labor, like, get us into the hospital, please, you know, but you know, are the response team during the process of discovery of the prolapsed cord? They did great. But you know, there was a lot of like labs and care at the beginning. And then a lot of questions afterwards, like trying to figure out like, feel our way through that, where we just felt liability, liability, liability, that's all we really felt. And it just, if they don't have a connection to the heart issue, and they're just operating out of fear, right. So fear is a big driving force to what I think is deficiency in our healthcare system to is always afraid of being sued. Yes, that is true. Yeah, that's true. I feel like when we, when I look back to 20 years ago, when I started, I feel like our doctors were more in tune. And we're really there in supporting the families. And I feel like now it's taken such a twist back. It's not that we don't support the families, because we do, but it's not, there's no emotion to it. It's, it's I think they're trying to keep that professional line. Parents are kind of left not knowing, like, what the doctors really think might happen. You know, they just say here, you know, they give you the picture. Yeah. And that makes sense. I get that. But at the same time, those families are in turmoil, and they're looking for someone to help guide them and help make that decision. And something more even concreteness. And in concreteness, I don't know if that makes sense. But, you know, again, as a parent going through that. It was like, we only got, I only got a story of it could just change tomorrow, you know, like, it could change tomorrow, and they kind of repaired that. But it was never tomorrow for us. It's not always tomorrow for a lot of people. So what we felt like we were missing was like a range of outcomes that we could really sort of work through. So like, if it is brain damage, we've decided what is like the that look like going forward as far as potential. I know. Again, these are just guesses. But I think that that even that there's like a heart issue in it there. You're seeing the parents going through some really hard times. And I'm not an emotional person. I would just like sit there and cry and I'm like, No, it's fine. I'm like poor NICU nurses are like dealing with people in the worst circle. stance as possible. You know, they're almost like your psychiatrists in the midst of like a trauma, right? I have one nurse, which I won't say her name on air, but I'll tell you later. I'm sure you remember her who she is. But she said, yeah, you can hold, hold coset today, and I was like, I don't think so I don't think you know, she's like, it's the, you're gonna be the day you can finally hold her because she'd been in the box. And she'd been an EEG and all the stuff, you can't touch her. And then by the end of the day, sure enough, like, I wasn't able to hold her. So the next day I had had her again, and she goes, Oh, my gosh, went home and told my husband or ruin this mother's life. But it showed that there was a care in it. I have many like moments throughout that process of how deeply impactful by the nurses and the physicians that showed heart. Like the very first NICU nurse, we got I, you know, we're gonna go through the extensive testing, right? And she, what are these tests? Like, could you write them down so I could like check them off, like as we find the results, and she took the time to like, write everything down. And for what purpose they were being conducted. And I that stuck with me. I had one older nurse that was a night nurse. Most night nurses are just like, you know, in between, like checking vitals, right? And she just she took extra care, because you know, she doesn't have low tone, she couldn't sock so she took extra care to try to do like maneuvering with your body to like, try to get her to suck. Yeah, like, those are the shining moments for the healthcare industry and nurses and physicians that showed that they cared enough to take that extra step right of care. Yeah. So yeah, I commend you on doing this for like over 20 years, you can see how this would be a mission field. Yes. And I love it, when I get to have someone shadow me or if I'm orienting them or something, I think there's an opportunity for me to teach them how to show grace, and mercy and compassion to families. I mean, it could be anything from a mom who had to make the choice about taking drugs or not. And that's, that's a disease in and of itself. But you know, the babies born MAY be addicted. And we still have to show that mother grace, because that might be the one thing that leads them to, to Christ, or to a church that starts up and we we learn, we may not see them from point A to point Z, we might get them to BC or D. Yeah. And if we get these people, you know, the next nurse that comes on, you know, she can offer them that these are moms need that even if it's just, I had no idea my baby had Down syndrome. And now we're here or I had no idea my baby would need heart surgery. And now we're here. These are very traumatic moments for them, and they're vulnerable. And they need love, grace, mercy, compassion, everything all rolled up into one. And so I think that's how I've decided that this is my mission field. This is where I can give grace and mercy and compassion. Yeah. And extend every circumstance. Yeah, yes. Yes. What do you think we're maybe like, when they exit, Kara's care? What would be this, like ideal circumstance? Do you think that would help give them the resources they need to sort of continue to see? Wow, you know, through this date, you may know the TE is I think you've been involved with that. Just a wee little bit. Yes. I wish we had something like that through churches. I do, too. And we this is our time to step up. We, we don't know how long we have of a window. Or if we've got a really long window with this opportunity on the Roe v. Wade. We're being reversed. As a church to step we have fought for this baby before it was born. Now it's time to fight for that. Yeah. Well, and I. So I've been a communication specialist in the Human Rights world for a decade now. And I've worked on a lot of topics I've heard every argument imaginable for or against abortion, and some that are just equally as awful from the pro life side as they are from the pro abortion side. And I like to listen to the foundational principle that a lot any of these questions are being posed, right? Including the ones that come for ones that advocate for abortion. And one of it is just that we're not caring for the child beyond, right. And there are a lot of services out there, there really are, but they're not fully and effectively doing what they need to as far as like coming together as a community. And a big part of the nonprofit that's connected to this. Podcast actually is intended to do that where there's a big organizational component in the plan. until you be a connective piece, actually, you have a child coming out of Nikki right, and they have severe disabilities, and each are so unique. So you have all of these services that are Christian based or not, that are trying to meet specific components. And as a parent, I was just meant left to like fend for myself, right. So I had to like feel through this process in which I had therapists Tell me, are you lucky that you're smart enough to figure this out? I'm like, I'm barely smart enough to figure this out. Because I have to literally do like a zillion like, you know, Google searches and ask ya ask a lot of questions, specific questions of therapists do and physicians. Yeah, so the hope is, honestly, to bring together a lot of these resources for abortion, adoption, sex trafficking, there's a lot of connective pieces between these different issues right in our society. And a big part of that is trying to bring the heart back into the process to and see everybody as an individual and their individual needs. So I'm glad to hear that, you know, not just the state can fill this, the hope is that the church has the heart, right. And we're, that's why we shouldn't really rely on the government because they don't have a heart. And they they're, it's more about, you know, filling the need that kind of comes with the consequence of gaining of power over someone where the church is, should be different. Not it's not always. And we have to speak to the church a little more firmly, as living as Christ intended us to where the image bearers are heavenly father in possession of immeasurable worth. You are my hands, and you are my feet, and you're supposed to go out and meet those needs. Yeah,