Sara Ward and Valerie Akerson

[00:05] VALERIE AKERSON: Hi. My name is Valerie Akerson I am 46 years old. Today is October 20, 2023. I am in St. Louis, Missouri, and today I am with Sarah Ward and Sarah is a parent that I had the pleasure of working with in a clinical setting a few years ago.

[00:25] SARAH WARD: My name is Sarah Ward I am 34 years old. Today is October 20, 2023. I am in St. Louis, Missouri, and I am with Valerie Akerson who is a social worker with the St. Louis Fetal Care Institute that I worked with a few years ago when I was a patient of theirs.

[00:49] VALERIE AKERSON: All right, Sarah, so we know you were a patient at the fetal care Institute in St. Louis, which is a fetal center where anyone is referred who there may be something abnormal identified on ultrasound. And that was your story. So can you share the day that you found out that your unborn daughter was going to be born with severe medical complications?

[01:13] SARAH WARD: Yes. I will tell you that this day just, it still remains very vivid in my mind. And I think back to it occasionally where it's, you know, I can remember just being in the room, and I was there for just a regular ultrasound. It was my anatomy scan, and I had to go back a few times because of just the positioning of the baby and not being able to get, you know, all of the images that were needed. And so I honestly did not think anything of it. I had gone through the same thing with my first four, and so I, you know, just was there literally laying on the table, waiting for the doctor to come in to do the scan. And I was creating a grocery list in my head, talking to my husband about, like, what we're gonna make for dinner that night. And we had no fears, you know, in the world at that moment. And then once the doctor came in and, you know, sat down to do the scan, he was taking a really long time. And that was when some of those fears did start to creep in. But I'm still a very positive person. I tried to not let my mind go there. And then it got to a point where he just switched off the ultrasound, and he just turned to us, and he just said the seven words that changed our lives. There's something wrong with your baby's heart. And it was at that moment that I honestly didn't know what to expect. I didn't know anything about a congenital heart condition or what does this mean for our baby? What does this mean for us, for our family and the future? Would she even live? You all of a sudden start hearing about heartland problems, and you think about, you know, the heart and the brain are like, the two most vital, you know, organs, and, you know, there's. You're just completely overwhelmed. And honestly, it was at that point that everything became a blur. And, you know, the doctor is, like, explaining what he thinks is wrong with the heart and is explaining the condition, and I had no clue. And honestly, like, I I think it was just that the tears were starting to well up in my eyes. I was, you know, there holding my husband's hand. The nurse was so wonderful in the room, and she came over and was just handing me tissues, and she's rubbing my back. And it was just an extremely difficult day. I could not go back to work, like, afterwards, and I just went home to kind of process, you know, the news. And we were then referred to the fetal care institute. And, you know, once we kind of had that first visit with the fetal care institute and we met our cardiologist, I started to feel a lot better. Like, I felt like, okay, we have a plan in place. We have a diagnosis. I was getting a lot more positivity of just, you know, starting to see, like, what the future could hold and that, you know, our daughter would still be able to live a fairly, you know, normal and, you know, very fulfilling and healthy life. And then at my 32 week appointments, we were, you know, thrown for another surprise where just, you know, some more imaging came up that really surprised everyone. That my daughter had an omphalocele and a diaphragmatic hernia. And an omphalocele meant that her bowels were developing on the outside of her body, and it was covered by a thin membrane sac. And hearing that and hearing that, she also had this other very severe defect of this, you know, hole in her diaphragm. It was just like, what more can be thrown at us? You know, it was like, here I was starting to feel, like, in control again, and then now all of that went out the window. So, you know, we were now facing three, you know, kind of life threatening conditions and defects. And it meant that, you know, at that time, our surgeon was anticipating doing surgery right after delivery and that, you know, we would have to have a really long NICU stay. And so that's what we were anticipating and what we were planning for. And it really just changed our whole delivery plan. And so it was, you know, my pregnancy was honestly probably one of the most difficult times of the whole journey because there's just so much unknown, and you just feel like you're kind of in this waiting period, you know, to get to delivery, and what will things be like, after she's born and you feel like, you know, you're protecting her, like, you know, while you're pregnant and everything. But then once she's here, what, you know, what is that going to look like? I can't protect her anymore. And so it was just very challenging, mentally and physically with the pregnancy, and that was one of the most difficult times of my life.

[07:05] VALERIE AKERSON: Probably almost something you would call a defining moment in your life, too, I think. Yeah, absolutely. How do you feel like that news took a toll? You've said a little bit. You know, how it took a toll on you. How about your husband and your family?

[07:20] SARAH WARD: Yeah, you know, I will say that my husband and I are very different. Like, we. And we handle things very differently. And I think one of the things that we realized early on is that we needed to respect, like, each person's way of handling this new stress and, you know, the situation and that I am one that is very vocal. I like talking at through. I reach out for that support, and I can't just sit still, and I can't, like, if I'm too quiet, that's when my mind starts wandering to, like, all of these really scary thoughts, whereas my husband was the opposite. So he just. He didn't want to talk to anyone. Like, he just wanted to, like, internalize it all, you know, he, you know, really, like, looks to music as, like, that support, and so he was really just, you know, wanting to, like, put his headphones in and just, you know, listen to his music and just try to, like, get through each day, you know, pregnancy. And so I will say that I feel like it made us stronger because we didn't push each other, like, into what our expectations were with it. We had that respect for each other. So we realized, like, what we both needed at that time and in that moment. And, you know, that we ended up carrying that through all of the challenges that throughout the pregnancy and afterwards and all of our surgeries and hospital stays. And I will say with our family, you know, our family really came together to support us and kind of wrap their arms around us. But I will say in particular with my mom that my mom's a pediatric nurse, and so, you know, she was a huge resource, you know, for me throughout that time. And even though she, you know, didn't have, like, direct experience with the conditions that Lily ended up having, just her being, like, a listening ear and just getting the medical terminology that I was saying, you know, to her. And I ended up bringing her with me to, like, all of our appointments you know, that we had with the cardiologists and surgeons just to be another set of ears. I mean, she was, you know, one of my rocks, you know, throughout that time. And honestly, like, it's really true what they say, that no matter how old you get, you just always need your mom. And so, like, she was right there, even just in the delivery room with me, holding my hand, cheering me on when I gave birth to Lily. And so she. I was, you know, and it. I will say that it, like, took a toll on her as well. And I think that sometimes people forget about grandparents and just the stress that they take on, like, seeing their child go through something like this as well. But she. She was there to kind of definitely lift me up when I needed it.

[10:37] VALERIE AKERSON: Well, and you're a mom to girls, you know, yourself. You can already, I'm sure, envision being there for them at some point.

[10:44] SARAH WARD: Absolutely. Yeah. And I will always be there for them, too, if they ever have to go through anything like this.

[10:52] VALERIE AKERSON: Yes. Can you talk about just the ongoing challenges with Lily? Just maybe some of the fears you have, some moments of joyfulness and hope and just how she's doing now.

[11:04] SARAH WARD: Yeah. So I think that one of the, like, biggest misconceptions that people have is that they see Lily. She's doing great. She looks like any other five year old. You know, her surgeries have been kind of behind us. We haven't had any big hospital stays in a little while, but that they just think then that, you know, Tony and I, my husband, that we're doing good, you know? And. And I will say that for the most part, we are. But, like, you have that. That trauma that just so easily comes back, like, throughout any little thing that might seem off, you know? And I think that that's just, like, one of the things that was really challenging is that sometimes when you're in the moment of something really scary, like a surgery or a hospital stay, you almost just have that adrenaline rush that's, like, getting you through it, and you're kind of, like, putting that, like, okay, like, what do we have to do next? And you're, like, creating this, like, checklist and everything to kind of get through that situation. But it's almost when you're, like, in those moments where it's calm and it's like, there's nothing going on, that that's when that trauma really comes to the surface sometimes. And it can be very unexpectedly. And I really kind of faced that. You know, I would say after, you know, Lily's one of her surgeries. And it was maybe about six weeks after that I just had a breakdown. And it was like everything just unleashed, you know, with me. And she started crying one night, and I was home alone with her, and I, you know, didn't know why she was crying. I. All these thoughts start racing through my mind, and honestly, she was probably teething or something, like, equally normal, but I was just immediately going to, oh, my gosh. Is there something wrong with her heart, or is there something else wrong? A complication from, like, the surgery that's just now coming up. You know, I can't. All of her defects, except for, like, her abalaseal, like, you can't see them, like, from the outside. Like, they're all things that are going on on the inside that you have no idea is, you know, that there's anything wrong. And so it's like, how am I supposed to know, like, as a mom and, you know, have that assurance that everything is okay? And so I just remember really struggling that night and, you know, going to work the next day. I remember sitting down with my manager, and we were just having our normal, like, weekly check in with each other. And she just asked me the simple question, how are you doing? And I I just, like, looked at her, and I just couldn't even speak. And all of a sudden, like, the tears just, like, filled my eyes, and I just started sobbing, like, you know, in this meeting, and I couldn't catch my breath. And I'm, like, having to try to, like, drink, you know, try to drink some water and, like, calm down and, you know, and I'm trying to explain to her because she has no idea, like, you know, what's going on. She wasn't expecting this type of reaction from me, and I wasn't expecting this type of reaction from myself either. And, you know, that, you know, I had been so afraid and so scared, you know, that, like, that something was wrong and that there was something more serious going on. And I remember then, like, after this meeting, trying to collect myself and, like, go out to my car just to, like, have some, like, private, you know, few minutes to collect myself, and I'm still just, like, uncontrollably crying, like, in my car, and I just could not, like, get it together. And I'm, like, calling my husband and my mom, and then I even just, like, reached out to her doctor, like, her pediatrician, and I'm like, okay, I just need somebody to, like, lay eyes on her and let me know, you know, that she's okay. And I remember even, like, talking to the nurse on the phone and, you know, the nurse, it's, like, not quite getting, like, why I want to bring her in, because, like, I'm listing off, like, you know, oh, well, she cried last night. Well, you know, babies cry, you know, and she's trying to say, like, well, she might have been teething or something. I'm like, I know, I know she might have been teething. Like, I know it's, like, probably nothing, but I just need somebody to tell me that she is okay, you know? And it was more for me, you know, and not necessarily for Lily. And so I remember taking her in, you know, to her pediatrician's office that day, and, you know, her pediatrician looked her over, everything looked okay. But then she just sat down with me, and she then talked to me about myself and just, you know, how are you doing? Do you feel like, you know, you would want to talk to somebody or, you know, need a little extra help? And I said yes, like, absolutely. And I was then able to get connected with a counselor who, you know, started to kind of work with me. And it just so happens that the counselor that I got connected with actually was aware of the medical conditions that she has, which was really nice for me to, again, to, like, not have to explain everything and so, like, have somebody that understands kind of the severity of some of them or just, you know, what makes, you know, her conditions a little bit trickier. And the fact that, you know, she's very rare because she's got all three of them, and, you know, she's very rare in the fact that she's also doing so well, too, you know, with it. So it's, like, good and bad, you know? But so that just really got me kind of, like, focused on mental health and, like, my own mental health and also helping, like, other parents with their mental health and trying to let them know that it's okay, like, for them to be able to reach out to. So I will say that Lily is doing great now. She's five years old. We actually just had a checkup with her earlier this week, and her pediatrician literally could not stop smiling at her and just staring at her, like, in awe because she is just thriving so much, and she's just, like any other five year old. She's, like, ready to go to kindergarten next year. And I just find so much joy in, like, the little simple moments with her of just, you know, experiencing something new with her, like, whether it's like, you know, putting her feet in the sand for the first time, or it's seeing her wave from the school bus window or something, or even just, like, kissing her little brother's head. Like, it's a just, you know, it's like we just don't take anything for granted, like, anymore. And that's where I think, like, Lily's story and, like, our journey with her has really taught us is that we are just always feel so grateful and, like, have so much appreciation for everyone. At SSM Health, Cardinal Glennon Children's Hospital, like, we think of them literally almost every day and say, you know, thank you, like, in our minds, because we just wouldn't have this wonderful life with her without our medical team.

[19:32] VALERIE AKERSON: That's great to hear. So, I mean, it sounds like you would recommend, too, to moms and or dads who are struggling to reach out for that mental health support.

[19:44] SARAH WARD: Oh, yes, definitely. And I think that it's like, you know, my recommendation, I think, for, like, anybody that is in my position is to first reach out to your care team to kind of just let them know, like, how you're feeling and if they can connect you with any type of resources. So, I mean, I think back to, like, my time, like, with the fetal care institute and just, you know, being able to reach out to you and like, to say, hey, like, I'm struggling. Can you connect me, you know, with these different resources? And I know that that's such, like, a passion, you know, topic for you and stuff. And now, like, you have, like, so many wonderful things that, like, you can be able to recommend as well as just, like, our cardiologist was able to help a lot and, like, she would just call and reach out to me to check in and, you know, whether that was giving me a call or sending me an email. And it just made me feel like not only was lily in good hands, but that I was in good hands, too, and that everyone at Cardinal Glennon was, like, taking care of my whole family and making sure that we were all doing well. But I also just think that, like, you know, people should reach out if they need to speak with a counselor or, you know, try to, you know, go to any type of therapy sessions that might be able to help. And I see social media as, like, a really powerful tool to be able to get connected to other people that have gone through the same journey as you. So I have been able to connect with a lot of other moms, you know, that have heart kids or that have had some of these other conditions that Lily has. And it just feels so good to have that tribe, like, behind you and that, you know, you can talk to people who just get it, you know, and that have walked that same path as you before. And so, you know, I have also found social media to be really helpful with just finding different groups on Facebook that are for different medical conditions, too, and just being able to have that group to see other people's experiences. And again, you know, whether I've been able to form, like, personal relationships in there, but also just, you know, to be able to have it as a resource, too, has been extremely helpful and just feeling a little bit, like, less, you know, isolating throughout the process. Yeah.

[22:31] VALERIE AKERSON: Thank you, Sarah. That's great.

[22:33] SARAH WARD: Yeah, no problem. But I am just kind of curious, you know, with you, Valerie Like, I know we kind of touched on it earlier about how you have this passion, like, for mental health and helping parents. Can you kind of explain a little bit more about that and just what has led to that passion that you have and how do you help other parents, like, with their mental health at the fetal care institute?

[22:59] VALERIE AKERSON: Sure. So I actually was led to this path for personal reasons, so very similar to you, Sarah, but this was prior to fetal care institute being a thing. Um, had a similar experience on a, you know, an anatomy scan, ultrasound, where now, looking back, I saw some red flags, but at that moment, I didn't, you know, you go into those scans excited. You're gonna see, you know, your baby, and you're gonna, maybe if you choose, find out if you're having a boy or a girl. Never expecting to hear that they found something different. So for me, almost 18 years ago, same thing, like, your baby has significant fluid in her brain, you know, a rough, really rough pregnancy, high risk the rest of the way. So I'm a mom of a medically complex child myself, and so I was a stay at home mom in those times. And the fetal care institute started in 2009. I had worked at Cardinal Glennon before in a different capacity, and I did come back in 2010. And then in 2011, I heard that this fetal care institute place needed a social worker, and I heard what they did, and so walked down there and just said, this is a passion of mine. Became their first and still to this day, their only social worker. And in the midst of being able to work with families going through this, I just developed a huge passion for mental health. I'm going to say maternal mental health, because I realize now I was suffering myself and didn't do anything about it. And so it has been fantastic to be able to be an advocate for that and to really learn a ton. The way I sort of approach our families is, is actually grief work, because every family that comes into fetal care is grieving. The expectations that they had for the pregnancy, that child, you know, the labor and delivery plan, there's lots of grief. And it's difficult because partners also grieve very differently all the time. And so just kind of being aware of that. And so several years ago, we decided we were going to start screening just for depression, anxiety symptoms, and we started doing that. We actually sort of set our threshold for what we considered a high score higher because no one wants to be a patient at fetal care. I mean, we're nice people, don't get me wrong. And so those are not diagnostic tools. They're simply just saying, are we showing symptoms? We don't just go by that piece of paper. Of course, you know, I use clinical judgment as well. But there's so many emotions when a family is coming into fetal care. There's guilt, there's denial. Sometimes there's feeling completely out of control. And so we want to be able, like I like to sell families. We're here to take care of all of you. Not just you physically, not just your baby physically, but all of you. I'm pleased to report a few years ago, we also started screening the partners because we don't want them. Very, very important piece. And so I see every family that comes in, and it's a conversation that we have. And so what I'm looking for when I'm meeting with folks is a trio of things. Are they receiving supportive counseling, therapy, are they on any medication? And lastly, what is their social support look like? The trio of those things is really, really important when you're going through any sort of mental health challenge. Of course, there's barriers to therapy. Like you said, you can get an appointment. Well, when you're in the middle of a high risk pregnancy, the last thing a lot of people want is one more appointment. Most give you the option to still meet virtually. We at fetal care received a grant a few years ago and named a program called all of you matters, where I have been doing several different things, some educational videos. Also, once I became a clinical social worker, was able to offer some free counseling to our patients, which has been really a blessing. So the big, the big thing is just that we take this very seriously, and I'm going to use something that most people here, you know, we all know when we get on an airplane, right, and they go through all of the things before takeoff about how if an oxygen mask drops down, you put yours on before you put your child's on. I'm going to use that same analogy in that we as moms or dads have to be able to care for ourselves to be better and best able to care for our children. I know that's kind of an analogy a lot of people use, but very, very important.

[28:07] SARAH WARD: Yes, definitely. So, you know, talking to you, it just kind of makes me think, and especially since you've been in this experience before, you know, going through it personally, but have you ever kind of thought about how you are forever part of, like, somebody's story? You know, like, how I can still remember back to that day, like, so vividly of, like, finding out the news, and I feel like every interaction that I have with, you know, a clinician and somebody on, like, Lilly's medical team since then, you know, I can still kind of remember them vividly. But, like, does that, you know, do you ever think about, like, about that and just like, you know, I don't know. I think that's just, like, so curious that, you know, you are part of all of these mom's stories and, like, being there to help them. And how does that make you feel?

[29:08] VALERIE AKERSON: I guess I always say my job, you know, people say, what's your dream job? And I said, I always say, I live it. I'm a mom. And I to work with not only the families that I work with, but the team that I work with. But I just say it's a privilege to walk this journey with, with parents. It's absolutely so rewarding. You know, we're walking with people and literally, hopefully, it would be the most difficult time in their life that it doesn't get harder go along, but to just watch the growth and not just in them, in the whole family, the strength that even they didn't realize they had, that they come to realize they have just to see what they're capable of, to see the love and the determination that families have for these babies that are going to be fighting a battle. I say all the time, one of the big roles of any mom is being an advocate for your child. I think that's a hundred times bigger in our setting. And I said this before, working with, I work with the most amazing team because we deal with some stuff, like, we deal with sad stuff, right? But we are always there to support each other, always. And there is nothing more rewarding for me personally than to get an email a year or two down the road from a mom with a picture or, you know, a family is there for a follow up visit, and fetal care, for some reason, is the farthest from the front door of Cardinal Glennon. But when families take that extra jaunt down to come down the fetal care so we can actually see this baby or that we cared for for so long, there is nothing more rewarding than that. There's a little phrase I like to use, and I feel like I did this personally. You grow through what you go through, and I think I can say that for almost all of our families.

[30:56] SARAH WARD: Yeah, yeah. That just, like, gives me chills, just like hearing you say that. I'm like, I can't wait to bring Lily down the next time we're there so that you guys can all see her. So, like, what would you tell a parent who is severely struggling with the challenges of their situation? And, you know, how can mental health professionals be able to help them?

[31:19] VALERIE AKERSON: So really important and often a difficult thing to do is convincing people to ask for help, but then also accept help. Mental health professional wise, I think this is a very unique group, a unique situation. And so I think looking for, if you're looking for a therapist, looking for someone maybe who has medical information or medical background, the whole perinatal world, which. Perinatal means thinking of getting pregnant through postpartum. There are certain certifications for therapists who just have a lot more training in that area. Always a good thing to look for. Just, you know, mental health help at any level is fantastic. Right. And, you know, other. How can, how can, if my friend asks me, how can I help? How do I, you know, how do I let my friend help? And you said this earlier, like, with your mom, it's easier when you don't have to explain everything.

[32:19] SARAH WARD: Yeah.

[32:21] VALERIE AKERSON: And so I think a lot of time, peer support is, is more of that practical support and that emotional support. Let me do a load of laundry for you. I'm going to the grocery store. What can I pick up for you? But professional wise, you know, there's, there's, there are, I'm going to say in the St. Louis area, there are a lot of us out there who are really focused in the perinatal world. I'm not saying other therapists who don't have that certification can't help. I just think you kind of come in at a different baseline level of understanding where there's less explanation needed and that sort of thing. Really, the big thing is communication, like realizing, okay, this is really hard for me. I think I need to step up a level. What can I do? Reach out to your team, like you said, you know, you're involved with on social media groups, reach out to someone else. Where have you found beneficial to look for help, look for services, that sort of thing?

[33:15] SARAH WARD: Definitely. So can you kind of talk about just, like, some of those rewarding parts? I know you mentioned it earlier, like, seeing the patients and everything, but is there anything else that you wanted to add about that?

[33:31] VALERIE AKERSON: Like I said, just, you know, seeing patients, receiving pictures, we, of course, will get, you know, testimonies from families also just about, you know, this was one of the hardest times in my life. You were all there for me, that sort of thing. Using what we learn and hear from other families to then turn and help future families is always very beneficial. Also, we still need to learn a lot, and so we learn from families, too. And so being able to use that personal experience and then what families report back to us to help other families in the future.

[34:08] SARAH WARD: Right. That's great. Well, thank you so much, Valerie I appreciate you taking the time to talk to me today. And it's so good to see you again. And it's so nice to have some positive news to report about Lily. And I can't wait, like I said, to bring her by for her next appointment.

[34:27] VALERIE AKERSON: Yeah, thanks for sharing your story today, too, Sarah.