On this episode, Kelly talks with Karen “Timi” Leota Bressler, Zeta Lambda, and learns about HELLP (Hemolysis, Elevated Liver enzymes and Low Platelets) syndrome and preeclampsia, both dangerous conditions that Timi experienced during both of her pregnancies. To learn more, visit the Preeclampsia Foundation, preeclampsia.org. If you want to connect directly with Timi, you can contact her at email@example.com.
Disclaimer: This transcript was developed with an automated transcription program, spelling and grammar errors may occur.
Welcome to the Alpha Connect Sisterhood Series Podcast. I'm your host, Kelly McGinnis Beck, national president. This podcast is all about sharing the stories of our members and our connection through Alpha Sigma Alpha. Thank you for joining us today. Welcome to the podcast, Katie Bressler.
Hi. I'm excited to be here.
I'm excited to have you. Now some of our listeners may know you by the name you use when you were in college, which is Timi, which is how I know you from back in those days, I say that, like it was that long ago. It's not but it kind of is. But we won't talk about how long ago cuz I feel like that makes us feel older. So anywho, I'm happy to have you here. And I'm excited to share your story. As we talked about a little bit before we got started. I didn't necessarily intend for the last couple of podcast episodes here to be a Women's Health Series. But it seems that that's been the journey that I've been on. And hopefully our members are finding that extremely valuable as we talk about some of these different things. But before we get to all of that, let's start like I always do with every guest tell us your Alpha Sigma Alpha story, how did you become a member, make sure you share your chapter and your college name?
Sure, um, I went to college at Rowan University. And I went there with the intention of joining a sorority. And in spring 2003, I went out to rush and recruitment. And I found that Alpha Sigma Alpha, just the ladies there just seemed very natural and authentic and not really like a group that I needed to change who I was to fit into. So I was really excited that I matched up with them and without a doubt accepted the bid when it was offered to me. Throughout my time there I served as Secretary and President. And then I Oh, while, I was there. To go back to the name thing. There were a lot of Katie's in the Zeta Lambda chapter. And I didn't want to be Katie L at the time with my maiden name. So I decided you know what my middle name is Timi. My real name is Karen. So my initials are K T. And my parents have always called me KT or Katie growing up. So instead, I'm going to go by Timi because there are no other Timi's in the sorority. And that way, I don't need to be Katie L. So I started going by Timi. And then that lasted throughout college after college. Senior year, I decided to apply to be a leadership consultant. And further my experience there. So I was a leadership consultant. I guess that's going to kind of tell my age, but 2006-2007 I served as a leadership consultant, which was an awesome experience. And then after that, I started use my legal name again, once I got more professional, long term jobs. So depending on the time in my life that you've met me, you might know me as Karen, you might know me as Timi, or you might know me as Katie.
or all 3?
Some people call me Katie, Karen.
There you go. So, when do, so you joined, What did you go through formal recruitment? Or was it informal or COB type process?
It was formal.
Okay. See that is at Rowan that second semester freshman year?
Okay. I thought they had deferred recruitment. You said something else that I was gonna comment on and now it's totally slipped my mind. So you said you came with the intention of joining a sorority. How, like what led you down that path? How did you know that that was something that you wanted to do?
I think I just always thought that was going to be a great way to make friends and to get involved on the campus. And in my first semester, when I would see the sorority and fraternity members walking around with their letters, and I could see the pride that they had, I felt just the desire to experience that also. And then in joining Alpha Sigma Alpha, it definitely did provide a lot of that social growth, but also leadership skills that I gained just the various experiences that if I wasn't in a large social group, you know, I might not have developed in the same way I did. You know, I think it just provided a lot of opportunities.
Absolutely. And you obviously got so much out of it, that you went on to travel as a leadership consultant.
Yes. And that was definitely a life changing experience. Also, I mean, before that, I never really thought I'd be the type of person that could fly somewhere by myself or just go out to a restaurant and sit alone and eat you know, not feel like everyone was staring at me, but those are things that you do as a leadership consultant. And just being able to speak to people in a professional level, when you're fresh out of college, you know, you're still young, and you're meeting with administrators and you're meeting with faculty. It helped me develop professionally, and just helped give me a confidence of being able to be comfortable in a variety of situations.
Yeah, absolutely. And I think you know, you're spot on around it, it teaches you a level of kind of independent, confident independence, right, that you can go places on your own. As I think a lot of people have that fear of going into a restaurant and sitting down by yourself or whatnot. And so learning how to do that at a younger age, I think is helpful. Especially you know, as you if you travel for work professionally, I know I have where you're, you're traveling, and you're by yourself, that's what you end up doing as well.
Yeah. So and I mastered, you know, being able to lift up my suitcase and say, This was about 49 and a half pounds under the limit, I'm good, I don't need to weigh it.
Right. And I know how, like, I know how to pack a lot of stuff in there since I'm living out of a suitcase for a period of time.
It's funny, those were the days. So one of the things I was hoping that we could talk a little bit about today is your story around your birth and delivery experience of your two daughters. You have had preeclampsia. And in our last podcast Jen Gobrecht talked about her experience. Now hers obviously was very different. She had a uterine transplant, and then carried a baby. But she had shared about the fact that as she was getting close to delivering, she had experienced preeclampsia. And listening to her story, too, I thought about how different the story I've heard you tell, versus what she said, because they kind of were monitoring her and in almost anticipating that that could have been a risk that she might have had. So I feel like they they kind of knew that and caught it quickly, where you had a very different experience, where if I remember your story correctly, and I don't want to get too far ahead, I want you to be able to share it, you know, they didn't diagnose you correctly in the beginning, which was a little bit scary as well. So maybe you can kind of know share your story and your experience, because I imagine that will be helpful to other other members to learn more about that, especially those who are in their, you know, the years where they're looking to become a parent and know some of those warning signs and just kind of better understand what that is that women have to experience may experience I should say.
Yeah, definitely. I like to preface preface before I share my story with people, especially if they're women who are looking to get pregnant or are pregnant, or partners and people who are looking to start a family that I don't intend to share my story to scare anybody, but more as a reminder of the things that can go wrong and the importance of advocating for yourself and trusting that you know your body. Because my story is a scary one. So I want people to know that I do recognize that it is a sensitive subject. So I understand that people find it difficult to listen to, or aren't ready to listen to it at certain point in time. But you know, in the future, if anyone ever did have questions, they can definitely reach out to me. So when I was pregnant with my first daughter in 2013, I had a pretty easygoing, uneventful pregnancy. I didn't really have any morning sickness or any like, significant pains or difficulties. I didn't have gestational diabetes. I was planning an all natural delivery, I was a part of a prenatal group of women that were all due around the same time. And I was the only one who was crazy enough to be like, alright I'm hiring a doula and I'm having natural childbirth, and this is the game plan. But when I was around 36 weeks pregnant, I started to get pain in my back. And at first I thought, you know, it's just this extra baby weight that I'm carrying around. And I mentioned it to my midwife. She agreed this probably just what it was. And that as long as I was taking some Tylenol and the pain was going away that, you know, there wasn't anything to be concerned about. I'm a nurse. So as a nurse, I'm aware that there's a maximum amount of acetaminophen that you can take in on a daily basis. So I was keeping an eye on that. And as my pain progressed, and I was taking the Tylenol more frequently. I was still keeping an eye on it. But eventually it got to the point where I couldn't really take any deep breaths. Sometimes I would feel like the pain was reading. radiate, excuse me. radiating around from my back around my abdomen, I just couldn't get comfortable in any kind of position. And I had in the back of my head, you know, I didn't want to be that patient that I'm just big and pregnant. And that's why I'm feeling this way. And meanwhile, I'm calling the OB's office constantly, I didn't want to make a big deal of nothing. So I waited until about five o'clock in the morning, when I was like, alright, whoever's on call, they might be waking up, now, I'm not going to inconvenience them too much. And I called and they were like, alright, you know, it sounds like you might have a kidney stone. So we're gonna send you for an ultrasound. So I went, and I got an ultrasound, my kidney. And they told me that they thought they saw a stone, but because I was pregnant, I couldn't do a CAT scan to confirm it. But I could go home, and then someone from the doctor's office would give me a call back. And let me know what my next steps were. At that point, it was around the lunch hour, and I went home, and no one was calling me. And I was in so much pain, and I'm calling the office and I keep getting this lunchtime recording. And then they eventually called me back. And they said, alright, you know, come over to labor and delivery, and we're just gonna monitor you. And, you know, maybe we'll give you some medications, and see how the baby tolerates it. So I went over the labor and delivery. They gave me percocet and the baby to monitor, yeah, and the percocet seemed to take my pain away. So my daughter, Hadley, she tolerated it, her heart rate was fine. And they said, Alright, that seems to be working for you. So we'll discharge you, you'll go home, we'll give you a script for the Percocet and you'll take it as needed. Just keep us updated. So I got discharged. Before I could even fill the script. My pain was increasing and excruciating. I filled the script, I took a Percocet as soon as I got it, and it barely touched the pain. And I'm like, Alright, as a nurse, I know that typically, the script is written one to two pills every four to six hours. So I can kind of like, you know, I could take a second one. I mean, the pain was just so bad. So I took another one. And it was not, it didn't touch the pain at all. So I went back to labor and delivery. Now it's like, one o'clock in the morning. And this is in January, so it's freezing outside, I'm wearing flip flops. Because I'm 36 and a half weeks pregnant, my feet are swollen and can't fit into my boots.
So we went over the hospital, and they drew labs and I didn't hear anything of it. They started to give me IV morphine, and that didn't touch the pain. So then they started giving me IV Dilaudid, which is like eight times stronger than morphine. And that was finally relieving some of my pain. And the baby was still tolerating it on the monitor. So we were still okay. They sent me for another ultrasound, which did not show what they thought was the kidney stone. So they said that I was looking like I was passing it on my own, and that I could go home and do that. I, for some reason, had this gut feeling. And I said, No, I'm not going home. Because I know I'll pass a stone a lot faster if I'm getting IV fluids in the hospital.
And my pain is now controlled if I'm getting IV dilaudid. So the midwife who was there who actually has a reputation for not keeping patients in the hospital unnecessarily, for whatever reason, she also said, alright, you know what, you can stay overnight. And a few hours later, I was asleep, and I woke up just feeling incredibly nauseous. And I remember ringing for the nurse, and they came in and I said, I just I just don't feel right. And they weren't even listening to me because the baby's heart rate was dropping on them on the monitor, and I had no idea of that. And then everything kind of went black, and I couldn't see anything. I remember them telling me to turn on my left side and I physically could not move to do that. So they rushed me in for an emergency C section I was put to sleep for it. When they went in to do the C section. I just, a ton of blood just poured out of my abdomen. And they realized that it wasn't coming from my uterus. So they had to call a general surgeon to come in and they figured out that I had a 10 centimeter tear on the left lobe of my liver.
Yeah. So Hadley was born, she wasn't breathing. They had to intubate her and she had to go to the NICU. And once I had my additional abdominal surgery to repair my liver, I got sent to the ICU. I had multiple blood transfusions. Hadley ended up being extabated and on room air within a few hours. They diagnosed me with HELLP syndrome, which stands for hemolysis, or the breakdown of red blood cells, elevated liver enzymes and low platelets, because the labs that they drew during my C section showed a low platelet level and an elevated liver enzyme level,
Which is because you had a tear in your liver, I imagine
Could be and because they hadn't diagnosed me with it prior to the delivery, who knows?
Do they know what caused the tear in your liver?
So with HELLP syndrome, which is considered a severe form of preeclampsia, the liver can swell and liver rupture is something that can occur with HELLP syndrome.
Excuse me. So, yeah, they told me I had HELLP syndrome without preeclampsia, it was just an atypical presentation. I never had high blood pressure. I never had protein in my urine. Even, you know, the swelling that I mentioned in my legs, like it wasn't significant.
And all those symptoms, you just describe are symptoms of preeclampsia?
Yes. So preeclampsia, women can have high blood pressure. And when I say high blood pressure, one of the common misconceptions is, oh, well, it's got to be like really high. Well, my baseline is 100 over 60. If my blood pressure is now 130, over 90, well, that's high for me, even though that's not necessarily high for someone who runs, you know, 125 over 85. You know what I mean?
So that's something for women to be aware of, is that your body's different other people. So high blood pressure, for one person may be different than high blood pressure for somebody else.
It's funny, I always remember people telling me like, pay attention to what your blood pressure is, you should know what your blood pressure is normally.
Yeah. Yeah, definitely, you should know what your baseline is. If you gain a lot of weight in one week, that could be a sign, if you are having shortness of breath or facial swelling. Usually, if you're getting liver pain, it's in your left upper quadrant of your abdomen. It could be left shoulder pain, you could be having the back pain. Yeah, there's, there's a variety of symptoms, severe headache, blurred vision, those are signs of preeclampsia, also, and those are also things that, you know, sometimes pregnant women experience and it's not preeclampsia, but you know, not to minimize it, and to be like, alright, this is still something that's not normal for me. So I need to call and get it looked at. You know, simple blood and urine tests will give you an idea of if what you're experiencing is okay or not. So I found out after the fact, after my delivery, when I was finally ready to process through my experience, because I had received general anesthesia because of my significant blood loss because of the magnesium they put you on when you have preeclampsia to prevent seizures. It creates a brain fog. I was also getting pain medications. So a lot of her birth, I felt like I wasn't present for I didn't believe it was my daughter when I first got to meet her a day and a half after she was born. Because I didn't have any recollection of it. And...
Yeah, so I mean, it's crazy when they're like, this is your daughter, and I'm like, Wait, did I really have a baby? Because I know I'm not pregnant anymore. But I don't remember any of this. And it was just like so many missing puzzle pieces that I struggled to process. And I always kind of viewed myself as a type A person. So like I was in control of my life, and I have, I had my plans. I had my natural childbirth plan. And some people say you make plans and God laughs
Doesn't quite go the way we plan for those like to plan. Well, I'm similar. So I had to plan. It didn't happen the way I planned it.
Yeah, so that's kind of what happened there. And I started seeing a counselor for it. And eventually, I mean, that wasn't helping me too much. That whole traumatic experience led me to my faith. I came to know Jesus through that experience, the healing through that. And it really it changed my life. So I think, Boy, I know that my experience was definitely part of God's plan. My plan wasn't but God had a plan for me through it. About a year and a half after that whole experience. I felt like God had given me a peace about why I went through what I went through and that it would be okay if I had another baby and that that's what God wanted us to do. So my husband I talked about it, we prayed about it for a while, I went to see a high risk OB, prior to getting pregnant. And she told me that she didn't think I had HELLP syndrome or preeclampsia. She thought I just had a spontaneous liver rupture caused by pregnancy, and that there would be nothing to do to monitor it. No way to prevent it. And that if I chose to get pregnant again, I would just be risking leaving my daughter without her mother.
Yeah. Definitely not what we were expecting to hear.
No, my goodness.
So because I took more time prayed about it, I ended up making an appointment with a hepatologist, who specializes in the liver. And we went to that appointment, and I had my scans done and everything. And we had prayed and said, Alright, God, like speak through this doctor. I know. You know, no doctor wants to say, yeah, go ahead, get pregnant knowing my history and take that liability. So just, you know, have her say something that shows us that this is the plan you want us to follow. And we went to the appointment. And the doctor comes in, she says, You know, I looked at your scans, and I read your history and your liver looks totally fine. You can't tell that anything ever happened to it. And are you here to find out if you should have another baby, because if so I say go for it.
Well thats very different than the last doctor.
Yeah, she was like, we don't know exactly what happened. But we know something did. And we can do scans and ultrasounds of your abdomen, every trimester, we can check your bloodwork every month and more frequently if you need it. So yeah, we're just going to keep a really close eye on you. And she wanted me to see a hematologist and still follow up with high risk. So there was still there was a game plan put in place. So then we went and saw another high risk OB. And she kind of agreed with a hepatologist. She said, Yeah, we don't know what happened. But there is monitoring we can do and we'll keep a close eye on you. So my husband and I were like, alright, and we got pregnant again. And then with my pregnancy with my second daughter, everything was going fine. Again, pretty easy pregnancy until 35 weeks, and then I started to have that back and shoulder pain again. And I didn't know if it was just due to anxiety coming up on like the same timeline of when I had gotten when I developed HELLP syndrome with my first daughter. So I had taken one of my slips for bloodwork and got the bloodwork drawn, I'd actually just had blood work drawn a few days prior and just had the ultrasound done a few days prior. And everything was fine. So when I got this bloodwork done, and my primary doctor had gotten a copy of it first, and he called me and he said, Hey, just the you know, we got your blood work back and your liver enzymes are a little elevated and your platelets are a little lower than they should be. And then they were a few days ago, but I wouldn't be too concerned. And I was like, Excuse me, you know my history, what do you mean, you're not concerned. And he was like, oh, you know, it's not too out of normal range. So you can just follow up with your OB. Now I want to backtrack a second, I forgot to mention that. After I process through things, and I got my medical records from my delivery, I found out that when I had first been run to the hospital, and they draw on my bloodwork, my platelets were already lower than the normal range. And for whatever reason, it got missed and the attending OBGYN did not know the labs and the residents, I guess didn't know that it was a big deal. Because I wasn't presenting with typical signs of preeclampsia. So they did not recheck my blood work while I was in the hospital for 24 hours before having Hadley. So that was a near miss on their part in that they probably could have caught it before trying to discharge me first off, because if I had gone home, we would both be dead, we wouldn't have made it back to the hospital. But they also would have been able to probably catch it before me having such significant blood loss before her needing to be intubated, and whatnot. So there was a miss on that part. So when I went into the second pregnancy, I thought you know what, like, everyone knows my history. I'm at the hospital, I was known as the liver rupture girl. So..
Oh my goodness.
So not necessarily a good reputation to have but also one that's going to make people remember and you know that I wanted my experience after the fact that my first daughter to be an educational one for the healthcare field. I didn't want to sue anybody over the experience. You know, I wanted it to be learned from and not something for providers to fear. You know what I mean?
So, yeah, when my primary doctor called me back when I was pregnant with my second daughter, and told me, I wouldn't be too concerned, I was clearly upset by that statement. And I called the OB's office and they said, alright, you know what, at the end of the week, we'll have you do a non stress test, and we'll recheck your blood work, but you know, I think you'll be okay. And I was like, Excuse me.
You know, my history. This is this is not okay. Like, I'm not waiting a week to get checked. And they said, All right, well, if your pain gets worse, come to labor, labor and delivery overnight. I said, Okay, that's fine. And that night, I woke up at like, one o'clock in the morning, and I just felt uneasy, and I thought, you know, what, I can't sit at home, and not be on the fetal monitor, and not know what's going on and be experiencing the same thing. You know, and I was calm about it. I wasn't full of anxiety. I woke my husband up and I said, Hey, we're gonna have a baby today. And I was 35 weeks and six days along at the time. So he said, All right, you know, you're not, you're not speaking out of fear, like a definitely sounds like you're listening to your body, and you know what's going on. So we went to the hospital, they drew my blood again, and said, You know what, your labs are looking worse than they were yesterday. So you're definitely developing HELLP syndrome again, and we're going to do a C section in an hour. During that C section, I was able to be awake, which was awesome. I get to hear the baby cry for the first time. And that was really, really important to me, since I've missed out on that the first time. And we ended up when they were consenting me for the C section. They had asked about if we wanted to, you know, get my tubes tied or anything like that. And if you're having two complications, we decided that would be what was best for our family. And while they were there, they did that. And everything seemed to be going fine. And I thought to myself, Oh, maybe we made a mistake. Like, you know, maybe I shouldn't have gotten my tubes tied and a third pregnancy would have been one without complications. But then a few hours later, I remember holding baby Hannah. And again, feeling like something wasn't right. And I told my husband, he's taking the baby. And he said do I need to get the nurse. And I said, yeah, yeah, you need to get the nurse in here. And they came in and check my blood pressure. And it was like 60 over 40. It was..
Very low. Yeah. So everything kind of got blurry again after that. But it turns out, I was bleeding from my uterus this time. And I had a uterine artery, pseudoaneurysm rupture, which is basically like, pressure had built up in that artery and, you know, made it explode. And I know during the C section, my blood pressure had shot up really high. So I personally think that that's what caused this to happen. But they were able to go in and repair that. But again, I had to go to the ICU. And I was like, alright, you know, what, definitely a wise decision to not have any more children for for our family. But I do remember one comment that had been made to me, but I went back to the hospital, to have Hannah, in the middle of the night. And I was telling them about my back pain. And the one nurse lifted me and she said, so this could be just a pulled muscle, right. And as a nurse, also, I understand that she was just trying to, like comfort me or not make me think the worst. But it reminded me of like, how important it is to know my body and to be like, No, this is I've experienced this before. And I know that this is not right. And it's more than a pulled muscle. So, you know, thankfully, we have two healthy daughters. Throughout that experience and having gone through it twice. I've become involved in the Preeclampsia Foundation, which is a national organization, spreading awareness and doing research to help understand more about what causes preeclampsia and HELLP syndrome, what can be done to catch it earlier, what can be done to prevent it. I mean, there's not a lot known about it. So there's, well, prior to COVID, there were a lot of walks, called the promise walk for preeclampsia that would take place throughout the country in different cities. And we had one that covered this fully South Jersey region. So I volunteered for that for many years with COVID. We haven't really done the walk in person, but we still do a lot of fundraising for it and just try and raise awareness wherever we can. And you know, share our stories and just try to help other women know that, you know, they should trust their bodies and advocate for themselves too.
Well, I was gonna be my question was, so they don't necessarily know what causes it or like are certain women or certain health situations predisposed to experiencing it or it just there is no kind of rhyme or reason at this point in time as to why some women experienced that and some women don't.
Yeah, I mean, there's definitely there's different hypotheses, different speculations. It does seem to be more common in the African American community. They say that, if you've experienced it, once, depending on when in your pregnancy, you experienced, it might predict if you're going to experience it again, there's some hypotheses that it stems from the male partner in a relationship that something's genetically might, you know, the two of you together puts you at higher risk for it. There's some studies that show that it could be something with the placenta, when it first implants that that can predict you know, from that first day, you know, if you're going to develop it or not, yet, they just nothing's really known for sure yet, there's still a lot more research to be done. There's also studies about the long term effects of having preeclampsia the risk for heart disease for stroke in the future. You know, they are doing genetic studies to try to see if children of people who had preeclampsia are more predisposed to having it themselves.
I can understand that. And so is it. Is it the bleed.. Like I guess, as I try to think about exactly what the like, what the simplest way to describe it, is it the bleeding and the pain that is what triggers then all of the the symptoms. I don't even know how to ask what I'm trying to ask. Um, like, I guess it was the simplest way to describe preeclampsia, because I heard you describe it in great detail. And I'm just trying to, you know, envision kind of more the, maybe there isn't really a simplistic way, right? Like, it's very scary. And it certainly puts a mom and baby in at risk. And I can understand that piece to it. But I guess it, it sounds like maybe it's the pain that is the leading symptom, if you will...
For me. For me, it was for a lot of women, it's just they'll get high blood pressure, they don't even know something's wrong until they're at a doctor's appointment. And they're told, Wow, your blood pressure is 200 over 105. We have a problem here. And they're feeling fine up until then.
So the symptoms do vary. And, um, preeclampsia, in the simplest form is known as a hypertensive disorder of pregnancy, meaning that one of the biggest signs is the increased blood pressure, but along with that increased blood pressure, you're getting that swelling.
And, you know, because of that increased blood flow, you know, having shortness of breath and holding on to fluid, things like that, you know, one of the, and then with preeclampsia, so that's this kind of primary diagnosis. You can develop HELLP syndrome, which, like I said, is considered a severe form of preeclampsia, but you can get it without it. So some of us like to say it's like the nasty cousin of preeclampsia. It's not exactly preeclampsia is not necessarily a precursor to it, but it's related. And then a lot of people will still say that delivery is the cure for preeclampsia. And that is actually false, because you can develop postpartum preeclampsia up to six weeks postpartum, whether you had preeclampsia it pre-delivery or not. So throughout being involved in the volunteer work that I'm part of in the relationships I have with various people, I do know some people who had preeclampsia, they delivered. And then they ended up with postpartum preeclampsia after the fact. And I also know some people who delivered with absolutely no complications at all. And then ended up in the ER and back in the Mother Baby Unit postpartum because they developed postpartum preeclampsia. And it's crazy because even women that I know who had preeclampsia weren't aware that they could develop postpartum preeclampsia. So there's this huge, yeah, it's this huge gap in education. And even as recently as a year ago, I heard this happen to someone. So it kind of baffles me that It's still not something that women are being educated on enough.
What is, and I don't know that you know, this statistic, but how common is it? You know, is there a statistic that, you know, one in X number of women may experience this?
I don't know that statistic off the top of my head, it would be probably an easy Google search if somebody is interested in knowing the exact statistic. I just know, when I was first diagnosed with HELLP syndrome, back in 2014, with Hadley, they had told me this is so rare. And I shared about my experience on Facebook. And I heard of several other people that I personally knew that had HELLP syndrome.
Because I'm always interesting how small the world really is, when they say it's rare. And then the next thing you know, like, out of the woodwork come people that you know, that have it that you didn't realize had it.
Yeah. And you're like, alright, so maybe it's not as rare as they think it is. Or maybe it's misdiagnosed a lot. Or maybe it's just not talked about enough?
Well, I definitely agree with that not talked about enough. I mean, my son's 15. Right. So it's been years for me, but I can't even ever remember someone talking to me about this being one of the potential risks of, you know, having a child, you get the tests for gestational diabetes, and all those other things. But there's not like an increase in monitoring into if I hear you correctly, one way to make a simple monitoring component is regular blood tests, just to keep an eye on it. But I guess if there's no, no way to say that someone is predispositioned to potentially get this. And I think about Jen right on our last podcast where she had the uterine transplant, so they automatically I guess, you know, assume she could get anything, right, anything could go wrong with that kind of a pregnancy. Whereas, you know, someone who hasn't been pregnant before and you know, has their own uterus and whatnot, you don't know that until then. I mean, my son was born with a heart defect. But what was interesting was the doctor had said, Oh, if we would have done a different ultrasound and known this, when he was in utero, we would have operated on him before he was born, which that just ended up itself blows my mind that you could operate on a baby while they're still in the mother's womb. But that was the conversation they asked me was, well, if we had done a different, you know, a different more, you know, some of those more 3-D like detailed ultrasounds, we could have seen this, and we could have fixed it beforehand. And I'm thinking, I get that, like, it's rare. But you know, as a mother, as a parent, you're just thinking, this is like women give birth every day.
You know, how do we not monitor them a little bit more closely beyond the traditional tests that we currently do, especially knowing how far science has come?
Right. And I had tried to come up with changes in hospital protocol, because of my experience, and as a way to kind of prevent this experience from happening to somebody else. And one of the comments that I was told was, insurance isn't going to cover extra testing for every pregnant woman who says she's got pain.
And that's... Because if you think about it, even outside of pregnancy, and maternal health, but just in general with health, I mean, think about how many people you know who their care, or their diagnosis of something has been delayed because of insurance. And because it needs to get this pre-authorization and this certification, it gets denied. And then you have to appeal on all that and how much delay and care you have because of that. And I think that's an awful part of our healthcare system right now. A very good response, someone has to have.
I think that answers really my question. Right? That's why we don't do it is because insurance doesn't want to pay for extra testing.
Right. And I wonder if they do that reading for your son? Well, if they had theories and but you know, if that's the test that they did normally they could have caught it.
Right. And, you know, that's my frustration with the health care system is. Yeah, there might be an upfront cost to doing some of these, this testing, but think about the good things you can do to address it versus you don't know and now you're spending a lot more money treating it because you didn't know about it.
Right. Like I just I think about it in those terms. You know, it's no different than getting a vaccine or you know, you buy car insurance or things like that you buy In hopes that you don't need to use it, you know, in our health care system, like I get that we don't want to test for test sake, but is just kind of interesting. I remember after my son was born, they said, Oh, you would be considered a high risk pregnancy if you got pregnant again. And we would do more, there will be more testing done at that time. And I was like, interesting.
Yeah. But it is frustrating to hear the answer of, you know, insurance wouldn't pay for this. And it's just okay. But they're going to end up paying more down the road if this happens.
Still, I can understand why there's still a lot of research yet to be done to try to help figure out what are some of those key...no, I don't even know what the right word is. Right. Not symptoms, but like, what is it that, you know, put somebody more at risk than someone else that you could justify that? I mean, certainly, in your case, having your first child puts you a little bit more high risk, but then even still, at least you got those extra blood tests, right, that you could, they could see that on their test results to be like, Okay, this is happening.
Separate from you, you know, it goes back to the know your body, and you have to be your own advocate from a health care system perspective.
You do. I mean, I work in the health care system. So I trust health care providers, you know, I still trust health care providers. But to know that they're people too, and people make mistakes. So that's why like, you need to look at yourself and say, Alright, you know, I feel like something's not right. And even though my provider says this could be normal. If I'm really feeling like this might not be, then I need to impress that upon them. Because I do think I think a lot of times, healthcare providers will look at how, how you're presenting your problem, or how, how urgent or pressing you're making it seem to determine how far they need to go with their evaluation of it. And I don't know if that's a true statement or not, but in my own personal opinion, I feel like the way you discuss your problem and the way you advocate for yourself and put your foot down in certain situations is going to impact the care you receive.
Right, like you saying, No, I'm not leaving.
Yeah. If I was like, Okay, well, she knows best, then I would have been doubting my own self, and not be here today.
Well, and I think, you know, I also feel for health care professionals, and to your point of trying to figure out based on the symptoms that you're describing, what could it be because there could be a number of things and not related to this specifically, but I think about I had, I had my gallbladder removed a couple of years ago. And it started with, you know, I would get these weird pains like in my left shoulder and kind of chest and I couldn't figure out what it was. And one time it lasted for like hours and hours and hours and I was finally so miserable, that I went to urgent care and I remember I looked at the doctor and I said, I know I'm not having a heart attack but I don't know how else to describe this feeling to you and it won't go away. And he ran all these tests and he couldn't find anything wrong with me he's like you're not having a heart attack. I was like, like, I know I'm not having a heart attack so I'm sitting here having a conversation with you right? But I don't know how else to explain this pain and then literally as he's like discharging me he makes this passive like passing comment of I wonder if it's your gallbladder and so I went to the doctor and she sent me for an ultrasound and sure enough I had gall stones and what was happening was it would get you know lodged at the bottom of your gallbladder which is then what would create all of this pain and everything and so they're like the solution is to remove your gallbladder but had that doctor not said as like the his passing comment discharging me. Maybe it's your gallbladder who knows how much longer it would have taken to figure out that that's what was wrong with me.
Yeah. Oh, you know what, now they're talking about the gallbladder. I think I misspoke earlier, because of my symptoms being like so a typical me having that tear on the left lobe of my liver. Most people who are developing HELLP syndrome or as a sign of preeclampsia, and they would have right upper quadrant pain and I don't know if earlier if I said left upper quadrant pain or right upper quadrant pain, but for most women, it would be right upper quadrant pain, right shoulder pain. For me, it was the left side and that's where my tear was.
That makes sense.
I'm so glad you brought up your gallbladder.
Yeah, I mean, it was just a You know, you know something's wrong and trying to figure out what that is takes a lot of conversations and no figuring things out.
So I don't envy physicians and nurses of trying to figure that out as you're trying to listen to the symptoms and say, What have I seen before? And what could this be?
Right? And even with my situation, when I got in there with Hadley, and my platelets were already low. You can just have thrombocytopenia pregnancy, which is low platelets due to pregnancy. And it might not be preeclampsia or HELLP syndrome.
This is exactly why they say pregnancy is one of the riskiest things that women can do.
Yeah. And, again, that's something like I never thought of how risky pregnancy could be, before I got pregnant and had my experience.
Oh, because we just we see, we see and hear about women delivering babies every day. We don't necessarily hear about everything that they go through in their experience.
Yeah, and I mean, honestly, I like get a little panic attack whenever I hear people having home birth. And I think, I mean, this is a very common practice nowadays. And I think it's great for the women who are able to do it, but I also have this fear for them, that things can go wrong, it is so risky. And if you're at home, you might not make it to the care that you need if something seriously goes wrong.
Yeah, that is true. Absolutely. So how old are your girls now?
Hadley will be eight on January 18. And Hannah is four and a half.
So you've got lots of energy and excitement happening in your household on a daily basis.
Thankfully, they get along pretty well, but not all the time. But my husband is loving being a dad of girls, a lot of people will still ask like, Oh, are you trying to for a boy. And you don't always realize how those comments can make someone feel not knowing what their pregnancy or relational or birth experiences could be. But thankfully, my husband is a guy with a big beard. And he's fully confident wearing girls bows in his beard because that's what his daughters want him to do.
And he's okay having daughters.
I think over the last couple years, especially it's become for lack of a better word normalized around girl dads like there's been a lot more focus on girl dads and how awesome girl dads are.
You know, boy, moms, I think was always a thing. But girl dads I hear a lot more people talk about which is, which is great to see. Because there's this stereotype, dare I say have you know the assumption of you'll have a boy and you'll have a girl and there's your happy little family? Well,
Right? That's your perfect family.
Right? You you don't really get to pick what you have. And just because, you know, you've got two girls doesn't mean you want a boy or you know are going to keep trying until you get that like it's it's an interesting, I think I don't know what the word is I'm looking for. But just an interesting take on how society makes makes assumptions for us of this is what most everyone should expect to have their life look like.
Yeah, I remember Hadley was probably about a year old. And I was still trying to process through everything. And we were at one of my best friend's parties. And one of her mom's friends was there. So a different generation than I am. And she said, Oh, you know, how's your daughter now? And you're going to have another one, right? Because you can't just have an only child. And I looked at her with just no filter. And I said, Yeah, well if you almost died during childbirth then maybe you'd feel differently. Afterwards, I was like, wow, that was really insensitive me to say it that way. But in the same regard, that's also this unaware insensitivity it's a lot of people have when they make comments, like what comment she had made to me.
Yeah, absolutely. Or the comment to you know, a newly married couple that's like, oh, when are you going to start, you know, trying to have a child that assumes they want children?
Not every family, not every married couple wants children. Not every man and woman in the world wants to get married.
Right. And not everyone is physically able to carry children, you know, and you have someone who's been married for any length of time and why aren't you pregnant yet?
Maybe they're trying and that's a really sore subject for them.
Yeah. So many things that I think is a society I'm hoping that in a lot of ways with the pandemic and social justice and all the things that have raised awareness and other areas that perhaps people will be a little bit more thoughtful and kinder, and not making those assumptions going forward with individuals, because it does put them in awkward positions to have to answer that which they shouldn't be in.
Well, to me, this was great. Thank you for sharing your story. And so happy to know that you've got two beautiful, energetic little girls there that maybe someday will be future Alpha Sigma Alphas, I shouldn't make that assumption. But maybe they will be future Panhellenic women is a better way to say it, and love to see them in a AΣA but maybe they will find their home elsewhere. Or they might not find it in the Panhellenic world. Who knows?
Who knows, I hope they they are interested in it though.
Absolutely, you know, they get they get the exposure and they make the decision that is best for them. I'm saying that as I think about what I just said about people not making assumptions, but we you know, as sorority women sometimes can't stop making that assumption, either old habits die hard.
But thank you for sharing your story. I appreciate it. I hope that this is helpful for other members as well, especially those who are, you know, thinking about wanting to start a family and becoming pregnant and understanding that or maybe somebody who is pregnant today and just you know, wanting to understand a little bit more about some of these other experiences that you could have, because I feel like the more informed we are and the more we know, the more aware we can be.
Great. Well, thank you again and to our listeners. Until next time,
Transcribed by https://otter.ai