Episode 56 SN: A Run in with Gestational Diabetes, among other things: Tabitha’s Story
In general all the stories women shared on the show reflect on Roe in part because they show how challenging pregnancy can be both physically and mentally even when pregnancy is highly sought after. That’s one of the major take homes from this podcast real women sharing their actual experiences and hopefully contributing to a more realistic narrative around pregnancy and birth. And today’s story is very much in this vein. My guest today walked into pregnancy unsure about whether she wanted to have a child. Ultimately she and her partner decided they did. She ran into gestational diabetes which effected how she felt about the pregnancy and her ability to control her blood sugar, and had a significant impact on the delivery, which happened in late fall of 2019, so she also had to contend with a six month old when the first lockdown happened. She and her partner managed it all and now are enjoying their 2 and a half year old.
To find Tabitha’s writing, click here, here and here…or search for her on the web
Gestational Diabetes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3120181/
https://pubmed.ncbi.nlm.nih.gov/3542067/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4290225/
The Placenta in Pregnancy wrt GD
https://www.ncbi.nlm.nih.gov/books/NBK1668/
https://www.karger.com/Article/Fulltext/455904
GD and preeclampsia
https://www.everydayhealth.com/gestational-diabetes/gestational-diabetes-and-preclampsia.aspx
Induction and Breastfeeding
https://www.sciencedirect.com/science/article/abs/pii/S0378378216302122
https://www.sciencedirect.com/science/article/abs/pii/S0889854517301158
https://www.liebertpub.com/doi/full/10.1089/bfm.2017.0012
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host, Paulette kamenecka. I’m an economist and a writer and the mother of two girls. A few things to mention before we get going. First, this episode is late, because COVID essentially grounded me for the better part of two weeks that I’m recovering and episodes will roll out on a regular schedule again, starting now. Second, since the last episode, Roe v Wade was overturned. I still have too much rage about this outcome to talk about it. But in future episodes, we’ll address this specifically. In general all the stories women shared on the show reflect on Roe in part because they show how challenging pregnancy can be both physically and mentally even when pregnancy is highly sought after. That’s one of the major take homes from this podcast real women sharing their actual experiences and hopefully contributing to a more realistic narrative around pregnancy and birth. And today’s story is very much in this vein. My guest today walked into pregnancy unsure about whether she wanted to have a child. Ultimately she and her partner decided they did. She ran into gestational diabetes which effected how she felt about the pregnancy and her ability to control her blood sugar, and had a significant impact on the delivery, which happened in late fall of 2019, so she also had to contend with a six month old when the first lockdown happened. She and her partner managed it all and now are enjoying their 2 and a half year old.
Let’s get to this inpsiring story
Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Tabitha: My name is Tabitha Blankenbuehler. I’m an essayist I live outside of Portland, Oregon.
P: So nice. Well, let’s go back before children for the very start. You grew up with siblings?
T: I did. Yeah, I’m the oldest obviously she had a brother and a sister. My sister was three years younger than me. And my brother was nine years younger than me. So he was kind of like, you know, I sort of got that mothering experience a little more with him. And still think of him as like a child.
P: Yeah, my sister is eight years older than me and her little nickname in my email is kiddo. So I’m with you. And so we were just talking about before we went to tape, the fact that for a lot of people growing up in a house with siblings makes them think, oh, I want a family. I’m definitely gonna have kids. And it sounds like for you that was not the case. So why don’t you tell us what your experience was?
T: Right? Yeah. I mean, I had, you know, a really great childhood. My parents were loving, supportive people. You know, the kind of people that you would say, okay, they were like born to be parents. I guess. For me. It wasn’t so much that I was that I didn’t have a good childhood that I wanted to recreate or anything like that. It was just sort of that I saw how much time and how all encompassing. Parenting was especially, you know, for my mom and I just didn’t want to do that. Like I wanted to do other things. I wanted to be a writer and you know, I had a bunch of other things I wanted to do be president and all these things. I really wanted to take precedence over having a family and I also kind of thought, you know, well, my family is really great. I don’t need more.
P: Yeah, yeah, yeah
T: I have, I have what I need. So also, when I was growing up, I just didn’t really like you know, I was an oldest child and I was very stereotypically the oldest child. You know, I was like, best friends with my teachers. Oh, all the adults around me and people pleaser and all those sorts of very boilerplate things. So I didn’t like kids. I had a hard time with other kids. I just didn’t relate to people my age. So I think there was that too, but just that I don’t like kids, even though I am one. I don’t want to be I can’t wait to not be one anymore. So
P: Well, I think seeing your mother in that way is wildly insightful. So maybe you were just kind of ahead of the curve there. And I for sure have you know, most people don’t know how they’re going to jack in a child to their existing life. And, and a lot of people, myself included, just kind of threw my hands like up, people figure it out. I assume I’ll be one of them. But it seems to me very smart to look at that and say Holy shit, that’s a lot of time. I can do other things. Right. And now that you’re on the other side, right, you’re right. It is time consuming. Yeah. So how did you move from the I don’t like kids. I don’t want kids to look I’m pregnant.
T: Yeah, it was, you know, really unexpected. Journey, I suppose. So, in 2018, I was on the end of my book tour I was doing I was completely absorbed in that in the writing pursuit and everything. And towards the end of my book tour, I realized I was you know, a few days late on my period, and being very obsessive about everything. I just took a pregnancy test. I figured, oh, well, there’s no way that I’m pregnant. I’m on birth control, blah, blah, blah. And it I took it in my office bathroom, and it was positive. Yeah. And, you know, completely threw me for a loop. It was the last thing I was expecting. And my first instinct was that I didn’t want to have a child and I wasn’t going to keep this pregnancy. So I went in and talked to the doctors at Planned Parenthood. I had caught the pregnancy super early, just because of being so conscientious about my schedule. They wouldn’t have been able to do an effective procedure at that time. And so when I just kind of sat and thought about it for a while, you know, it just sort of gave me the opportunity to react in a way that I didn’t expect because my initial reaction is I don’t want to do this, which is a completely valid response.
P: Totally, especially especially when you’re on birth control, right? Yeah. This was not my intention, right?
T: No, no, and we totally wasn’t and I think we always kind of said, my husband and I, well, maybe when we feel like the time is right, like, you know, whatever the hell that means. means nothing. Yeah. Yeah, the longer I kind of just sat and thought, I realized, maybe this is something that I want to do. I sort of feel a connection to this pregnancy that I didn’t expect to have and you know, I’m just I’m feeling a way. I didn’t know I’d feel. So we had a discussion and we decided that we were going to keep it and was we were really excited. And then a few days later, I had a miscarriage, which is super common in those early pregnancies, but you know, it was devastating as it is in any stage in a pregnancy. So after recovering from that a little bit, we still wanted to try and we still wanted to go down that path that had been presented to us. So we did and fortunately, we were pregnant a few months later.
P: So it sounds like it was easy to get pregnant the second time.
T: It was
P: good.
T: Yeah.
P: So that’s great. That’s one hurdle over. And then this time, you’re excited to check the pregnancy tests, I’m assuming.
T: Oh, yeah. Yeah. Super excited. My big reveal my husband had to go to work trip to Arizona when I was able to take the pregnancy test. So I was flying down to visit him while he was working. And so it took the pregnancy test and my carry on, and I wrapped it up in a little plastic bag. And I picked up In & Out on the way to the airport and I put it in the bag with the double double is like the happy meal price. So yeah, we it was it was all a big party. We were really excited.
P: That’s a cute reveal. So that’s exciting. And then what’s the first trimester like
T: first trimester was pretty good for me. As far as you know, I didn’t get very sick and I didn’t have a lot of problems. The complications for me started to start about I’m sure the second trimester when I had to get the gestational diabetes check. And I ended up getting diagnosed and it was a case where I couldn’t control it no matter how hard I tried with diet, you know, I counted out all my grapes and didn’t do anything that I wasn’t supposed to do, but it just like would not work which was extremely disheartening and induced a lot of guilt. Because it’s like, no matter how hard I try, no matter what I do, I can’t make my body it feels like safe for this child.
P: So there are a lot of different ways to respond to that right to some degree. Your body has already shown that it has a pretty good autopilot in that like you can get pregnant and you’re you’re pregnant and you don’t have any control over that chemistry. Right. It is what it is. But for some reason you’re feeling guilty over the gestational diabetes, which I also assume is like a chemically induced shift in your ability to process blood sugar that you also don’t really have that much control over.
T: No, no, I don’t. Nobody does.
P: Right.
T: But you know, there’s just like any sort of condition. You go and you try to find your answers. And there’s a lot of conjecture about, oh, well, maybe you should have been this weight when you got pregnant or maybe should have thought of that before. Your parents had diabetes are all these all of these things that make you second guess yourself?
P: Is it in your family?
T: Yeah, I have risk factors from both sides of my family, which isn’t necessarily a indication that you will get it but it does of course. Yeah. increase your chances. Yeah.
P: Well, that sounds hard. I flirted with gestational diabetes, which is to say like, I think I had to do like a week long trial where you prick your finger with a needle to measure blood glucose levels at home, which is so wildly unpleasant. I think after day three, I was like who do you say, Well, I don’t eat. There’s no reason to, you know, to scrap the whole system. So that sounds really hard to do. You have to prick yourself every day. You’re nodding yes. On paper. It’s a small thing, but in reality, I thought it was really uncomfortable from the oh my god, the middle of the second trimester.
T: Yeah, right about then yeah, I started to have to do the finger pricks. And then like I said, I couldn’t control it with the diet alone. So I started having to take insulin, and the amount of insulin I had to take just kept going up and up and up. And you know, which was also really distressing. You know, as the vile just kind of keeps like going and going and going and you have to stick it in your stomach, right? Yeah, like, I mean, obviously, I know. Like scientifically or biologically I can’t hit the baby, but it still feels like you’re just jamming it.
P: Yeah. That’s not a great visual. No, I agree.
T: No, it’s not. It’s great.
P: So we took some questions about gestational diabetes to an OB today and we’re lucky enough to have Dr. Mehta Thiago on the show a fabulous OB from California who’s got a lot of experience with these issues. So Dr. Mathis Yeah, who thanks so much for coming on.
Dr. Matityahu: Thanks so much. Paulette, I love being on your show. Great.
I’m wondering first of all, if you can just define gestational diabetes.
Dr. Matityahu: So gestational diabetes is basically elevated blood sugar in pregnancy. We test for it around 25 to 28 weeks because as the placenta develops, your placenta is basically making the insulin not function as well. And so your blood sugar’s begin to run higher, and for some women, they run high enough that you’re considered diabetic. And so if you’re someone who maybe has a family history, or borderline would become diabetic later or just isn’t following a very good diet, you’re you’re likely to have issues with managing your blood sugar later in the pregnancy because your insulin isn’t working as
well,
P: I neglected to ask them to Dr. Matityahu more about the placenta when we spoke but then I found some articles that suggested that every pregnancy independent whether you have diabetes or not, involves a placenta that churns out more hormones over the course of the pregnancy, some of which block the effects of insulin, which will lead to higher blood sugar levels, the mother’s pancreas will release more insulin but if it’s not enough to compensate for placental changes, and you can end up with gestational diabetes, although there are numerous routes to gestational diabetes. If you have that condition, your needs for insulin will grow as the pregnancy progresses because of an increase in placental hormones.
P: does it feel Like any like not the needles obviously the needles are uncomfortable, but having gestational diabetes doesn’t feel like anything.
T: No, no, you don’t feel different, but only way you’d feel different is just being hungry.
P: Okay, yeah. So once they put you on insulin, does that free up the constraints on your diet or no, then you still have to eat like, grass?
T: Yeah, yeah. They still want you to have really low numbers compared to someone that you might know in your life with diabetes, like type one or type two. The numbers that a gestational diabetic has to get to are so much lower,
P: as I understand that the numbers for gestational diabetes to qualify you as as having that condition are relatively low compared to diabetes outside of pregnancy.
Dr. Matityahu: Yes, we have very strict guidelines of where your blood sugar should be in pregnancy. And so we’re super super tight with sugar control in pregnancy and blood sugar’s that may not at all be considered diabetic for someone who’s not pregnant. We consider that diabetes in pregnancy.
P: Is that because of something that a higher level of blood sugar does to a pregnancy to a fetus?
Dr. Matityahu: Yes. So high levels of blood sugar causes high levels of sugar in the amniotic fluid in the baby’s bloodstream. And so then the baby reacts to that high sugar, high blood sugar by producing more insulin and that puts weight on the baby. So now the baby starts gaining and getting like big and so the body of the baby can get if it’s uncontrolled. So really high blood sugars that are not controlled, would cause the baby to start gaining a lot of weight. So the body of the baby gets much bigger. The baby starts peeing more and so the amniotic fluid is managed by the baby drinking and peeing. And so in a person when they have high blood sugars will drink a lot more fluids and will pee a lot more to kind of dilute the sugar in our bloodstream. The baby will do the same thing will start drinking and peeing more and that also makes the amniotic fluid start to expand because now the baby’s peeing a lot more. And so it causes weight gain on the baby increase in the amniotic fluid and and it can over time they get to like the baby’s lungs don’t develop as quickly as they should. And so it so it can cause a lot of problems with the baby. So one of the problems with the baby getting so big is the baby can get pretty large, the head can come out and now the body is way too big because the baby gained too much weight and so you get what’s called Shoulder Dystocia where the baby can get stuck.
P: So aside from all the difficulty with the needles and the food, like how are you taking this emotionally because it sounds like you’re someone who’s detail oriented. So that seems like
a lot of pressure.
T: Yeah, yeah. You know, it was sort of back to the days when I was in college and on Weight Watchers and writing down obsessively everything I ate and being really obsessive about food and yeah, it was extremely depressing just feeling like no matter how hard I tried, it wasn’t good enough and just being worried that something could go wrong. I think it’s a really common condition but a lot of people don’t really understand it. Like so many things with pregnancy. It’s like unless you’ve actually been with child you don’t know it exists. Like I had to explain it to everybody in my life.
P: Oh, that’s interesting.
I’m wondering if we know why sometimes you can control diet and sometimes you can’t.
Dr. Matityahu: We can’t predict we don’t know. What we know is if you can control your blood sugar’s by diet, or even if you’re controlling them with medication, the baby’s going to do great for women that can control it with diet. We don’t even consider them high risk. That you know you have gestational diabetes, but if it’s diet controlled, you’re a normal risk pregnancy you’re not even a high risk pregnancy. Once we give you medication, we consider it a little bit higher risk pregnancy and so we follow that pregnancy differently. Can we predict who’s going to do well with diet and who’s not? No. And a lot of times even for women like Tabitha who are incredibly meticulous in like cutting out almost all sugar in their diet and doing like the perfect combination of foods doesn’t always work. And, and yeah, and so women also will easily feel like I’ve failed because I have not been able to control how my body responds in all aspects of life. And yes, the reality is we don’t have the ability to control how our body responds in all aspects of life. And we just have to let that go. It’s similar to women who end up with a C section and feel like I’ve failed. I you know, my I wasn’t able to make my pelvis deliver a baby. You know, vaginally we just don’t have control. We just have to accept that all of us type A people have to accept that like we cannot micromanage every aspect of life and how our body responds to things. And I think you know, most of us that have kids quickly learned that you know, we can’t manage how our kids come out and, and grow up either.
P: I mean, one thing that’s interesting about your experience is when things are screwed up, like on the front end, like we could not get pregnant and you do feel like your body is failing you and I you know, why can’t I reproduce and but that’s a totally different feeling than being like waist deep in a pregnancy and having things go a little topsy turvy because now there’s no way but through, right. So that’s a little s and now like you’re very much thinking about the baby that you’re growing and how’s this affecting him or her and like it just seems like it’s a much harder thing to manage.
T: Yeah, yeah. So it just caused a lot of stress. I also had a lot of stress going on in my job. So it was kind of just compounding all of that. And yeah, it was it was a bad final trimester. So for sure,
P: also, like everyone’s telling you not to stress out right, stress is just as bad for the babies. You’re like I’m not freaking out because that’s the one thing I can control kind of not really. So that sounds like a time so take us to the day that you’re it’s your daughter, right?
T: Yeah.
P: Take us through the day your daughter was born. How do we know today’s the day? What does that look like?
T: Yeah, well with the way that my gestational diabetes progressed. I knew fairly early on that it was likely to be an induced pregnancy. Because another thing that happens when you have gestational diabetes is that the baby develops faster, grows bigger. So she already was sort of predisposed to be a larger baby. My husband was 10 pounds.
P: That sounds like a threat.
T: Yeah, it’s not good. When every time you go to the doctor, you get this like ooohh face when they ask about it. So yeah, it just sort of was coming from all sides there. And we kind of had like this tentative date for about a month. or so. So I was sort of working with that. And by that time, I was going into the doctor at least once a week to check on it. And the day before we went into the hospital. It was let’s see. Over a week before this date that we were going to originally induce my doctor, she ran some tests, looked at some things and she said, oh you know you’re kind of borderline for some things and I don’t know I’m sort of thinking we should maybe have the baby sooner and ask okay sooner, like this weekend or what? No, why don’t you come in tomorrow morning. So all of a sudden, I mean, this was a I remember it’s a Wednesday so I had just come off work. hadn’t really obviously prepared to be going yet. But honestly, that was kind of my silver lining of having this condition was sort of the feeling of control and knowing when it was going to happen even if it was like 12 hours.
P: Yeah, yeah.
T: So like nicely packed my bag. We stopped at Starbucks on the way to the hospital. I dressed up and took a selfie by the doors. I mean, it was it was very that so that was sort of a little bit of retribution for all the stress but
P: I like you making the most of it. That’s that’s a good way to do it. Let me ask you before we get to the actual birth, are you imagining giving birth in a tub surrounded by angels strumming harps, or like what what what image did you bring to the delivery?
T: It was so hard for me to imagine because I did all of the classes that the hospital offered and did all of those things and it was all centered around a natural uninduced birth, or they also have a lot of good information for mothers that were getting a C section, which is great, but I kind of raised my hand and asked what happens when you’re induced and they’re just like didn’t really have a very good answer. We toured the hospital before we went so I did see the little jacuzzi and I thought that sounded cool. But yeah, the reality was that with the monitoring for preeclampsia and everything I had to be stuck on an IV the entire time. So all my dreams were very quickly squashed and I just sort of wanted things to be, you know, I want to make use of all the drugs, very happy with modern science love it. So my birth plan was all laid out with those sorts of things. And I remember bringing the printout and pointing at them and everybody just basically was like Oh, cool. we’ll recycle that for you. Yeah,
P: great. That’s a lot of support at the hospital. New Plan.
T: Yeah,
P: so you check in when you’re supposed to and have a blackout I feel like induction is usually thought of as kind of painful because it’s your like ginning your body up in a way that puts it on a schedule that might not naturally be on, which is a hard thing to manage.
T: Right? Yeah, it wasn’t. It wasn’t painful, especially at the beginning, basically, the first 24 hours when I started taking the initial medication. Were just boring, you know, just sitting in the hospital and since I did have to be hooked up and monitored and poked. They took my numbers for my diabetes every couple hours or whatever. I couldn’t go up and move around, but couldn’t go sit in the tub and couldn’t do a roll around on the ball. You just had to sit in the room. And I remember binging probably 20 episodes of restaurant impossible with Robert Irvine. So I always, you know, kind of think of him when I think yeah, the hospital and so yeah, it was just kind of sitting and just trying to figure out if something was happening, like just sitting and trying to listen to my body, you know, is anything happening? How will I know what’s happening? And I think that was another issue I had was that I didn’t know what labor pains were going to feel like. And I don’t know how someone has to describe that to you. I don’t know how you prepare for that. But what I was thinking was not at all accurate. I am going to go ahead and blame Hollywood and producers and directors because every TV show and movie it made it seem like someone was stabbing you in the gut kind of pain. When it’s actually that feeling that you have to take the world’s worst shit. It’s like the most terrible constipated sort of feeling. So since I felt like that I kept getting up and going to the bathroom thinking I had to poop when I was really starting to have contractions. So oh my gosh, I was really far along by the time I finally asked for my epidural. I think I was I can’t remember like which centimeters or which at this point, but it was like they were kind of saying I’m glad you told us now because you weren’t getting really far along before kind of raising your hand and saying I might be having the baby. So that’s when things started to get painful was when it finally kicked in 24 hours or so later. And that wasn’t so much I don’t think that I was induced it was just sort of the way Well, no, I guess it was sort of that I was induced because some of the things they had to do. They might not have had to do if it was my body’s natural response, like they had to go in and break my water. And that was the most uncomfortable and painful thing in the entire process.
P:Wow.
T: Yeah,that really was awful.
P: Because the cause the getting the thing in your cervix is painful or because the actual breaking of that amnion is painful.
T: Kind of I’m not sure which was which but the whole thing and they had to use the needles so they poked my daughter in the head. You know what she did? I was fine, but it wasn’t fun for anybody. And
P: also when they bring it in, I’m sure you’re like get that crochet needle away from it. Right Like what are we doing here?
T: It’s really terrifying. Yeah. And it was the middle of the night. It was must have been like 3am or something. So everything is very surreal. Yeah, very bad. And then after that, because it was about 5am that I got my epidural. And they missed my spine with the needle. So they had to do it twice.
P: Oh that’s bad
T: Oh my God…But then again, it’s, I think when you’re at that point, it’s just like whatever. I don’t care.
P: I remember being terrified of delivery and I got some comfort from the fact that I knew that at some point, things on the outside would be so bad that I would say, Do whatever you have to to, you know, the threat of an epidural needle seems small compared to having my body crunched from the inside, right. So
T: exactly. Yeah, yeah, you can just whatever, whatever makes it go faster, whatever makes it over. I don’t care. Take my fingers. Take my toes.
P: Yeah. So you get the epidural and then does that calm everything down because now you can’t feel it or where are you?
T: It did a bit but then Yeah, it did for a while. I remember a few hours where I kind of fluttered in and out of sleep. But then slowly those contraction pains started, you know, making their way through the medication I could. I really felt that that was coming. I remember telling my husband you need to go get the nurse now. It is time. It’s amazing how much you know it is time. I had no idea when to know but I did. And unfortunately, I thought that I thought my worst case scenario was like okay, well, once I get to this point, it’s going to be 45 minutes or so. I had to push for three hours. Three hours.
P: yeah that’s a long time. That’s an amazingly long time.
T: It was so long, and I don’t know how. I don’t know how I did it. You know, it’s it’s exhausting. It is the most exhausting thing I’ve ever done or will ever do. And, you know, it’s really easy to say from here. And from before and from any other angle that well you always find a way to do it. Your body knows what to do. It’s natural. Okay, yeah. But when it’s happening, you really feel like you’re going to die. There feels like there’s no other alternative than this is just going to destroy you. And I guess it kind of does in a way. I mean, by the time you’re done, you really are a different person.
P: Yeah.
T: You’ve been through something that I don’t think is necessary. I don’t think anybody has to go through childbirth to you know, live a full life or experience things, but that very specific feeling is just so I don’t know how it could be recreated in any other capacity.
P: Yeah, I mean this to some degree, which is ironic in a conversation between two writers but is something that kind of defies language, which is why no one can tell you what it’s going to feel like when you’re having contractions There are no analogies that are fitting, right. So usually you can sidle up to something similar, but there’s not really anything that’s like it.
T: Yeah, no and yeah, the funny story was my doctor or the doctor who was delivering the baby just kept telling me with each push, one more push, and then you’re a mom. One more push. Gonna be and this went on like five or six. times and I just like screamed “where’s my baby?”.
P: Yes, this is very much like it’s just around the next bend right there. Yeah, that sounds frustrating. So but once the head crowns and all that then it was quick.
T: Yeah, yeah, I had to have an episiotomy which was in my birth plan is don’t do that. But when they brought up the options, like yes, anything now, yeah. So there was you know, that kind of final complication, which also I was surprised how long that took honestly to recover from postpartum you know, I had a lot of issues with sort of pain and things with it and sort of feeling it being there for probably six to nine months after giving birth. So I think, you know, I think it’s a good thing that it was done, but you know, it’s also I think it gets brushed off a lot like, oh, it’s not that big of a deal. But it’s, it’s kind of a big deal. It kind of really sticks with you for a while.
P: Yeah, I wouldn’t I wouldn’t even say kind of, I would say and actually a big deal and it’s a little bit like it falls into the postpartum black hole. And you are everything falls where you just we don’t talk about it anymore. And I find in the discussions of pregnancy, there’s a constant kind of conflating of common and easy
T: hmm,
P: episiotomies maybe common, but it has these real repercussions as you have experienced for a long time, you know, postpartum as some people think it lasts a year after birth, right, which kind of makes sense because at six weeks, your uterus shrinks down to its normal size, but there’s so many other things that don’t either never go back to the way they were or take much longer to heal or so six weeks is kind of I think the date we all have in our head, but right it’s a little bit false. Yeah, I’m jumping ahead a little bit. Your baby is born. They put her on your chest.
T: For a second, and then they had I think she had some of that fluid. So they had to really quick like grab her and start doing some things that really alarmed My poor husband, who could actually see them. But no, she was she was great. She was fine. Of course, the most beautiful thing I’d ever seen and all the all the good things all the good, happy feelings for sure.
P: That’s awesome. That feels fitting after three hours. And then what happens to gestational diabetes does that how does that resolve?
T: Fortunately I the first thing that I made my husband do after I had given birth and kind of got the all clear like okay, you can take a drink of water you can have some food and a little bit. I sent him down the road to Five Guys. He had to bring me a double burger fries and a milkshake. He didn’t think I could finish them which was hilarious. Yeah. after that. But uh, yeah, so they have to test you they keep testing you on when you’re in the hospital to make sure nothing weird happens. And then for the rest of my life, I’m going to need to be screened for diabetes, I believe on a yearly basis, especially with my family’s history and everything but so far I’ve I haven’t had any signs that it’s back or it’s coming back. And neither is Sophie. They have to check her a little more to because that does raise her risk. But no, it’s it’s gone.
P: If you have gestational diabetes doesn’t resolve with the birth.
Dr. Matityahu: Yes, once the placenta comes down, then you go back to having normal blood sugars in the future. About 50% of women can develop diabetes. We usually have women we remind them like every year or so check your blood sugar to make sure that you’re still doing okay.
P: And we think that’s because the pregnancy exerted this extra stress on their body and that has changed the trajectory or we think they were going to get it anyway or there’s no way to know.
Dr. Matityahu: It’s more that they were they were at risk of getting it anyway and with the placenta causing an issue with their insulin. It pushes them just over the edge while they’re pregnant. But if they continue to have a high carb high sugar diet for the next five or 10 years, then they’re going to continue to push their body into becoming diabetic. A lot of diabetes is diet related and not for everyone. So it’s not to say that everyone that has diabetes is has a poor diet because that is that’s not it at all, but but for a lot of diabetics is that we’re giving our body too much sugar and our body’s insulin can’t handle it. And so our blood sugar ends up being high and for some diabetics that’s the issue for others. It doesn’t matter. You can have the most strict, you know, low carb diet and you’re still going to have issues with your sugars because for some people, they just have issues with their insulin production and it has nothing. It has nothing to do with how well controlled or strict they are with their diet.
P: Other than physically healing. How did you find the fourth trimester?
T: I wasn’t I wasn’t prepared for it. I’m sure that might have been said before once or twice Yeah. I was not prepared at all for the hormonal issues and changes. I didn’t sleep for about the first week after having her and it was it was literally making me insane. I felt like I was losing my mind. And I got misdiagnosed. When I called the doctor as having postpartum depression, which wasn’t my issue. It was just it was more I have anxiety. So it was the anxiety manifesting itself. And so the combination of not being able to sleep and the anxiety of just, you know, when I lay down to sleep, and she’s right next to me, I’m like, listening for to breathe, afraid that something’s going to happen. Or on the reverse side. I didn’t have this is like tripping me up. I didn’t want to miss anything. I didn’t want to be asleep while she did something. And I would miss it. I don’t know what I was looking for. You know her to sit up and start talking to me or something. But I felt like the time that I was there was so important. And so precious that if I slept it would it would be gone or something.
P: I mean there’s there’s something real there right like they are one day old once that’s it ever again. So so and they develop so quickly in that period that there’s a lot there’s a lot going on. There’s a lot to watch. There’s a lot going on
T: I also had a lot of trouble because of being induced. my milk would come in. Yep. So I had physical problems feeding my daughter I was going to try and breastfeed. It wasn’t the end all be all to me. I just wanted to make sure that she had food. So when I started having troubles, I wasn’t opposed to using formula or any of those things. But the frustrating and heartbreaking part was you know, she’s telling me she’s crying and she’s telling me that she needs to eat, she’s hungry, and I physically can’t help her I have to wait for my husband to go in the kitchen and mix up a bottle. And so that was really heartbreaking. Not so much that we had to make a change but just that in those moments where she needed me, I couldn’t immediately help her. The way I wanted to
P: and did that wane as she got older because you got more in a rhythm or didn’t have that the whole time?
T: Yeah, I think I continued for about two months to try and feed her breastfeed her and and I supplemented with formula. And by that point, it had become so unpleasant for me. And obviously unpleasant for her because if it’s not pleasant for me, it’s not going to be pleasant for her. And also she was just very not interested. You know, she learned like, oh, this bottle is already to go and I don’t have to do anything. So why am I messing around up here? Yeah. So you know, she was more into that and the process of trying to pump and everything was making me miserable. So one day I had to do a long drive to visit family and during the drive you know my I got those painful over just painful feelings and I just got to home I’m like I’m done. You know, I feel like my body has sort of stopped gotten angry. We’ve done some things during this drive. So we’re just gonna donate the equipment and move on. So
P: yeah, that seems smart. I mean, if you think of all the things your body is doing to get pregnant to stay pregnant, to grow a baby to deliver, and then also to breastfeed, you know, you’ve done like 87 of them. So, all of which are amazing, right?
T: And it’s very weird to see one of my sister’s best friends. She had her baby right around the same time we all kind of clustered together and she was posting on Facebook saying I have so much extra milk and is taking up all my freezer. How is that possible? If I I was taking cell phone pictures of a vial like this big that I’m able to fill like I am having an amazing day and other people are filling up their freezer. It’s very inequitable, it feels like
P: Yeah, yeah, it is like randomly distributed. Yeah,
T: right. Exactly.
P: So how old is your daughter now?
T: She’s just shy of two and a half. Yeah, she was born in September 2018. So Wow.
P: So just before the pandemic,
T: she turned six months old when the lockdown started. So we were just you know, at that point where the newborn infant days was ending, and we were going to go into the world. And then everything stopped. So
P: wow, you’ve been one of the people who’s been shut in with a runaround baby. How’s that going?
T: Yeah, I it’s been very difficult. But at the same time, I am infinitely grateful that she was here. Yeah, it definitely shifted sort of certain priorities. And it shifted different priorities and timelines for our family. So you know, we’re going into six months old and I’m thinking, Oh, we have to start planning your first trip to Disneyland. Oh, we’re going to go to the zoo all the time. You know, all these sorts of social, fun, interactive things. And then all of a sudden, we’re right back into the space we were in, which was a small house that had been purchased. When my husband and I were envisioning a life where it was just the two of us. And it was small. It wasn’t very kid friendly. All these things which wasn’t going to be a huge problem if we were out doing things and having a life out in the world. But then all of a sudden, we were spending all of our time in this small house. So instead of the life I think we were looking at with her for when she was a toddler of doing traveling and doing this class and that group and all these things. We concentrated instead on moving so we’re in a new house or in a bigger house. So that’s been a huge positive change, because there’s so much more room for all of us to move around. Plus, yeah. And we weren’t also not planning for my husband to be working from home for most of two years.
And that’s another silver lining because he’s been able to bond with her in a way that he never would have been able to before the pandemic. She’s really close to her dad and it’s really beautiful, to see that relationship, and also just have that support. I mean, even now when he’s home, it’s nice to just be able to run outside and get the mail or drive out and pick up some curbside groceries without having to necessarily take her with me. It’s just an extra pair of hands and eyes that is super helpful but you know also sometimes you just want to do things yourself and have your time so just the same as anybody. There’s a lot of that give and take with balancing everybody in the same space.
And when I was growing up, my mom was a stay at home mom too. And so, I wasn’t initially planning that for myself or for us. I had a situation with my work where I was going to take an extended maternity leave unpaid so I saved up for all my pregnancy so we’d be able to survive a few extra months, but it was really important to me to be able to be with her for those first six months. Because, I mean, I was very privileged to be able to do that. I think everybody should have that option.
P: Yeah,
T: well, weeks is nothing.
P: Agreed. It doesn’t make sense. Yeah. Yeah.
T: Unfortunately, a few weeks before I gave birth, my company rescinded our agreement. Until me I’d have to be back within 12 weeks. And by that time, I had already made my child’s childcare arrangements with the original timeline in line. And as you know, as any mom or dad knows, finding a daycare and setting up that timeline is not a simple task. Does not magically shift on a dime. You know, I was on waitlists for daycares that I didn’t hear back from until she was talking. So
P: yeah, yeah.
T: So it really kind of forced me to say okay, well, I am going to have to quit this job and stay home with her and that wasn’t my plan, but faced with either I mean, you know, no childcare or
so, once I made that decision once our family made that decision, I thought a lot about my childhood growing up and what my mom was able to do with me. And my favorite memories and those are all really simple things. Those are going to the park and splashing around in the pool, the public pool and doing picnics and all of these things that she was able to do when we were able to do together. And that was super important to me to give to my daughter and experience with her. And so not being able to in so many ways. In so much time you know there’s been those patches here. And there where okay, we’ve gone to the zoo, and then we can’t again this not going back and forth. That’s been really for sure painful and just makes me feel like I’m not not giving her what I wanted to Yeah,
P: although I totally hear what you’re saying. For every parents of every kid at a different age. There’s something that’s being sacrificed in the pandemic. But yeah, but for all of us who are lucky enough not to get sick or get over the sickness quickly. There’s also something gained for like every single age I have friends whose kids are in college and they say like, oh, the kids had to come home and now we get to spend time with them in a way we never would have gotten before and it sounds like your husband has gotten this amazing gift of it and you have the gift of your husband getting that gift right so there are all these things that kind of no way to manage this easily or beautifully. And this is sort of how it falls so I can see how it’d be a bummer if you had plans for music school or all that stuff to be gone but I’m imagining now your two and a half year old has an amazing vocabulary. I haven’t been around to adults. for them.
T: It’s insane. I can’t believe the things she can say and do and you know that’s of course me saying and I haven’t been around enough kids to know but it certainly seems impressive. She knows she has a state puzzle. And she knows almost every single state by sight and can assemble America. I still that’s
P: that’s amazing. That’s amazing. My high school seniors like where’s Illinois?
T: Exactly.
P: Kudos to you. Well done. So does she have any tricks that you want to talk about at two and a half?
T: She keeps asking Alexa for her favorite songs. So right now it’s always Alexa, talk about Bruno.
P: So funny. Talk about digital natives. Good Lord.
T: I know it’s awesome.
P: Very fun. So here’s a question for you even though she’s pretty young still. If you could go back and give younger Tabitha advice about this process. What do you think you would tell her?
T: I think I would say just to keep trusting your gut and not what not even what other people think. But what you told yourself you were going to be and what you were going to do. You need to stop holding yourself to what you were thinking when you were 10 or 20 or even 30 Because yeah, I needed. I trusted my gut when I had my first pregnancy and changed my mind. I trusted my gut when I thought that I’d have to quit my job. And you know, all these all these times that I made decisions that I never would have thought I would have made and probably wouldn’t have supported. Somebody else making To be honest, but they all turned out to be the right thing. Or the thing that has brought us to the here and now which fortunately, is a really beautiful, wonderful place to be we’re really lucky. So yeah, if I would have kept trying to be the person that I thought it was going to be. It would be a miserable mess for nobody but me.
P: What can you say but that a lot of life is experiential…10 or 20 or 30 year old you couldn’t have imagined a lot of the events that happened–getting pregnant despite using birth control correctly? The flip flopping of your work agreement? That sounds like good advice to follow. I wish we had more time to talk about your writing.
I’ve read some of your work. You’re beautiful writer. Where can people find your stuff?
T: My website is Tabitha blankenbuehler.com. And I’m the only type of the blank and biller so if you find it, you’re there. That’s good.
P: That’s good to know. Excellent. Well, thanks so much for coming on and sharing your story. I certainly appreciate it.
T: Of course. Thanks for having me.
P: Thanks again to Dr. matityahu for sharing important information about gestational diabetes, and thanks also to Tabitha for sharing her story. I regret that we didn’t talk about her writer, she is a beautiful writer; I will leave links to her website in the show notes, where you can also find links to some of the medical issues that came up. You can find those show notes at war stories from the womb dot com. Thanks for listening. We’ll be back soon with another inspiring story.
Episode 42 SN: Anything But Restful, a Bedrest Story: Aileen
If there’s one thing I can relate to directly, it’s the story of a high risk pregnancy. But the pregnancy that my guest encountered was something I have no first hand knowledge of: she ran into an issue that threatened a premature birth, which caused her doctor to prescribe bedrest–for five months, 150 days for anyone who is counting–of being horizontal, she was more or less plucked out of normal circulation and we talk about what that was like and how she managed it, in the midst of also juggling a move from brooklyn to a farm, which in part means a move from an apartment to a 100 year old farmhouse, and everything that comes with this dramatic change…
You can find more about Aileen and her work at her website www.aileenweintraub.com
Here is the amazon link to Knocked Down: A High Risk Memoir
And here is the link for signed pre-orders
Fibroids
https://www.mayoclinic.org/diseases-conditions/uterine-fibroids/symptoms-causes/syc-20354288https://www.uclahealth.org/fibroids/what-are-fibroids
https://my.clevelandclinic.org/health/diseases/9130-uterine-fibroids
size of the uterus
Bedrest article by Dr. Mazaki-Tovi (et al.)
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0198949
Audio Transcript
Paulette: Hi Welcome to War Stories from the Womb. I’m your host Paulette Kamenecka. I’m an economist and a writer, and the mother of two girls. If there’s one thing I can relate to directly, it’s the story of a high risk pregnancy. But the pregnancy that my guest encountered was something I have no first hand knowledge of: she ran into an issue that threatened a premature birth, which caused her doctor to prescribe bedrest–for five months, 150 days for anyone who is counting–of being horizontal, she was more or less plucked out of normal circulation and we talk about what that was like and how she managed it, in the midst of also juggling a move from brooklyn to a farm, which in part means a move from an apartment to a 100 year old farmhouse, and everything that comes with this dramatic change…
I also included a conversation with a researcher and professor of obstetrics and gynecology from Tel Aviv who, with colleagues, recently published some groundbreaking research on bedrest. He is incredibly interesting, and I regret that the recording quality from our conversation is not perfect–but I think you’ll want to hear what he has to say…
So let’s get to this inspiring story.
P: Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Aileen: Hi, my name is Aileen Weintraub and I’m from Brooklyn, New York. And I moved to the Hudson Valley about 20 years ago. And that’s where my story really starts.
P: Alieen. Thanks so much for coming on the show and I’m excited to hear the story because I read your book Knocked Down, which was awesome. I’m assuming not all the bits made it into the book. So I’m excited to hear the details straight from you. Do you have any siblings?
A: Yes, I have one older brother, who is still in Brooklyn with my family. And we have a great relationship. We didn’t always have a great relationship and actually, my experience with my pregnancy really brought us together.
P: Wow, that’s nice.
A: Yeah.
P: And did having a brother or growing up in your family create a desire you to have a family of your own?
A: Yes, absolutely. So I grew up in a conservative Jewish community. And the emphasis was on family. And I was really born and bred to have a big family. I was taught how to be a good wife, a good mother from a very young age and I wanted a lot of children. And so when I became pregnant and ended up on bedrest and had all these complications, it kind of changed my plans in a big way. And so that was really hard to, to take in and live with.
P: Okay, so that’s totally interesting. So when you were thinking of a big family, were you thinking of like six kids?
A: Exactly. That was the number I had in my head that I was gonna have six kids. I was gonna be like Mary Poppins is going to be amazing. They were all going to just surround me. And you know, the birds would sing when I got up in the morning and it was it was a total fantasy, and obviously it didn’t work out that way. And and that was a lot to come to terms with
P: like you are I have imagined a big family. Not I wasn’t so ambitious for six. Although when I see families like that, I’m like,lucky. So does that mean that you walked into pregnancy, imagining it would be easy?
A: Yes. So by the time I became pregnant, most of my friends already were on their second, third kid. And I just assumed I would get pregnant and have an easy pregnancy and just start popping out kids and, you know, maybe work maybe work part time and that would just be my role for a long time. That’s really what I wanted. And it was shocking to me. And so it was a big disappointment when I was faced with all these complications and realized that that wasn’t going to happen for me.
P: Okay, so let’s walk into this. Was it easy to get pregnant?
A: Yes, it was very easy to get pregnant. And there’s actually a very funny story, which I I talk about a little in my book. It was New Year’s Eve, and my husband had the flu. And he was he was so sick, but you know, we were still newlyweds. So we didn’t even wait we got married. And really, this is the plan. Let’s start right away. And so it’s new year’s eve and I was ovulating. And I was like, Listen, this is it. And, you know, and it was super easy on me. And I got pregnant immediately. And so
P: wow.
A: I thought that was a great omen. And the first few months were typical. I had morning sickness, but nothing I couldn’t deal with. Yeah, that was a little surprising for my husband, you know, he would cook dinner and I would I would be like you’re cooking fish you can’t cook fish in this house. And so that was a learning curve for him. But other than a little things that you you would expect everything was completely fine. And then one day we were walking in New York City we were just strolling It was a beautiful spring day. And suddenly, I felt this pain in my lower belly.
P: wait, how far along are we here?
A: Right so I was four months along. Okay. And we were planning to go to a baby event where they showcase different baby products and, and things like that interview information, pamphlets. And that was the thing I was so into, like all these baby books and I was prepared. I was going in prepared and I was reading everything, researching all the safest products and it was all happening that day. Suddenly I have this pain and I don’t know what to do. So we decided to pack it up and go home. I call the doctor and of course you don’t get to speak to your doctor. You speak to the nurse if you’re lucky. And she kind of dismissed my symptoms. And said your probably find everybody experiences like cramping and things like that. And she wasn’t really taking me seriously but I was also kind of relieved because that’s what I wanted to hear.
P: Totally. Yeah.
A: And it was getting worse and worse and I happen to have had my appointment the next evening anyway, just my regular exam. And I’m assuming that everything’s going to be fine. You know, even though this pain is persisting. As we go into the exam, it’s later in the day. It’s almost evening I think I might have been the last appointment and you can see the doctor looked carried and rushed and wanted to get out of there.
P: Yeah, that’s a bad sign.
A: And I wanted to get out of there too. We had plans to go to this cute little restaurant on the water in Kingston. And all of a sudden, the energy in the room changes she’s saying something, I can’t even process what she’s saying. But I look at my husband’s face and I see the look on his face, and then it all kind of comes together. And I’m being rushed into an emergency sonogram and it turns out that I’ve three huge fibroids in my uterus
P: Okay, so here’s a quick primer on fibroids. If you aren’t familiar with them, uterine fibroids are non cancerous growths of the uterus, thing grow inside the walls or inside the main cavity or outside of yours. Many women have fibroids and don’t know about them because they might not cause any symptoms at all. Researchers from UCLA estimate that 70 to 80% of women will have them in their lifetime and are more likely in your 30s and 40s. And right around menopause. It can be a variety of sizes. To give a sense of dimension here and to maintain consistency with a fruit theme that will emerge later in the episode. At the end of the first trimester, the uterus is the size of a grapefruit and it grows to the size of about a watermelon by the third trimester. fibroids can be the size of a pea or a much bigger mass. So size and placement and the number you have may determine if you run into trouble with them or not. And for the magic question, we have no answer. We don’t know what causes their development
A: and one is pressing on my cervix, causing early effacement. And she basically says to me, you’ll be lucky if your baby makes it to 24 weeks.
P: Good Lord. Oh my God,
A: it was so shocking, because just the day before everything was fine, and we were horrified
P: so let me ask you something ex post. So my fibroids or anything like that, but I also got very direct and not positive news from the OBS. And in retrospect, I understand it as they’re managing my expectations. How do you feel about that kind of response to now do you still think it’s not appropriate or what do you think of it? Now?
A: that’s a really good question, because I think it’s important for doctors to manage expectations. But I also think there’s a way to do it, where you’re not putting so much fear and anxiety into the person you’re talking to.
P: Yeah,
A: who’s already feeling so emotional. So raw and so vulnerable. And I think there’s a balance
P: Yeah, you’re right. The other thing that helped me to process that kind of thing is to remember that my doctor is a person and just like me get’s nervous about stuff and Dr. Raven freaking out and unfortunately she entirely sure that with you.
A: Right, exactly. And you can tell she was already tired and but that’s not an excuse when you’re delivering bad news. You have to have some sense of professionalism and, and she was she was professional and she was a good doctor. I don’t want to say that she wasn’t doing a good job. It was just very overwhelming in that moment. And I’m not one who needs things sugarcoat it, I left information. I understand the doctors job is to be a doctor give me the best care the doctors job isn’t to be a therapist. But the healthcare community I feel like is especially when it comes to women’s health and maternal health has a long way to go. The way they speak to women, the way they speak about women’s bodies and the terms they use. So for example, the word incompetent cervix,
P: yeah,
A: is so offensive to begin with
P: agreed.
A: What it does is it puts shame on the woman before they even understand what’s going on. Yeah, my left feeling I had caused this. Yeah. You’re basically saying there is a part of you that is incompetent.
P: Yeah, yeah. Yeah.
A: And they’re these terms are outdated. There’s terms like hustle uterus, geriatric pregnancy. All these terms should be retired and we need to change the dialogue on that.
P: I totally agree. I’m maybe in the shownotes or at the end of the episode, we’ll try to rebrand incompetent cervix. You and I right here. Make it happen. Well, that’s a terrifying prognosis. And then she send you home or what do you do with that?
A: so the next day she had sent me to a specialist. I can see and the specialist basically confirmed what she had said but made it sound a little less tragic. So he did the job of saying okay, you know, we’ve got this going to go on bed rest for five months. And we’ll see how it goes. And hearing that bedrest for five months to just expect a woman to check out of life. Almost half a year to become basically an incubator is a big thing to expect. And it shouldn’t be something that is done lightly and at the time, almost a million women a year were put on bed rest. We are lucky to
P: When I started to research the issue of bedrest, I came upon an article published in 2018 published by a group of doctors out of the Sackler School of Medicine in Tel Aviv and they used a brilliant technique to really get at the heart of what bedrest does and doesn’t do and we are lucky enough to talk to one of the paper’s authors: have Dr. Misaki Toby on the show a Professor of Obstetrics and Gynecology, and a researcher who has investigated the efficacy of bedrest for a variety of outcomes. Dr. Mazaki Toby, thanks so much for coming on.
Dr. Mazaki Tovi: Thank you very much for the time. Thank you for having me.
P: the Idea for bedrest came up in the 1830s I can’t remember what that said you know what, what instigated that idea,
Dr. MT: the root of the to do and the the initiative for this bill was actually came from orthopedic issues. We’ll come to think about it. It’s it’s it’s a logic if you broke a leg, somebody that you will not have you’ll have a bedrest and will not put a stress on your broken leg. And then obviously, it was extended to other disciplines in medicine. And another thing that I must say that actually may facilitate the use of bedrest in obstetrics is the fact that 100% of the population is women. So, yes, I must say that well, my my feeling is that if you have to prescribe that was for women and to men and that can be a manifestation of prejudice against women because you said okay, usually, you know, the other spouse in the provider. and the women you know, they should be at home to begin with, so if you’ve discovered bedrest then you didn’t have given harm too much. So my feeling is that said that we’re dealing with women with actually made the dependences so to speak of this treatment to set rates a little bit easier.
P: That’s a whole lot of outdated there. That’s a whole lot.
Dr. MT: Absolutely.
A: and now finally, I’m starting to read a few articles and journals here and there about how doctors are prescribing it a little less, but it’s still very prevalent. And I think we don’t take into account not only the physical aspects of what it means to be on bedrest. The mental load that it’s putting on a person who has to lay there for five months and give up their autonomy. Their finances have to shift their career and that’s another place that the healthcare community can step up and provide resources. I’m not an expert, so I would never ever advise somebody not to listen to their doctor, but I would advise them to do some research and really think about advocating for themselves and making sure that they understand what’s expected and what’s not. And why.
P: and I think what we should be doing is pressing the research community. I mean, the doctor I spoke with yesterday said, part of the reason we do that is because we just don’t know and it’s such a vulnerable period. We want to be as cautious as we can. But there’s all kinds of measurable consequences of bedrest, and we don’t want to works also the way you say it, to say to a woman, okay, now you’re going to leave your job or whatever you’re doing and your family down for five months is crazy.
A: exactly they’re you’re not taking into account that goes along with invest. It’s kind of like the stock app. Oh, we don’t know. What’s wrong with you. We don’t know how to fix it. Yep. All we can offer. And more research really needs to be done and more money needs to be put into research on bed resting women.
P: Consistent with what Aileen is saying, we do need more research on bedrest, and although Dr. Mazaki Tovi’s study focused on preterm labor, and not on the specific issue that brought Aileen to bedrest, he has a lot to teach us.. Dr. Mazaki-Tovi, can you actually define bedrest? I’ve talked to a couple of obese about it. And maybe doctors mean different things when they say bedrest.
Absolutely and this is one of the difficult this therapeutic measures is exactly what do you mean by by bed rest. For some it means only that doing the work. Others is just decrease, you know the household it is for others is just practically to be a bit weird. And so there is a lot of confusion about it. And actually this so called therapeutic visual is ill defined. So the poor woman don’t exactly know what they have to do.
P: Yeah, I’m assuming that there are multiple reasons for bed rest. Why doctors prescribe bed rest?
Dr. MT: Yes, actually. The so called bed was has numerous indication it looks different than it was to prevent discourage twins. Or triplets. Also had an abortion, placenta previa. Sure, it seems that bedrest for many, many physicians and healthcare providers will seem like a silver bullet like medical therapeutic measure,that can prevent all complications indication of pregnancy and the tourists is actually the other way around.
P: So why don’t you tell us a little bit about your study on bed rest and what makes it so unique and so important in the literature on bed rest?
Dr. MT: I will say that the implicit argument bedrest is that you won’t increase your level of activity, then you will harm your pregnancy and you will harm your baby. Nothing can be further from truth. I meet a lot of high risk pregnant women, and I noticed that almost all of them had a self belief guilt, about doing too much physical activity. And this is because of this activity that nothing has happened to him with preterm labor or bleeding will discourage and so on and so forth. And that encouraged us to conduct a study in which we try to quantify the level of activity so until now, activity was not objectively quantified, that means if a physician prescribed to you a bedrest then you know exactly what does it mean and actually there is no way we can follow up and see whether or not you are indeed in bed rest.
So what we decided to do is to try to objectively quantify it and we did it by pedometer, a special device that can count the number of steps that you do a day. And we give this device to pregnant women with extremely high risk for preterm labor and we ask them to wear it for at least one week, including one weekend. It wasn’t them actually use it for two weeks or more. And one important thing that I have to do to remind you that didn’t have access to the data and also dependents women have access to the data. So we are completely blinded. How many steps each and every woman took during the study. And what we found was actually amazing, but what’s surprising I must say, found that more steps you’ve taken the the lesser risk for preterm labor. So it’s counterintuitive.
P: Yeah,
Dr. MT: so don’t do that we’re bedridden, and it takes to actually deliver earlier. So not only is not helpful can be dangerous. So we found out that if you do approximately like 4000 steps a day, that’s fine, to be no harm.
P: One thing that’s so interesting about your study is when you said you’re objectively quantifying activity, what I understand that to mean is that other studies are basically asking women to self report how much did you walk around but then I’m guessing that happens with like a survey to say a lot a little not much. Which is a super hard thing to keep track of right it’s it’s not even a
DrMT: that was the initiative. For the study, we try to quantify. We thought about the load how we how can you quantify physical activity, because as you mentioned correctly, until the study, they will only questionnaire that the dependent living had to to fill in, usually days and weeks and months. After the pregnancy and you know there is a recall bias, you don’t think that you remember what you did when you didn’t do is obviously some activities like swimming, so on were less unreported. So we decided to have a very, very objective way to measure the activity in the book actually uniqueness of the study.
P: That’s amazing. That was such a good idea. The other thing that makes you think when when I read your paper was, Oh, we don’t really understand what causes preterm labor. So it’s weird to think if you lay down it won’t happen.
Dr. MT: Absolutely. You’re absolutely correct. You know, if you if you ask the leading individual that investigate preterm labor understand that preterm labor would actually syndrome. So, you can have preterm labor because you have problems with the service and you can you may have become able to cause a problem with the uterus or with the placenta. Because you’re having to triplets. It’s all because you’re having an infection. And the idea that one solution will solve all these problems scientifically is absolutely ridiculous.
A: I Think there’s a scene in my book where I actually Google bedrest and research and there are no studies at that time where there’s so few studies but so I started just researching like, stupid studies just to see what people are actually studying. Right. And so there’s a line in my book that says, Oh, well, we now know that spider man isn’t real because someone put time and money into researching, but these bed resting women who cares about them, they’re not as important and that’s really what needs to change.
P: Yeah, I mean, your story is a good one to spotlight many things that should absolutely be known or studied at this point that are not….but let’s focus on your particular story: so you’re told you have to go on bed rest and what what actually happens.
A: So it’s really interesting because now I live in the Hudson Valley and New to the Hudson Valley. I just recently moved from Brooklyn to my husband’s rickety old farmhouse that’s possibly haunted. In the middle of nowhere, and he has just bought a power equipment business, and actually the timing couldn’t have been worse. The day we got home from the specialist was the day he signed the papers of ownership.
P: Wow,
A: this and he had to go like he’s like he dropped me off. We ate lunch and he’s like, I have this business now. I gotta get the keys and, and that just plunged us into chaos. And we had all these plans that I worked at the business, I would be part of it. I was still doing freelancing. We were financially struggling just because we invested all our money but we had a plan and that plan just fell apart and I didn’t have a support system, my whole community was in Brooklyn. So that day, I’m alone in the house. And I’m about to get into bed and I’m like, Am I really going to do this and I pull back the sheets and I was like what let’s think about this for a minute and it was a really hard decision. Especially for someone who wasn’t used to staying put for so long.
P: Are you still in pain? Or how’s that going?
A: So I was in pain for a very long time and then it would kind of come and go for a while because your uterus ships. And so sometimes there’ll be a lot of pressure. Sometimes there will be less pressure, but I was always incredibly uncomfortable. And as I’m bed resting, my body is continuing to fail my muscles start to atrophy. I develop hip dysplasia. So even if I want to walk can’t walk my hips freeze up. I develop gestational diabetes, and I have to prick myself with a needle five times a day.
P: Oh, that’s so terrible.
A: Just one thing after another.
P: I brought a question about the physical toll of bedrest to Dr. MT. So one specific issue that Aileen dealt with was hip dysplasia. Can you kind of walk us through why that would be a consequence of bed rest?
Dr. MT: Well, absolutely. You know, when you are bedridden the I mean, you have to understand that that was prescribed by the physician. So as far as we were concerned, this is this is the a theraputic measurement like taking a pill or taking the short women will do missing dependency to be successful. And the will of the women to help the dependency successful is absolutely see the dramatic power. In fact I this is the most powerful thing I ever made. So they’re very devoted to dependency are committed to dependency and then we’ll do that and then we’ll come to bed with someone will just lie down all day that not integrate only, you know only only for photonic period. Yes and nothing more. That can be disastrous for the for the musculoskeletal system, it because it can cause dysplasia and also decrease the intensity of the bones and decrease the frequency of the muscle tone and all the thing can definitely happen from just lying in bed all day
A: And theres also a scene in in the book you know, we’re in bed and I’m not getting very many visitors I did have one or two people come and bring lunch or a scone and that was life saving one of my friends actually brought me the happy days DVD at the time and and it was the most beautiful gift like just hours and hours of Happy Days. And but other than that I was really alone. You know, my mother was still working at the time. She hadn’t retired yet, and she would come up from the city and she was my saving grace and her relationship just blossomed during that time and I learned to appreciate her and all she was doing and all she had done for me that I never really understood when she came up to visit and we would talk about so many things we would talk about marriage and how hard it was to be married and understand each other especially during difficult times. She cleans she would cook she was really my savior.
P: Yeah, parenting has taught me so much about my mom that makes me appreciate all these things I look at differently now.
A: Right? All of a sudden my mother was one of the smartest people in the world.
P: That’s awesome. Yeah. So beggars sounds unbelievably hard, especially in this context where you’re away from everyone and your husband’s gone and you’re just alone in the house with the ghosts all day, right? Is there any magic? How did you get through it?
A: How did I get through it? I get through it one day at a time and actually one of the things that helped me get through it was writing about it. You know, I’m a writer, and suddenly I couldn’t spend a lot of time writing. I couldn’t balance the laptop laying down. I was in too much pain. And so I began writing these little journals about my day and trying to find humor in my day. Even though things were so hard because I really feel like even when there’s so much trauma, if you can find a little joy or something a little ironic or little funny, really helps you get through and so I started writing these one or two paragraph journals, and I emailed them to my brother or my friend just as kind of a connection. And that was really when my book was born. Those were the seeds from my book and from those journals. Years later I went back and read them and each chapter was basically from a journal.
P: That’s very cool. I will say that the medical experience provides a lot of absurdity. So there’s it’s right there’s things that I think people in medicine experience daily which are new to civilians like us when we go in. I feel like there’s a there’s a pretty wide divide between those two things which can sometimes be entertaining unintentionally.
A: Absolutely. And I’ve had so many doctors because out my practice, had this rule that you had to see every doctor in the practice because you didn’t know who’s going to be on call. So you wanted to know them all. And each doctor would tell me something different.
P: Yeah.
A: And give me some different directives. And it was driving me bananas because I was able to do this. Well, this doctor said that and we’re saying this. And so I finally decided to say I need to have one doctor. And that’s how I started to advocate for myself along the way. So instead of just accepting the diagnosis, accepting everything, people were telling me I hit the brakes on that I began to empower myself. Okay, I am in control of my body and I’m going to have a say in how this goes what happens to my body and so I picked one doctor, who I felt was a really good surgeon who I had a good rapport with, and that definitely made things go a lot more smoothly.
P: Okay, good. Good. And Are they checking you every week? Or what’s the schedule like?
A: That was the only time I got to be released from my bed rest sentence was to go to the doctor so I didn’t even mind it so much. And I would go every two weeks, either to the specialist or to my doctor. There was always an appointment to go to. And you know, then there was the gestational diabetes appointment, which was in a lab where I had to stay for I think was three hours because I failed the first test and then they give you a second testing and drink this awful fluid and they take your blood every hour. I can’t remember exactly, but there was a lot of blood being drawn. And those were really the only times I left the house.
P: Yeah, so I can see how they became special.
A: It’s very sad as special..
P: as forms of escape.
P: The one saving grace before that was that my husband would come home for five minutes with a milkshake every day, and then I would get to see his beautiful face. He was so busy. And half the time he would come home and the phone would be propped up to his ear and he just kind of dropped it for me and he didn’t have any time at all. The lady used to know exactly what time he was going to be there and just have it on the counter. So you have to waste a single minute, but it was so important to me that milkshake. It was the connection I really needed during the day. And then when I got diabetes, it was really hard and I began to have to deal with prenatal depression, prenatal anxiety. That was a whole other experience I had no plan for
P: Yeah, that seems unbelievably hard.
P: As Aileen suggests, bedrest can be really mentally taxing, an issue that Dr. Mazaki Tovi addresses.
Aileen was slotted into bedrest because her cervix was opening prematurely. But I’m guessing that this only happens thanks to a complicated series of signalling, so she was saying that her doctors prescribed bedrest because they didn’t have a better way to manage those problems and it probably wouldn’t make the problem worse.
Dr. MT: Exactly. So actually, this is a very common misconception because Okay, so if you go to a physician or healthcare provider will describe bandwidth. The idea is that, okay, if it won’t help will hurt. Again, this is a this is a huge mistake, because bedrest is a tremendous toll from the woman It has physical toll, like dramatic emotional impact of talking about stress, and depression and feeling of of course, about all the economic importance, and all those things that are actually affecting them dramatically without providing help.. Tragedy of this treatment.
P: bedrest does seem like a sentence, right? I think people who don’t experience it and from the outside might say, Oh, it’s so nice. You can watch TV or do what you want. And that’s fine, probably for like two days. And then
A: and I think people understand that now much more with the pandemic.
P: yeah, totally.
A: I wrote this piece for the Washington Post about how bed rest prepared me for this pandemic. What I had to do every day is self care. And it was really just starting to appreciate small things that you don’t notice. So for example, I began to realize that there were these birds that would come every day at noon and circle the yard. They were the same birds every day and this was their territory. And I had never noticed that before. I began to appreciating the smell of the lilacs on the tree outside on my deck. You know, there was a tree right by my deck. So there were small things that I started to really notice. And so that was a little bit of a saving grace and growing experience for me.
P: yeah I can imagine coming from Brooklyn, moving to a rural area, and being on bedrest is a pretty dramatic slowdown. I’m assuming life in Brooklyn is much faster
A: than it was terrifying. So out of my comfort zone living in an old farmhouse to begin with, yeah, and then not to be able to leave that farmhouse. No to see people was so hard for me because in Brooklyn, you walk outside your door, and you see people and there’s a hustle and bustle
At one point by marriage really just starts to crumble under the strain. There’s such a financial strain. We’re trying to renovate the house for the baby. There’s the house has been renovated in probably almost 100 years
P: Oh Good Lord,
A: it was my husband’s family’s farm. There were so many ridiculous things that you can’t even imagine going on his house, and we were having a baby we needed to kind of get up to speed. At one point. Things got so bad. I had to leave. And I went back to Brooklyn and I stayed with my mom and just being in her apartment in Brooklyn and smelling the food from the neighbors and hearing the sirens and the traffic and the kids playing outside. It was so cathartic and my friends came to visit and we talked about things other than pregnancy and other than bedrest and that made me feel whole again.
P: Yeah. That’s, that’s true. Now that you mentioned that I can see how your world has shrunk to this. You know bed that you’re on. You don’t have reminders in that new house of kind of your life before pregnancy,
A: right. And the other thing is this house because it was a family farmhouse. There were so many memories in it that weren’t mine.
P: Yeah.
A: so the paintings on the wall, the furniture, none of that was ours. And it was really like being in a stranger’s house and we were trying to make it our own. And we knew it would take time, but we had a plan and then the plan kind of fell apart.
P: Yeah, yeah, it sounds like you’re relieved or bed rest at some point. How does that happen?
A: I wasn’t relieved of bed rest, at the very end I was given an hour a day to be right, who’s like parole like you get an hour a day to be out in the world. And now I’m nine months pregnant, and I can barely walk and now I’m afraid to go out. I’m depressed I have anxiety. I am petrified How did they expect me to just pick up my life and start over so then I was able to
P: wait so let’s talk about that a little bit what happens about appointment and because that does seem like they so don’t understand what your life is like on bedrest to say like, oh, we put you on pause, but now we’ll hit play.
A: Right You know, I was seeing a specialist and I was seeing my OBGYN. They didn’t always agree. The specialist said at some point, I’m not sure you need to be on bedrest. And my OBGYN was like let’s hold up on that you’re doing really well. So why mess with it now you’re almost at the finish line. And I kind of agreed with that. And I had so much fear that I was gonna mess it up. Yeah, do something and be responsible for something going wrong. So I was like, Well, you’re right. This is working.
P: What’s the way forward?
What do we do now? Now that we have a sense that but rest is not the answer. What what do you do?
Dr. MT: Well, it’s extremely hard because you know, discovering business is actually entrenched into the DNA of the medical system. It’s extremely, extremely hard to take it out. But I would start with just approaching the women is complication of pregnancy and let them know that they cannot hurt the pregnancy. They don’t. Any complication that happened in pregnancy is not because of the woman is not because they work too much or the rain, or the babies or the client service. It has nothing to do with the complication of pregnancy. First and foremost, and this is more important to be from educating the medical staff is to educate women and let them know that they are not guilty of anything, this is the most important thing. The other thing is to educate and change in the perception of the asker and that unfortunately will take at least a decade or so. More and more studies that we did are coming in hopefully that will change the indications in the in the widespread use of bedrest and the therapeutic measures, but unfortunately I must say that will take place a decade.
A: So I was like your right. away, we still inside my body. So that’s where my baby needs to stay right now. And so I’m going to keep doing what I’m doing. So my OBGYN said well, you can have an hour a day. Right? That helped with my mental health. A lot
P: And what WHAT WAS THAT based on? Why did they change their their mind? To some degree?
A: They didn’t really share that with me so much.
P: Oh, wow.
A: That’s the thing. Like it’s like you are a magician like one day. This is what I’m supposed to do one day, this is what I’m supposed to do. And there were no clear answers. But my feeling is that I had made it far enough along the same for me to start adding in more activity. I was past the danger zone
P: and how are you feeling now emotionally about that? Because I imagine some amount of pressure has lifted so that in this point if the baby is born from that day on, we think there’ll be okay.
A: In my book, you’ll see that it’s broken up by week. Each chapter is a different week. As I check off the weeks I feel safer that my baby will make it and survive and live and that’s my one and only goal on bedrest is to keep this baby alive. So I’m checking off weeks and I actually start watching morning show with produce Pete who talks about vegetables and he tells you what the week vegetable is and what’s in season. I’m like if I can only get to Apple season when my baby supposed to be born. And that’s what I was basing it on fruit and vegetable
P: that gives us a sense of state of mind. Okay, and then do you make it to 40 weeks or how do you how far do you make it
A: I do you make it to 40 weeks?
P: Wow.
A: And that was really shocking to me because all I can think was that moment when my doctor said you will be lucky if your baby makes it till 24 weeks and to make it to 40 Weeks was amazing. I went into the doctor’s office and all of a sudden they’re saying maybe late, like prepare for being late. And I’m like what are you talking about?
P: Oh, by the way, you have triplets we forgot to mention.
A: Exactly. I’m like so then I started to really question the whole medical community, like, how could I go from being on bedrest Because he thought I was gonna give birth any second to not giving birth for another three, three weeks.
P: So that is so now that we’ve had this conversation that puts in context for me that first scary phrase, and they should never give you a date. They may say like you may go too early because your cervix is a face to say 24 weeks now seems nuts because how would you know how would you know the you know magic?
A: And that’s what I learned is that doctors don’t always know as much as we think they know or want them to know. And that’s okay. They don’t always have the answers and there isn’t the research. I don’t put the blame on doctors at all for that. It’s just how that information is communicated.
P: I totally agree. And actually the way I picked doctors is if they say they don’t know something, I think you’re the doctor for me. I want to hear you. I want to hear you don’t know, right? I don’t I don’t expect you to know everything and I want us to be honest about the boundary.
A: Absolutely.
P: You want to feel totally different if that first doctor had said, I don’t know how this is gonna go. But your cervix is facing too much and we’re gonna have to like change up what we’re doing.
A: Right. Well, these are my concerns. Right? Right.
P: So I can’t believe you’re going to be late. Take us to the day that baby is born like how do you know today’s the day? Are you late? How does that all go?
A: This is actually very funny story. It’s four o’clock in the morning. I wake up and I’m wide open and I feel this kind of swirly feeling. And that’s the best I can explain it and it’s just like a feeling I’ve never had before I don’t have any pain. I just feel swirly. I can’t go back to sleep. I finally kind of doze off a little my husband gets up goes to work. And I spend the day watching movies and taking baths.
P: feeling swirly the whole time
A: the swirling starts to change into excruciating back pain. Wow. And goes now I’ve been on bed rest for five months. I’ve had so many aches and pains. There was one point in this whole experience where my fibroids start shrinking. The pain from that was so excruciating. I didn’t know how I was going to get through it. So I just assumed that this was just another pain that I had to work through. My doctor told me I was going to be late and I’m not feeling any contractions and so the whole day passes like this and they’re getting worse and worse these pains in my back. Finally my husband comes home later in the evening. And at one point I think the pain is so bad I end up on the floor.
P: Oh Wow,
A: I kind of have this idea that maybe I should check in with my Doula who I hired to advise me and she says to me, it sounds like you’re in pre labor. And so I take your word for it. And I’ve tried to pretend nothing’s happening, but I I just can’t get off the floor now. And my husband’s preoccupied. He’s on the phone. He’s doing all this work stuff. And my Doula happened to be at a party that day when I called her that evening and so I didn’t want to bother her again. And this is something women do right. Like they’re they could be having a medical emergency but they don’t want to upset anybody else, or help themselves by imposing on somebody. How do I say I’m going to call my doctor and the doctor was like, to come in and I was like, No, it’s kind of late, I don’t really want to…. And Doctor is insisting and I’m like, What is wrong with you? This is good. There’s no reason for me to come in and just giving you a heads up. So finally, the doctor says, Tell me the hospitals. Let’s just take a look.
So now everyone knows something that I have yet to discover for myself. And we’re trying to get out the door and I can’t get out the door because the pain is so bad. Every time we start to leave I have to get on the floor. And at one point the dog gets so upset with me. The dog is pawing at my face kind of woke me. Why is everyone acting so strange? I just have some back pain with my husband kind of herds me to the car, and he’s like you just gonna take the bag we packed and I’m like, don’t be ridiculous. We’ll be home in an hour. I didn’t just in case I finally get into the backseat. I can’t even get into the front seat. And laying down in the back of this car and we’re going over the Kingston Rhinecliff bridge and my husband says to me, Listen, I don’t want you to be upset, but I have something to tell you. And I’m like, what could you possibly have to say right now that would upset me.
And he says just listen to my thoughts on this. I think you might be in labor. I’ve been timing you and it seems like maybe you’re having some contractions. And then I think about it for a minute and I’m like, wow, this is the moment I’ve been waiting for. Since I was a four year old child in Brooklyn learning how to swaddle my Holly Hobbie doll. This is it. This is happening. So we get to the Birthing Center, which is absolutely beautiful. It’s attached to the hospital, but it’s like a little house with a beautiful porch. And by this time, I think I could let my Doula know that we’re heading over to the hospital and she meets me in the parking lot. And she’s like I want you to breathe and want me to take a deep grounding breath and I basically push her aside and say, lady, I don’t have time for this I gotta get to the hospital. So so that’s how it started. That was that was how I finally acknowledged that this was finally happening.
P: I remember asking people, What do contractions feel like? And every single person said, Oh, you’ll know and also back Labor’s not what you expect are not what I would expect. I wouldn’t know what to do with that either.
A: Absolutely. And no one told me anything about back labor but didn’t have a single traditional contraction. Yeah, it was it was hard. It was very painful. And they said that the reason that I was in Back labor was because of my fibroids. I don’t know if that was true. I didn’t really have time to research it in the moment but they said your this is because of your fibroids that you’re not having traditional contractions.
P: wow so when you get to the birthing center, are you imagining a vaginal delivery or where are we on the delivery
A: right? So did you happen and I obviously don’t want to give away the whole story for my book, but the doctors had gone back and forth about that quite a few times whether I was going to have a plan C section because of the fibroids, whether I could deliver vaginally and pretty much towards the end of my pregnancy. They switched it up and said you can deliver vaginally and I wasn’t at all prepared for that. Because I had been planning on a C section, okay. And so that’s what I was going for, and I was going for that for 36 hours.
P: Oh my God.
A: And so here I am in the hospital, 36 hours of labor, and I’ve been in bed for five months. And now I’m going to have a baby on a sleep deficit.
P: I was gonna say you must be like Looney Tunes at this point. Right? That’s
A: And it’s so ironic. I spent five months in bed and now I’m having this baby completely exhausted.
P: Yeah.
A: I will never catch up from this. And it took a long time to catch up.
P: before you encountered any trouble with your pregnancy. Had you imagined no waterbirth or angels with harps coming just from by your ears or like what was your picture of what delivery be like
A: I had planned to be in a hospital with a doula from the start. We hired the doula before there were any issues. We had checked out the birthing center. It was really a comfortable homey place attached to a hospital so it was the perfect ideal place to give birth and I did I did get to give birth there luckily.
P: Oh Good, good. And that was a success. I’m imagining.
A: Yes. So we’re in labor for 36 hours. They have a birthing tub. We’re trying everything. And most of this time up until 25 hours I’m doing this without any drugs. And I finally call it and say Listen, I need some relief. And so they gave me all sorts of different things at various points. And now we’re an hour maybe 34 and the doctor says you’re nine centimeters dilated. I just had some sort of cocktail. I don’t know if it’s an epidural and I don’t even know what they’re giving me at this point. But I can’t feel anything. And the doctor says I can kind of push that last meter for you. So you can start pushing but I don’t think you can. I think you’re exhausted and I think that your baby’s heart rate is climbing and we need to get this baby out now. I was like I can push. She’s like you can’t push. And I was like no no I can push and she was like, Man, I’m things and she was right there. I couldn’t feel a thing. There was no way I was pushing but in my mind, I felt like I could reel this baby out of my body.
P: Well you willed it in. Also, like are you appreciating the irony of like, we’re worried your cervix will pop open at any moment and now you’re like at nine and it’s not
A: and the baby will come out babies like and I think honestly I’m it’s been so much time and energy holding this baby in.
P: Yeah,
A: that in truth it was hard for me to let go and understand that it was okay to give birth and they will be in for a C section and everything went pretty smoothly from there and I had a beautiful baby boy
P: such a great ending. And how old is the baby now?
A: Well, let me start by saying that it took a very long time to process this story and to write it took even longer. My son is 15 now so
P: awesome. It does take a long time to process this is a good long runway now that you’ve had this time to process it. Is there anything you would have told young Aileen into this process that would help her
A: I try to think of it. What would I tell a woman on bedrest? Yeah and what I would say is the most important thing is to say this is your body and you need to advocate for yourself and make sure you are heard and do your own research and that no matter what happens You’re a strong woman and you will get through this because I didn’t know any of that at the time.
P: Yeah, yeah. There’s no test like this test right? It is like physical and emotional and in pressing in ways that nothing else is.
A: Right. And I think that what is important to understand is when you go on bed rest it’s not just laying down for five months and reading some book, Your whole life changes and that’s important to know and to be prepared for continued steps and also to acknowledge your emotions and feelings and know that they’re real and that you have a right to feel those things and that there are people you can talk to about it. And you should reach out for help. And I had felt so much shame that I had somehow caused this that embarrassed by my fibroids by my incompetent cervix. I didn’t know if I could talk to anybody about it. And I think that would have made a big difference if I felt more supported in that way.
P: It does sound like you’re toughing it out by yourself in in a space that you shouldn’t be alone. And it’s such good advice to tell other women that having more support around you can make a difference. It’s challenging to be pregnant and it’s hard to live in a body that’s not always compliant. All you can do is adjust when things don’t go as planned–and you made major adjustments to see this pregnancy through, and in the end your body cooperated with that… To honor the pledge i made at the beginning of our conversation, I am thinking about enthusiastic cervix instead of incompetent cervix, but we can we can work on that and your book is called knock down. Is there a subtitle?
A: Yes, it’s called knock down a high risk memoir and it is available for pre order now it is out on March 1 wherever books are sold for signed copies if someone would like to order from rough draft barn books is an amazing indie bookstore in Kingston, New York and the link is on their website. And they’re fantastic. Anyone is local to Kingston. I suggest you go visit them the bread the coffee they want most amazing books. It’s one of my favorite places.
P: I will put a link to that in the show notes and this sounds like the perfect book for many people but if you are on bed rest and wondering if you are alone in this might pick up knock down
A: I think this is a book for women who’ve had children for bed resting women and for Gen X women and any woman really who wants to hear a funny story about a very serious topic. And I think that this is something that most people can relate to. There are also aspects of growing up in a Jewish community growing up in Brooklyn dealing with trauma marriage, so there’s something for everybody in this book.
P: that sounds awesome So those when I read it and thought it was great, it’s really emotional, which I think is a hard thing to communicate as a writer and I think that like I will remember this book. This will stay with me because it I definitely felt it
A: thanks so much.
P: Thanks so much for sharing it. Thanks so much for coming on the show and good luck.
A: Thank you so much for having me this was a great conversation.
P: I want to again thank Dr. Mazaki Tovi for taking the time to come on the show and talk about his research. I think one important take away from his work is that if you are prescribed bedrest it’s a good idea to talk very specifically about what that means in your own case…and thanks also to Aileen for sharing her story and her book. I will put links in the show notes to the research on bedrest and to the bookstores that Aileen mentioned. I hope you enjoyed this episode. Feel free to subscribe to the show and share it with friends.
We’ll be back soon with another story of overcoming
Episode 38: Many Challenges can Visit a Pregnancy and Birth (including Covid): Erin’s story
Episode 38 SN: Many Challenges can Visit a Pregnancy and Birth (including Covid): Erin’s story
Having spoken with a lot of women about their experiences with reproduction, many of them report having one or possibly two issues that visit their pregnancy or birth that alert them to the fact that they have very little control over the momentous task of creating another person in the confines of their body. Today’s guest was visited by many, many issues, including miscarriage, hyperemesis, gestational diabetes and the coup de gras, issues with breastfeeding, all of which happened (drumroll please) during Covid….so yeah, it was a lot. But now that she and her partner are on the other side of that experience, and getting to enjoy their beautiful six month old, she can appreciate how many of these challenges taught her valuable things about herself.
Japanese Art of Grieving a Misscarriage
http://deathtalkproject.com/on-the-japanese-art-of-grieving-a-miscarriage/
https://embryo.asu.edu/pages/mizuko-kuyo
Engagement
https://www.healthline.com/health/pregnancy/baby-engaged#engagement-explained
Audio Transcript
Paulette: Hi Welcome to War Stories from the Womb. I’m your host Paulette Kamenecka. I’m an economist and a writer, and the mother of two girls. Having spoken with a lot of women about their experiences with reproduction, many of them report having one or possibly two issues that visit their pregnancy or birth that alert them to the fact that they have very little control over the momentous task of creating another person in the confines of their body. Today’s guest was visited by many, many issues, including miscarriage, hyperemesis, gestational diabetes and the coup de gras, issues with breastfeeding, all of which happened (drumroll please) during Covid….so yeah, it was a lot. But now that she and her partner are on the other side of that experience, and getting to enjoy their beautiful six month old, she can appreciate how many of these challenges taught her valuable things about herself.
After we spoke I went back into our conversation and included some details about medical issues that came up, and also had the opportunity to speak to a fantastic midwife and listening to her empathic and intelligent answers to my questions, I can see that she also teaches all of us what we should all be looking for in a midwife.
Let’s get to this inspiring story.
Thanks so much for coming on the show. Can you tell us your name and where you’re from?
Erin: My name is Erin Donaghy, and I’m from Melbourne in Australia.
P: Oh, wow. Cool. I’m jealous. It’s beautiful right?
E: It is very beautiful. We were just in fall at the moment. So it’s gotten very cold all of a sudden but it is a wonderful place in the world. Yeah,
P: I don’t think I realized it ever got that cold…
E: Everyone thinks is always beautiful and sunny. There are some parts which are definitely much warmer. But yeah, we’re right down south. So it does get a bit cool.
P: So Erin, tell us a little bit about yourself. Do you have siblings?
E: I do. Yeah, I am one of three. I have a brother and a sister. So my sister is two years younger than me and my brother is eight years younger than me so he was a little bit of a surprise but a very welcome surprise to the family.
P: I’m the third of four and I have a sister who’s eight years younger than me and she’s like the best one. So thank God for surprises.
E: Thank goodness she came along.
P: Exactly. Did you imagine that you would have a family someday?
E: That’s I think, always probably did you know, my brother being eight years younger than me. I was always called his second mom, you know? So I think now to an eight year old and I’m not sure I would trust an eight year old with what I was trusting during that time. But you know, it was the 80s and maybe things were a little bit different, but I think I probably always did but then as I got into my 20s I became quite career focused and my mum is very maternal and was always has always been having you kids was the best thing ever. Having kids is the best thing you know, you’ll regret it if you don’t, and I was always a little bit different. You know, I was like, Look, I can imagine having a family but I think it’s also possible to that I may not have a family. So yeah. And then that sort of changed as I got into my Well, I suppose I was more towards my mid 30s where I started to think actually, yeah, this is something that I want. So I am an older mum. Just kind of how life has worked out. So
P: Erin and I are on zoom so I can see her and Aaron does not look like an older mom. So I feel skeptical. so before you got pregnant, what did you think pregnancy would evolve?
E: I think that because I am a little bit older. I’ve had lots of friends and you know my sister she has two beautiful boys and so she’d had kids as well. So I sort of I had an idea that could be tough. I didn’t have this vision of this. You know, I’d seen women that look beautiful and growing with a beautiful perfect bump. I didn’t necessarily expect that for me, but I think there’s nothing quite like a lived experience. Right? So no matter how much you can seek, you know, or you think you’ve seen from your friends or your family, nothing like living at yourself. So I think probably the main gap in my expectations was well pregnant during COVID So that was completely and and then I think probably how my birth kind of ended up but that’s a process. You know, it’s a process we go through when we go and so I have this tension. You know, I’m so happy to be here talking to you about this because I think it’s so important that we share our experiences in order to demystify, de stigmatize so many things. And also I understand that there’s nothing quite like doing it, to be able to know what it’s like so,
P: but it’s useful to hear many people’s stories about pregnancy, when very few of us have this Hollywood image of you know, it was easy, and I looked beautiful the whole time and i i loved it, every bit of it. So it’s interesting to hear people’s experience. So did you get pregnant easily?
E: I did. So as I said mid 30s and sort of early to mid 30s I decided something I wanted to do. I was married at the time, and we had started trying for family and then our relationship broke down. So I went through a whole process of grieving that thinking, Well really, maybe I won’t become a mom because I was in my mid 30s. And what did that actually mean? So I went through the whole process of wondering if it was something I wanted to do on my own, but decided that going through that grieving process was not the time to make that kind of decision. So I went through a complete life change left my corporate job, started up my own business, did lots of travel, and then met my now partner we talked for a long time before we actually met in person but I think things are often meant to be in the way that they turn out. So we were together for two months. When I found out I was unexpectedly pregnant, which was a wonderful, beautiful, happy surprise, completely overwhelming but you know, we both very much wanted it. It was earlier than we wanted. Unexpected, but that’s why it happened. But unfortunately that pregnancy ended in miscarriage quite early on around about seven week mark. I had some bleeding, which, you know, led to a prolonged period of bleeding, some scans that were inconclusive, so that I had to wait a couple of weeks and unfortunately the time my partner was overseas so I was dealing with that on my own in a very good health system in Australia, but not particularly empathetic. So I found the process to be quite I mean it was a difficult it’s difficult going through a miscarriage of course, but I think because it happens so early on and in the medical world they deal with it quite regularly. I don’t feel that I got a great amount of support.
P: Yeah, That’s really hard. I’m sorry, they didn’t find someone who had good hands for that job and hard that your partner was gone.
E: Yes, it was. It was a full time as I said it was very early on in our relationship and not at all expected. So yeah, it was one of those things and when I look when I think back now I think I don’t really remember that month post it. I think I was quite numb like I am quite a spiritual person. I’m quite an emotionally self aware person and I’ve learnt to the feelings as they arise but at that time Yeah, I think back to that month I you know, I came back to my business. I just kept going because I thought that was what I had to do. And you know, I think one of the things that again it’s lived experience because I think I probably haven’t been completely very empathetic in the past when it’s happened to people when I’ve known about it. It’s all the hopes and dreams that you attach to a pregnancy this little being that although just a little bean at the time, everything you imagined for that what that means for you your relationship for creating beautiful little life sort of disappears in a flash and I don’t think there’s a lot around to actually deal with that. And because we don’t talk about pregnancy till sort of the 13 week mark when it’s safer to do so I think it’s not until you actually start talking to people that you realize how common it is.
P: I feel like we need some kind of rituals around it to help to help us grieve and just something to help us get some sort of closure on it right because it feels so finished and unexpected and you have no control right one way or the other.
So I took this question of rituals to a midwife. today. We’re really lucky to get to talk to a certified nurse midwife. Her name is Ann Richards Ann thanks so much for coming on the show.
Ann Richards: Thank you so much for having me. I am a birth podcast fanatic and listen to them all the time and I’m just giddy that I get to be here on one
P: Erin’s first pregnancy in a miscarriage and instead of about seven weeks, she said she didn’t really think it was dealt with very empathically I’m guessing that you see it often in your practice, and wondering how midwives are trained to deal with miscarriage and if there’s any effort afoot to develop rituals around this because it’s so common,
Ann: that’s interesting. So you know the training for it is very different. I think, depending on where your practices in school, we didn’t learn a whole lot about how to manage it. Oftentimes it’s well if it you know, a fetus in the uterus without a heartbeat, and obviously the body hasn’t passed that that non viable pregnancy then you’re usually just consulting and passing the patient off to an obstetrician who then is talking about management options. And so it’s kind of brushed over to be honest because we call that a missed AB or missed abortion slash missed miscarriage, meaning the body has not recognized that that the pregnancy is no longer viable and so you can kind of lay out how do we help the body to pass this non viable pregnancy? So it wasn’t until I was in my current practice where I worked collaboratively with obstetricians that I got to see those discussions regarding management. But whenever you diagnose someone with a miscarriage, you know, maybe they come in for that very first ultrasound, that very first prenatal appointment and there is no heartbeat. It’s devastating. It is for me personally, knowing that I have no idea how devastating it is for the patient. You know, it’s so hard to say you know, not knowing exactly how that was dealt with by the midwife she saw but I’m I’m just really sorry to hear that. You know, because it is that’s something every time I see a patient for her first visit, I have a huge lump in my throat until we see a viable pregnancy. And if we don’t, it is incredibly hard to navigate because I’m totally tearing up thinking about it. You can’t help but just feel helpless, you know, as a provider, and I can’t even imagine as the patient you know, wondering, why did I do something wrong? You know, which of course the patient hasn’t it’s such a difficult situation to navigate and there’s no right answer. There’s no easy answer in counseling someone but there’s of course, an empathetic way to approach it and recognizing that this for that that person in that family is is a lost life is a lost idea of life and at the last family pains, my midwife Heartseeker that she didn’t receive the compassion that that she needed and certainly deserved.
P: I feel like everyone I speak with agrees that we need some kind of ritual, kind of manage and move on. I don’t know where that’s going to come from. I don’t know if you think that it makes sense that it comes from medical practice or it will come from somewhere else.
Ann: I think it should originate with us. I mean something I actually recommend my patients now that it’s called the Japanese Art of miscarriage is a beautiful, just very raw approach to to miscarriage and helping families it’s from a patient’s perspective but I think it’s called the Japanese art of miscarriage and it’s what I personally use in counseling people if I think they’re ready for that.
P: So If you’re interested in exploring this, I put a link to it in the show notes. Feel free to check that out.
And so did you try to get pregnant immediately again or how’d you handle it?
E: Yeah, so we did to my plan is Filipino so he was in the Philippines when it happened. And so I went over, um, towards the end of his trip to visit him. We spent a bit of time there, recuperating. The advice from the hospital was to at least wait one full cycle, trying again so we started trying again after that. Our relationship went through a bit of a very rocky patch, but we then did become pregnant again. And we found out in February 2020s. So it was six months post. So I think in hindsight that six months felt very long at the time, you know, that every time you’re paying on the stage hoping and wishing and thinking and and you know, the I think you said before, you know, one of the things about pregnancy is that so much out of your control. And so yeah, thinking about the six months was not a long time to wait but it felt excruciatingly wrong at the time, but yeah, we got the wonderful news in February 2020 that we were expecting. And then months later, we went into lockdown. We actually took a holiday to Bali, and it was sort of an early babymoon and I’m so so glad we took it now. Time we were coming and going it was sort of on the precipice of things before they got really crazy. We knew that there was potentially a race I was quite seeking. They sickness but it felt like the right thing to do and it was we got back just in time before everything really kind of shut down.
P: Remind me how far is Bali for you guys not that far.
E: Not too far. So it’s a five and a half hour flight from Melbourne. Okay, so
P: not too bad.
E: Not too bad at all. No. And it was you know, it was lovely. It was a beautiful, beautiful time and as I said, potentially quite risky but it was very different over there at the time, you know wasn’t a lot of precautions happening. It was a little quieter but just not necessarily a great thing about the precautions but it was nice to escape it a little bit. Yeah. Before heading back into what was the year that has been so
P: god yeah, in hindsight, it’s genius. Well done.
E: It worked out beautifully. The universe was definitely protecting us. So then we came back and I ended up admitted to hospital because I was vomiting and I was diagnosed with hyper. Yeah, yes, very, very bad morning slash all day sickness.
P: Do we know what generates hyperemesis?
Ann: It’s very largely suspected to be related to pro pregnancy hormones that HCG are the hormone that is tested for via blood or urine when you do a pregnancy test and the higher that hormone, which tends to be much higher in multiple gestation pregnancies, the higher the nausea I really feel for patients who are going through that a lot of women are prepared to maybe not feel their best or not go well in the first trimester. But hyperemesis is just a different beast. It just lays you up and most women have a singleton Or one baby pregnancy and the gamut of what’s normal for how they feel in early pregnancy is so wide what woman you know, feel mildly nauseous or not nauseous at all and other women have hyperemesis or vomiting multiple times a day every day. It makes no sense. It’s just kind of mind boggling. It really attests to the fact that we know some about pregnancy and birth but we don’t know a lot more than we do know
E: I ended up medic medicated for that up until about 16-17 weeks, I think and that was sort of, I guess the beginning of the discomfort for me around wanting a more natural type of birth. I had a lot of fears around giving birth, but I was working through them. I really don’t like taking medication unless I have to you know, modern medicine is wonderful, but I try to avoid it as much as I can. Particularly when I was pregnant. You know, I didn’t know what these tablets were going to do. But I was just so sick. I couldn’t function without it. So I think that’s probably the first real step of letting go. That, you know, I have to be the best I can be in order to grow the baby the best I can so
P: yeah, not being able to eat is definitely a barrier you’re gonna have to cross right so yes,
E: yes, exactly.
P: So was the second trimester easier.
E: second trimester got better not immediately. You know, I was sort of hanging on to the 13 weeks thinking is going to get better. It’s going to get better. And it didn’t immediately but it did. It did go on to get better. I was in my second trimester and so I was diagnosed with gestational diabetes, which was also a pretty average experience because the reason I was sent for early testing was because of my BMI. I’m a size 16 Australian, which I think is like a 14 us sizes. You know so I’m a curvy girl, but I was made to feel bad, to be honest about my size. I understand why, you know, you’ve come up as a risk kind of factor. We flagged this but it was the way in which you know, I got an email from the midwife thing for the very procedurally does why and it’s because of your BMI. And that was kind of it. So that was a that was a tricky experience, too. Because then I went for the testing and the hospital told me I didn’t have it and then they called me back a different person told me I did have it. So I was very borderline. I think the cutoff for the sugar ratings of five or 5.1. And I was just over that, like 5.1 or 5.2. So that was difficult again, I felt like I failed. And it’s sort of ridiculous in hindsight, but I felt like I was being told that I put my baby in danger. You know, there was no sort of questions around how active I was, you know, whether I was healthy, whether I had health issues, it was all sort of based on these numbers that I have a bit of an issue.
P: Of course, we’re in the US and Erin’s in Australia. So other things may be different but in general is BMI, the only marker for screening for gestational diabetes.
Ann: All women, all pregnant women get get screened for gestational diabetes, regardless of their BMI. And that tends to be between 24 and 28 weeks of pregnancy because that’s when the way the body metabolizes carbohydrates in pregnancy and how sugar crosses the placenta to the fetus is really affected and late second early third trimester, but there are risk factors for developing gestational diabetes being over the age of 35. The Grand Old Age of 35 is is the primary risk factor. And then having a pre pregnancy BMI of 30 or greater. We do encourage women with higher BMI entering pregnancy to get screened a little bit earlier. And so it sounds like what happened in her case, and
P: is there at all genetic components gestational diabetes.
Ann: If you have immediate family members, one or more with non pregnancy, diabetes, non gestational diabetes, that automatically puts you at increased risk. It’s not just BMI like there is definitely a family link.
P: And this is totally speculative. But in the course of four or five months and gets both hyperemesis and gestational diabetes, do you think anything’s going on there?
Ann: It’s really interesting. You wonder if she says really sensitive to pregnancy hormones, including the hormones that affect glucose metabolism. So that could be it.
E: And when I got to the endocrinologist, the specialist specializing National Diabetes, she said that to me, she said no because what he said I was pretty I was a bit of a wreck, to be honest. She said to me, Look, BMI is one of the indicators but she said it’s probably most likely getting your mum may have had it, it’s most likely passed on in that way. And she said the more and more research that I do the less and less I believe it’s related to that. So that helped at the time. I don’t know, she was just trying to appease me, but you know, again, it’s one of those things that I just got to the point where, after a very emotional and rocky time, just got to the point where I accepted that I was going to get extra help through my pregnancy because of this condition and that whatever was good for the baby I needed to do. So again, I was quite resistant to wanting to go on insulin. I was like I can manage this by diet and exercise. And I did for the most part but my sugars overnight, were not well managed, for whatever reason and again, there was absolutely nothing I could do about it. So I ended up on very low doses of insulin, you know, to the point that by the time I got to the end, a lot of the risk factors that were associated early with the gestational diabetes didn’t end up sort of being there. So they started to somewhat treat me like a more normal pregnancy as opposed to this higher risk pregnancy.
P: Well this doesn’t sound like an easy trip. Good Lord.
E: I know. But they will say how is the pregnancy like, oh, it was pretty good and there was nothing. There was nothing majorly, you know, big, big issues that happen but there was a lot of small issues. I think it was just kind of this ongoing pace of it felt like a lot of hurdles to jump through. And ironically, you know, where I was sort of sensitive about being an older mom, it never really came up as part of the conversation. You know, I never got called whatever the geriatric pregnancy is. Yeah, it was interesting. I think I was probably a little bit sensitive about that, but it didn’t end up being a thing at all.
P: And so when you get to the end of your pregnancy, it sounds like gestational diabetes is you just being monitored or how are we handling that?
E: Yes. So um, so one of the parts of one of the lots I guess, of being pregnant through COVID Was that access was quite limited to healthcare. So we had a very hard lockdown last year in Melbourne, which is paid benefits now, but we weren’t allowed five kilometers away from our home. And we were only allowed outside for one day of exercise and what that implication was in the medical side of things was that we had to attend appointments on our own. A lot of appointments were transitioned to telehealth, but because of the diabetes, I was able to continue seeing the team so my OB, the OB and the endocrinologist, in person weekly or fortnightly sort of as it went through and I also got extra scans. So I went through our public health system, meaning that I didn’t have a dedicated OB, and I think having had that experience again, taking away the positives from it. Had I been a regular pregnancy or not a high risk pregnancy or may have gotten very, very little care during that time or very, very little face to face care. So take it as that but it was fairly routine from them. The scans were going really well until we sort of got towards the end of the pregnancy and she was so we knew that having a baby girl. She was measuring bigger. So then the kind of alerts the medical kind of alerts go up and the red flags come up. And that was really stressful because again, I was quite conscious of everything that I was doing and what the impact that might have on her throughout the pregnancy and because everything had been going pretty well. You know, Mike was really well controlled small amounts of insulin. And then to get this kind of red flag around. She’s measuring large on the scan, which we think we all know well. I’ve learned that a so so unpredictable and so not accurate. So then the flag sort of went up again and then we were heading down the path of she was also she wasn’t in position. So she was great. So then we headed down the path of discussing C sections, which was not something that I wanted. So I think I mentioned before I had a fear around birth, but I had been working through it, you know, I’d been reading Hypno birthing books. I was really sort of working towards hoping to have as natural as possible birth but then there’s conversations kind of that say section induction and I wasn’t super keen on induction either. So that was quite stressful and my partner wasn’t able to be there. At these appointments, which wasn’t great. And I don’t think it’s great for the partners either. You know, I think sometimes, you know, obviously I used to have this impression that you know, the prime is not the one going through the pregnancy and so, you know, they’re not going through the pain and the carrying, but I think also on the flip side of that they don’t necessarily get that very early connection and the experience that comes through pregnancy. So yeah, that was difficult. I think it was difficult for me not having him there and I felt like it was difficult for him not being there as well. Yeah, I was relaying everything secondhand with all of my emotions and but the next scan I had, you know, sort of closer to the time again, she was measuring back normal again. So that kind of alert went down and it was all calm again. So I was really excited because I was getting to sort of the 36 week mark when that’s often when if you’ve got gestational diabetes, they’ll trying to induce your encourage you to have a C section and everything was going well and it was all fine. And then I went in to on the 37th week wanting to have a meeting with the induction midwife. As I said I wasn’t keen on induction and I was still in this very much in this mindset of if she’s not engaged. And my gestational diabetes is under control. Are we rushing her it was sort of this real challenge because of like, I’ve got these medical people who know what they’re doing and are the risks far more than I do versus the more sort of feminine spiritual side of me that’s really trying to connect with my baby and saying, but hang on, she’s not giving us signs that she’s ready. So it was really it was a tension and no my partner was he was worried he wanted to make sure that both of us were okay. And actually, like the doctors are telling you to do this. So you go in, you do it. So that was really challenging. So I went into the induction meeting and they said, Look, she’s not engaged. You’re almost at full term. We’re not going to induce her…that’s just not advise at this stage because she’s not engaged.
P: Okay, engagement refers to the position of the baby’s head relative to its mother’s pelvis as the pregnancy progresses, the ligaments around the pelvis loosen making space for the baby. This is good and important because to make it out of the mother’s body, the baby will have to travel through the pelvis. Once the widest part of the baby’s head has entered the pelvis, the baby is determined to be engaged. So if the baby’s not engaged, it’s not in a position that suggests that it’s ready to be born.
E: We’re really worried about the risk of if your waters break that her cord will come out first. And one thing I didn’t mention before so my mom had a stillborn baby before me. Who’s done his cord was wrapped around his neck. So in the late 70s It was a very different proposition to things how things are now, they didn’t know that at the time, but so that caused our um for us because this has been a very real experience in my family. So basically three days out. He went on the path of a Plan C section, and I still wasn’t convinced that it was the right thing to do. Had you date was the 18th of October. My 40th birthday was the 14th of October, and the C section was then scheduled for the 15th of October. So which also happens to be my nephew’s birthday. So she shares a birthday with the cousin which is lovely. I went through the whole process of just assessing I guess and accepting the fact that my birth was not going to be I that I wanted it to be. I think it’s it’s that point of letting go of control as a parent you learn pretty quickly you have very little control.
P: Yeah.
E: And I, you know, might have a tendency to like to control things in my life, but that’s one thing that you know, the pregnancy, being quite sick and not having the same amount of energy that I had then COVID and not being able to do what I would normally do. I think probably prepared me beautifully. As tough as it was for how much you need to let go of control as parents so
P: that is a useful lesson. So did you have any contractions when you went in or felt like a business meeting?
E: No. So I did beautifully driving into the hospital. I started having contractions.
P: Oh, wow.
E: So I’ve got goose bumps now so that that made me feel happier. You know, it made me feel like although I know that those early contractions were nothing like what they would have ended up being it made me feel like she was ready to come and it gave me a little bit of a so I’ve been getting Braxton Hicks for quite a while. And so I knew that this felt different you know, that kind of rising up kind of feeling was how I described it and now we’re coming quite close together. So that was nice, but it was very strange kind of waking up in the morning, packing our bags and going we’re going into have a baby today.
P: Yes.
E: But you know, with all of the stress that had come the challenges, I think there was something nice about not having that chaotic rush to the hospital. Oh my gosh, what’s happening? My waters are broken. We need to urgently get there. There was something very nice about the calm way in which we did it. So we popped on in I was very lucky that my partner was able to be there because they were early stages during COVID where Partners weren’t able to be there. It did feel a little bit clinical, you know, you walk into a theater but the anesthetist was wonderful. She talked me through everything. was as I said it was quite calm. You know, I didn’t I couldn’t get my you know, my own burning all my music going or any of that sort of stuff that I didn’t visit envisaged in this beautiful hypnobirth that I wanted, but at the end of the day, we were there together and I held her up over the curtain. That feeling itself was amazing. And whether I went through natural birth or a C section. It was at that point in time that I just realized She’s here and she’s safe. And that is the most important thing. So yes, that magical moment when they’re then passed sort of back to you for that first skin to skin and just the three of us there. Although we were in this surgery theater, just everyone else really disappeared, I guess. Yeah. So that was just beautiful and she’s a beautiful, healthy seven pound nine. So three and a half kilos, good size, you know, good size baby. The babies in my family are nine pounders. So. She was much smaller than I expected. Yeah, just beautiful. Beautiful that that moment. It was a little bit strange because then my partner took went with her as they you know stitch me up and and those sorts of things. So being away from her and feeling a bit groggy and weird and but I knew that she was with her dad, so I was okay. Yeah. And then we headed down to recovery. I heard a baby cry and I’m like, oh, that that might be mine. wasn’t mine. She was so chilled, very, very chilled baby. And they put her on to me to latch and we did a bit of a feed there which seems to go really well. Again, I was fortunate because I’d had the C section. I’ve got a private room so my partner was able to stay again during COVID It was amazing and I don’t know how I would have done it without him you know that first night especially with you know, still not being able to really move a lot. I don’t know how I would have done it. I suppose I would have just had to call the midwives but I mean being that was absolutely amazing. You know,
E: From but it was sort of around the time where the gestational diabetes would happen. And I’d been dealing with so many different people that I felt like bringing another person into my care was would have been difficult. And also I didn’t know if she would be able to be present at the birth because of the COVID restriction. So I decided not to, again, because I was focused so much on the lead up to the birth and the birth itself. I didn’t really appreciate what that support would have been like for us post.
P: yeah, that sounds that sounds smart. I think a doula or other living or some other support system for sure in the US that postpartum care is really, really thin. You don’t see your gynecologist again for six weeks, which is six weeks. Time, right? Yeah, so maybe that’s something we all need to put a little attention on to figure out how that can be. Improved.
E: So we had the midwives visit from the hospital but that was again limited somewhat because of COVID. And we have a maternal child health nurse system here where but that’s really about the baby. That’s about making sure the baby’s okay. I think the six week or eight week mark, they ask you the questions the standard questions about postnatal depression but my nurse as lovely as she was, she was sitting at a computer facing away from me asking this question and sort of a tick box activity. I’m not sure that they’re skilled up to really deal with the gravity of those types of situations and I did not have postnatal depression. I don’t believe there were things in our house that we’re taught, you know, there were we’re dealing with this whole changing dynamic, you know, and I think having a child brings up stuff from your own childhood, whether consciously or unconsciously, so, yeah, so 100% agree with you, I think much more care and particularly focusing on the emotional side of things post birth is something that we could all benefit from.
P: It is a little too medical. I totally agree with that. So how old is your daughter now?
E: She’s six months old Isabella? And she is a delight. She has a beautiful girl she is as I said she came at a very chilled baby. And she is for the most part very chilled, but she sort of goes from zero to 100 She’s also very cheeky and she’s starting to realize that when she does things she gets certain reactions. So she she like this morning she woke up singing now she’s found her voice and she just wakes up smiling every day. So bless her as I said, she’s a very, very good sleeper, which has been wonderful. So we’ve just removed the dream feed. So she’s sleeping from 730 ish to 630 so
P: wow.
E: Yeah, yeah, that definitely definitely helps.
P: That’s awesome. How fun. So you’re so close to this experience. I’m going to ask you this anyway. Is there any advice you would have given to your to your pre pregnant self?
E: Yeah, I think the one around the doula engage a doula. That’s kind of a very practical piece of advice. I think. From a bigger picture perspective. Advice I would give is, don’t be afraid to speak up. I’m not generally a person that’s afraid to speak up but something happens to me when I walk into a hospital. I think hospitals don’t realize how hierarchical and overwhelming they are, you know, the medical side of things is something they do every day, but it’s very new to us. So don’t ever feel bad for asking questions. Don’t ever feel bad for saying that doesn’t feel right to me. I need to think about it. And don’t be afraid to ask for extra help both physical and emotional I think you know, it’s okay to say I’m struggling a little bit with this got to the point where you know, people wouldn’t be offering food and I would normally say no, we are okay because my partner’s a chef by trade. So where I kind of got that covered and I actually got to the point of just saying, actually, that will be lovely. Thank you so much. Because even though you might be okay one day, something might happen that you’re just you know, something might not happen you might just wake up feeling not so great. Yeah. Except the help you know, it is a particularly vulnerable time. I thought I gave myself time to recover despite the fact that we returned to work early. I really was very conscious of being present when I was with her and still am, but your body has been through an amazing and massive thing and we are emotional, spiritual. I went through a big transition when I was pregnant. I knew my life would change when she arrived. But I had underestimated how it would change as soon as I was pregnant. So she kind to yourself, trust your intuition and let go of control, I guess.
P: Yeah, that’s a good that’s a good lesson that you will learn quickly as a parent, right. So
E: absolutely. I was grateful to learn it earlier on. So she, she teaches me every day. Cue reminds me every day but yeah, it is you know, there it’s it’s now much less about any of that than it has been before.
P: It’s such a great story. Thank you so much for coming out and sharing your story. I totally
E: appreciate it. It’s my pleasure. Thank you for allowing me to tell my story.
P: Thanks again to Erin for sharing her story, and to Isabella for doing her part to ease her parents into family life. Thanks also to Ann Richards for her insights about a wide range of issues from miscarriage to breastfeeding–I appreciate your time, expertise and empathy. Thank you for listening. If you liked this episode feel free to share it with friends. We’ll be back soon with another inspiring story.
Episode 22: Don’t Tell her No, SMA & Pregnancy: Sarah’s story
Episode 22 SN: Don’t Tell her No, SMA & Pregnancy: Sarah’s story
If I had to use one word to describe today’s guest i’d say driven, or maybe fierce–truly, and maybe it’s because of these personal attributes that her life in the world doesn’t match the predictions you might make if you looked at her health status on paper. She was born with a neurodegenerative disease that dramatically affected her mobility–she’s never walked and has been wheelchair bound for almost her whole life…and despite the challenges this kind of condition invites, she’s a school psychologist and importantly for this podcast, had a baby. In general, in the medical community, time and time again doctors have told me that pregnancy is an enormous stress test on anyone’s body–to have her condition and successfully manage a pregnancy is next level. And although lots of people enter pregnancy underestimating how it will effect their body, today’s guest had no such luxury.
You can access Sarah’s class Destination Tomorrow, and her children’s book Differences are Dynamite!
Spinal Muscular Atrophy
https://www.mda.org/disease/spinal-muscular-atrophy/types
https://my.clevelandclinic.org/health/diseases/14505-spinal-muscular-atrophy-sma
https://pubmed.ncbi.nlm.nih.gov/19692244/
CVS Testing
https://www.mayoclinic.org/tests-procedures/chorionic-villus-sampling/about/pac-20393533
Carrier for SMA
Journal article on women with SMA and pregnancy
https://www.jns-journal.com/article/S0022-510X(18)30106-0/fulltext
NIH site about treatments
https://rarediseases.info.nih.gov/diseases/4945/spinal-muscular-atrophy-type-2
Discussion with Dr. Abati about treatments
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host Paulette kamenecka. I’m an economist, a writer, and the mother of two kids who very much enter the world on their own terms, as babies often do. But for today’s cast, there was a lot of effort put toward controlling the elements of this process that could be controlled. If I had to use one word to describe today’s guest. I’d say driven early be fierce, truly, and maybe it’s because of these personal attributes that her life in the world doesn’t match the predictions you might make, if you looked at her health status on paper. She was born with a neurodegenerative disease that dramatically affected her mobility. She’s never walked, and has been wheelchair bound for almost her whole life. And despite the challenges this kind of condition invites. She’s a school psychologist, and importantly for this podcast, she also had a baby. In general, in the medical community, time and time again, doctors have told me that pregnancy is an enormous stress test on anyone’s body to have her condition and successfully manage a pregnancy is next level. lol lots of people enter pregnancy under estimating how it will affect their body. Today’s guest had no such luxury after our conversation are back into the interview to add some details about medical issues that we discussed.
Let’s get to her inspiring story.
Hi, thanks so much for coming on the show, can you introduce yourself and tell us where you’re from.
Sarah: My name is Sarah Manuel and I am from Northern California. So, like, not like the San Francisco part of Northern California, like the real Northern California where, you know, horses are our neighbors and we grow rice.
P: Nice, that’s really nice. I’m from the fake Northern California– in the Bay Area, but I’ve driven up to where you are and it’s beautiful.
S: Yeah it is. and we love going to San Francisco too
P: That’s that’s having it all, that’s great. Do you want to tell us a little bit about what you do.
S: Yeah, so I am a school psychologist by day, and on the side I am a life purpose coach, and part of that and I’m really excited to share with people, this course I have called destination tomorrow, which is three different ways to visualize your future so you kind of know what you want your future look like so you know how to get there. And when I made my first vision board that I still have because it’s relevant in so many ways, my life now. There was definitely a picture of a baby on there so I knew as part of the feature that I wanted to create for myself, and I just I didn’t really know how to, how it was going to happen but I knew that I wanted it to happen.
P: Okay that sounds cool. I know you have one child, let’s talk about how you got there, how you made it happen. Before you got pregnant with that child. What did you imagine pregnancy would be like?
S: So I was born with a genetic disease called spinal muscular atrophy, it’s, it has historically been known as the number one genetic killer of kids under two, and I wasn’t supposed to live past age of four or five, and even though I didn’t have that circumstance. I do live my life in a wheelchair, the disease is progressive so I’m stronger today than I will be five years from now, and I am extremely weak so one pound of weight is heavy. The fact that I was, you know, still alive when I met my now husband. I just assumed that I wouldn’t be able to have a kid and he’s the one that says, Sure, you can’t Why couldn’t you. So we started talking to doctors, and it was really frustrating because we would have one doctor say, Oh yeah, you can do this and then the next one day I don’t think so. I was really scared about what the pregnancy would be like we really didn’t know how my body was going to respond.
P: Let me stop you for a second, will you tell us a little bit more about your condition, were you diagnosed at birth or later than that,
S: my mom started noticing something was off. I started pulling myself up, and then I stopped. So I was around say six or seven months when she said take me to the doctor. And when the doctor told her, don’t panic, you’re still within the normal limit so we’ll give it some more time than when she took me back and, of course I hadn’t worked at that point, and we started doing a series of tests so I was probably around one or so. When I was diagnosed and they thought I had the more severe, to type one is the most severe and I have type two.
P: Okay, well that’s lucky, have they figured out it was type two?
S: because I lived.
P: Oh wow. Good lord.
S: Yeah,
P: well that sounds stressful for you and your parents.
S: Well for me I didn’t know any different, because I was so little I know that the types of medical procedures that I had to go through, were very traumatic and painful. And one that I do remember when I was nine years old, they wanted to do a muscle biopsy to confirm the disease but they didn’t have the blood tests and all that back then, so they can numb the skin to do the biopsy, but they couldn’t numb the muscle when they edit because they said that would be it would throw off the results. So I remember it being in the doctor’s office screaming, and they gave me headphones with Smurf music I think that will hold me down, But I really felt them cut my muscle.
P: Oh, I’m not sure I’ve heard of Smurfs as anestesia before.
S: Yeah.
P: Was it from your leg or where was it from
S: Yeah, he was in my left thigh.
P: Oh, wow, that sounds unbelievably painful.
S: Yeah, I get a Cabbage Patch Kidl out of it. So that’s pretty great
P: I remember that being pretty coveted.
S: Yeah, and I got it before the Christmas rush that that season so I was like that, you know, number one, kids school because I have my cabbage patch kid,
P: yeah, that’s, well done on your parents part,
S: yes.
P: So as Sarah suggested spinal muscular atrophy or SMA is a genetic condition that you can inherit, if both parents pass on a copy of a flawed gene. This gene allows for good communication between cells in the brain and spinal cord that affect voluntary muscles with SMA signals from the brain don’t reach the muscles, making muscles weaker over time and limiting a person’s ability to move the genetic test for this condition was developed in 1995, almost 20 years after Sarah was diagnosed, it looks like between 10,000 and 25,000 children and adults have si in the United States in the last five years, new treatments have been developed, the attempt to fix the flaw gene and improve the connection between brain, spinal cord and muscles.
So, so you’re going around to different doctors and some are saying yes and some are saying no and what are those conversations like like are they yes people convincing or they know people convincing or they’re both convincing. What are they telling you.
S: Well, there was one in particular I remember we had guided an appointment and it was like a ninth wedding anniversary and I thought oh this is a great sign she’s gonna tell us to go for it. So we go to the appointment, and she lays out like seven to 10 reasons why it would be really dangerous for me to get pregnant, and then she just says, I recommend that you don’t get pregnant. And I started to cry. And she said, Did I say something wrong. And I’m just looking at her like
P: 7 to 9 things wrong
S: I came to you wanting to get pregnant and you just told me I can’t, and, like you have no emotion, like, so that was like the one that stood out in my mind and it was after that, maybe even a month or two, one of my colleagues at work, was like, why don’t you get another opinion. And I don’t know why we didn’t think about that before but probably because we have gotten opinions less formal, but we’ve gotten opinions from doctors for years. So by the time that he said that, like, oh, well, I guess we could go see another high risk OB GYN and see, because that was the first high risk OB GYN that we thought I said that.
P: Before you get this next answer to the things that she said resonate with what you knew about your body,
S: Not really because I had always beaten the odds like when somebody tells me I can’t do something. I make it a point to go prove them wrong and say, I can do it.
P: Yeah,
S: so it just felt like she didn’t know me. She liked my personality she didn’t know what I was capable of. I was just a name on a piece of paper, and she was looking at the black and white, and not looking at anything else which is what she’s trained to do.
P: Right.
S: It felt like that door was closed pretty tight. Yeah, that’s it, that’s why it’s hit me and stayed with me for so long.
P: So one thing I want to capture is that when I’m reading about SMA, it seems like it would be a real challenge to be pregnant, do you have you see your arms.
S: I, when I look at myself, compared to other people with my disease and my severity. I think I’m, I’m on the stronger side, like I’m able to put my own makeup on, I’m able to write, I’m able to type. I’m sometimes my arms get tired and they just don’t really got extremely tired during the pregnancy and especially as my work year because I work as a school psychologist, so I had summers off, I got pregnant in May so I was that first trimester just finishing up the school year and normally I would just like down a bunch of tylenol or ibuprofen to deal with the arm pain I was able to do that course. So, my arms, didn’t work as well as they normally do. But yeah, in terms of my day to day post pregnancy and pre pregnancy I’m unable to move my arms, but I’m still considered technically quadrapalegic, and say I have such limited use of my music I can’t raise my arm. Like I can’t lift up my elbows. So, the strength I have is like for my elbows to my hands. Yeah,
P: yeah, fair. Okay so now you have been convinced to go get another opinion and is there anything to your any method to your search to find another maternal fetal medicine doctor like I don’t know how I would identify someone who might be more open.
S: So the first one was referred to you by my muscular dystrophy specialist. Then we went to, I think just my regular general practitioner and said can you refer to a high risk OB GYN for another opinion. And so, that doctor was like heck yeah you can do this, you could even have natural delivery and yeah you’re capable, I’ve done it before we can do this. So then it was just a matter of having that conversation of, is the risk worth the benefit. When do we just go for it, or do we not, and after we talked about it for like three months we decided, our lives would be so much one in which by trying and knowing one way or the other than to always wonder and have that void.
P: Yeah. So two questions. Number one, do you have muscular dystrophy community, do you know other people around you with a similar condition
S: at the time and no.
P: Okay, so they don’t have examples of like other women who’ve done it.
S: Correct. But it was interesting because when I was pregnant. There was another category of like the USA weekly, you know weekly magazine that comes in the Sunday paper. Yeah, there were a woman with my my disease exactly that was pregnant and telling her story, and I was like this is like six months long or whatever. So we actually got in touch with her and talked to her and got more information
P: wow, That’s amazing. I did find one article from 2018. That’s a review article, and they looked at the medical literature and obviously not everyone with SMA or neuro degenerative disease, who’s been pregnant is captured in the literature, but from 1950 to 2018. It was 67 people.
S: Yeah,
P: which is not a ton.
S: That’s why at one point we just had to make a decision, my husband and myself to whether to take the risk or not, because they did medical advice but only get us so far we had to just, you know, make a personal decision and, and, for us the risk was worth that the huge reward on the upside of things had worked
P: it is a huge leap of faith.
S: Yes, definitely.
P: What are the risks?
S: death
P: why is it potentially fatal?
S: They were very concerned about my lungs, and if my body was able to tolerate that component of it, there were risk of blood clots and and that kind of thing. Those are the two biggest issues.
P: Okay, well pregnancy as many people say is a stress test so I guess that makes sense. I guess I was imagining that it was mostly muscular and not like organ related.
S: Right, so it’s every muscle in your body right, so an example, my lungs, normally develop but the diaphragm muscles are not because it’s a muscle it’s impacted.
P: Yeah,
S: so my breathing capacity is lower than a typical person.
P: Okay, I apologize for my sixth grade understanding of anatomy.
S: Oh, No, it’s, it’s good to have the questions.
P: Okay, so you decided that you’re going to get pregnant super exciting. And how does that go.
S: It’s couldn’t have been easier we got an ovulation test, found out when I was ready and got pregnant the first try.
P: Oh my God, that’s awesome. That is totally awesome. you know so many people have a tough time getting pregnant and I’m so grateful. In your case that it was not hard at all because you might have attributed it to something else.
S: Right, and I in the back of my mind I’m thinking, okay, nine years of marriage, we’ve never had an oops. Is it because I can’t get pregnant.
P: Right,
S: so it was a relief when, what do you know, I was capable
P: Super exciting and then are you, I’m assuming they put you straight to high risk, you don’t go with a regular OB.
S: It was interesting because I would go see the high risk to do like the CVS testing to make sure the baby didn’t have my disease.
P: Okay so CVS testing or chorionic villus sampling is a prenatal test, in which they take a little piece of the placenta and test it for a variety of genetic conditions, including SMA cystic fibrosis and Downs in Sarah’s case She’s clearly a carrier for the genetics that create a SMA, and they didn’t know if her husband was, it looks like it’s pretty common to be a carrier between one and 40 and one of the 60 people. This test is usually done between weeks, 11 and 14 before amniocentesis can be done.
S: But like the regular OB GYN managed me the entire time.
P: Oh great, that’s nice so it’s less stressful.
S: Yeah, and he was like cuz we were assuming I would just go straight over there, and he’s like, Oh no, we can do this.
Okay, great,
P: that’s awesome. And so what was your pregnancy like were you nauseous in the first trimester.
S: Nope.
P: Nice.
S: Understand how you know that show they used to have, I didn’t know I was pregnant. To me, like, it’s like how do you not know you’re pregnant and except for the missed periods, I wouldn’t have known, like it was the easiest thing in the world.
P: That’s awesome. I think if anybody should be given that gift, it should be used so I’m glad you got it.
S: Yeah, one of the nurses said well we something’s easy for you.
P: Yeah,
S: I saw my muscular dystrophy specialist more often. And I got his attention because these doctors at these teaching universities, once you become someone they can write about their research papers they become very interested in you so that was good that I had his full attention. So yeah, it was, it was pretty easy pretty clear cut.
P: That’s awesome. And so, take us to the day of the birth like how do you know, today’s the day and what happens.
S: Oh well, actually let me back up because there was a time I was maybe six to eight weeks it well first of all, they were just hoping I would get to 32 weeks, because that would be a point where the baby could be born, and the lungs would be pretty okay if there would be a good survival rate, and I was able to work to 35 weeks and I went up to 38 weeks to deliver him full term.
P: Oh, let me ask one question about that. So, when I was pregnant the first time the baby was sitting in a way that made me My husband used to say I sound like Darth Vader, when I was breathing because like the baby was like laying on my lungs, you didn’t feel any of that, that was easy for you.
S: that was easy for me. In fact my lungs got stronger as the pregnancy went on because they did lots of pulmonary function tests on me, and they kept improving the further into the pregnancy I got, like, Wait, this is the opposite of what was supposed to happen.
P: That’s totally interesting.
S: Yeah, it was amazing. There was one night I remember where he turned, he actually turned himself from being head down to going side to side. And at the time I thought maybe I was going into labor you know going into labor or something. And it turned out to be such a blessing because he was just running around because I’m not a big person, so he turned. So he sat sideways in me and it gave us, you know, an extra month in there. It was very painful, when he did that but is allowed for more room for both of us. So he was very compliant… like even when I would have to go to the bathroom, you can just see his little butt stick out so he wasn’t on my bladder. He’s a very good boy,
P: I like that, it starts from the very beginning,
S: yes.
P: That’s awesome. What do you have to do for gestational diabetes I know you have to do the little prick test all the time.
S: Yeah, I was able to manage mine with just what I was eating I didn’t have to take insulin and everything, but I did have to do the blood tests every time I ate, and that kind of thing.
P: I feel like I was partially on that train and so I remember doing all the blood prick the finger prick stuff.
S: Yeah,
P: so that’s kind of a pain but it sounds like it resolved once you delivered me
S: Yeah, it was fine.
P: So now take us to delivery day you’re at 38 weeks. And are they are you scheduled a C section or you’re going to have a vaginal birth.
S: Well we had kept asking questions and talking about the different options, and there was one point when they said, if you have an actual delivery, an epidural isn’t possible because I have scoliosis, which is the curvature of the spine. So when I was 10 they put in metal rods to straighten that and they fused it with bone from my hip so it’s like glued there. So in order to get an epidural, they would have to drill through that it’s like okay that’s not happening.
P: Oh good lord, no thanks.
S: Yeah, yeah. So if I were, it was either, it would either be natural with no epidural or a C section, and what finally made the decision was they told me if something happened, Your our primary concern and not the baby. And it’s very hard for them to intubate me, so that it would take them a long time to do that. So it’s like okay well then that’s just not an option, we’ll do a scheduled C section.
P: Yeah, that makes sense right have as much control over it as you can.
S: Right.
P: Do you have any contractions at all before you go in.
S: Nope
P: Yeah, that’s I had the exact same experience, no contract felt like a business meeting, because like I show up at the hospital and you don’t feel anything and you just like wheeled to your room. Yeah. So what was the C section like,
S: Well, it was in a general surgery, operating room, because they were going to have to put me under anesthesia. But in order to do that, like I said, it takes them a while to intubate me, so I had to be awake while they intubated me, and I couldn’t take any sedatives or anything because it would have affected the baby. So, I am literally wide awake while they are sticking this tube down my throat.
P: That does not sound comfortable are you are you freaked out or how are you handling it.
S: It was an amazing anesthesiologist, he was fantastic, and he talked to me the entire time he went at my pace. They were not interested in rushing things. So, that which is better than because I’ve been intubated while sedated and that was horrible because I would come to and feel like I couldn’t breathe and all that, they would tell me if you’re fine, and it was horrible. So, being awake and having them actually care and talk to me and listen to me was a much favorable experience than the other.
P: Yeah, I mean a good doctor goes a long way. Right, they can definitely take you through some really hard things so I’m also grateful that you had a good anesthesiologist because that’s super valuable in that context. So, once they get the tube can they then like knock you out.
S: Yes, so as soon as they got the tube in. They put me under he was under anesthesia for no more than, you know, four or five minutes right before they let him out.
P: Yeah, the C sections really fast. Right,
S: yeah, yeah. And it was actually the doctor who prefers the C section was the one who told me not to get pregnant and why are you crying, and I made a point I said, I don’t want her to be the one. And I told them why and she happened to be the one on the calendar that day they didn’t have any control over it. So when she came back in to check on me after delivery, you know, it felt kind of like told yourself.
P: She didn’t say anything.
S: Not that I remember now if it stands out. So, if she did a great job sewing me up and everything because you can’t even see it. So, that’s amazing. Yeah, and somebody told me, Well, maybe it did her good to see how she said not to do it and it turned out better than okay
P: yeah yeah I agree. I mean it’s a learning, learning opportunity for her, and in my movie version of your story. She’s apologizing at your bedside, while you’re holding your baby. Just so you know, that’s when I when I write the movie. Yes. So, does it take a while to come out of the anesthesia after those whose section.
S: I don’t really know how much time went by, I remember what you know how they have to do the massaging of the uterus when you have a C section.
P: Yeah,
S: that was killing me, and they’re just like, I don’t understand why and then I realized later, I didn’t have an epidural. Usually these women aren’t feeling this…it was torture. And, but yeah and I remember before I had the baby I told me how it’s been, Joe come see me just stay with the baby. Don’t worry about me. And then in my recovery, I guess I totally flipped and like I want to say my husband. So he was like are you sure cuz she told me to stay with the baby.
P: It is, you know, you never know what you’re gonna feel like in that circumstance, yeah beforehand right so, so that makes sense. And then, and I’m assuming your son was fine, aced his APGAR.
S: Yeah he was, I don’t know what his APGAR was he was in NICU for four or five hours. And the other interesting thing is my husband did not get to be part of the delivery, because it was a surgery. Wait, and they said, you know you we would usually like the husband’s end to be moral support for the wives but you’re not going to be awake so he will not be there, so that was kind of a bummer for him, but he went and spent, you know they came and got him immediately, and they went to NICU together.
P: That’s awesome, did why did your son go to the NICU was because of the general anesthesia.
S: Yeah. Yeah, they just wanted to watch him, and he was only in there for a couple hours before they moved him to the maternity ward without me.
P: That’s like a drive by, that’s nice.
S; Yes.
P: And then what was that what was your recovery like in the hospital.
S: So they insisted that I go to ICU that night, just to be extra cautious, and at first they won’t even let me see the baby, and my husband’s like, No, you need to get her up here so she can see her son, so I got like five minutes in the hallway with our son before they took me to ICU.
P: That’s real hard right…that’s a hard thing to be separate in the beginning,
S: very hard. And I remember like I was wide awake in the middle of the night, they tried to bring in some pumps to help me get that going. But I didn’t have my baby, which that’s all I want it was my baby,
P: yeah, yeah, yeah…And so, how long were you in it, I see I’m assuming they just don’t want babies in the ICU.
S: I guess and I don’t remember them saying why they just put him in with my husband in a maternity room on the, on the ward. So and it was a private room because we got lucky with that. Um, and my husband like looking back, he’s like, I was kind of happy to have that time because you got him this whole nine months. I got him.
P: That is kind of nice for your husband. Yeah, I interviewed someone else who was in the ICU after her birth and she said they had a rule that there were no babies in the ICU because they’re worried about germ exchange between people in the ICU and a new baby and
S: that makes sense. Yeah.
P: So, I’ve definitely heard that that part before. And so, like, did the pumping work, how does that how does that go,
S: it didn’t go very well. It just, I tried once or twice but it didn’t work
P: And did you have any notions of like I definitely want to breastfeed or were you
S: Yeah, I was set to where this was going to happen. And we, I tried many times, it just didn’t, and I just finally said okay, this isn’t what’s important. You know, I let go of it, because it was better because my husband was going to be the one to get up in the middle of the night to feed. So it was,it was better.
P: that makes sense. Yeah. And did you have any like notions of like I definitely want to breastfeed or were you
S: Oh yeah, I was set to where this was going to happen. And we, I tried many times, it just didn’t, and I just finally said okay, this isn’t what’s important.
P: That’s amazing perspective because I’ve definitely I’ve seen my friends struggle with it, but there is like a lot of pressure to breastfeed just everywhere. So it’s a little bit tricky to to carve your own path in the beginning, so that’s hard so kudos to you for being able to give it up in a, in a way that makes sense for your family.
S: Yeah,
P: all those formulas have DAPA now and all the, you know, stuff that breast milk has and certainly it’s not exactly the same but it seems a much better substitute than maybe like our parents.
S: right I would agree.
P: And so, what was your recovery like when you got home,
S: I was pretty weak at first, but you know within a week or two I was fine like I remember he was born December 9 And my mom worked at the school I grew up in, so they had a Christmas program, like maybe a week later, and I remember we took him there so he could see Santa.
P: Wow,
S: yeah so we can have our first picture with him the Santa, because I didn’t want to take him to the mall yet.
P: Yeah,
S: and I would be kids good I worked with the school here as a school psychologist so all the kids wanted this you know they saw me pregnant so they were thrilled to see the baby and so that was fun. But yeah,
P: awesome.
S: I’ve been around and doing stuff.
P: How big was he when he was born, I neglected to ask
S: he was five pounds five ounces.
P: So that’s a good size.
S: Yeah, 18 inches tall, and he had the biggest feet it’s like his feet were the only things that had room to grow.
P; That’s very funny.
S: Yes.
P: And how old is he now.
S: He is 10
P: Wow, awesome. So what’s the into
S: He loves cars like Hot Wheels car video games Minecraft, your typical boy step Roblox that kind of thing.
P: That’s super cute both of my kids were addicted to Minecraft, at some point.
S: Yes, I think that’s a right of passage
P: no kidding. That’s very fun. So, what an amazing and triumphant journey you have had here. I’m so glad to hear it and I hope that you are, you know, shouting from the rooftops so everyone who follows behind you knows like yes this is possible or get a second opinion.
S: Yeah, and since then I’ve met up on Facebook with other women with my disease who have also had babies. So, if that had been the case, I wouldn’t have felt so alone so like we’re no charting new territory so that I think is helpful too.
P: That’s amazing. So, I am interested to hear if you could go back and give advice to your younger self, what do you think you’d tell her.
S: Just don’t stop believing it. And it was interesting because as soon as I got pregnant, I had this sense of peace come over me that the baby was going to be fine. So I wasn’t really stressed out, there wasn’t really a point where I said oh I wish I wouldn’t have done this, I just was very calm and like excited and like I knew everything was going to be okay. So, I think I would go back and tell her, everything’s gonna be okay, right, you can do this, and you’re going to be fine.
P: So why don’t we talk a little bit about your book
S: in the spring, I put out a children’s book, I have actually written in grad school, so it’s been, you know, just kind of sitting around for 13 years and I find the guy the illustrated consequences are tiny. And it’s about some animal friends who, instead of being embarrassed or ashamed that the ways that they’re different. they’re different in all different ways, they, they look for the differences and other people and they encourage it and celebrate it, so that they are, you know, proud of who they are as individual and that, you know, together we’re stronger with our differences and trying to be just like everyone else.
P: That sounds super cool, and you’ll send me a link and I’ll people will be able to find it.
S: Yeah, absolutely.
P: Okay, awesome. That’s awesome, that’s so that’s such a great story. I totally appreciate you sharing it with us. Thanks so much for coming on the show.
S: Thank you so much for having me.
P: One thing I didn’t understand before I became a mother is that becoming apparent requires a lot of toughness, both physical and mental and serious toughness have been tested her whole life. She seems wildly overqualified for this job . Her story is also a good example of what it’s like to live on the edge of medical understanding. As she said she and her husband just had to make a decision to have the baby at some point, because her experience is unique enough that their decision, couldn’t be guided by medical expertise. Thanks again to Sarah for sharing her amazing story. I’ll put a link in the show notes for Sarah’s class destination tomorrow, and her book differences are dynamite. Hope you enjoyed this episode, feel free to like and subscribe and leave a review if you can. It helps other people find the show. Thanks for listening. We’ll be back soon with another story of overcoming.
Episode 13 SN: Placenta: Best Friend of Frenemy? Brooke’s Story
Today’s guest is no stranger to hard labor. As a strength and training coach she’s seen how disciplined effort produces results. But long runs and weight lifting sets didn’t prepare her for some of the consequences that the complicated chemistry of pregnancy can produce. Through the course of her different pregnancies she tangled with HELLP syndrome–a pregnancy complication that requires emergency attention, and a visit by gestational diabetes. Now, with three kids under 5, she can add a new exercise to her regimen: child wrangling.
Find out more about Brooke here: https://www.wreckingroutine.com/
HELLP syndrome
https://www.healthline.com/health/hellp-syndrome#risk-factors
https://emedicine.medscape.com/article/1394126-overview#a6
https://www.sciencedirect.com/science/article/pii/S0925443912001901
Difference between preeclampsia and HELLP
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4692334/
Gestational Diabetes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515446/
https://www.sciencedirect.com/science/article/pii/S0925443919300237
GD by population group
Audio transcript
Paulette: Hi, welcome to war stories from the womb a podcast where women tell stories about getting pregnant, being pregnant and giving birth, with a focus on the difference between their expectation of the process and their experience. I’m your host Paulette Kamenecka. I’m the mother of two girls, and while I thought pregnancy would be challenging, I had no idea how challenging it would be for me. I had trouble with every part of the process—I definitely didn’t make it look easy, and I’m totally grateful to have made it through. Today’s guest is no stranger to hard labor, as a strength and training coach, she’s seen how disciplined effort produces results, but long runs and weightlifting sets, didn’t prepare her for some of the consequences that the complicated chemistry of pregnancy can produce through the course of her different pregnancies, she tackled with HELLP syndrome, a pregnancy complication that requires emergency attention, and was visited by gestational diabetes. Now with three kids under five. She can add a new exercise to her regime child wrangling. Let’s hear how she managed all the uncertainty of these trying situations.
P: Hi, tell us your name and where you live.
Brooke: Hi, I am Brooke and I live in Minnesota.
P: Oh wow.
B: Yeah.
P: How many kids do you have,
B: I have three.
P: Wow.
B: Yeah, three kids, we have three kids and under four years.
P: Nicely done.
B: Thank you. That was not what we thought would happen but that’s what we got.
P: So that’s usually the way it goes, before you got pregnant. What did you think pregnancy would be like?
B: oh man I you know honestly I don’t know if I thought that much about it, but I probably had this like vision that was going to be this like magical thing I was gonna be so in tune with my goddess body and like it was gonna be super easy and, you know, that whole thing, and I mean there’s definitely the magic, and all of that and then there’s all the other things that come with pregnancy, which I was much more adept at being aware of, rather than like this goddess SNESs that you tend to see around social media, yeah,
P: yeah, yeah, pregnancy has good marketing,
B: it really does. And there’s so many things that people don’t talk about.
P: Yeah,
B: like, even my sisters, you know, and it was like, come on guys like give me the down and dirty and they like, wouldn’t they wouldn’t, you know, so it’s a chat with your girlfriends.
P: Yeah, no kidding….Did you get pregnant easily the first time
B: we did, yes, we, so I’m a teacher, or I was a teacher, and at the time of my first pregnancy I was teaching so we were timing, or trying to time the birth of the baby with summer vacation because that I would get more time at home with the baby. I think we missed our goal, we wanted to like give birth in May, and ended up being June so it, it took us an extra month out of, maybe two or three months of trying, pretty close.
P: pretty close…did you find out what the home kit or how did you find out you were pregnant
B: yeah oh man I’m trying to remember. I think I found out really early, you know, they say wait till your periods late and all of that but I, I kind of knew that something was up. So I took a test around the three week mark, and it came out positive a home pregnancy test and I kept it a secret for a whole day my husband and I tell each other everything I kept it a secret the whole day. I was very proud of myself. And then I had bought, he’s from Minnesota, so I bought him a twins, their baseball team, like little onesy, and I like wrapped up and I gave it to him after work one day and that’s how I told him.
P: that’s good that’s a good reveal
B: yeah that’s like a first pregnancy standard.
P: well done
B: the subsequent one’s You’re like, Guess what,
P: and how was that pregnancy.
B: It was, it was good. It was great, everything was textbook baby was growing well she was breech. For a while I was nervous about that but around the 36 week check she had flipped. So that was good. Everything was fine.
P: Were you thinking natural birth.
B: I was very open, I wanted to go natural as long as I could stand it. Yeah, so I was preparing for all the like Hypno birthing I you know I was, I wasn’t in any one camp I’m gonna do this method but I definitely wanted to try and go natural you know I’m a runner so I run long distances, I run marathons and things so I was like well I can you know I can get through that so I could probably get through this. So, I was preparing for that.
P: Yeah, we should mention you’re like, you’re like a strength coach Aren’t you
B: yeah I’m a personal trainer and a health coach.
P: Okay, wow. Well, then I’m glad the first part for easy.
B: Yes.
P: So what happened at the end of the pregnancy.
B: So I went for my 36 week checkup. So I was teaching summer school, my first baby was born in June. So I was teaching summer school because in Colorado where I was teaching school ends, the end of May. So then there was summer school so teaching summer school so my 36 week check didn’t come till 36 weeks and like five days because I was busy teaching I couldn’t get in. The day before my appointment I was feeling kind of funny I woke up feeling funny, but you’re 36 weeks pregnant, you know you’re everything feels funny at 36 weeks pregnant. You know, I had this pain in my side a little bit under my rib cage I was really tired, like, just all those, all these things so the next day I went in, I had an early morning appointment went in, and she did a urine, I felt fine the next day, she did a urine sample. She did a blood draw. Went about the day she took the baby heartbeats good she had flipped she’s no longer breech, awesome. We’re good. Let’s schedule your next couple appointments we’ll schedule an induction day just in case, etc so I’m scheduled out for you know, five more weeks. So my husband I went ran some errands. And then, my doctor calls. So I was on the phone with my mother actually she was asking me how the appointment went I’m telling her, am I the Call Waiting kept keeps going and keeps going and keeps going, I’m like, Mom, this is my doctor I gotta go. So I call her back and she says, You are Man What does she say she said something along the lines of you need to go to the hospital immediately you are having a baby today. So basically there Oh, it was there’s protein in your urine. So that essentially means that you have preeclampsia, or what I had what she could tell from my blood work was I had hellp syndrome. your blood pressure is sky, like, very very high. So you could stroke out at any minute.
P: Well, that’s terrifying
B: Yes….we’ve not, you know it’s your first pregnancy your first baby, all of those that is not what you want to hear and the only things I’ve been preparing for are this like, I’m waiting for my water to break it’s gonna, I’m gonna feel the birth pains you know the labor pains and we’re gonna go to the hospital, it’s gonna be this like magical almost romantic thing, and suddenly it was like if you’re not at the hospital in an hour, you could die. And it was like, Oh, okay.
P: I talked to the maternal fetal medicine doctor I did get some insights about some of the medical issues, Brooke is facing. Hi Dr. Robertson thanks so much for coming on the show, can you introduce yourself and tell us about your specialty.
Dr. Robertson: I’m Patty Robertson, I’m a professor at the University of California San Francisco and I provide obstetric care to high risk women, specifically the subspecialty of maternal fetal medicine.
P: Okay great, we’re in the right place then. Do we know why hellp syndrome strikes people.
Dr. R: Well we know that some women are high risk for developing preeclampsia, and a subset of women who have preeclampsia, which is high blood pressure and protein in the urine, actually get help, h e l p stands for hemolysis where the blood, or hemolyzed is or breaks up elevated liver enzymes are part of it, and often low platelets, so any woman with Preeclampsia is at risk for help and help can be life
P: It Looks like the cause of health is unknown. There are a bunch of theories about the source of the problem, like a dysfunctional placenta, or immune system disagreement between the mother and the fetus. It’s a rare disorder affecting less than 1% of pregnancies. Risk factors include being over 34 Being Caucasian, having diabetes or kidney disease, having high blood pressure or a previous pregnancy.
B: And I, you know, I’m in disbelief talking to my doctor, so I said to her on the phone because I find humor in situations I shouldn’t. And I, I said, you know, the carseat is still in the box, can we do this tomorrow. You know because they’re supposed to have all the things right
P: yeah, yeah
B: and she was like, No, that’s not funny. Move it, and I was like, okay. So it took us like…
P: it sounds like I didn’t feel that badly.
B: I felt fine. I felt totally fine, my blood pressure was high when I had gone to my checkup so my blood pressure. I don’t know my bottom number but my top number is in the 90s, usually. So it was definitely above that. I can’t remember what it was but through the duration I was 140 or above by the hospital for the next, you know, week,
P: but it’s hard to feel a sense of urgency when you can actually feel anything. Right, right. I can feel it didn’t feel real.
B: Exactly like if she had told me this the day before when I wasn’t feeling good, I would have believed her.
P: Yeah,
B: I was tired I had pain, like I get that. But this next day I you know I went to a five mile walk that morning like I was good. So, yeah, that was hard,
P: so I’m imagining you, you put together the car seat quickly.
B: I think we threw the box in the trunk. So I took a shower and you know I’ve been listening to all these birthing podcasts, so I made sure I ate something I showered I cried, I called my family I packed the go bag because I hadn’t done that yet, you know 36 weeks. And then off we went. It took us, so she wanted me at the hospital in an hour and that hospital is a 45 minute drive from where we live, and it took me like two hours to pack shower, eat and stop crying.
P: Yeah,
B: So it was a three hour process,
P: so you get to the hospital and how are you received?
B: it was, it was really terrifying, like not very well done at all but so we we walk in and we had toured the hospital ahead of time we did all those first time, you know, pregnancy things we toured the hospital we knew where we were going. And so we go up to the pregnancy floor and they they’re expecting us like the doctors called ahead they’re on their way. So we walk in, they say, Are you Brooke Selb and I said yes, so they scooped me right into the room that’s like right off the entry doors like you don’t, I didn’t even go in the ward, you know, right there. They had me change into a robe, when, at that point I changed in the bathroom like no modesty was gonna continue but it’s like changing the bathroom whatever and they’re like all like kind of waiting like tapping their foot outside the door, So then they tell my husband, they say, Okay, you go down and move the car and go park the car and get her bag, and come back up within the 10-15 minutes that it took my husband to do that I was in a gown in a bed, hooked up to I think it was three different IVs.
P: Oh wow
B: And, yeah, like just hooked up strapped up all these things and I was like, What is going on, and my husband comes in after he took the car to the parking garage and he was like, he just looked at me like a deer in headlights, like, this is nothing what we talked about like we’re not we’re not prepared for what this, what is this,
P: yeah.
B: So we were there for a while so I got put on magnesium sulfate, which helps with the reduces your chance of having a stroke.
P: Okay
B: so, so I got put on that, and you have to be on that. I want to see it was 24 hours on that before they were going to induce me to get the baby out. So basically just watching me and making sure that I wasn’t going to have a stroke.
P: Right, so that sounds scary.
B: It was terrifying and it took to my, my health insurances such that whatever doctor is on staff is the doctor who will deliver you. So we saw, I think two or three doctors before one doctor came in and actually looked at us and saw we were so terrified and he said, has anyone explained to you what’s going on. And we said, No. And so he like pulled up a chair he sat down and he explained to us what my condition was what the care plan was, what the result could be good or bad.
P: Wait so go slowly here. What did he tell you.
B: So he, he told us that, you know, because this is HELLP syndrome. It means you’re an organ failure, your kidneys and liver are going down, it could result in stroke you could have a seizure. And if, if we do not get the baby out, it this could kill you and the baby.
P: Okay, a quick summary. Both preeclampsia and HELLP construct quickly without much warning, although doctors are working on finding biomarkers to identify women who are at higher risk for these conditions, and effort to alert them before everything goes south, some people think HELLP is a severe form of preeclampsia, but there’s also a camp of researchers who think HELLP is its own separate disorder because some women experienced help with symptoms that are different from those typical for preeclampsia, so maybe the jury’s out on the exact relationship between these two conditions. But in any case, both are serious, and both require immediate attention.
B: So then I was on the magnesium sulfate. And then they started Pitocin. And he said that if the Pitocin wasn’t going to work then I would have to have a C section which was the absolute last thing that I wanted to do.
P: Right.
B: so yeah and he actually has the same doctor that delivered my second as well.
P: Nice,
B: Yeah, yeah,
P: Could you feel the magnesium sulfate.
B: Yes, it makes you crazy, so it makes you super tired I couldn’t keep my eyes open for more than 20 minutes at a time so I kept like falling asleep. I’m need glasses for distance driving at night, and I had to wear them all the time because I couldn’t, everything was blurry or seen anything and I was like so hot, it makes them really hot and everyone in the room my poor husband, They were freezing because they turn the air down really low, and he was just freezing the whole time because you’re just like, sweating, so it makes you really out of it.
P: That seems like a hard state to be in to push out a baby.
B: Yes, and, and you can’t eat anything. And then they have me on Pitocin. So you’re just all whacked out right. And then the other issue with HELLP syndrome is your blood platelets drop. So, if my blood platelets dropped too low, they would not be able to give me a epidural, because they can’t get it in for risk of bleeding out.
P: Oh wow,
B: so my nurse who thankfully for us on thankfully for the woman before me, the week before she had had a patient who also had HELLP syndrome so she knew exactly what to do. They were testing my blood every like two hours so she rushed ordered a test, and said look if your blood platelets are at this specific level I want to say it was under 100,000 I’m not great at my medical but it was somewhere in there. She said if your blood platelets are still above this number, I’m going to have him put in the epidural port, essentially, like we don’t have to turn it on, but you have to get it in. Thank goodness because they got, they put in the epidural. And then my next blood draw my platelets were too low to have done it.
P: Oh wow.
B: Yeah, so if anyone has ever pushed in a bed or like gone through labor in a bed where you can’t get up and move around, it is so uncomfortable like you want to be moving and, you know, rocking and you can’t do that when you have HELLP syndrome. So that was really wonderful of her, and then I ended up using the epidural, so it was great, it was there,
P: and you just had a birth, just with the epidural.
B: I did so it took three and a half hours of pushing, I was on oxygen in between pushes because I kept passing out.
P: Oh my god,
B: yeah. They finally let me eat ice chips. During pushing, and I was like, downing them because I hadn’t eaten anything in quite some time. And they made me like stop at one point, they’re like you have to stop eating ice chips you need to focus on pushing and I’m like okay but I’m like really dehydrated, you know, whatever. So three and a half hours, and then the doctor who was a different doctor than the one who explained everything to us because rotation. She started pulling out the, the suction.
P: Yeah,
B: right. And I was, I was done, I still had some fight left in me, magically, and it was like I do not want another intervention. Like my friend just had a baby that had to get suction and the poor baby’s skull was all like bruised up, you know all of this, and so I just started. Forget pushing with contractions, I just started rage pushing, essentially. Everything I have is going into this right now and then out she came.
P: Oh nice.
B: Yeah it was great that Rob said the doctor almost missed her because she came out so fast she like barely caught her and
P: that’s a pretty good ending after the, after the birth, how do you feel,
B: I felt very tired but you know you’re euphoric, because all of a sudden the baby comes out and they popped her on my chest. And this doctor was so great, she, she knew that I was so upset my birth plan had completely gone out the window., you know my like mental birth plan I didn’t type it out or anything but my mental birth plan. And she said, What else was in your birth plan that you really want to have happen. So I had a couple things I wanted delayed cord clamping I wanted to push with contractions and I wanted immediate skin to skin, so she was able to give me all three of those until you know three and a half hours and where she’s like, Forget contractions, you know, So then you know I get this like baby on my chest and, you know, all of a sudden you’re like totally fine.
P: Yeah, that’s lovely.
B: It was and then it was hard because you still, if you have health syndrome, I still have to be on magnesium selfie. For a number of hours after birth, you know you deliver the placenta. Essentially that’s supposed to remedy help syndrome, you’re supposed to just like, almost snap back to normal.
P: If the placenta is the bad actor in HELLP syndrome causing all these problems. Why is it that once you deliver the placenta, all the problems don’t subside. Well, that is a great question, and nobody even really understands preeclampsia that well we’re study, trying to figure out why you get it, and we know how to cure it, which is to deliver the baby and the placenta, but for some women, it triggers a hypertensive response that persists. And in fact, even women who have a normal blood pressure normal delivery and then let’s say four weeks later they get a severe headache and they go to the emergency room, they can actually have preeclampsia, you can get it for whatever reason, up to 12 weeks. Now a lot of older moms have preeclampsia it’s one of the risk factors and they’re also at risk of high blood pressure, perhaps genetically in their family. So, pregnancy is kind of a stress test, it might bring things out that you’re determined genetically to have in 10 years or 30 years, like diabetes or high blood pressure, and we know that one of the leading causes of maternal death is cardiovascular disease which includes stroke. Now usually stroke occurs at a top blood pressure number of 160 or greater, but with HELLP, we’ve seen stroke occur at 140 over 90, which we use as the enrollment level for blood pressure, high blood pressure, diabetes, they both can persist and need to be acknowledged by the woman that it could be a chronic condition for her.
P: I want to just add here that numerous sources suggest that women who experience preeclampsia eclampsia or help are at a lifetime increased risk for cardiovascular disease, and so are the babies that were a part of the preeclamptic eclamptic Or HELLP pregnancies, so it’s important to follow up with your doctor to keep track of these risks, after the pregnancy is over,
B: but I couldn’t be left alone with the baby for a full 24 hours while this stuff got out of my system because I might drop her I still couldn’t get out of bed, you know, the whole thing, so that made it that made it feel, it was hard to bond with her because I couldn’t. If I was already holding her I was still stuck in the bed I couldn’t get up and like put her in the bassinet I had to have my husband or have a nurse.
P: Yeah,
B: take her and then put her down and then you’re you know you’re trying to establish a breastfeeding relationship and you know my body wasn’t ready to give birth so that was hard and
P: yeah,
B: it’s just a whole you, you enter into the next phase of tough, and that’s with any with any newborn.
P: Yeah, it’s hard. The fourth trimester is harder than also harder than marketing.
B: I, people need to talk about that more the fourth trimester is the worst. My third is eight months old right now and I feel like I’m just coming out of a fog. Yeah, so it’s a long process.
P: and babies are a lot of work,
B: they really are.
P: After this unbelievably like physically challenging thing right that’s like the next the next up, you’ll be up for many hours in a row, do they let you leave the hospital right away or not.
B: My blood pressure would not come down. So, I we were there, five days in total. Five days. We left when our baby was, she must have been four days old. Most people leave that when they’re babies a day, maybe, you know.
P: Yeah,
B: they kept waiting for my blood pressure to come down and it wouldn’t, to the point where, on day four, they’re like okay, you’re gonna be discharged a one more blood pressure tech and then we’re gonna, you know, most likely let you go when I was like, awesome. So I’m like, I’m dressed on packed like babies in her going home outfit you know all these things were ready, they come in, they do my blood tests and they check my blood pressure and they’re like, we can’t let you leave, I sobbed like ugly cry. My poor husband man like she hasn’t even been out so I was you know the whole thing like You’re so crazy emotional at that point and you’re just like nonsensical. So on day five, the doctor comes in and is the same one who explained a lot to us in the beginning and he was like, Okay, I hear you’re really upset. I don’t want you to leave but I will let you leave if you promise to test your blood sugar I’m sorry, different pregnancy test your blood pressure. Yeah, thank you. Every day, and you have to be blood pressure medications, I was like, Okay, I’ll do it, I’ll do it. Where do I sign let me out. So then we got to leave. Thank goodness and it took about another week or two, a blood pressure medication for it to finally come down, and then it hasn’t gone up since,
P: could they explain why it didn’t snap back after the placenta was birthed.
B: No, no, but there are some women who even develop preeclampsia, after birth.
P: Yeah. Right, right. Yeah. wow, but that baby was fine and then you were fine and
B: she’s great. She was born at 36 weeks and six days, so she was considering late term premiee you to write that on all your paperwork she missed the cutoff by three hours. This was really frustrating since she was little she was six pounds when she was born, you know, cuz she needed another three weeks to be good, Maybe a good nine pounder right. Oh,
P: six pounds is nothing to sneeze at…that’s like, you know that’s a legitimate weight.
B: Well, let’s get into my next one.
P: You bring her home and how long before you get pregnant again
B: Yeah, two years, they are exactly two years apart.
P: And how was the second experience.
B: So it took a year to get pregnant again. The second pregnancy was great textbook, I was taking a baby aspirin every day up to 36 weeks to prevent preeclampsia and HELLP syndrome again, so that was some new research that had come out every, everything was great, went into natural labor, did the whole like magical experience going to the hospital did get an epidural, thank goodness, and then pushed, he was out, it was it I think I pushed five times or something and he was out and he was nine pounds one ounce.
P: Wow,
B: that was a little different. Yes. He was a Big Boy
B: are you and your husband tall?
B: yes I’m six feet and my husband is 6’5”
P: Okay, well that makes sense then you’re gonna, have a big baby
B: yeah, my husband was 12 pounds when he was born. It was very large
P: Oh my…that feels very Guinness records kind of
B: yeah, right…his poor mom, she’s like really tiny.
P: But that one was that one went smoothly so
B: he was great he was like my little textbook baby.
P: That’s all. Yeah. So now you have to at home. Yes,
B: but then a year later you get pregnant for the third time oh my gosh, eight months later I don’t know what we were thinking. Yeah, so I got pregnant for the third time and it was one of those like I’m, it’s the middle of the night, it’s like two in the morning I’m feeding the eight month olds, you know, and I’m like thinking in my head, you know, because your head starts running at that time of night and you’re like, No, no, wait a minute. No, and then I go take a home pregnancy test I’m like digging in the back of the door, only got my husband you know, where’s this thing and I take it and I, I, I really cried. I was not ready.
P: Yeah,
B: it’s really close and people do it and they do it a lot closer than 19 months apart
so much respect, it is hard,
P: it is hard. Yeah, yeah. But also, like, you can’t, it’s hard to also time.
B: Exactly, exactly.
P: Yeah, so you kind of get what you get. And so how was the after you recovered, and, you know, got excited found some joy for the third one. How was that experience,
B: a mess. It was a mess. So I was diagnosed with gestational diabetes, so everything was fine. And then I got gestational diabetes. So that was,
P: is that like halfway through or,
B: yeah, so you do the, when do you do the sugar test,
P: it’s like 20 weeks
B: 20 weeks 24 weeks I want to say, and I failed it. But at this point we had moved to Minnesota. So my first two babies were born in Colorado and then we moved to Minnesota. So diagnosed with gestational diabetes with some new doctors, etc. And I was so upset about it I’m a health coach. I’m a personal trainer I run, I eat mostly healthy foods you know I’m not like a sugar monster, but I just, I couldn’t mentally wrap my head around the fact that I had this,
P: it’s emotional for Brooes to get this diagnosis because she thinks I take care of myself. I exercise regularly and I’m careful about diet. How did gestational diabetes fall on me,
Dr Robertson: but another way to look at it if she hadn’t been so big. The consequences of both of those diseases could have been much worse.
P: Yeah, yeah, just,
Dr. Robertson: you just don’t know. But no matter how hard you work at perfect health. It’s not totally under your control.
P: Yeah,
Dr. Robertson: so many of our patients are in their 20s and 30s and 40s, and they don’t feel that they deserve a diagnosis of diabetes, even if they had it during pregnancy, and then they don’t go back for follow up testing so they don’t know. And then they eat their regular diet, and then they end up with complications because they haven’t been followed, appropriately, like to check their eyes if they have diabetes once a year to make sure there aren’t extra blood vessels growing to be associated with blindness later on.
P: So it sounds like you were saying, if you have gestational diabetes, you’re potentially at risk of developing type two diabetes later.
Dr. Robertson: Yes, and sometimes actually women have type two diabetes in don’t know it. And then we don’t really know until she comes for the follow up test after her pregnancy is over whether she’s a type two or pre-diabetes are totally normal.
B: My sister had it with her third baby and my mom had it with her third baby which is actually me. So you know there’s that component. You’re also more likely to get it if you’ve had a nine pound baby. And my second was nine, one, yeah. And you have to be over 25 How old was I 34 Yeah, so, you know, I had some of the precursors to getting it but I eat healthy and I exercise and like this isn’t me, you know, whatever. So I would, I tried diet I tried exercise, I tried everything to not have my blood sugar numbers be above what they should be. So you know I got up at two thirty in the morning and I had a protein snack and then I, I went for walks before bed and I tried testing it before I even got out of bed in the morning and I tried testing it right before you know I tried all these variations and it just, it wasn’t happening so I ended up on insulin for nighttime insulin because it was my morning fasting number, that wouldn’t come down, right, for most of it towards the end, the last three or four weeks. It was mostly all day that my, I really had to be careful about what I was eating, to make sure my blood sugar was within range. I was so hungry the entire pregnancy. I was so hungry. Oh man, because you can eat a lot of fruits, wheat, a ton of fruit, you know, things like quinoa beans, you know, all those things would spike it, so no different for everybody, what spikes you. Yeah, so like something my sister recommended I try I couldn’t have, because it would spike me. So it was a lot of trial and error.
P: That sounds hard to manage just kind of in general but especially with two little kids.
B: Yeah, and I was, I was not pleasant to be around, like I was cranky, so
P: that sounds really hard and, and I think I just saw an article suggesting that doctors think there’s some genetic component to gestational diabetes.
B: My parents are not diabetic. So, I don’t know I mean,
P: I don’t think you need to be diabetic but I think the thing I read said that type two diabetics have some genetic component, so there’s some familial thing passed passed down, and diabetes you also have some kind of genetic component that affects how you process insulin, and pregnancy obviously is a big chemistry experiment, and so that also all which is to say that even if you’re running every day and eating perfectly well. You can still have it. Right, yeah.
B: Yeah, and I mean there is, you know it’s your plus the reason you would get it is your placenta is making hormones that are causing the glucose to build up in your blood. So it’s like your placenta the hormones in there is doing it. Same thing with, you know HELLP syndrome is you have to get the placenta out it’s like all these things were like my body and the placenta, are not communicating very well,
P: and that’s that is genetic right that is you and your husband’s DNA are, are kind of duking it out to figure out like how invasive the placenta will be and how it will operate
B: It’s crazy.
P: I remember with my second eyes. I must have failed that the sugar test, because I had to prick myself for, you know 10 days or something and that was, um, that’s not pleasant.
B: No, and you probably have to do it four times a day. Record your numbers and don’t lose the paper and, it’s a mess
P: that’s what is it, what does gestational diabetes do to the birth, anything.
B: So they just they not a ton, they had to induce me, which I was very upset about, because you know I had such a magical experience with my second of going into natural labor, but the fear is if you end up with a nine pound baby, you know, the longer your pregnancy goes the heavier the baby will be, if you’re a gestational diabetic you’re likelier to have a larger baby, and because I’d already had a nine pound baby. They were very fearful that I was going to have another
P: Yeah,
B: which creates a lot of complications, so I was induced at 39 weeks, which is good, they let me go that long which I was saying before, and then they test, you have to test your blood sugar regularly throughout the day, you’re limited in what you can eat during induction just so exhausting. I mean, let us eat Please Like we have to push you know there’s this whole like mission at the end. And then they test once the baby’s out, they continue to test both of you for the next 24 hours,
P: and how did that go.
B: It was the birth was the mess induction wasn’t, it was fine. It was a long day, you know they want you there at 7am to get started on all the things and I wanted to do it as naturally as possible so I had the balloon catheter first. I tried all the remedies and then still ended up on Pitocin.
P: Yeah,
B: so two babies through Pitocin right. It was a long day so we were there at seven in the morning, and the baby wasn’t born till I want to say nine at night.
P: Oh, that is a long day
B: it’s just exhausting and like contractions were would come if I was standing up, if I sat down, they stopped. So you know you’re just trying to you’re on your I was on my feet, the whole day.
They don’t let you eat, you know by the end of it I did get an epidural because I was just so exhausted, and they, you know, I was like, Oh, this hurts something hurts or you know I’m fine whatever maybe we should check or something and they were like, oh you’re having a baby right now. I was like, Oh great, like my epidural was working really well too well. So there was a race actually between me and the woman in the room next door who also got induced that morning of who was going to go first and the doctor was delivering both of us, she was suiting up for the woman in the other room she was going to push the nurse goes running to go get her and go stop. Come over here. It was like okay, so she got suited up baby was out in a push. I pushed the doctor made a joke, I laughed, made a half push and the baby was that
P: that’s how it’s was done ladies and gentlemen.
B: She’s a very happy girl.
P: Was she big?
B: she was eight pounds six ounces.
P: Oh, so that’s not so bad.
B: But if we went, you know, if we went to 40 weeks she would have been nine pounds.
P: yeah. For sure
B: So they were right.
P: And then does the gestational diabetes goes away after the baby’s born.
B: Yes, so we will both were instantly fine, but you do. For me, I have a higher risk of developing type two diabetes. Now, you know, later in life. So, even more important to eat. Not all the Halloween candy.
P: Yeah, yeah that’s tricky. I agree. Okay, so you brought her home and the other kids are excited how did that all go, oh
B: yeah, our, so we had them come to the hospital to meet her are then three year olds, our oldest girl she was very excited to meet her. They hit it off right away our son he was 19 months at the time, so it took him a little longer, as it does, you know, it took him about, I’d say a month, a month to six weeks to kind of be like alright, she’s not leaving, I better, you know, get on this train, and now he is her biggest supporter. He keeps an eye on her. He picks up her toys when she drops them like he’s just in love with her.
P: So that’s super cute. So how old are they now.
B: Oh gosh, so four. So everyone’s almost a half so four and a half, two and a half, and nine months.
P: Wow. It’s a busy house
B:, we’re tired. There’s a lot of joy, but there is a lot of teaching them how to be a little humans who are kind and respectful. So, yeah, yeah. And I, you know, when we moved to Minnesota a year and a half ago I left my teaching job to be home with the kids. So it’s, it’s a learning experience so I’ve been home now for almost a year and a half. And I don’t think I’ve ever done so much self reflection and like self checking than than I did in 11 years as an educator, so
P: yeah it’s it’s a totally different process, right
B: it really is, it’s a different beast,
P: but it makes you think about how you were raised right like,
B: oh yeah, there’s a lot of that to think about,
P: oh, this is how my mom did it. What does that mean,
B: right, or what should I do differently or, You know, all those things.
P: Yeah, that’s awesome. So, what is the oldest one into
B: anything make believe. So, any like pretending we don’t know each other and we knock on each other’s doors and we know she likes to play house, but like pretend that we don’t know each other to play house it’s not like she’ll play house with dolls, we have to play in person she’s super social, which is weird because my husband and I are introverted, so she’s like our little butterfly,
P: that’s fun to watch.
B: Yeah it is, it’s good for us to she like just chats up like she’s very little stranger danger which is not great she’ll just chat people I’m like okay, like they don’t need to know.
P: Yeah. Is your son Similar.
B: No, he’s our little introvert so even if we’re just hanging out as, you know, our family of five, you know, after a little while he kind of wanders off by himself to a different room to play by himself for 10 minutes and then he wanders back super into trucks and animals, like,
very boy, you know,
P: yeah, yeah. And do you have a line on the little one yet.
B: She’s She’s feisty. She’s redheaded, You know, so there’s that. The other two are blonde. She’s our little redhead, anything her big siblings do. That’s what she wants to do she wants to be in the mix, she doesn’t want to know she doesn’t want to eat. She wants to be with them.
P: Can she walk yet or is she still crawling?
B: No…She’s almost crawling she’s doing the rocking she’s almost figuring out the weight distribution on one side to the other can be any minute I’m terrified.
P: That’s a very cute. Well, it sounds like, people look after her.
B: Right, yes that and we have to like bolt everything down.
P: That’s very funny, so are you, are you still training, are you still doing the training.
B: Yes. So I personal train online and run coach online, which is really great.
P: and who are your clientele?
B: so I predominantly work with women with young kids who want to lose weight or cross the finish line, so anywhere from a 5k to a full marathon.
P: Wow that’s cool.
B: Yeah, its so much fun. I love it and it gives me something during the day, you know, in those like downtimes, to think about.
P: Yeah,
B: which is really, it’s very sanity, keeping
P: yeah, it’s nice to have something something adult
B: yes then to have something else on my brain,
P: so and that sounds like a useful thing for like a postpartum period right when everyone wants their body back
B: oh my gosh yes it takes so long, I mean I’m nine months out and I’m still getting there, so it takes a long time but yes I work with women who are postpartum. I work with beginners, the whole nine.
P:That sounds awesome.
B: Yeah,
P: I think I have your, your website is it called wrecking routine is that what it’s called
B: wrecking routine because I am not a fan of routines, except when it comes to my kids and their time for bed.
P: Yeah,
B: so it’s about doing something different, and seeing what happens.
P: That sounds awesome, I will I’ll put a link to that in the notes so people can find you.
B: Great, thank you,
P: thank you so much for sharing your story, you have a lot of adventure in that in that in those experiences I’m glad that your son was super easy, but you have like a contrast right you experienced at all. It’s not so easy to make another person.
B: No, it isn’t. Takes a lot,
P: but luckily you paid off with the joy in the end.
B: Yes. Yeah, and I get to be home with them and so
P: yeah that’s lovely.
B: It’s really nice.
P: Awesome. Thank you so much again for sharing your story.
B: Thank you, I appreciate it.