Episode 24: Birth Before and After becoming a Doula: Keisha
Episode 24SN: Birth Before and After becoming a Doula: Keisha
If you look at birth over time, it used to be the case that women were always attended at their births by other women, and sometimes midwives, and these births happened at home. In the 1930s american women moved those births into hospitals, in part to pursue effective pain relief and the allure of more safety–but for a good decade it was not actually safer to have births in hospitals. And over the next 50 years the process of childbearing became more heavily medicalized–with benefits: lower maternal mortality rates and less pain in delivery. But by the 1980s, in part to push back on the increasing rate of C sections, doula’s started to attend women in the hospital–they were trained attendants who had been to other births and could advocate for a laboring women who was too involved in the process of birthing to also be involved in all the decision making…
Studies suggest that doula’s can have a very positive effect on a woman’s experience and today I’m excited to talk to a doula, both to hear about her birth experiences and her work. And in fact, in this case, my guest became a doula in large part in reaction to her first birth experience…
You can find Keisha on Instagram @keishadoeswork or on doulamatch.net under Keisha Graham
Cervix ready for birth
https://www.healthline.com/health/pregnancy/cervical-effacement#effacement-vs-dilation
https://www.healthline.com/health/pregnancy/cervical-effacement#diy-measurement
Giving Voice to Mother’s Survey
https://reproductive-health-journal.biomedcentral.com/articles/10.1186/s12978-019-0729-2
Nitrous oxide
https://academic.oup.com/bjaed/article/16/3/87/2897753
https://emedicine.medscape.com/article/1413427-overview#a2
Failure to progress
C section risk versus risk in a vaginal delivery
https://www.mayoclinic.org/tests-procedures/c-section/about/pac-20393655
Biggest C section risk: your hospital
https://www.consumerreports.org/c-section/biggest-c-section-risk-may-be-your-hospital/
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. I didn’t have a straight path through any part of the process of growing a family, and my experience was complicated enough that I never considered a doula, in part because I had no choices to make at the delivery, all those choices were being made by doctors.
But if you look at birth over time. It used to be the case that women were always attended at their births by other women, and sometimes midwives and these births happened at home, in the 1930s American women move those births into hospitals in part to pursue effective pain relief, and the allure of more safety for a good decade it was not actually safer to have births in hospitals but that evened out. And over the next 50 years the process of childbearing became more heavily medicalized with benefits, lower maternal mortality rates and less pain in delivery, but by the 1980s in part to push back on the increasing rate of C sections doulas started to attend women in the hospital. They were trained attendants who had been to other births and can advocate for labor woman who was too involved in the process of birthing to be involved in all the decision making.
Studies suggest that doulas can have a very positive effect on women’s experience, and today I’m excited to talk to a doula both to hear about her birth experiences and her work. And in fact, in this case, my guest became a doula in large part in reaction to her first birth experience.
Let’s get to her story.
Hi, thanks so much for coming on the show, can you tell us your name and where you’re from.
Keisha: Yeah, my name is Keisha Graham and I’m from Richmond, Virginia.
P: Great….And Keesha How many kids do you have,
K: I have two, two girls. My oldest is 12 and my youngest is six.
P: Oh nice.
K: Yeah, we’re a household of girls so no one knows how old we are, we all lie about our age.
P: Excellent, good as long as you keep in the family, it’s perfect.
K: Exactly.
P: So before you got pregnant with your first, he wants to have some idea about what pregnancy, like, what were you imagining it would be like?
K: The only thing I knew about pregnancy before I gave birth was what I saw on TV, and I had a cousin who had a baby a little bit before I did she have two babies actually and I had spent some time with her like her husband was deployed so I went to her state and helped her raise her two little kids but I didn’t see her, Like be pregnant I knew kind of what raising a family was like, but pregnancy was kind of like foreign to me, except for what I saw on TV.
P: So does that mean that you’ve thought it would be easy or, you know, you’d be gorgeous the whole time or
K: I didn’t, I didn’t go in, I’m somebody who just doesn’t go in with anything with any high expectations, so I thought that if there was anything that I needed to know I definitely would get it from my provider or, you know, my mom or my grandma would tell me or my cousins, I just thought that it would be simple and like straightforward.
P: Okay, that’s a good setup. Alright, here we are. So, did you get pregnant easily the first time?
K: Yeah, it was an oops,
P: I’m glad. I’m glad to meet an oops because you’re the story we’re all chasing right? everyone thinks like…. so good that’s true in some cases.
K: The first one is easy but the second time is hard, is the second time we were planning and it took a while.
P: So let’s focus on the first one, and you found out with like a pregnancy test I assume like a home kit.
K: Yep, I went to CVS, I find out that I always find out that I’m pregnant pretty early. So on my lunch break, I went and got a pregnancy test and took it and, you know, text, my boyfriend, my husband now that we were having a baby.
P: Oh wow.
K: Yeah.
P: And how was that first pregnancy, what was that like?
K: it was pretty easy, it was pretty straightforward. I had no sickness had no complications. You know, it was the ideal pregnancy, you know, heartburn, that was the biggest thing that I think I threw up once.
P: Great. So far this is great, this is going great…so take us to the birth and like, are you 40 weeks and I myself, maybe I’m the only one I didn’t know what a contraction would feel like so I didn’t know I was having contractions when I was, like, tell us that whole story.
K: My birth story. Yeah, is when things get different, so yeah I thought I was going to get everything from my provider, I trusted my provider. So my due date was December I think it was the 16th and then I think I went to my 40 week appointment on the 22nd. And so they did an ultrasound, and the ultrasound tech said, your fluids are a little low, but nothing to be concerned about. I went to see my OB, and she was like, Do you want to see your baby today, and I was like, Sure,
P: yeah.
K: And never told me anything about what my cervix was doing if my cervix is ready to be born.
P: Okay, what does your cervix look like in labor in early labor your cervix starts to open or dilate and it stretches and gets thinner which is called a placement or softening or ripening. If your doctor is testing the readiness of your cervix, it will be closer to ready when it’s softer as labor progresses the cervix which is about four centimeters long, thins to the width of a piece of paper, and will open from the width of a blueberry to the width of a melon about 10 centimeters, you’ll be given the go ahead to push. If you’re being induced doctors may use drugs to ripen the cervix, that try to mimic the hormones, your body will produce to get that job done, and the hormones cause the cervix to thin and your uterus to contract
K: that inductions sometimes take a while, and mines ended up being two and a half days.
P: Oh my God, that’s a long time. So, so did you get to like go home and get your stuff and then come back to the hospital or how did that go
K: No, I just went right up to labor and delivery, my boyfriend was supposed to go to work that day so we had to pull out of work. I had my mom bring my stuff up, and you know, We thought it was gonna be pretty quick. She said, Do you want to see your baby today so I thought, you know, maybe midnight I would at least, you know, have a child.
P: Yeah, today implies today. I’m with you. Yeah, so they get you in the hospital room. Did they put you on Pitocin or what was the process.
K: So that part’s, it was a blur. So I started with a servo, I do remember I started with some Adele, and it was hard, just like any cervical ripener, it was sharp and crampy. And I wasn’t given like the option of what drugs, I could take or what my options were at that point, everything was just. Here you go, this is how we’re going to do it, do you want me to refill your water, so I started with cervidil and after that took a while, that took a long time and then
P: I had no idea It felt like anything.
K: Yeah, it feels like cramps, it feels scratchy on your cervix. Well, this was my experience, it was scratchy on my cervix, and I felt it being there, and then I felt like really strong crampy sensation after,
P: so uncomfortable is what it sounds like,
K: yeah, it was terrible.
P: And then what happens next.
K: And so then, at that point I get Pitocin. And then, I was on Pitocin for a while, and then after Pitocin I will while I was on Pitocin. I ended up getting an epidural.
P: Did your contractions start with Pitocin like does that work.
K: Yeah, I think, with the cervical it was working for a little bit but they weren’t as strong and then serve it only takes you, but for, you know, so far, it only like ripens the cervix is not going to dilate the cervix so at that point after I was as ripe as I was going to get I guess they were like Pitocin is next. Sorry, I was in a while.
P: And what was that like,
K: pitocin was hard but then I got an epidural. So, everything, where everything else that I felt physically was fine after that point. So I have a lot of introduction like interventions. After that point, and you know I kind of breeze through them, it was pretty simple.
P: So they give you the epidural and then and I just kind of waiting right till you’re dilated enough.
K: So the nurses come in again. They like roll check your cervix after X amount of time they check it it’s not where they want it to be so they introduce another intervention. So then after the Pitocin. I get my water broken, actually, with this birth, it wasn’t like there was no consent, it was, I’m in here. I’m gonna break your water, it’s done.
P: I’m already feeling like this is a bummer because this doesn’t at all sound like, do you want to see your baby today, like it not just that does not, I would not feel and that’s what this means, right,
K: it’s in a baby factor you know we need a bed, so we’re gonna do all of these things, so that we can open up the spin, but you’re not going fast enough, you’re not on our time clock so this is what we’re going to do.
P: Yikes, so, so do that, are you there for a full day before they break your water or how does that all go.
K: Water was broken, the next day so I did the cervidil and the pitocin from the first day. Yeah, and then chosen overnight and then my water was broken. The next morning,
P: and then it sounds like you labored that whole day.
K: Still laboring day. At that point you know they’re just cranking up the Pitocin. Yeah, just to get my contractions where they want it to be. And that’s the second day.
P: : And then can you feel that or has the epidurall worn off at this point or
K: no it’s still going, and I had a really strong epidural one stronger than what I needed. Yeah, so I’m just lying in the bed like no one’s telling me that I can move like what I know about labor now is that even with an epidural, you can move a little bit, and that helps progress the labor, no I was kind of just laying there, waiting for the staff to do something next to me. I didn’t know if he like an active participant at all.
P: Yeah that doesn’t sound pleasant Good lord, so then…now you’re there for two nights. And then what happens the next day.
K: The next day is Christmas Eve, and my doctor comes in and says well you have to have this baby by noon because I’m going on vacation. And so I’m just like, look at her like, there’s at this point I’m already feeling defeated, I’m already feeling like, you know, you’re just doing stuff to me you’re not telling me what’s going on. Not knowing that I could ask questions because this was my first hospital stay, it was, you know the first time, yeah that I’ve probably ever been in the hospital I don’t think I’ve ever like this had to visit anyone in the hospital. So you don’t know what questions to ask you don’t know what you can say to your doctor, you know you’re looking to them as the, as authority figure at this point, and that person comes in and tells you that you’re not working on their timeline, and it just feels so defeating
P: that I have to say that’s crazy to verbalize I’m going on vacation and you have to go. I can imagine someone’s thinking that but not saying,
K: yeah, it was Christmas Eve, and it’s like my family just Christmas he really big like we all get together and I just thought that I would be home with my baby.
P: Yeah
K: because you told me I think my baby today, so she that’s what happened that day, she told me, I’m leaving. At this time, and so she left. At that time, even though we were just continuing to wait I didn’t have many other interventions at that point, they did an internal monitor right before I started pushing my baby’s heart rate was descending. So they gave me an internal monitor, and then it was time to push and I pushed for two hours. Yeah, they got pushed for two hours just about a vacuum was used to get my baby out, and then she was born. When she was born she was brought to my chest, but I didn’t want her there, I kinda was like, no, just because I wasn’t feeling anything like I knew that after you give birth, you’re supposed to feel all these things, and it’s supposed to be this like beautiful moment but I didn’t feel like that. So I, you know, told them to take her over to the warmer, and you know I saw her from there but I just, it just didn’t feel right at that time because of everything that I went through over the last two and a half days.
P: Yeah and it from the stuff I read if you have Pitocin but you aren’t producing it yourself. It’s a totally different. You’re in a totally different mindspace right if your body was producing Pitocin you would have gotten it in your brain, which helps with the connection. But if we’re getting it artificially
K: Yeah,
P: you’’re not getting that right so
K: right, we are my girl I work with likes to say it’s called like the Oscar award winning speech after you have the baby you have like this, oxytocin high does oxytocin rush so you’re like, thinking everybody you’re checking fingers and toes you’re doing all of these things, because, you know, oxytocin does that to us. That’s why they call it like the love hormone, but yeah Pitocin doesn’t it just brings on contractions, it just does what it’s supposed to do. Give you contraction, Stop hemorrhaging.
P: Yeah, so it sounds like. It makes sense how you are feeling right like you’re responding to everything that has happened over the last two and a half days which is just disappointing. And but the baby’s fine.
K: She’s fine, she was healthy 12 fingers 10 toes. She’s amazing and she do
P: How long do you guys stay in the hospital after that,
K: we stay there for I think two days. Yeah, we went home on the 26 I nursed you know her, she was a great nurse or it was fine, but yeah I’m sent home with this baby, and trauma from my experience in my labor.
P: And did you recognize it in the moment, like, did you think oh this was traumatic.
K: Oh, no, it wasn’t right, but I didn’t think that it was traumatic and so after processing my own postpartum depression and postpartum anxiety that I had throughout the time, like my postpartum period.
P: Well that sounds really hard from the stuff I’ve read it looks like one in seven women have postpartum depression. And somewhere, I think in the Cleveland Clinic I read some article that said, it’s the most common condition of childbearing.
K: Yeah, oh yeah, it’s really up there.
P: So, did you recognize, like in the fourth trimester that you were having postpartum depression or did you just think, oh my god, this sucks.
K: The postpartum anxiety was the thing that postpartum depression didn’t get to me as much as my postpartum anxiety did. I had very bad intrusive thoughts, and I kept saying to myself, This isn’t normal. This isn’t normal but I didn’t have anyone to talk to about it. I had a trusted network of friends, I didn’t have a professional that I could go to about it. I wanted to talk to my doctor, but I didn’t like her.
P: Yeah. I bet
K: And then we would do screenings at the pediatricians appointment but I didn’t feel that I can talk to them about it as well, or the things that I did say they were like yeah that’s just baby blues, but by the time I really realized that I had postpartum anxiety I think I was, I was well out of it, which is great but also could have, it would have been beneficial for me to get help sooner or couldn’t recognize the signs sooner.
P: Yeah, that’s the story I hear from a lot of women. I think it’s hard to recognize while you’re in it, because you’re busy being anxious or you know whatever right so and so did you become a doula between the first birth and the second birth or tell that story.
K: Yup…I became a doula between the two. So after my birth experience, I went to births with like friends and family, just as someone who had seen it before, because I, when I gave birth in my early 20s I think it was 21 when I had my daughter, so by the time my group of friends, like started to have their own children, I had already been there done that so I wanted to go with them to just help them out, because I knew my experience wasn’t typical or should not have been typical but found out that my experience was, was typical,
P: I was curious about how common it was for women to have bad birth experiences, like the one Keisha described, and found a giving voice to Mother survey published in 2019 that sought to better understand women’s lived experiences giving birth. The survey didn’t include a huge sample but it was just over 2000 people. And basically what the researchers found was that one in six women who filled out the survey were mistreated in some way during this very vulnerable period, during and after birth, they reported issues like loss of autonomy, being shouted at scolded or threatened and being ignored refused or receiving no response to requests for help, and the factors is associated with a lower likelihood of mistreatment, so you’re more likely to have a better experience if you had a vaginal delivery, a community birth a midwife, you were white, you’d have a baby before you were older than 30 years old.
K: I knew that that couldn’t be right because it’s not what I saw on TV. That’s not how I saw, you know, whoever on Friends give birth, is that how I saw like white women being treated. So I had a friend who told me she was like well you should be a midwife. And I was like okay that sounds cool and I looked online and saw that that required a lot of school and I was like, No. So then I had the same friend said well you should be a doula. And then I looked at that and I was like yeah doula work is more my speed. It’s something I really want to do.
P: So tell us how like has it, what’s that like was the training like and, and what was your experience and
K: that the universe like really lined up for me to be a doula after I found out what doula. What a doula was, I was working at a location that was recording podcasts for a doula training organization to labor. And so we just happened to be in the same space where I was talking about it. And the owner of that organization was there and she’s like yeah you should come and do one of our trainings. And so I looked it up and they were local so I did the three day training to become a birth doula. It took me a while, but from the time that I decided that that was something that I wanted to do till the time that I took the training. It took me a couple of years, but I think I was going to births I was doing the work, and I think it’s nice seeing that people weren’t being treated the way that they should and labor was really what gave me that momentum to say okay yeah I need to do this work. I actually attended the training after my second labor.
So my second labor I changed providers. It was my third pregnancy. So as my second pregnancy I miscarried and I miscarried pretty early, but I had changed providers pretty early with that pregnancy, and then I had a provider, that was so amazing so supportive. I remember when I did miscarry pretty early, she, you know, I mean my husband come in her office, and I remember like crying in her office and she and I told her I said something like, I know you have other patients to see today and we’re leaving to get out of your hair and she’s like, No, you say, and process this, however you need to. And so I just knew that this was the person that needed to deliver my kids, any more than I have after this. So then,
P: that sounds lovely
K: yeah she was amazing. I still love her.
P: So we’re so this is the pregnancy where you said it was hard to get pregnant, this time.
K: So it took a while for me to pregnant again and but I get pregnant again. And, well, I thought it was gonna be so easy because the first few times were so easy, it was just like, they just happened…. the one I was really thinking about it, like I was going to try again, it took it took a while, so we got pregnant. A year later, and yeah, had a very empowering labor I still had lots of interventions, but I had a provider that made the time to tell me my options and my choices, and gave me the power that I needed back into my labor.
P: So maybe what walk through that slowly so, so people can see the difference between the first and the second.
K: I had a lot more information in the prenatal period, I was more than just my blood pressure my fundal height peeing in a cup and then asking if I had any questions. She was very forthcoming with all of the information that I needed to know just by asking me, Hey, have you taken any childbirth education classes do you know where to find them. These are the options that we have here in our office, but I’m sure there’s some more around, you know. Feel free to go look. She was telling me about my baby how my baby was growing, the things that I could do, you know, to help my baby grow, just a lot of information in the prenatal period. So I felt safe. When I went into labor. I just knew that I was going to go into, into this through an induction because I was induced last time so I just knew that I was going to be induced. But I ended up going into labor on my own at home and I stayed home for as long as possible, which was something that I didn’t think that I could do, but my provider made me feel really comfortable in doing that. But when I got to the hospital I was in active labor.
P: Oh wow, really well.
K: Yeah, I progressed really well. And then, at six centimeters hit a wall, I was like, No, I don’t want to do the same or it’s 2021 Give me all the drugs, or it wasn’t 21 it was 2014 Give me all the drugs so I have been told that it was, I will actually, before the epidural, I get Nitrus nitrous oxide.
P: Nitrous oxide, otherwise known as laughing gas is a form of anesthesia that you inhale, it sounds like it’s a pretty weak form of anesthesia, it’s usually used in pediatric dentistry, to give you a sense, but it does do something and it works quickly,
K: and that held me over for a while, while I couldn’t get into the shower, so I had to come out of the shower every hour or so for monitoring of the baby. I think at that time this particular hospital didn’t have wireless monitors so I had to get out of the shower to come get monitored, and so that was very hard, like contractions are really hard when I was out of the shower. So at one point I didn’t want to keep going back and forth so they gave me a nice choice, and that was really good pain relief option, and then the tank ran out. It was, I think I was probably like the second person in the hospital to ever use it or something but they were telling me it was very new to the hospital system at this time. So the tank right now, the nurses, even know how to use it at first, it was a mess. But it was helpful when I was able to use so after it was done I said I’m going to get an epidural. And then I got my epidural, and labor beautifully after that, I don’t think they needed to break my water until the very end because I had just a little bit of space left my baby was Opie which is occiput posterior Sunny side up. So, my cervix didn’t dilate all the way. So she was looking up instead of looking down when she was supposed to be, you know, the other way.
P: Does that, does that mean a C section or
K: No, no, sometimes it means longer Labor’s, and then in my case, it meant that my cervix didn’t dilate completely. Uh huh. It dialated, almost completely. So she broke my water to help try and get it to dilate more was like, like a half a centimeter, I guess, of dilation that needed to happen before they wanted me to start pushing, so she broke my water because of that, and I was like okay with that because she said either we can wait a while, or we could break your water, she gave me both options. And I was like no I’m tired. So let’s go ahead and do this, she broke it, we still waited a while, nothing happened. So we kind of just pushed past that little bit of dilation, which was fine. and I the second kid was born in 15 minutes.
P: Oh Wow, well done.
K: It was like three pushes 15 minutes is very quick. Yeah, so when it was time for me to push, I remember my doctor was sitting on the bed and saying, you know, all right, go ahead and push and I was like well, don’t you want me to put my legs on the stirrups Don’t you want me to do all of these things she’s like No, I’ll just do whatever you want. And that was just so empowering. It was just the greatest moment ever. So, I had a birth, that was traumatic but also had one that was so rewarding and empowering and I knew this is the type of birth that everyone should have.
P: That does sound like a story book kind of birth, where you’re making all the choices.
K: Right.
P: Yeah, that’s amazing. So now tell us I was saying to you before when I was having children, I don’t know if doulas were a thing or not but I, I was not aware of them. So give us a sense of what you’re doing for other people because I can’t, I can’t really imagine, doctors, kind of backing down if they’re if they’re sort of not approaching appropriately.
K: Yeah, advocacy advocacy work is what I do, it was one of the things that led me to doula work was being able to, you know let people know of their options and their choices when they feel that they don’t have any or letting them know that it’s okay to ask questions. I never want to speak for anyone but just saying, you know, maybe there is another way, just ask, because you can ask questions to your doctor, and that’s okay. And they should give you that information. Consent is very important in this work as well making sure that everyone has informed consent for everything that happens throughout pregnancy, labor delivery in in their body and with their baby Afterwards,
Doula work is a lot of educational support in the beginning, especially, I mean, bindable free care, when you’re in the midwifery program it were free model care, you do tend to get a little bit more information than those who birth with an OB But yeah for those with an OB but or actually anyone in general really is just giving them evidence base, up to date information on whatever it is that they are going through in the pregnancy journey at that time, or that you may think that they need to know it’s anticipating folks needs as well.
P: I’m guessing that you’re, you really shine in the labor and delivery room right because that’s when I think for sure for your first birth, most women don’t understand the degree to which they’ll be compromised when when everything’s going down right like all of a sudden you can’t really speak for yourself because you’re in excruciating pain or whatever you don’t know what’s going on. So, is it the case that like you’re having the talk with the mother or and then she’s communicating to get into the doctor like how does that all work.
K: We all talk together like I have no problem asking questions why providers are in the room where you know sometimes people might want a little bit of privacy or something like that to have conversations. I don’t know if we talk prenatally about some common complications that may come up and how to address them, giving you all of the tools that you need creatively to ask the right questions if something comes up, and then reminding you that you have those options to ask questions in the moment you can always ask, what are the benefits to this, what are the risks. Are there any alternatives. And then also, mostly advocating for more time for people.
Very rarely are people rushed into an emergency C section where they’re pulling cords out of the wall and then brushing them back to the or anything outside of that I’m always advocating for people to ask for just a few moments for them and their partner to talk about what’s going on, or to process what they just heard, so that way they’re not moving into the next steps with any doubt or worries, which they may still have but at least they have some, a little bit of time to process everything that’s going on and they can confidently move into that next step.
P: And you talked a little bit about your birth versus what you had seen for white women. I interviewed a woman at the Center for American Progress, and she works on maternal health issues among other things, and she was saying that for black women, the ways that racism finds its way into the delivery room are not always overt. So it’s not always like an obvious thing like, I don’t know that this woman was being racist with you but that’s an outrageous thing to say to a laboring woman…I don’t know what the was driving that her treatment of you but I wasn’t there but, but I’m imagining most of the circumstances are not quite as upfront as that.
K: Right, yeah, yeah, it’s, you know, biases that, yeah, yeah, that’s the face that people of color face when they are in labor. It’s a lot of, I don’t want to say the same type of stereotype, only because I am used to it and I, because it’s lived experience for me so I know what to look out for, but it is a lot of not ignoring or ignoring folks of color, their pain or their pain tolerance or thinking that they are exaggerating when they’re saying that something is wrong with them. It is a lot of ignoring their needs, and, you know, attending to the needs of someone else, ahead of them or something like or a white person’s needs, I should say, versus a person of color,
P: so in that instance you can go in like advocate for them and say no, she really needs another epidural or whatever like more.
K: Yeah. And luckily, I mean, The good thing about being a as a doula being able to see both sides and being able to be in the room for all types of people is that I can say, well, if they, if I have a nurse or a provider that says oh this is not how we do things here I can easily go back to experience that I’ve had with a white person is a well, actually this is how you did things how you’ve done it before, and this day and time, look at my notes. But
P: That seems super, that seems super powerful. That’s a great, great leverage to have.
K: So, yeah, it’s nice being able to advocate for folks in that way to say, you know, if they say, This isn’t how they do things I know that they do them, the opposite way,
P: I can imagine that is an unbelievably frustrating thing to hear when you’re in the mix and your client is in pain and need something right.
K: Yeah,
P: that sounds like a lot, so how long have you been a doula for.
K: So I’ve been professionally trained as a doula for four years, but I’ve been doing the work way before that.
P: That’s cool. So I bet you’ve been to a lot of births.
K: Yeah I think by the end of this year I will be probably well over 100 births.
P: Wow, that seems like life affirming work.
K: Yeah, it’s pretty exciting right. It’s always exciting, it’s always something new,
P: and I’m imagining again when I was having kids there was no skin to skin, there was no like delayed cord clamping and that sort of stuff so it’s probably cool to be in a field where there’s constantly new and different things coming out.
K: Nice to be in a field where we’re bringing things back to the family, and out of the medical complex out of the doctor’s hands and bringing it back to the family like the skin the skin the delayed cord clamping. I even advocate for fathers to try and catch their babies we talk a lot about that.
P: Oh, that’s cool.
K: Yeah, because, I mean, they mean my job is to make sure that partners, I should say fathers, but partners are active participants in their labor as well like this is a family events, and not something that doctors have to oversee completely.
P: That’s super cool and I know that my husband had no idea what to do, I mean I had c sections but he’s still like, I want to go hide in that corner and you call me, so it’s nice to have someone who knows what he’s doing to kind of guide that process.
K: I think that I biggest, another one of my biggest roles is normalizing the process as well, so that partners don’t have to worry so much about advocating and, you know, answering all the questions and knowing all of the things, while the birthing person is in pain in going through their stuff. So I’m able to be like oh, that’s normal. Yeah, she’s throwing up, that’s okay.
P: Yeah. Don’t mind her yes that’s very funny. I thought that most states don’t allow insurance to cover doula services is that your experience.
K: Yeah, in Virginia, we don’t take like the insurance companies don’t cover the list services. There are current bills being passed or laws going into effect, that where doulas can be covered by Medicaid. But I haven’t seen much where doulas are covered through private insurance. A lot of folks can use their HSA or their FSA account to pay for doula services, okay. Yeah, medical insurance.
P: That’s super cool. That is very cool work and it’s a totally interesting way to go into it right to have had your experience and think like I can fix this.
K: Right, yeah,
P: God how rewarding that’s cool. So, how do people find you if they’re in Virginia, the Virginia area, I’m assuming you don’t work outside of Virginia.
K: I do virtual work. Yeah, I mean this pandemic has opened up so many lanes for doula work since a lot of hospitals were closing their doors to doulas, we still needed an avenue to get into help families, so we do virtual work so I do virtual doula work for anyone, anywhere. If they need a doula. But if you are in Virginia, and you’re looking for someone local, you can find me on Instagram at Keyshia does work, or on doula match dotnet, and under my name Kesha Graham,
P: so that’s awwesome, I’ll put that on the show notes so people can find it. What’s it like to be virtual for birth, or do they have you in the labor and delivery room like on phone.
K: yeah, I mean FaceTime or we can check in every now and then where we can ask questions, if it’s really tailored to whatever it is that you need but yeah I mean I’ve done like FaceTime, where I’m just like on a tripod. Like, you got it. You can do it, you know it’s a lot of coaching at that point but also reminding families that you know they have choices they have options they have power in their experience and they should wield that power.
P: That’s amazing. And I can imagine, if I were in the circumstance where I actually had to push a baby out. I would probably trust you more than my husband because you’ve seen it before. Right, yeah. You know I can do it. He’s got no idea. So that’s super cool that’s an awesome job.
K: Thank you. Yeah, I love it. It’s really amazing. I love I love seeing families, work together, I am of the same like mindset that you are like, let the doula handle it. A lot of a lot of partners really get this like power inside of them that they don’t know is there when they’re faced with their partner going through something really hard that I really like to see. Yeah, I like the best births and when I just stand in the corner and get to watch families do their thing.
P: That’s amazing. What’s your ideas about C sections and like the stuff I’ve read is that, you know, there’s obviously serious surgery and you’re much more at risk to have some kind of complication if you go through a C section. And the other thing I saw that was kind of damning said the biggest predictor of whether you’ll have a C section or not is the hospital you’re in, as opposed to your medical condition. So that’s suggestssomething wacky is going on, what’s your experience because C sections of do you try to turn them around or how do you deal with that.
K: I’m not there to give anybody medical advice.
P: Okay,
K: so if the doctors are calling for a C section, you know, the only thing that I am able to do within my scope is to have the family ask questions and then help them come up with the questions to ask to see if it’s a true emergency or if they have a little bit more time, my own opinion on C sections but they are here for a reason. But with the current rates of C sections in knowing that there isn’t this big decline with mortality, mortality and morbidity, then we still know that C sections are being over utilized
P: Yeah.
K: From what I see sometimes I feel again me as someone who only took a few day training and has attended a limited amount of births I feel that sometimes you know, maybe things just need a little bit more time. And then I do feel that they are a little bit rushed, but, you know, again, I’m not a medical professional so
P: yeah I mean it just you’ve heard these stories where like the baby’s not in distress or anything. And they have a C section and you’re watching like any there’s the mother, so
K: that’s why provider choice is so important. That’s why place a birth is so important there is a thing of birth culture, like, your hospital is going to have their own individual birth culture, culture, so it is important to talk to families who have birth at the place of birth, where you’re going to birth, and have been with the provider that you’re going to see when weighing those options about C sections and I think it’s important for everyone to talk about C sections because we don’t know who is going to need a surgical birth, versus, you know, a bachelor one,
P: I assume there’s no like scorecard where you could see kind of what your hospital does, or is there some way to evaluate the, the environment you’re about to go into
K: some states have C section rates listed on their state website or you can find it on the hospital website, But sometimes, information if it looks kind of unfavorable it’s kind of hush hush so you kind of have to scour the internet and the message boards to find out that information,
P: but but usually someone is keeping track of that, so
K: it’s out there is out there, but
sometimes it’s outdated I think for in my seat I think some of the information is a couple of years old.
P: Okay. Okay, interesting. Well, that’s also a good idea. So reason number 87 to get a doula is to be made aware of all these things that you should be checking on.
K: Oh yeah, definitely for sure.
P: Thanks so much for coming on, I totally appreciate your time and your story.
K: Thank you. Appreciate it.
Episode 23: One Woman’s Story of Surrogacy: Cheney
Episode 23 SN: One Woman’s Story of Surrogacy: Cheney
In this episode, my guest tells her own story of pregnancy and she shares her experience of being a surrogate for another family. It is, as you can imagine, a very involved process in part because it involves IVF, which always sounds to me like a full time job. Despite the fact that the pregnancies were relatively straightforward, there are challenges along the way, like postpartum depression, which can make other issues that come up more daunting to manage and we discuss those, too.
Tests to verify that your water has broken
https://www.healthline.com/health/pregnancy/premature-rupture-tests#diagnosis
Epidural
https://pubmed.ncbi.nlm.nih.gov/15477051/
Surrogacy
https://www.cdc.gov/art/key-findings/gestational-carriers.html
Surrogacy laws differ in different states
https://www.thesurrogacyexperience.com/u-s-surrogacy-law-by-state.html
https://www.hatch.us/blog/best-worst-states-for-surrogacy
Postpartum depression
https://www.mayoclinic.org/diseases-conditions/postpartum-depression/symptoms-causes/syc-20376617
https://www.webmd.com/depression/postpartum-depression/early-warning-signs-postpartum-depression
https://www.webmd.com/depression/postpartum-depression/postpartum-depression-baby-blues
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. I had trouble getting pregnant and being pregnant, and at some point my husband and I considered using a surrogate. Although we ultimately didn’t end up going that route. I’ve always been interested in surrogacy. Maybe because when we were repeatedly failing to get pregnant, it seemed like such an amazing thing for one person to do for another. So I was particularly interested to talk to today’s guests.
In this episode, my guest tells her own story of pregnancy, and she shares her experience of being a surrogate for another family. It is, as you can imagine, a very involved process, in part because it requires IVF, which always sounds to me like a full time job, despite the fact that the pregnancies were relatively straightforward. There are challenges along the way, like postpartum depression, which can make other issues that come up more daunting to manage, and we discussed those too. After our conversation I went back into the interview to add information about medical issues we discussed.
Let’s get to this inspiring story.
Hi, thanks so much for coming on the show, can you tell us your name and where you’re from.
Cheney: Hi, yes. My name is Cheney and I’m originally from San Diego, California. I’m currently in Louisiana, however,
P: wow, that’s a big shift.
C: It’s a huge shift.
P: So let’s talk about pregnancy you have a really interesting story in part because you have the experience of a surrogate and the experience of having your own child, which I’m totally interested in. My husband and I, at some point, were thinking about using a surrogate, because I have all kinds of medical problems, so I’m interested to learn from you. Why did you get into surrogacy. What did you imagine pregnancy would be like and, and we’ll get into like how it was different as a surrogate and bearing your child for yourself. So why don’t you tell me first. How did you get into surrogacy?
C: My now ex husband and I, we, he was in the military. So, you know, we moved around, and I was a stay at home mom with my one child, and we had friends of ours that she had done a few surrogacies And she was like, you know, it’s such a great way for you to still be able to stay home and make money.
P: Yeah,
C: right? and she’s like if you had an okay pregnancy. If you know, because she knew like I didn’t want another one I was kind of a one and done. So she knew I didn’t want to have another one so they like need for another baby wasn’t really there, so she’s like I think that you would be a perfect candidate because you know it is a great way to make a little extra income, I mean yes you are having a baby, but you know it’s just a good way to get a good chunk of money to pay off some bills and things like that so that’s kind of how it got started was just like a friend of ours was like, I’ve done it, she’s like on her third baby now and like, she’s like, it’s so great and fulfilling and you know all the stuff and I was like sure, like, let’s do it.
P: So that’s super cool and I could see, I mean it’s an amazing thing to give to someone else so I could see like why you might be attracted to it, but, but then let’s hear about your pregnancy first because this must be what, in some ways convinced you that this would be a thing to do. So before you got pregnant the first time, what did you think pregnancy was going to be like?
C: I didn’t really know. I didn’t really hot like my sister was pregnant, she had twins, the first go round. So I was like oh man if I get twins, that’s gonna be hard, but, um, but yeah I didn’t really like have any expectations I didn’t really know what to expect, what not to expect just like things that my sister had been telling me, you know, I asked my mom how her pregnancy was, you know, a few friends of mine, and they all were like it was fine. I didn’t have any issues you know yeah morning sickness sucks but then it goes and it’s just like it’s fine, you know like they went about their merry way and it wasn’t like a big deal. So, I was just like okay cool, it seemed really easy, I guess, to get pregnant, nobody in my immediate group had trouble getting pregnant, so the IVF and all that stuff I didn’t know about any of that because I hadn’t experienced it, so
P: that’s a good entrance right like yeah, you know, it’s good,
C: it’s easy. Yeah, my sister had to write that in there first time and I’m like okay, we’re fertile, you know,
P: yeah, exactly.
C: So did you get pregnant easily.
C: The first time I did, yes. Yeah,
I stopped taking, I was on birth control. I stopped taking it. I get I did all the, you know, proper protocols when the doctor said, Okay, we’re going to try, you know, made sure everything was good to go. And then I stopped taking the birth control. And then after three months I was pregnant.
P: Good that is pretty good.
C: Yep.
P: And then, what was the way you want to walk us through pregnancy is there anything that kind of stands out as, oh, I wasn’t didn’t expect this, or this is not what I would be.
C: I didn’t expect to get pregnant so quickly. Yeah, so that was kind of a shock when I I just on a whim took the pregnancy test I wasn’t like oh my god I’m a weak lead and you know like I wasn’t kind of that. I’m not an overly excited person just naturally.
P: Yeah,
C: so I just took it on a whim and I was like well I think I’m supposed to start today I’ll just take it right, and then then the pregnant and I was on my way to the gym. And I was like, Oh, I just left it. My husband was still sleeping. It was early, and I just left it in the bathroom. And he was still sleeping and I was like let’s just see like if I get a call right so I went to the gym I was being a friend you know I still went to the gym and did my thing, and never got a call never nothing I called him and I was like, Hey, did you notice something in the bathroom and he was like, What, no, and I was like, Oh my gosh. Can you go look in the bathroom and he was like, Oh my God, he’s like, go buy another one make sure this is right. Okay, so I went and bought another test and I was pregnant.
P: that is sort of that, that is the tricky thing about getting pregnant quickly is there’s no Runway Right,
C: yeah,
P: for people who, it takes a little while he get used to the idea and I mean you have nine months he’s the idea but it is kind of immediate right,
C: yes. Yeah, and you’re just like, wow, my life has now changed.
P: Yeah,
C: this is weird, you know, but yeah, and then it was like the anticipation of like, Am I gonna get sick, am I gonna get sick, you know, like I just kept waiting to get sick and I never did.
P: Oh, that’s interesting.
C: Yeah,
P: and so was it the second trimester also easy everything’s easy.
C: Yeah, everything was super easy. The only thing I’m about Super stood out was, because I am I was waiting to get sick because my sister had gotten really bad morning sickness. So, I was still working full time, you know I was a manager at a sporting goods store at the time, and I was just working and working you know and I remember this one day I did go out to get lunch and I ordered a iced tea, which I normally do. And it did not sit that I had to immediately go, you know, let it all out. And since that day I have not been able to touch it,
P: oh, no
C: yeah, so that’s kind of that weird thing of like wow, I totally like him and smell it. Yeah, wow, you know, yeah, it was it’s so that’s like the thing that I didn’t really. The surprising thing that came out of it was Yeah, well I can’t drink iced tea anymore. Cool,
P: yeah that’s that is like a surprising thing after drinking it all the time, right,
C: right, and then just that one time and it was like right at the very tail end of my first trimester, and that was the one time that I ever got sick and it was because of the iced tea, and I was just like that is so bizarre.
P: Yeah, that’s weird. And so, it’s smooth, up until the third trimester and then take us to the day of the birth like how did you know today was the day.
C: Yeah, so my water broke at work.
P: Oh, Wow.
C: Yeah, yeah.
P: was it like a Hollywood splash?
C: No
P: Okay good.
C: No, thankfully, yeah, thankfully it was not like that, I yeah I had an early shift that day and I was the only manager on the floor. At the time, you know until we opened, there was just like one manager, looking over, like the truck.
P: Yeah
C: and so I was there early, and I was just like, kept kind of leaking. And I was like, what is happening you know because it would just like dribble and I’m like pee, like what’s happening so I kept like running back to the bathroom and I’m like, It’s not pee. And then I would stand up and stuff would dribble and I’m like, This just seems really weird.
P: Yeah,
C: So, so I went up and I told one of the team leads and I was like, Yeah, can you call like the other manager like I needed to come in early, I think my water broke and everyone of course freaked out. And I was like, No, it’s totally fine. Like, I can wait until she gets here, you know like I was super nonchalant about the whole thing. You know so she got there and then I was able to leave and I drove myself to the hospital, you know, I called
P: so no contractions at this point,
C: no nothing.
P: Okay, yeah,
C: just some leakage and yeah so I called my husband and he drove like 45 minutes to work was like hey have you left yet and he’s like No, and I was like yeah you might not want to I’m headed to the hospital, you know, Can you meet me there. And so we did and you know they did the test of, I guess there’s like a paper strip that they can stick down there to see if it is actual breaking. Yeah, or nothing.
P: So if your water breaks the way Cheney’s did without much fanfare and there are no contractions, there are a few tests available in the hospital to determine if it’s amniotic fluid. Some use a paper strip to test the pH of the fluid because amniotic fluid is more alkaline than normal vaginal fluid which is more acidic, and there are newer tests to try to measure the presence of certain protein markers that are highly concentrated in amniotic fluid to verify that the liquid leaking down your leg is, in fact, evidence of your water breaking.
C: and it was, my water broke, so but it was just like yeah just a super slow trickle and I was like, I was like okay, no, no contractions, no nothing. This was like it probably eight in the morning I think I got to the eight or nine in the morning I got to the hospital.
P: And are you like 40 weeks are you close to your due date,
C: I’m 38 weeks, okay 38 weeks.
P: Yeah, yeah,
C: so a little early, I mean, around. It wasn’t until I really started, they did they induce, no I don’t think we did, but it wasn’t until my, you know contractions started getting stronger, that’s when, kind of, I was just like, oh my god what am I getting myself into, you know, that’s kind of when it all hit me was like it’s been so easy.
P: Yeah,
C: and no one has really told me about the aftermath, and the actual birth that I was like, wow, like, this hurts. Yeah, yeah.
P: And it is a weird feeling of this is happening to my body and I have no control,
C: Yeah, totally, like zero control. Now I ended up throwing up and I was like why did I just do that, like, what the heck you know and the nurse was like happens a lot, like almost everybody because of the hormones and you know, it’s just like, it’s like came out of nowhere and, you know, I ended up getting the epidural. And it didn’t take all the way. So I felt a lot of everything.
P: So wait did you, you just so you can imagine like I want a natural birth or if you just thought it will
C: I knew going in that I would get the epidural, okay. We didn’t go to Lamaze classes I didn’t, you know, think about doing the, you know, learning how to breathe correctly and all of that in hindsight, I totally wish I would have done all of the breathing techniques and stuff like that, like, you know, because now I’m super into yoga and breathing and it’s like, you know how I feel my body. After some other stuff that happened but, but at the time I wasn’t super into yoga or anything like that. So, so yeah I didn’t, I knew, like I was like yeah I’ll just get an epidural and I’ll be fine. That was kind of my thought going into the birth.
P: good, well good. Like, it’s nice to be on kind of the mainstream path but you won’t be flustered when they offer you an epidural you’ll be like, Sure, I’ll take two, right, like there’s right yeah, yeah.
C: Can you just make sure it all just works.
P: So you said it didn’t really work, what was the one side of your body, or
C: basically yeah yeah I felt. I think my left side was actually numb, but my right side I could feel everything. And because it was the first one I guess, everything was obviously still super tight.
P: Yeah,
C: down there I hadn’t ever been that large, it doesn’t know what it’s doing.
P: Yeah,
C: never need to expand. And it just felt I could feel how tight it was, she was coming through, and that on top of the pressure pain was so unbearable. I just remember like screaming it hurts so bad it hurts so bad you know.
P: Yeah,
C: they’re just like push you to make better hurts you know, yeah, yeah, it’s just yeah, it wasn’t good like no one told me oh the epidural might not work all the way. Yeah, yeah, I have another backup plan in case this happens because I can’t redo it, you know like I wish that I would have had that kind of like, make sure that you do understand the breathing that you’re able to calm your body you are able to get through the pit you know like I’ve used other techniques in place. If the epidural doesn’t work
P: well so I’m assuming pretty early on you report to them like I can feel everything and what do they say, so sorry.
C: Oh yeah, sometimes that happens and I’m like Wow, guys. Thanks. Excellent.
P: As of 2018, roughly 70% of birthing women get an epidural, according to a study out of Stanford, some fraction of these epidurals don’t work. The most recent article I can find on the subject is from 2004. And those authors report that 12% of the time epidurals fail, they attribute the failure to three things in general. First, labor progresses too quickly, it takes something like 20 minutes for the payments to kick in. Second, the needle is inserted into the wrong space in the back, or third, there are some anatomical issue that compromises the effectiveness of this kind of anesthesia.
Pain is a really hard experience to describe appropriately.
C: It is because everyone experiences it differently as well. You know some have higher pain tolerance, lower pain tolerance is, you know, I always thought I was on the higher pain tolerance and childbirth is a whole other different ballgame,
P: I was gonna say, maybe you are I’m not sure childbirth yeah but right
C: yeah exactly.
P: So did you labor for a long time and was the pushing a long time or how did all that go.
C: No, I didn’t have to push for a long time, Maybe 30 minute 2030 minutes.
P: Oh good.
C: Yeah, so it, it was smooth, though I didn’t have any complications from the time my water broke, and then she was born at 5:50pm. So you know, like, eight, nine hours, like that was it. So no, I can’t say that I had this like long tremendous horrible labor I wasn’t, you know, pushing for five hours or anything like that, you know, you know, it, it was fine. My biggest struggle was the aftermath.
P: So what So tell us about that like so she’s born, and then, yeah,
C: so she’s born, the umbilical cord is wrapped around her neck twice.
P: Oh wow.
C: Yes, so she wasn’t breathing right away. And, you know, they put her in my arms and I like was crying just like, you know, breathe, breathe you know when she finally did and everything was fine, but I ended up tearing, just so painful, which nobody talks about.
P: Yeah,
C: or told me about anyway. And so then they had to stitch all that up, the hemorrhoids, the breastfeeding, you know, like, she couldn’t latch on. And it was just it was so frustrating like you have this, now human that you need to keep alive.
P: Yeah,
C: and you yourself feel like death, because you’ve been through this like traumatic experience basically. And I was just like my hormones were crazy. It was just it was such like a huge shock that I didn’t expect it to be so hard. You know because I’m, you know see pictures of people with their babies and they’re so happy and I was just like, I was so miserable.
P: Yeah, yeah it’s babies are really hard right the first month so much work, and you just, I feel like, very few people are prepared for it the first time. Yeah, it is really hard so, but it sounds like you probably did not like imagine I breastfeed for a year and a half or something you just thought you would breastfeed for a while and see how it went.
C: Yeah I mean I wanted to at least breastfeed for a year. That was my plan was to go for the year, and I was determined to breastfeed. So I was like, No, like she’s gonna latch you know she’s been like, maybe I’ll get full 24 hours and she hadn’t eaten because I she wouldn’t latch. And this nurse finally came in and she’s like baby tried this nipple shield, and I was like, what, what is this Why did someone give this to me like the second they saw she wasn’t latching you know, and that was a total game changer.
P: Oh that’s awesome.
C: Yes. Yeah, so I was able to do the nipple shield and she was able to drink from that and I had to then use that the whole entire time that I was breastfeeding,
P: wow
C: I couldn’t get her off of the, the nipple shield.
P: Well, you know if it works
C: exactly what they are, don’t fix it, and I had to it took me a while because I was so determined to breastfeed like, you know, do it naturally and to me naturally was beyond breast. Yeah, and having this other foreign object between us, like, to me it was like the but that’s not breastfeeding, you know, so it kind of took me a little bit to let go of that and be like, it’s working and it’s fine you know she’s getting what she needs just leave it alone. But then when I had to go back to work, it actually made the transition from me to bottle so easy because she was basically having the bottle on my boob.
P: Yeah, yeah,
C: you know, so then my mother in law was able to feed her when I was at work, and I was able to pump at work and no I mean it all worked out. But yeah, I mean it took like a amount of time for just that one nurse to be like, try this. You know,
P: yeah, yeah. I mean it’s described as natural which doesn’t mean it’s easy, right, it just means.
C: Nothing’s easy.
P: Yeah. It also like every part of this process like even like the birth right to coordinate the cervix opening and the hormones and the, you know everything, occurring at the right time. Doesn’t always work that’s like a tricky thing. So
C: yeah,
P: and to have your baby have the right latch to match with you perfectly is awesome. You know there’s no guarantee of that. And so it’s great that you figured out a way to make it work.
C: Yes, yeah, thankful and I’m very thankful for nipple shields and I’m thankful that that nurse introduced me to.
P: So it’s interesting that you, that sounds like a relatively straightforward experience. Although having gone through the birth, you’re willing to say yeah, I’ll do it again.
C: Yeah, because the pregnancy part of it is so easy that nine, the nine months, you know 38 weeks. So easy, that I was like, Yeah, I can do that again, like the birth is one day. But then I don’t have to care for this thing after I can just heal and be done recover.
P: Yeah, right.
C: So for me it was like yeah by, you know, let me heal. Let me recover, let me get back to my life. Let me get back to my daughter, you know, and then it was, it was fine. So in my mind it was, it was kind of an easy yes because the first pregnancy itself was so easy.
P: That makes sense. Okay so for people who have no experience with surrogacy like, walk us through how it works, how do you find a family or how do they find you and how does that stuff all work out.
C: Yeah, so there’s a couple of different ways that people can do it.
P: A little background here, so it looks like there are two kinds of surrogacy gestational surrogacy in which the surrogate carries the pregnancy of another woman’s egg, and the father or donor sperm. There’s also traditional surrogacy, which the surrogate egg is used to create the embryo she’s carrying surrogates can be altruistic so they carry the baby for another family, and only their medical bills are paid, or commercial surrogacy, which as the name suggests, involves a fee beyond the medical bills. How common is it. The CDC estimates that between 1999 and 2013 2% of all assisted reproductive technology cycles are for gestational carriers, which amounts to about 13,300 deliveries and 18,000 babies, half of the pregnancies have multiples.
C: I personally went through a agency where you’re kind of put into this database, like, it’s almost like match, right, so you’re put in this database you like fill out your profile you put pictures of like you and your family what you like what you do you know all these things. And then this other family comes in and views, the profiles, and then they pick what one they think is best. So through this agency we were matched, and then it’s like this whole long process of making sure that I am physically fit and able to go through the IVF treatment. And they also had to test my husband, they had to do some blood tests and things on him, to make sure that he was clean, you know from STDs and things like that,
P: yeah,
C: obviously, you know, still gonna be having intercourse with this other person’s day but you know so they had to make sure all that was clear. So it was a lot of blood work, it was a lot of back and forth to the IVF facility that we were using. So, yeah, it was a lot of doctor’s appointments,
P: and the people who are, who are giving you the embryo, they’re, they’re covering all that, are they going with you to all these things.
C: No so the couple that we ended up matching with didn’t live in the States.
P: Oh wow
C: So, I Yeah, we didn’t end up meeting them until I was six months pregnant, I think, wow, that’s when we finally met them like we were emailing, you know, back and forth, we had phone conversations and we would communicate via email, but we didn’t actually meet them until they were able to come to the States. And I was like six months pregnant.
P: Wow. So what they just they shipped the sample over to you and then is that is that is that how it worked.
C: So what happened. Well this with my particular instance, the mother, her eggs weren’t viable at all. So they had been trying to do EBF the IVF themselves for a few years 10 years I think.
P: wow
C: And she just couldn’t get pregnant, and it ended up being her eggs just aren’t viable. So they ended up getting an egg donor and the husband, flew in donated his sperm, and then you know flew home, so the facility was able to do what they needed to do with the egg and the sperm. So all I had to do was just go then to the facility and get implanted
P: and is that painful or it’s easy.
C: No, it’s, it’s not painful at all. It’s a little awkward. So, my couple wanted a girl, they were very like they want, so they did the gender they can figure that out, like, you know what they, what the embryo is. So they ended up having I think three boys and one girl embryo. So they only implanted the one.
P: Yeah,
C: with like, you know, oops, that that one would attach because I know they like to do multiple, yeah, yeah, eggs, but we only had one egg that was a girl. So my process into being ready to then be implanted, um, if you’re not familiar with the IVF process is that I’m getting injected with hormones to prepare my body to accept this embryo. So it’s basically tricking myself into thinking that I’m pregnant.
P: Yeah,
C: so that my body will accept this embryo, so for the, I think two or three months prior to getting the implantation. I was injecting myself with hormones and taking them orally as well. So then I, you know, so I was ready to go, everything’s good. They measured my cervix. Think beforehand before all this started part of the process was also measuring the cervix so then they knew exactly where to implant the embryo. So they had all this so I’m ready to go, you know, two months later, I’m full of hormones, and I go in and they put you on this table right with your legs up in the air basically like you’re giving birth, and then they tilt you backwards. So my head is at an angle, it’s like a 45 degree angle or my head is down at the bottom and my legs are up. So, I guess gravity helps them
P: Yeah,
C: put in this embryo and then I have to lay there in that position for a couple minutes, um, that was, that was the the awkward thing like it didn’t, wasn’t painful or anything at all, it was just super uncomfortable and I was like wow I really don’t want to be hanging upside down. Okay, yeah. But, but yeah other than that it was super easy they implanted real obviously took, and, and then I had to continue doing the hormone replacement for the first trimester. I was doing it before the implantation and then for through the whole first semester was doing.
P: That’s interesting. That’s interesting because your body at this point is pregnant. So why do they need to supplement your hormones, after you’re like I understand the pre pregnancy thing to some degree but once you’re pregnant. Isn’t your body supplying the hormones you need.
C: Yes, but they wanted to make sure that it was getting the hormones that it needed that the embryo was getting the hormones because there. There was a very high risk of the pregnancy failing within the first trimester,
P: okay
C: at the IVF so that’s why they just wanted to make sure that I was getting all the hormones that I needed, so they just kind of upped it.
P: can you feel that made you feel the hormones like Do you feel anything at all.
C: No, I mean I felt, I felt fine before the implant. Yeah, after the implant natural hormones kicked in, plus I was taking the added rounds, and I was sick time.
P: Oh
C: nauseous 24 hours, I would get sick, in the evening. Nothing tasted good, like it was bad, I was sick, and I was like I didn’t get sick, the first time but it was because all the added hormones on top of everything. Yeah, so then I ended up getting very sick. The first three months it was great.
P: Yeah, well now you know what your sister was talking about,
C: I’m sure she’s Yeah no I do it.
P: And so what’s the rest of the pregnancy like.
C: So after I was able to stop the hormones. Yeah, the added in hormones. It was fine. The pregnancy was great. I didn’t have, you know, after the first trimester, my hormones balanced the baby was doing great. I had a great pregnancy, it was actually during the baby was much better for an easier the second time around. I just remember the first time just being so uncomfortable and I gained a lot of weight. But my daughter didn’t gain a lot of weight she was only five pounds 10 ounces, when my daughter was born, and I have gained like 40 pounds. So, I know I had gained all that weight…where in this instance, I didn’t gain a lot of weight.. I didn’t retain liquids like I did the first time. The baby was getting all of the weight. The second go round so I this I thought that was kind of interesting how my body, almost, I guess it remembers right how what it’s supposed to do so the second time around it was like, Oh, yes, you get all the nutrients you’re good, you know like, We don’t need to hold on to all this extra water in the face and get fat and gross, you know, and it was like just the baby got it and it was fine nice the pregnancy was totally fine, and
P: that’s super interesting and do you feel like, like emotionally it was different for you or you thought it felt the same or
C: emotionally I think I was fine and I knew, you know, we have to obviously sign contracts that I’m not gonna steal the baby and all those Yeah, and that’s funny enough, that’s why a lot of people come to actually California when I was doing the surrogacy I was in California. California surrogacy laws are the strictest laws. So a lot of people come to California, to do the surrogacy because of the laws, which I found kind of interesting.
P: They’re strict in terms of like their surrogate can’t keep the baby is that the issue.
C: Yeah, I mean that’s the gist everywhere but I don’t know like the legal obligations, I just remember that each state has specific laws to pregnancy, all of them do state know you can’t keep the baby, but I just knew that California is laws were, there were more laws in place, I guess, to do the surrogacy,
P: that’s interesting. And yeah, yeah.
C: And this was like, you know, a few years ago so the laws may changed now, but we’re
not being super that’s why a lot of international couples were coming to California because of the laws that makes sense.
P: It looks like surrogacy laws differ in each state. Many states don’t have any laws at all like Georgia, Hawaii, Idaho and Kansas to name a few. And some states have restrictive laws like Louisiana passed a bill in 2016 that says that gestational surrogacy is restricted to married heterosexual couples using their own egg and sperm, but there are all different kinds of restrictions. For example, Texas says the parents have to be married he’s a surrogate and California as Cheney suggests, is considered a surrogacy friendly state because laws protect both the intended parents and the surrogate, and they’re very good IVF clinics in the state so ostensibly surrogates wouldn’t have to travel far to initiate that part of the process. And if you want to be a surrogate, or use a surrogate, you should look into the laws in your state, as things change frequently.
And so, when you meet them at six months is that an exciting meeting.
C: Yeah, it was really fun. The mother didn’t speak any English. So, a lot of the communication was through the Father, and there were just the sweetest people, they were so nice so genuine. You know obviously super happy to be becoming parents, and they were just so sweet and yeah it was a really good meeting.
P: That sounds amazing and I could just imagine, you know, from the mother’s perspective how grateful she is to have this, right after like 10 years of not working, this seems amazing.
C: Yeah, she was just she was so, so grateful that you know that it was working and she, she could like see it grow, you know what I mean, like seeing growing we’d send pictures and things like that and I think for her it was just like, this is actually happening, you know, kind of surreal for her and it was just it was such a cool experience to have.
P: So do they get to be at the birth, or how does that work.
C: Yes. So, remember, they were coming to the states around 38 weeks just to make sure that they weren’t close by. Yeah, and yeah so then when I, I ended up having contractions. And, yeah, and then I you know I emailed him and was like hey you know I’m having contractions, you know, I’ll let you know obviously want to head to the hospital. And, you know over I think it’s like two hours or so that contractions started getting closer and closer together. So I was able to get to the hospital and then they met me there. When I got to the hospital was already seven centimeters.
P: Wow.
C: Yeah. The second time around I was like, I was prepared, I guess, like it wasn’t super painful like the contractions were intense but I wasn’t in excrutiating pain or an Yeah. So by the time I ended up getting to the hospital I was seven centimeters, and I remember them like checking. And they were like, yeah, like how much longer can you go like pain wise and I was like, Yeah, I’m done, I would like the epidural. Okay yeah, let’s do that right now. Great, so I was able to get the epidural really quickly and my water had never broke, he’s like I can feel the sack it’s like there, it’s protecting the baby’s head right, that’s it. He’s like it hasn’t broke yet. Yeah I was just kind of there, and it’s like weird. Okay, so I was able to
P: did the epidural work this time?
Ca little better than the first. Yeah. Yeah, it took, I could feel the. My body was having a contraction. I a sharp pain running through the back of my right leg. That’s when I knew I was having a contraction.
P: Wow.
C: Yeah, but other than that it did. It did work, so I was able to push you know better and more concentrated because I could feel that sharp pain I was like oh I’m having a contraction, and they’re like, how did you know that I was like I have a sharp pain running down my leg. So yeah, the second experience was, was much better, and the parents were in the room with me, so it was just my husband and then the parents and then obviously all the nurses and doctors were in the room, and I pushed her out. And they swept her away in, that was it, and then I got to watch the parents like hovering over her and they cleaned her up and, you know, the dad was holding her and he was crying and I was like that was totally worth it. Like just that, seeing that, you know,
P: that’s amazing. I want to cry at the thought of that so I just I can’t even believe how generous that is for you to do that. I understand that it’s a job and you’re, you know, there, there are other things that come with it but it just seems like the best thing you can do for another person.
C: It truly is giving life right to someone who tried and yearned for it for so long just giving that to them it was just it made all like the whole process worth it
P: That’s amazing. And so how long ago was that
C: that was six years ago.
P: Do we get to hear about their little girl like do you guys keep in touch or
C: they went back to, to where they live in. Yeah, they went back four weeks after the birth, they were able to travel and I pumped for them, for those four weeks. And that is something I will never do again. It was so painful to just strictly pump. Yeah, nipples were raw, and bleeding off the whole four weeks. It was horrible. It was horrible. I was like I’m not getting paid enough, it wasn’t enough extra money to,
P: yeah, yeah, that sounds hard,
C: I had agreed to it and then I was like wait, how much is it I was like oh that’s not worth it but I already agreed.
P: Aren’t there milk banks for babies are isn’t, isn’t that a thing.
C: It is a thing, and I realized that after, because I was producing so much milk. I was like well what am I going to do with all this extra so once they leave, you know, I was like do I keep pumping and selling it and or donating it or you know whatever I was like you know what, no, I’m done, like,
P: yeah, yeah, yeah
C: I want my boobs back. So, um, so I pumped as much as I possibly could and I would portion it out into bags, the breast milk bags, you know I would portion it out like you know three ounces for ounces however much she was drinking at the time, and you know I told them, you know, because first time parents right I’m like hey just like put it in warm water and let it like slowly warm up and then just add it to the bottle, so I had it all perfectly portioned out for them and then they ended up being able to put, put it in a cooler with dry ice, so they were able to take whatever I had back to their country.
P: That’s awesome.
C: Yeah, yeah, they had no I haven’t heard from them or spoken to them since. So, well,
P: I’m sure yeah I’m sure every family has their own way to handle it right.
C: Yeah, and you had the option to either stay in touch or not stay in touch. You know, due to some other circumstances, we, you know, I ended up needing to change my telephone number and email address and all that stuff so the agency doesn’t even have my current, you know, contact information, so even if they were trying to contact me, I wouldn’t even know that, you know Yeah. So, but that was it was a really, really good experience and I have been asked to do it again and I don’t want to.
P: Yeah I mean it’s a lot of strain on your body right it’s like a hard thing, I mean, even though it was relatively easy for you like it is a lot to go through.
C: Yeah, physically I was fine. It was the emotional and mental health part of it, so I ended up getting bad postpartum depression with my child. And then, it was never taken care of properly. So when I had the second child,
P: wait, so let me pause right there, no you’re not taken care of appropriately because you didn’t know what was going on or like what happened there.
C: Yeah, I didn’t know about postpartum depression. I mean I knew that hormones got wacky, and they were fine, but no one in my immediate family or friends group had really bad postpartum depression so I didn’t know what was happening I just chalked it up to, oh it’s hormones because I had a baby, but you know I remember just like hating her so much. No, and I was like why do I feel this way you know I was just like I had so many emotions and I didn’t know what to do with them properly, you know I wasn’t seeing a therapist. You know I think I was ashamed or scared to tell my doctor that I was having these feelings, so they don’t want to do,
P: they didn’t have you fill out like a little depression form or whatever like a survey,
C: I’m sure, but I was like yeah normal normal normal. Yeah,
P: so it’s really tricky, you know, I, I’ve talked to a bunch of people who’ve had postpartum depression and it’s the most common side effects of pregnancy.
Which is kind of shocking given that almost everyone says what you have said which is, I had no idea, right i i couldn’t kind of see it in myself and one woman I spoke, it was a therapist, and she was like I you know I still couldn’t see it in myself. So it seems like a really tricky thing to, to fix or address because many people going through it don’t recognize it maybe until the second pregnancy or something changes, or there’s something to compare to
C: right and I yeah and it was like I just showed me because this was like, you know, a week after I was home with her and I was just like oh my god like trying to figure out, like she wasn’t sleeping and our sleep schedule and, you know, my then husband just sleeps through everything and I was mad at him because you know I’m like I’m the one absolutely you know, feeding her every two hours and you’re just frickin sleeping, you know what I mean so of course there was like anger there and confusion and then the depression on top of that and.
P: Okay, Web MD says, 80% of women experienced baby blues, feeling overwhelmed or exhausted and having mood swings, which makes sense given that introducing a new baby into your lives is a dramatic change in circumstance. It comes with a lack of sleep and hormone swings, but feelings associated with baby blues, usually wane in one to two weeks and peripartum or postpartum depression is a much more intense version of this. According to the Mayo Clinic here are some of the symptoms of this kind of depression. Depressed mood or severe mood swings, excessive crying, difficulty bonding with your baby withdrawing from family and friends, reduced interest and pleasure activities you use to enjoy an intense irritability and anger. I’ll include the full list in the show notes, but it’s important to communicate with your doctor about this to get help.
C: Yeah, I didn’t really know about postpartum and how bad it could get until after the fact, until after the second pregnancy, and then I got it again. You know, and then I was like, I refuse to get out of bed, you know like with Elise I would get up with her you know like, we would be doing things I would still be doing my normal activities, so maybe that’s why I didn’t think it was so bad because I could still do everything I needed to do.
P: Yeah,
C: you know, as a mom as a wife and things like that. But the second time around. I just didn’t want to go to bed. I was just done with life. I just didn’t care, and, and that I think is when it hit me and my husband was like yeah sums up, like, you know, let’s say, going to the doctor. And that’s when we went to the doctor and you know I felt comfortable enough telling him exactly what happened and he’s like yeah, you’ve probably been dealing with depression, and now you’ve had, you know this traumatic experience and your hormones are all out of balance, so that you put me on antidepressants and.
P: Was that helpful.
C: No, it made me feel worse.
P: Oh no, yeah. So, how did you find your way out.
C: Um, that’s a whole other story. No, I don’t know. Honestly, there. Like I was saying there was a whole lot of other factors to my story than just the pregnancy, my husband, ended up being a drug addict, so I was dealing with that, he told me that he was addicted to pain pills, Three days after I had birthed my birthed our daughter.
P: Oh wow,
C: he told me that, so I was dealing with a lot.
P: Yeah,
C: and our relationship, and his addiction just kept getting worse and worse and worse and worse as time went on, and I agreed to do the surrogacy I was under the impression that the money was going to be going to pay off our car to pay off credit cards, things like that. Well, he ended up using all the money for his addiction. So there was like a lot going on in my world.
P: Yeah,
C: and I ended up because of my depression I think and because of, you know this codependency relationship that I found myself in, you know, I knew I needed help. I knew that he needed help. So I ended up having family take my daughter and I ended up using with him. and the uppers that I was using actually kicked my depression. Not saying that that was the right thing,
P: yeah yeah yeah yeah,
C: but because I was so low.
P: Yeah
C: the uppers that I was using boosted the, you know, endorphins or whatever. and it actually ended up balancing that out
P: Good Lord, that is not a straight path through
C: It was a lot it was a lot, and you know that’s a whole other podcast but, but that’s honestly how I how I got out of it was by doing drugs, and I don’t want anybody to take my how I got out as a way to get out, don’t do it that way, you know, go to the doctor do it the right way, tell them this isn’t working and they’ll put you on something else that will work, but, but yeah, because of all my other circumstances, it just I lead I, I let myself go down that path and help my depression.
P: All I can say is, Cheney, you seem like an incredibly, incredibly strong person to get through all that each of those separate things, has enough weight that it will take long to get through sort of mix them all together, is, is just seems like way too much, right, like
C: it was, it was a lot. Yeah,
P: so that’s amazing to have you on the other side.
C: Yes, yes. Yeah, and you know I wouldn’t be here without the support of my, my family, they they took me in, when, when things got really hard and, you know, kind of showed me their love again and I was able to, to get out of this situation to get away from him, you know, and start building this this new life for just my daughter and I and it’s been pretty amazing.
P: That sounds awesome. How old is she now.
C: She is almost nine.
P: Oh, wow, what she into
C: dolls. She loves the imaginary play with dolls I think she has 15 right now.
P: Wow,
C: yeah it’s getting a little obsessive, but she you know will do her chores and earn her allowance and then she you know buys them herself. But it’s, it’s just so funny and then she watches these YouTube videos of this other little girl who plays with the dolls for YouTube and then she’s now creating her own YouTube channel, playing with her dolls, it’s just it’s really cute to watch.
P: That’s super cute my kids were very into dolls too, which is fun like to listen to those conversations right where they’re making sense of the world around them in this relationship they’re creating it’s very cool.
C: Yeah, it’s so funny and new she’s like disciplining them you know and it sounds like me and I’m just like this, you know, or it’s like better I was like oh I wish I would like a thought of, that’s a good idea, like I’m gonna use that on you later, you know. Yeah, insane. Yeah, that’s really good.
P: That’s very cute. So I’m wondering, now we’re down this road and looking back, is there any advice you’d give to your younger self about like the pregnancy stuff.
C: Gosh….ask more questions. Don’t hold back. After the fact, like let the doctor know let people know around you how you’re feeling, you know because you’re not the only person who have felt that way, like it’s an okay feeling to be struggling, and to not shut people out.
P: Yeah,
C: well I should have let more people in.
P: I mean, clearly, I think most people do it your way so that seems like a natural response but it is, you know the statistic is like one in seven women experienced postpartum depression you know so it’s really common and, and it’s just a matter of people understanding that like, oh I need help with this and this can, You know where there’s a way to manage it and
C: and not be ashamed of having these thoughts because you know if you have them, then other people have them too.
P: Yeah, and think of all that your body has gone through right, it makes sense that there’s some expression of that experience.
C: Yes, yeah. Absolutely. Awesome, well that’s great advice.
P: Thank you so much for sharing your story is super interesting to learn about surrogacy. And that’s such a amazing thing to do for someone else so it’s like a nice, nice No it’s going on.
C: Yes, yeah.
P:Great, thanks so much for coming on.
C:Thank you so much for having me. It was fun.
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.