What Can Happen when Infertility gives way to that first pregnancy? Jennifer's Birth Story, Part I

Today my guest, a DOULA and birth worker, talks about her challenging experience with INFERTILITY:
* All the minor surgeries
* How hard it was to manage at the age of 19 more or less alone
*How challenging it was to go through a regrettably similar process with her grown daughter

and how she managed the twists and turns of both the pregnancy and the birth, which included HYALINE MEMBRANE DISEASE (aka RDS) and a PDA.

Unequal Investment in Women's Health: Nature, 2023
https://www.nature.com/immersive/d41586-023-01475-2/index.html

PDA: Patent Ductus Arteriosis
www.hopkinsmedicine.org/health/conditions-and-diseases/patent-ductus-arteriosus-pda

Connect with Jennifer:https://doulainreno.com/

Transcript

Paulette  0:04  
Welcome to what you didn't expect in fertility, pregnancy and birth, how we think and feel about this enormous transition often lives in the gap between what we expected what we actually experienced. This gap exists in part because of how we tend to talk about and portray these events on all kinds of media in a one dimensional way, everything was amazing, but it's more often the case that there are beautiful things that happen and at the same time really challenging things that happen. This show shares true experiences, both the easy parts and the difficult parts, and how we manage what we didn't expect, the intense things that can happen in the course of this transition can impact how you see yourself, how you see your partner and how you parent. The better we understand what happened to us, the better we can manage all the things that follow. I'm your host, Paulette Kamenecka. I'm a writer and an economist and a mother of two girls, and I met many, many challenges in this process, none of which I expected. Today, my guest talks about her challenging experience with infertility, both the physical aspect of it all the day surgeries and the emotional side, how hard it was to manage at the age of 19, more or less alone, and how challenging it has been to go through a regrettably similar process with her grown daughter now she shares the twists and turns of both the pregnancy and the birth, which strayed pretty far from her expectation of this straightforward, run of the mill experience she'd anticipated. Thanks so much for coming on the show. Can you introduce yourself and tell us where you're from?

Jennifer  1:38  
My name is Jennifer Campbell. I'm from Washoe County, Nevada, in Reno, on the California border, and I'm a birth doula here, among other things,

Paulette  1:48  
a birth doula. Cool. And how long have you been a birth doula?

Jennifer  1:51  
I had 12 years experience in birth work. Took a break, and then I've been back at it for three so I have between 15 and 16 years total. That's

Paulette  2:00  
amazing, and I want to get into how you found yourself in that field. But first, let's talk about your own story of creating a family. Sometimes the family you've come from affects the family you think you want to create. So did you have siblings? Did you grow up knowing I want a family? Or how does all that work for you?

Jennifer  2:24  
I did. I knew I wanted a family. I came from a background of dysfunction, and I definitely wanted to set the bar higher. I think at the time, when you're young, you think, oh, I want to do a better job than my parents did, and that bar was fairly low in my case, and so I didn't know what that meant. I knew a lot about what I didn't want, but not about what I did want or how to get there. So I think most of us go into parenting with these expectations that if we want to be a mom and I try my best every day, it's going to be great. And that doesn't always happen the way we want. But definitely, I knew I wanted a family. My senior of high school, when I graduated, I was really desperate to create the family that I wanted, because I didn't come from that. So I was coming from that perception of wanting to do it differently. I

Paulette  3:15  
totally hear that, and at the same time, I think it's harder than it looks.

Jennifer  3:21  
Oh my gosh, yes, it is. It's not the way it looks at all really. I mean, I thought if I was a great mom, I would do a great job. And you realize that even as a great mom, trying your best, doing your best, loving it, you're screwing up your own kids also, because I'm creating the story of my life and growing up and growing into who I am as maybe a wife or a woman or a sister or a friend or partner, all these different things, I'm still creating my story while I'm raising my kids. And that's messy. Life is really messy, and having kids does not look like a Pinterest board, and you have to, with no real training or experience, figure it out very much on the fly. And so I think unintentionally, when I realized, holy cow, I'm damaging my kids and I'm trying to do this great job and be different, that's a really hard thing. That was a very hard thing for me to realize that it wasn't just about wanting to do it better than I had it. That was easy. It was easy to do it better than how I had it. That wasn't even an issue. But that doesn't mean that there aren't so many hiccups along the way in the story you're creating, that you're doing some of the damage yourself, and that that was really hard for me.

Paulette  4:37  
Yeah, I think there is a lot of social pressure, and there's probably many other factors involved here, making you think, the minute you give birth, your mother, and that in some way, you're this formed being, which stands in direct contrast to what you're saying, which I think is such a smart insight that you're still forming on the way you're you have to become a mother. That's a process of learning. And every learning process has its own ups and downs, and it's harder than it looks. So was it easy to get pregnant? No,

Jennifer  5:08  
I went through infertility. So odd thing, I got married at 19. It's a marriage that wasn't nobody knows about. We were only together for about three years. We really wanted a family. We had no birth control. I had been on a pill because I had really awful periods. And actually, a doctor right before I turned 16 said, you may have a hard time getting pregnant. I wouldn't be surprised if you needed infant fertility. It's so interesting because I was so new in my having periods and all of that stuff. And what did he see? I'm 53 now. What did he see at 15, almost 16? That would have made him say that, but I'm grateful, because it was kind of one of those drops, you know, someone just dropped something in, and I didn't prepare. At 16, I didn't think about it. But later, when I was married at 19, and we went a year with no pregnancies, no miscarriages. I actually didn't even have a period after coming off the birth control pill for an entire year, I was automatically an infertility case. So I went to we were military, we were Air Force. I went to an infertility specialist. I went through seven day surgeries. They're checking your fallopian tubes and your cervix and taking biopsies of everything and flushing things, and it's painful and traumatic and not fun. I was also maxed out on clomid and Provera.

Paulette  6:30  
I did the infertility gauntlet thing too, and I when they did that fallopian tube, I think it's, I believe it's called hysterosalpingogram, which is a test in which dye is pushed through your fallopian tubes thanks to a catheter, while an x ray takes pictures of the flow of fluid to see if it's blocked. Why is it painful? Mother? Internet is telling me that it's the pressure in the fallopian tubes from the dye. I didn't realize my fallopian tubes were pressure sensitive, but they definitely were, but that's not always the case. I've spoken with people who said they didn't feel anything in this procedure. I thought that was so painful. I was like any state secrets I have their years, I will tell you anything to get you to stop this. But I've heard that that's not the case for everyone, but it sounds like it was painful for you as well.

Jennifer  7:18  
They all were painful. You can't forcefully dilate my cervix. Stick something up there, take biopsies of the inside of my uterus or my cervix, have me bleed for days. And the interesting thing is that they're like, these are day surgeries. You can just drive yourself here and drive yourself home. And I was like, Are you stupid? Why would you tell a woman that physically, their heart, not only that, you have the fear of the unknown, the surgery that you're awake for this, it's minor. They shouldn't be putting you under general anesthesia for this. But I feel like their preparation of a woman going through this is abysmal. Yeah, they are painful. I remember getting dressed in the dressing room getting my clothes back on in the dressing room afterwards, with blood coming down my leg, sobbing, cramping, thinking, oh my gosh, I've got to drive myself home after this. And that's not even touching emotionally, where you're at in this journey. The fact that I'm maxed on clomid and Provera so I I'm feel like someone very not nice, has possessed my body. I don't feel like myself at all. You know, my husband, at the time, would say something, and I would slam a kitchen to cabinet and be like, Oh my gosh, I'm so sorry. I have no idea why I just did that. It felt like someone has taken over my body. I don't like her at all, and I don't have control over it.

Paulette  8:47  
In Jennifer's defense, it makes sense that she's having mood issues on these drugs. Covid increases the amount of testosterone secreted from cells, which increases the amount of estrogen produced. Provera is a hormone that affects brain function and neurotransmitters in particular, by affecting levels of estrogen and progesterone

Jennifer  9:07  
and so and then there's the emotional thing, like, oh, by the way, you're going through infertility. Yeah? We're trying to figure out why you're so broken that you can't get pregnant. Yeah. So I think it's multifaceted. The infertility journey is so multifaceted, and it's one more thing we don't talk about and one more thing we're not prepared for, and that makes it it was pretty traumatic to actually go through that 10 months of infertility.

Paulette  9:33  
I am so sorry and very sympathetic since I had kind of a similar journey, although mine was at like 30 instead of 19. And of course, I'm thinking off only I started earlier, but in any case, now I went looking back at it. We just don't understand that much about the science of fertility and women's bodies. There's just a ton of unknowns. I wonder if, in 10 years from now, we'll say, Oh, it wasn't infertility, it was x, or infertility is some giant group that they throw everyone into, even though you don't know exactly what's going on. It's

Jennifer  10:09  
interesting that I did get pregnant. My daughter, coming out of infertility, is 32 now, and she cannot have children, not without going through an awful lot, and they were trying to figure out why she was having pain, why she was having discomfort. So she wasn't an infertility candidate, but she and I have gone through several of the same surgeries. She ended up with endometriosis, so she's had two laparoscopic surgeries for that, and she's had two uterine ablations in her 20s, which is nearly unheard of. And what's shocking to me in this is that I had my experience 33 years ago. I started that journey at 19. I started infertility at 20. She's 32 and they're doing the exact same things.

Paulette  10:56  
Have this other podcast called Making Sense of pregnancy, and I'm interviewing all these researchers, and there's a guy in St Louis, and he was in cardiology, and now he's in women's health, and he's applying all the technology used in cardiology to the uterus. So the uterus, like the heart, is an electrified organ, right? Those muscles are work with electricity. And so he was saying they're starting to think that endometriosis is the result that the electricity in the uterus moves in the wrong direction. So instead of, instead of moving from the top of the uterus to the bottom, it moves from the bottom to the top. And that they think they'll there will be a relatively painless way to fix that by by either eliminating that current or trying to reverse it, but, but that, and he was saying to me, he's a young guy, and he was saying to me, God, you wouldn't believe I mean, there's no research on this. And I was like, Oh, I believe it. I believe it.

Jennifer  11:52  
No, we believe it, because we've seen it. And the other issue with all of that, we're at least 50% of the population, but there's no money, money in science. There's no money in education to the doctors that are helping us. You know, they're not getting the education. The science isn't even really there. It's kind of a crapshoot. I mean, I always joke about in business, my marketing philosophy is to go into a dark room blindfolded with darts and try to hit a dartboard, and I feel like, like my marketing strategy is exactly the same as all of women's health, and we don't talk about so

Paulette  12:29  
let's talk about it a little today. I found this great piece in nature from 2023 and I'll link to it in the show notes. And it shows dollars spent in federal grants for disease by disease burden. The authors found that migraine headaches, endometriosis and anxiety disorders, for example, which disproportionately affect women, all attract much less funding in proportion of the burden they exert on the US population than do other conditions, HIV and AIDS and substance misuse, for example, which disproportionately affect men get more funding than their corresponding burden. Might suggest the analysis is based on work done by a mathematician in 2021 and remains true today. If you're interested in this issue, please check out the link. It's a graphical representation of exactly what Jennifer is talking about. I

Jennifer  13:23  
mean, from the moment we were 50% of the population, why are our girls embarrassed to buy tampons in the store? Yeah, from that to having sex the first time, to the way our bodies are designed to, you know, to feeling pleasure sexually, to pregnancy and infer we don't talk about any of it. There's no study on any of it. A man can get a pill immediately if he has any sexual dysfunction, but a woman absolutely like, yes, some of that is changing, but we're not addressed in this situation at all. So I'm glad that there's someone out there saying, no wait, we think this is different, because we certainly need it. Because watching my own daughter in her mid to late 20s, up until she was about 30, go through these things that were exactly the same that I went through to get pregnant with her, was really heart wrenching.

Paulette  14:15  
Definitely. That sounds unbelievably frustrating to think it's exactly the same for the next generation. So, yeah, hopefully we can, we can shift that at some point. So let's talk about you getting pregnant. So 19 on clomid, feeling terrible.

Jennifer  14:29  
So I went through 10 months. I was 20. I My doctor. Went through all the surgeries. I had been like, I'm doing the basal body temperature, having sex every other day. All the things that you do to get pregnant, right? And then he said, so we're at the end of this phase. The next phase is IVF. And I said, Absolutely not. I'm waving the white flag. That is not part of my journey. It's interesting how some of us are like, yes, I want that route, right? And others are like, Absolutely not. And I was, I said, I will either get pregnant on my own, I will adopt. I had come from a dysfunctional background. I had a third grade teacher that made an enormous difference for me, and so between that and knowing that someone can make a difference in the life of a child, even in passing, just by being themselves, I learned that lesson and that doctor at 15 saying, Yeah, you might have to go through infertility. I just realized that I was totally fine doing foster care and adopting, and if I didn't have kids, that was fine, but I was not going IVF. So he started the process of weaning me off the medication. They were doing blood tests all the time. I went in for an appointment, and he was this Asian man, I'm five nine. He was probably a 5556, he's this small Asian man, very quiet, super introverted. And he walked into the room and he hugged me, and I was like, what's up? Dr Otani, very unusual behavior. And he said, You're pregnant. It was off of our cycle. It was not on the cycle we set you up on. I don't know how what happened. I don't know if you'll ever get pregnant again. I do know you have a higher rate of miscarriage. This is your miracle from God.

Paulette  16:14  
Wow. I have goosebumps, wow.

Jennifer  16:17  
So I was pregnant. It was a really tough pregnancy. I think because of hormonal imbalance, I was violently sick for about 16 to 18 weeks. I lost a lot of weight. I was pretty small. I was 20. I was like, model looking, you know, physically, I lost 20 pounds. I was literally almost down to 100 pounds at five foot nine. I am out of gaining it back and gaining an extra five pounds. But I was very, very sick, and I transferred care to a midwife at a at a home, a birth center, and I really just knew I wanted natural birth. I wanted to breastfeed. I wanted all the things I was very naturally geared, which is interesting coming out of fertility. I mean, I think those of us who are really preventative medicine naturally geared, deviate off that path when there's nothing to support us there. So I went traditional infertility, right? But then when that was done, I came right back to wanting to do things naturally. So even at 20 I knew I want a natural birth. At 37 weeks, I was on bed rest at 36 weeks because I was showing signs of early labor, and at 37 weeks, the midwife looked at me and said, you can choose this hospital or this hospital, but something's not right, and I'm transferring your care today.

Paulette  17:33  
And something is not right is a little vague for me.

Jennifer  17:38  
It's very vague. I think there's an intuition. I think I wasn't measuring Well, I love the midwifery model of care, because it's more in tune with the person and who you are and the measurements than it is. Like medical science, let's check these boxes, and she's like, you're measuring smaller, like, not just than I should be, than I had been. So baby doesn't seem to be growing. Something's going on. She just knew something, something fell off to her. Now I'm a more logic and research driven individual, not intuitive and soft and warm and fuzzy, so I appreciated the fact that intuitively just felt like things weren't adding up to her. So I was at this point in the military because of transfers and having a husband gone half the year. I was actually back in New England, where I grew up with so I chose Dartmouth Hitchcock Medical Center, and her decision saved my daughter's life. She's 32 She's beautiful. She's in finance. She's great, perfect, right? When I went there, I got really lucky in my care. And I say that because when you're in a medically driven, surgically driven, emergency driven place, the hospital, you don't always get the things that you want in a natural birth, right? And this OB looked at me, they did this big ultrasound, and he's like, I don't know what's wrong. I know she's measuring small. I know the accuracy of the ultrasounds at this gestation aren't as accurate. I don't know. Should we let you just go into labor? Because you're in early labor right now. We've been stopping it for a week ish, or would she be better being born so we can take care of on the outside, and I don't have that answer, we're going to have to make a decision together and just stick with that decision. But because she's measuring this small when she's born, there'll be a team there that will evaluate her. If something really wrong, they'll hand her back to you and allow her to die in your arms. That's where we were at going into labor. So we decided,

Paulette  19:43  
good God, that's a lot to take in. How does younger Jennifer feel about this conversation?

Jennifer  19:49  
I felt great that I was included. I felt really blessed to have this OB. I was very aware that I was walking into a situation where I didn't know anyone. I was unprepared. I had not taken a childbirth education class. I did not have a doula. I I had my mom crying in a corner. She took great notes, but she cried in the corner, and my 18 year old sister with me for this labor and delivery. I knew I was very unprepared. I also really, pretty much knew what I wanted, and so I said to him, Well, if you're comfortable, I'm already here, and we could admit me and just allow me to go into labor, but this is how I want that to go. I really want a natural birth. And he said, the labor is not a problem. That's not a problem. It's understanding at the time of delivery that we're gonna have to do an evaluation. We don't know what's going to happen. So they they put prostaglandin on my cervix. I immediately went into labor. I had her 19 hours later, and these are the things that were hard for the most part. I walked around Dartmouth Hitchcock hospital. They had a hot tub room down the hall that I could go in and out of whenever I wanted. Nurses were great, and towards the end, they were pushing an epidural, something I stated I did not want. And I finally said, Fine, I'll get the epidural, not knowing I'm in transition, not knowing what that means, just knowing I'm at the end of my rope here. Yeah, and the anesthesiologist came in. He put the needle in my back, he pulled it out, and he said, she's pushing. So I feel like I had these amazing medical professionals that saw me. I had the OB first and then I had this anesthesiology that was like, Wait, she doesn't need an epidural. She needs to push. That basically made it so that I ultimately got the birth that I want. I did have one shot of morphine somewhere in there, but it was that pressure from nurses and medical staff to kind of do it their way on their calendar that got me to do a couple things that I really didn't want to do. And in the end, it worked out fine, because I had this great anesthesiologist. So they, it was a teaching facility. They asked if they could have residents and students. I said, Yes, I knew that the NICU team was a team of three, and so I said, Yes, you can have residents. And so when I sat up into the squatting position with the squat bar, with the bed, and there were 23 people in my room, they hit my hot button like I was like, welcome to Jennifer's vagina. Show exactly, pull up a chair. Everyone. Now, I didn't have an issue with that, but that I do talk to my clients differently because of that experience. She was born, they took her immediately. I never held her. She was born, and handed to the NICU team. They did an evaluation. We could see, and I have it on video. You can see that she's really struggling to breathe. And they left. They left with her to the NICU. So they told me, If we decide to save her life, we're going to leave. And if we get her back to you, and there's something wrong, she'll die in your arms. So I knew that they were saving her life. I heard nothing for nine hours, and then the head neonatologist came into the room and said, If we had known how critical your daughter was, we would have handed her back to and let her die in your arms. She will probably not live through her for 72 hours. You will hold her after she's passed away. She's four pounds, four ounces, 19 inches long. She's born with severe Highland membrane disease, which is a lung disease, just total fluke.

Paulette  23:10  
So that means that she can't take in breath by herself because her lungs are not finished being developed, or they have some kind of infection. What does

Jennifer  23:18  
that mean? It was it's a specific disease that they had, that she had the valve between her heart and lungs, the PDA did not shut during delivery, so they were giving her andesin for that. They were giving her surfactant for her lungs. She was most critical of 29 babies in the NICU at Dartmouth.

Paulette  23:38  
So two things to say here. First, Highline membrane disease. HMD is also known as respiratory distress syndrome or rds, and that occurs when a baby's lungs are not fully developed and can't provide enough oxygen. It's one of the most common problems of premature babies. HMD occurs when the lungs don't produce enough surfactant, a liquid that keeps the airways open. Without enough surfactant, the airways collapse with each breath, making it harder for the baby to breathe. The second thing to note is that Jennifer is at Dartmouth, which has a level three of a possible four intensive care unit for neonates, so a hospital with a very specialized NICU.

Jennifer  24:20  
So I was released at 24 hours. I had a natural vaginal delivery. Nothing wrong with me, and I refused. I was not there's no way you're gonna get me to go to Ronald McDonald House. It was actually called David's house back then. There's no way I'm leaving this hospital. I'm waiting for my daughter to die so I can hold her. So not happening. So I was sleeping in waiting rooms. Wait,

Paulette  24:42  
so that's what you're that's what you're imagining at this point. Is she, they've told you that she's definitely gonna, yeah,

Jennifer  24:49  
she will not live through her first 72 hours.

Paulette  24:53  
Okay, yep. So they're

Jennifer  24:55  
doing everything. It was actually a resident that found the PDA issue,

Paulette  25:01  
and with respect to PDA that is patent ductus arteriosus, PDA is a heart defect that can develop soon after birth. It affects the way blood flows through a baby's lungs. According to Johns Hopkins, while a fetus is in utero, there's an opening between the aorta and pulmonary artery that allows blood to bypass the baby's lungs and go straight to the body. Blood does not need to go to the lungs first, because the mother supplies the baby with oxygenated blood through the placenta. The ductus arteriosus should close on its own within a few days after birth. When that opening does not close, problems can develop.

Jennifer  25:37  
It's amazing. With retrospect, I'm glad. I'm lucky. I had a happy ending in this, but it's amazing in retrospect, what happens when you're like, wow, that resident saved my daughter's life, that realization that situation saved her. They couldn't do surgery because she wouldn't have survived it. I mean, so she was on 100% life support by that nine hour mark, somewhere in there, so machines were keeping her alive, and they were going to do that until they couldn't do that anymore. So I'm in the hallways. I'm in waiting rooms. On day three, a nurse finds me, brings me to the nurse's lounge, stands there while I take a shower, helps make sure I have clean clothes, brings me to the pump room. And I've been pumping, but I've never seen a breast pump in my life, right? So they're like, You need to go to the pump room and pump every two hours. I Okay, well, I'm doing it, but I don't know what I'm doing. So she brings me to the pump room. There's a lactation consultant, this nurse, again, another angel, right? And another person who really saw me in this situation where I was very, very lost and alone, and the lactation consultant sizes me, hooks me up to the pump, shows me how to hook it up and get it started correctly, turns the pump on, leans over to me and puts her hands on my knee and says, Tell me about your births. And I just sobbed for 20 minutes because no one had asked me in three days how I was doing. I'm

Paulette  27:04  
going to stop my conversation with Jennifer here for today. I totally appreciate her sharing her experience of the infertility examinations and day surgeries. I do think we tend to imagine that if pregnancy is the goal and as the hopeful future mother, you should endure whatever the process offers without complaint, because this is something you're seeking. Thanks for listening. If you like this episode, please share it with friends. If you want to hear about the

because this is something you're seeking, but surely there's a middle ground where we can be grateful that there are proactive steps we can take to better understand our own bodies and at the same time, look for a more humane way to negotiate this uncertainty with real care. I'm going to stop my conversation with Jennifer here for today. You music.

Thanks for listening. If you liked this episode, please share it with friends. If you want to hear about the exciting research that's being done on understanding the uterus, among other things, which is leading to insights about endometriosis and menstrual cramps, you can catch my new show called Making Sense of pregnancy, which is coming out in November. We'll be back next week with the rest of Jennifer's inspiring story. Spoiler, there are many more children in this story, after the first.

Transcribed by https://otter.ai