This is the story of Desiree. She is 34 weeks pregnant and every day she doesn't give birth is a risk. Desiree has placenta percreta, a life-threatening condition where her placenta has grown through her uterus, threatening other organs. Join us for a journey filled with laughter, tears and extraordinary willpower.
The music in this episode was composed by:
Julie Maxwell - "Stuck on the Pacific" "Waste of a Sunset" "In Search of the Lost Future"
Desiree Barnes Doan: My first thought, honestly, was oh my god I'm gonna die cuz I'm Brown.
Desiree Barnes Doan: They said let's have this C-Section and while he was cutting me open, he said, why are we doing this. She could have pushed. Last week we were getting fetal monitoring, and the nurse was like, you have placenta percreta?. What did you do to be out and about?
Aleks Evanguelidi: Hi everyone and welcome to Under the Hood. I'm Aleks and this week is the first of what we are calling our story episodes. Throughout the season, you'll be hearing from real women in their own words, who've had firsthand experience with the issues we're discussing on the show. Today, we're going to hear from Desiree. And follow up to the episode from last week with Kim Durdin about the maternal and infant health crisis among people of color. We caught Desiree right as her story was reaching its climax. 34 weeks pregnant with her third child and just days away from major surgery. Desiree is a former client and friend of mine. And I'll be popping in with some helpful information. But mostly we're going to let Desiree do the talking.
Desiree Barnes Doan: My name is Desiree Barnes Doan. I am a mother of two. I have a son that's four and a half. His name is Fox. And I have a one and a half year old. His name is Jupiter. And I have another one on the way. I'm 30 weeks which is very exciting for placenta percreta.
Aleks Evanguelidi: So there are a few things that can happen with the placenta that can cause some issues for moms during the pregnancy and birth. All of which are really rare. You're going to be hearing Desiree mention a few of them. The first is placenta previa and that's when the placenta partially or totally covers the os or the opening of the cervix. Placenta accreta is when the actual vessels of the placenta grow through the uterus. Placenta Percreta is when the vessels grow through the uterus and into the surrounding organ systems of the woman's body.
Desiree Barnes Doan: In my case it's possible that it's attached to the bladder. I guess it gets tricky with this condition because I'm black and Mexican I have something called thalassimia minor and I have hemolytic anemia which are both connected. It gets a little tricky with the placenta percreta, I have to make sure my numbers are doing okay because part of the risk with placenta percreta is bleeding out during the procedure.
Aleks Evanguelidi: The procedure of course is the scheduled caesarean section surgery of the birth. And as you'll hear, Desiree has always known what she wants for her births.
Desiree Barnes Doan: My intention with Fox was to be a home birth during labor. I transferred out and I went to the hospital which was the worst decision I ever made in my entire life. And then with Jupiter I had a beautiful magical empowering home birth with Aleks and Blyss and it was just so special.
Desiree Barnes Doan: Last time I was focused on like my affirmations and like this baby is going to come out of my vagina was written in our bedroom like that was my focus. That was my main focus was like having this baby at home. Nothing else. This time. Oh boy. Guys I had the most beautiful birth plan for this baby. My focus was to make it beautiful. So I was thinking you are going to sew this beautiful cover for the birth tub that I have gorgeous pictures and maybe I'm gonna have this baby on the deck because I know I can do it and maybe it's going to be the most beautiful thing on the planet should I have rugs there in front of the.
Desiree Barnes Doan: I mean I was totally. My plan was to make it the most visually beautiful birth because I just like pretty things. That is not what's happening.
Aleks Evanguelidi: In preparation for the information that Desiree's about to share about her first birth experience what I really want our listeners to know is that the primary reason that most home births transport from the home setting to the hospital setting is maternal exhaustion. It's not that there's something in danger with the mom or that the baby is having an issue in the labor process. It's that moms have been laboring, they're exhausted. maybe they're dehydrated but for whatever reason, labor has plateaued and it's a prudent decision, generally made with the birth team and the mom, that the hospital is the next best option.
Desiree Barnes Doan: I labored at home for I don't know 30 something hours 40 hours and I decided I wanted to go to the hospital. I just got out of the birth tub. I didn't my body was pushing it was really uncomfortable and I thought I'm done. So we transferred and they left us in like some hallway or something for hours before they put us in a room.
Desiree Barnes Doan: I was peeing on myself and pooping on myself. And it wasn't very private and then we got into the room. I got an epidural. I was told to rest. We rested. And the midwife that was there kept saying like you know this has been going on for a long time and your water broke a long time ago and I'm not seeing that you're ready to push. I'm not seeing that it's time yet. And so, we started feeling the pressure. Once I woke up from sleeping like serious pressure. Even if you can push I can't guarantee that your child is gonna be okay. Those kind of things.
Desiree Barnes Doan: And my husband finally looked at me at one point when they were really putting the pressure on us and he just said I just want my baby let's just do what we're told, because we were really fearful and tired. We were exhausted. We'd been up for days and so they just kept saying we don't know if your baby is going to make it if you try to push and any way you're not ready to push. So I agreed.
They said let's have this C-section. So we went in, and the doctor was so cheeky. He was so condescending. It was all just very traumatizing. They cut me open. And while he was cutting me open he said why are we doing this? She could have pushed. And that for me, who was trying to have a home birth, was just like–is this for real?
Desiree Barnes Doan: What do you mean I could have pushed right? So I just lay there crying. Oh and I was also vomiting in my own mouth laying on my back because I was having a good reaction to whatever medication they were giving me. So it was pretty traumatizing to hear that while being sick. We had our baby. I asked if I could keep my placenta and he said Why because Kim Kardashian kept her placenta?
Desiree Barnes Doan: Okay. Women have been keeping their placenta and ingesting it for ages. Can you just give me my placenta. So that was pretty traumatizing. And at the time I thought, wow what a gift. Like you know the words, why are we doing this, she could have pushed. As traumatizing as that was at that moment. It really helped me with my home birth with Jupiter because I was like even this doctor said that I was fine that my body was actually doing what it could do. So I know I can do it. I know I can do this. So it really helped me with the second birth.
Desiree Barnes Doan: Now today, God, that statement kills me. You know it brings me to tears to think like why are we cutting her open she could push. Now I have this condition that can be caused by the scar tissue of C-sections. And so those words that were helpful with my second birth became again super painful and from traumatic. It's crazy how that happens, huh? It was devastation and then it wasmy inspiration. And then it just became my hell and I'm like oh my god.
Aleks Evanguelidi: One important fact to note here is that placenta Accreta and its more severe sister placenta percreta, are more likely to happen in women who've had previous C-Sections. This is a fact that is rarely shared with women upon that critical moment of making the decision about how the birth is going to go. And this is one that certainly wasn't shared with Desiree at the point of her first birth.
Desiree Barnes Doan: So when I first found out that I had– when I first found out that I had a placenta accreta right let's say to start I was in super denial. I was like oh no they don't understand, I'm going to get acupuncture I'm gonna drink a lot of water and just give it a go away break. First of all at first it was like you have placenta previa and it's a full previa. What that means is that your placenta is sitting on top of the cervix so you can have partial and you can have full.
Desiree Barnes Doan: I had full. I was like, it's OK I'm going to drink water I'm gonna have acupuncture. I'm going to visualize this placenta moving its way up. It's going to be fine. But the doctor that I really trust you said I need you to get a second opinion. Because I can't tell if it's accreta. I'd never heard of placenta accreta. I didn't even know what- I was like OK. Yeah sure. So I went to get a second opinion and the second maternal fetal medicine doctor said well it could just be a bulge right. He looked at the placenta. He said you have a previa you probably need a C-section. I thought that was the end of the world. I was like OK. Yeah. No it's not going to happen. I'm going to move my placenta. He said there's a little buldge there it could possibly be just a bulge.Sometimes we see that sometimes it's common.
Desiree Barnes Doan: And I said OK great. So worst case scenario if I have to have a c section your duties you'll be gentle and he's like, yeah, I think you need to get a third opinion. And I was like OK. My husband he was like see you he doesn't think it's accreta. It's fine.
Desiree Barnes Doan: And I was like no Reidar. I don't think this is fine actually. Nobody wants to play with me. Everybody keeps telling me I need to get another opinion.
Desiree Barnes Doan: So I came to the specialist I'm with now and he is an accreta specialist and he immediately was like you have placenta accreta, which is the most basic form when the placenta kind of is stuck to the uterus a little bit, not going through it. So once I saw the third specialist that's when this process really began for me. My first thought, honestly, was oh my god I'm going to die because I'm brown.
Aleks Evanguelidi: The fear that Desiree has and really many women of color have about dying in childbirth is valid. As we learned last week in our episode discussing the maternal and infant mortality statistics affecting women of color during the childbirth process, even without the multiple high risk conditions that Desmiree faces just the fact that she is brown itself presents a risk.
Desiree Barnes Doan: The dialogue around birth needs to change. For me I never, there was a lot of fear. My mom is also a woman of color and she had horrible experiences. She also had me at 15 so that was hard. They wouldn't let her get an epidural, she begged and pleaded. So I think she had her own trauma. So when you have somebody raising you with that kind of trauma they're not talking about a natural birth in a positive way. When somebody is telling you you cannot have an epidural it wasn't like my experience with Jupiter where I was like this is so intense but amazing. I think it was violating for her. She was also made to lay down. She was with a bunch of nuns. It was definitely punishment. My grandma could have said give her the epidural but she wasn't old enough. And my grandmother was kind of like well this is what happens when you have a child at 15. So it was different from my mother she couldn't understand why I would choose a birth at home.
Desiree Barnes Doan: It was very hard for her to support it the first time. And when I said I wanted to try again she thought I was nuts. She was like, What do you mean. It all went wrong. And I'm like yeah cause I went to the hospital. You know we have two different experiences for me what went wrong is that I transferred out of care.
Desiree Barnes Doan: From my mom,she was like that whole thing was like a bad idea you should it just started and it wouldn't have been so traumatizing. But I have to say she was so happy and supportive when they had Jupiter at home. She was like that's amazing.
Desiree Barnes Doan: And I think in general, women talk about birth as this excruciatingly painful thing. And I remember when I was pregnant with Fox only one woman ever said my favorite part was pushing and even I thought, wow this one is a little crazy.
Cause it was the only person that ever said that to me. And honestly after Jupiter all I could think of with this pregnancy at the beginning, was oh my god I can't wait to push out my baby again cause it's just the best thing on the planet. But you don't really know until you've you've done it. And I feel like if we shared those awesome stories with each other instead of like it's painful or it's there's so much fear around it. I feel like for all women not just women of color.
Aleks Evanguelidi: Desiree is a woman who in many ways pushed back against the narrative that the world was giving her. She decided to write the script in a way that best suited her desire to feel empowered in this experience. Placenta accreta and the more severe placenta percreta generally means you're in the hospital at 28 weeks. Often the C-section happens at that time. 40 weeks is considered full term. So that's a full 12 weeks ahead of schedule. Most C-sections are also just small incisions just below the bikini line and easily hidden by underwear and bathing suits. But this is not what was in store for Desiree.
Desiree Barnes Doan: In my case they're cutting me from the top to bottom sort of vertical cut big. And honestly the trickiest part about this whole condition is because they really don't know what they're gonna see so there's lots of options. I don't get to choose by the way, I don't have to choose which one I get. But they give you a lot of options, like they can cut me open, it can look really tricky in there, they can take the baby out the top. Close you back up. Monitor you for two weeks. Hope that the placenta shrinks. Reopen you two weeks later and then try to cut out the placenta.
Desiree Barnes Doan: The best case scenario which is what I'm hoping for and like putting out there is that they cut you and they pull the baby out the top you get one minute to see your baby, if all is well. They take baby and they get to work. They start cutting the placenta off of whatever. I probably will have a catheter in for quite a while. They have to maybe poke a hole in my bladder or trim it a bit and then they sew me back up and I go home in 4 days.
Aleks Evanguelidi: Generally speaking having a placenta previa or in some cases an accreta, it is possible to keep your uterus.
Desiree Barnes Doan: Oh no that's not available. I'm definitely not keeping my uterus. I think the order of loss for me was I think first came fear because I'm brown and statistically the odds, just off the bat are against me. And then the next thing for me was I can never have a baby again which was- we weren't ready for that.
Desiree Barnes Doan: We wanted maybe one more. And also even if I didn't want another child I want to lose my uterus. Like, especially because of an unnecessary procedure. Why are we cutting her open. She could have pushed. So it's super hard to lose your uterus would you've heard that sentence. You know. I feel I'm being robbed of my peace. Of my choices. My my womanhood in a way. Like. You know my husband is amazing I asked him before I'm like, are you OK with the fact that I can't have any more babies? And of course he says yes of course. We're gonna have three beautiful children but there's just this part of me that just feels so sad.
Aleks Evanguelidi: So often in society women are not really given the option to grieve or mourn the loss of what could have been. So much emphasis is placed on, well look at the healthy children you do have. And women are feeling invalidated and not really given the space to grieve what they are being forced to let go of without their choice really. Where Desiree is concerned, the closer you get to 35-36 weeks, the greater the risk of a spontaneous bleed, which threatens the life of the mother and the baby.
Desiree Barnes Doan: I can't believe I made it this far. Last week I had an appointment. We were getting fetal monitoring and the nurse was like, wait you have placenta percreta. I've never seen a woman that's not checked in at 28 weeks. What did you do to be out and about? I was like, I've been advocating for myself... A lot. I just didn't know that you could say no, I'm not going to do this. And it's empowering and it's scary. Sometimes I feel really strong. And I think a couple nights ago I was crying to Reidar saying oh my God maybe I've been so selfish.
Desiree Barnes Doan: It's not easy to go against what your doctor is telling you to do. But I also don't trust everything that they've told me to do because if feel like that's why I am in the position I am in today. If I would have known that I could have said no actually I'm not going to do this. And actually I'm going to try to push. And actually I don't believe what you're saying. But I think that's where the education comes in. So where do we get this education? I don't know. Where do Brown women get this education? When do we get empowered to feel like we can speak up? Where do we even get the information to speak up?
I feel like I'm so lucky. This is my third child so I've been surrounded by this really beautiful community. So I have a lot of support and a lot of really informed women around me. But if I didn't? I don't know.
Aleks Evanguelidi: This access to a well informed community and support system is something we know not every woman has access to. And Desiree is right. This is a big problem for all women, but especially for women of color who have to do so much more to be an advocate for themselves.
Desiree Barnes Doan: I want to believe it's okay. And then I also just look at the statistics and you just can't ignore it. Right. You can't be like, oh, well I'm different. So that was really big. And also in this journey at one point I was like I want to advocate and I'm one educate everybody on placenta percreta and I'm going to do this. I'm feeling good. It was like a week that I was, you know you have your ups and downs with this right. It was a week that I was feeling super empowered. I went on this like accreta advocacy group on Facebook. And every story was extremely traumatizing.
Desiree Barnes Doan: So then you'd read like, I made it through placenta accreta but my baby did it. They were just are really not great stories. And then you would see, pray for me I have my surgery today ladies. And then two days later it would be like, we've lost another sister. And that was like a really traumatizing moment for me because I was like wait a minute. There are other women here that know they have this condition. And have specialist as well and are not making it through this condition and they've probably gone through the same steps that I have. Right. They probably had their empowering moment where they were like I'm going to advocate I'm going to join this group. And then they were just like this go fund me afterwards.
That moment was really hard I think I cried for a couple of days and I didn't join the group by the way, cause I was like oh just wait till I get to the other side to advocate and educate and all that good stuff.
Aleks Evanguelidi: Something I really wanted to know from Desiree was the way in which she was different from other patients. How is she able to work with her doctor and allowing her to go up to 35 weeks pregnant? Where else did she specify her wants her needs? She shared a little about how she advocated for herself and why she ended up here, living temporarily away from her home with two small sons and her husband.
Desiree Barnes Doan: Well first of all I'm different from my doctors other patients because I'm his favorite (laughs) Again being in this community with all of you beautiful powerful women I came in and I came in with like 30 questions. And I also knew what placenta accreta was and I also knew that I wanted to try to save my uterus. And I also immediately off the bat told him I'm feeling fearful because I'm a woman of color. Am I going to die? I was not afraid to have that conversation with him. And in fact after our first conversation, first off he said I thought I was just going to do an ultrasound. I didn't set you up for a meeting but let's just do it because I'm not going to let you go home without your questions answered.
Desiree Barnes Doan: But I had like 30 questions. And he also was surprised, he said usually when women come in I'm telling them about placenta accreta and I'm giving them that information and teaching them about what this is what we've discovered this is what's happening with you. He said, but you've come in and you're like telling me- Like, my first question was can I terminate? He was like I don't think anybody's ever asked me that question. That is a really good question. It's not that I wanted to terminate. It's just that if it was an option to terminate and save my uterus and I mean from the get go, my pregnancies have been about trying again. Let's try again. I've had some losses. I've had my c section. Let's try again for a home birth. I've had - It's been about try again. So I was like hey, if I terminate now, can you save my uterus? Can we just try again? He was like, well based on your ultrasound I can't guarantee that I can save your uterus.
Desiree Barnes Doan: I think the other thing that's different is that every single time I see him I say to him can you save my uterus? Every time I see him and he at first it was like we have 80/20 and recently with my MRI he's like I can't save your uterus it's not going to happen. And so now I ask him when I see him, but if you go in there and this was all a big mistake, will you save my uterus? And he says yes Des I'll save your uterus. I know what we're trying to do. So I think just being informed and I don't think I'm smarter than him. I also just think that when I went in there I was very clear this was not going to be like my first experience. So we talked for a very long time because they had like 30 questions as I said.
Desiree Barnes Doan: But I also said OK if you're going to take my uterus I need you to be loving and compassionate. You can't just take my uterus. I need you to comfort me and love me and hug me. And he was like, I'm still here. And I knew at that very moment that he was the doctor for me.
Desiree Barnes Doan: When I say I want my blood work. At first he was like why? Why? Because I need to know my numbers. I can help you. He's like yeah, OK. And then he goes to his nurse practitioner when you get her numbers can you give them to her. She's like why? Because she wants them! And when he called he was actually I think your numbers are really good. What are you doing?
Desiree Barnes Doan: So I think it's just about asking questions telling them what you need you got a push a little bit. Like they don't typically allow women to go to 35 weeks let's say and if they do there in the hospital monitored. But I knew I knew when I had to stop pushing when I was like if I make it to 35 you do 36 and he was like, No. So I knew that was it. Like I couldn't push him any further. He was like Des we need other people on our team I'm finding myself like defending you over here. There's not just you me, and I'm like but it is just you and me.
Desiree Barnes Doan: So I think you kind of figure out like how to push limits and how to ask for what you want. At a certain point, I was like how can I help you feel safe. I knew where he didn't feel safe anymore. And he wanted to do the procedure earlier.
Desiree Barnes Doan: And I said, How can I make you feel safe. What can we do to give me more time? What will make you feel like you can give me more time? He was like if you moved to Long Beach. I was like okay great. When do you want me in Long Beach? And I know I have him on pins and needles. He's not like whoo hoo she's made it to 35 weeks. In fact the other day I was like we're doing it, and he's like I'm not, I'm not whoo hooing you yet. There's still two weeks. It's scary for him too and it's uncomfortable but I know he can do it. Otherwise he wouldn't. And I'm grateful. So he knows like we've had enough dialogue. He knows what I want. He may not be 100 percent comfortable with it. I mean I think he knows that he has to negotiate with me too that it's not going to be easy. I'm not going to just be like okay.
Desiree Barnes Doan: I think that's something I wish I knew how to do from birth number one and again I go back to that question like how do we get women to there. The first time around. Not when they need to because it's life threatening or they're so traumatized. So how do we get to where I am today without all the trauma.
Aleks Evanguelidi: What Desiree is describing here is the best of what we could hope for and maternal care or really all care. A relationship between a patient and her practitioner. That is one based on mutual respect and a willingness to work together. Patient advocacy is critical in receiving the best care.
Aleks Evanguelidi: So when you're working with your doctor make sure that you feel heard about the things that are really important to you your outcome is going to be better as a result of being involved in your care.
Desiree Barnes Doan: It's so scary. I can't, I just can't say anything other than it's scary. It's a huge surgery. I guess it just depends on how much the placenta has done. How much how hard your placenta is working! And I feel like I'm still paying the price for transferring and like having the C-section. I didn't even realize how much I'd pay for that decision right? You think it happens and it's over. But it's not over I'm still dealing with it now.
Desiree Barnes Doan: I know it's becoming more common right. The more C-sections you have the more likely that you can have placenta accreta's. I know that it's happening more often. But aside from the accreta, I feel like I've really learned that we actually have choices that we can actually set limits for doctors. And if I would have known this before I would have never had a C-section. I would never have been bullied into one. I would have never been exhausted into one or whatever happened right. I think I would have been able to be super clear.
Aleks Evanguelidi: This conversation with Desiree happened about four or five months ago. So now is probably a good time to tell you.
Aleks Evanguelidi: That there's a happy baby boy named Thunder and Desiree and the rest of her family have adjusted beautifully to a life of a family of five.
Aleks Evanguelidi: You can follow Desiree's story on Instagram at Fox and The Traveling Gypsy. If you have a story you think we should share, please reach out. You can email us at go under the hood at gmail dot com. For more information and resources about the conditions we spoke about on this podcast.
Please check out our Web site at under the hood podcast dot com See ya next time.