SERIES - Maternal Near Miss Survivors (USA)

SERIES - Maternal Near Miss Survivors (USA)

On the eve of the March for Moms in Washington DC this past May, I had the honor to sit down with nine women who are part of an online community for maternal near-miss survivors – women who nearly died as a result of childbirth – to talk about their experience. For almost four hours, they told raw, courageous, and honest stories about their births and postpartum periods. One after the other, they shared the reality of what it means to "survive" childbirth and its aftermath: the psychological, emotional and physical tolls of having given life, and yet, almost lost yours. I hope you are as enlightened and moved by their testimonies as I was.

 

 Alisha, Danville CA

Alisha, Danville CA

I had my first child via C-section because she was breech. For my second, I was already prepared to try a VBAC, but unfortunately, when I went in for my anatomy scan, things weren’t right. There was a lot of talk in the room and whispering behind windows. They told me I had a condition called placenta accreta. That was the first time I’d heard that word, and while my doctor was doing the scan, he didn’t describe what it was to me. He only said that there was a possibility he’d have to remove my uterus at childbirth. That’s all. So, I went home, and I did what you’re not supposed to do: I googled "accreta." Big mistake, because this condition is quite dangerous. Basically, the placenta attaches too deeply into the uterine wall. It can go through the uterus and start to attack other organs, cause internal bleeding or maternal death. No one had ever mentioned to me that placenta accreta is also a risk factor after you’ve had a C-section. I had to wait until the third trimester for my doctors to confirm that I had, in fact, this condition. The wait was very scary, but I found a support group, which was great, and tried my best to talk to different doctors to understand a bit more about the condition. They all seemed hesitant to talk to me about it until they knew for sure. Unfortunately, we found out that not only did I have accreta, but I had it in its rarest form, called percreta, where the placenta had attached to my bladder. I ended up delivering early, at under thirty-two weeks, because I started having contractions. I had an emergency surgery, and it was fairly traumatic: there were about twenty doctors and nurses in the room, and we had to wait forty minutes because there wasn’t enough of my blood type, which is kind of daunting because you are, essentially, preparing yourself to bleed out during labor.

I often describe her birth as the furthest thing from natural labor you can get. I was put under for the entire time, and when I woke up, six hours later, I was in the ICU, and I was intubated with a breathing tube. I didn’t know what was going on. I had aspirated during surgery and had a lot of complication from that. My daughter was fine. She was born three and a half pounds. She was a fighter, and they put her in the NICU to get lung care. Next thing I learned was that they had to perform a hysterectomy: my uterus, my fallopian tube, and a portion of my bladder were gone. I called it the ‘Organ Fire Sale!’ They just took them all out. I had a lot of other complications postpartum and stayed in the hospital for a total of four weeks. When I was released, we transferred my daughter to another NICU, closer to home. We visited her the next day after I left the hospital, but I started not to feel well and went to the nearest ER. It turns out I had 3000 CC of fluid sitting underneath my lungs from aspirating during the surgery. I had infections, and I still had a catheter that I had to carry around because my bladder wasn’t healed. I stayed in their ICU for a week, but they couldn’t get a handle on it, despite all the procedures and chest tubes and draining of all sort, so they transferred me back to my original hospital, under my surgeon’s care. That’s when things started to turn around, and I began to feel a little bit better. But again, all this time I was away from my newborn, who was in another hospital, and from my two-year-old who was home and whom I hadn’t seen in weeks. But I was hooked up to so many things that, quite frankly, I didn’t want to see her; every time we talked, it was heart-wrenching.

We didn’t have any family nearby, so they had to fly or drive in to take shifts to care of my firstborn. It was such a tough time. I never imagined that I would be spending four weeks postpartum in the hospital. And what they don’t tell you is that once you’re past that time, it’s not like if you go home and all of a sudden, you feel great. You have long-term morbidity issues. For example, I’ll always have chest pain, lots of follow-ups, bladder issues and all these things we don’t talk about because we’re not supposed to. What you’re supposed to do is to be happy that you and your child survived. It’s evident that I’m grateful, but it doesn’t mean it’s not extremely hard. I really felt angry that nobody had really talked to me about accreta before. Not that it would really have made an enormous difference in my situation, but I would have liked to be armed with information. I was shocked that nobody, not even my doctors, wanted to talk to me about it, or even knew about the condition! So afterward, I decided that I would advocate as much as I could for accreta patients and for the maternal mortality movement. I met other women, like Kristen, with whom I founded the National Accreta Foundation. That’s been a wonderful place to channel all of this and to try to find a place where I can heal and help as much as I can. And here I am…

 

 Alexis, Alexandria VA 

Alexis, Alexandria VA 

I had placenta accreta with my first viable pregnancy. Before that, I had two losses and went through a total of four surgeries – two D&C for the miscarriages and two hysteroscopies to remove a uterine septum. The latter condition was likely the cause of the miscarriage, and I’m quite sure that those four surgeries are what caused my accreta in my third pregnancy. I had been put on bedrest at about twenty-seven weeks because my cervix had shortened too much and they didn’t want me to go into labor. So I worked from home for two months. Then, during a routine ultrasound, they told me something was wrong with my placenta and asked me to do an MRI to "make sure it wasn’t accreta." They tried to explain what it was as well as they could, but of course I went home and googled it, and you find out how crazy and scary it is. Doing an MRI pregnant is also very stressful and obviously not normal, neither for you or for the medical staff. I spent three days home worrying about the results as they didn’t call me the day after the MRI, like they were supposed to. But when they did, they simply asked me to go to another hospital than the one I was supposed to deliver to, which was a big red flag for me. They didn’t tell me anything. Just, "Go!" When I got there, I was admitted right away and was told that not only I had accreta, but that I had to deliver my baby right now. I was thirty-six weeks pregnant and three days. Luckily, I was able to wait it out until that Friday, which led us to the thirty-seven-week marks. All I remember from the day my child was born is that when they were prepping for the surgery, the anesthesiologist came in and gave me a reality talk. It was the first time somebody had taken the time to look at me in the eyes and explain to me that I could die. He sat down and just said, "I want you to know that we will do the best we can to make sure you don’t."

After my talk with the anesthesiologist, it was the first time I allowed myself to break down. I cried and I flipped out… but I was thankful for his honesty. Although they had told me I would be put under, they decided that morning that I would go through the surgery with only a spinal tap – so awake the entire time. It was a last-minute decision, but I was able to hear my son being born. Then they whisked him away, and I had to wait for everything else to be over. He was delivered at 1:15 and I was in the OR until about 5 o’clock, staring at the light. The staff put music on – Adele – and now every time I hear that damn album, it brings me back to that OR. I remember everything: their call to the blood bank, which was freaky, and being freezing cold and shaking. Luckily, they kept checking on me, making sure I was okay. And I was. When I got to the recovery room, I was incredibly bloated. My legs were twice their average size. I have one selfie of that moment, and my face is just horrible; I was blown up like a balloon. But I regret not having more photos, now. That’s the way it is. My son was fine. Totally fine. I saw him four hours later, and we recovered together for the next two or three days, in the hospital. When I hear all the stories of the other women around me today, I feel… I feel like I did pretty well. I got lucky.

I have one kid, and I know I will never have another one. With accreta, you are almost always guaranteed to have a hysterectomy. Everything was removed, but I’m okay with it. There are days where I’m not, obviously, because it wasn’t my choice to have that surgery after only one child, but I figured I was thirty-eight when that happened. I might have been able to have one more, but maybe not. I do wish some days that my son had a sibling, but it’s life. I’m lucky to be alive and to have found so many amazing women through this experience. The only thing I wish I had done differently is to tell people when that happened. I didn’t tell anyone. All of the emotions and the trauma… I just chilled everything in for a long time. Now I can talk about it, and it feels good. I found the accreta group and started organizing blood drives. I also shared my story on a website called Heroes for Mom, which is not something I would typically do. I don’t think most people understand how painful that experience was. At the same time, I never offered a lot of information about what was going on. In a way, it’s kind of my fault because I didn’t tell them how serious it was. It is what it is. The thing I do know for sure, though, is that I wish I had told them. Maybe they would understand better now why I’m so passionate about the blood drives. As I said: it is what it is. 

 

 Kristen, Saratoga CA

Kristen, Saratoga CA

For my first pregnancy, my son was breech. I didn’t want to have a C-section, but that was the safest thing to do so I took the hit. The surgery went well, my son did great, and I did great. I had never had surgery before, so it was scary, but even during the C-section, I thought, "Oh, this isn’t that bad!" It was also very fast, so I came out of it relieved. Then, when he was about a year old, I got pregnant again. The whole pregnancy was just a roller coaster. First, it was a little sooner than we expected. Then, I started bleeding out of nowhere. I was certain that I was miscarrying, so I called my doctor, but I had a subchorionic hematoma – when the placenta detaches from the original site of implantation and causes bleeding. The baby was fine, and I thought, "All right, let’s plan for a VBAC!" I wanted it to be my "redemption" birth. But at the next appointment, I found out I had placenta previa – when the placenta covers the cervix – and it automatically meant another C-section. I was devastated. I had also heard stories of women bleeding out during birth because of their placenta, so I started asking questions about cutting through it. My doctor was like, "Oh now you’re talking about placenta accreta… that’s scary stuff." Ironically, if I hadn’t confused the two conditions, I would never have heard the word ‘accreta.’ I eventually found out on my own that placenta previa over a Caesarian scar is the perfect storm for a placenta accreta, but they kept brushing me off at every ultrasound, telling me not to worry. I wanted to believe them, but I also felt they weren’t taking me seriously. It was pretty late in my pregnancy when they finally found evidence of accreta. They were really cavalier about the way they told me, so we switched hospital when I was 28 weeks. They got me in immediately, did an MRI, and the radiologist told me that they were really concerned about my bladder and would like to admit me as soon as possible. I felt very unsafe, so we went in when I was 32 weeks pregnant. My team did an excellent job preparing me for what to expect during the surgery, but it was still overwhelming. We made plans for the best and the worst-case scenarios because accreta can be unpredictable; you’ve really got to get in there to know how serious this is. In retrospect, I went from thinking about how should I decorate the nursery and name my baby, to being in the hospital learning about neck ports and aortic balloons. All at once, you are grateful, because you know you’re about to lose your uterus and it’s going to be your last pregnancy, and also terrified, because you’re facing medical situations you could never have imagined, even in your craziest dreams.

I was thirty-three weeks and six days when my second son was born. He did great. As for myself… I was awake for his birth, and then they put me under general anesthesia. The plan was that they would to a hysterectomy, repair the bladder and they expected high blood loss. This isn’t what ended up happening. When I woke up eight hours later in ICU, I was told that there was placenta everywhere and it was way worse than they’d thought. There were so many organs affected that they had stopped listing them, and didn’t even try to remove the placenta, because of the high risk of bleeding. After conferencing with other accreta centers, they had decided to leave the placenta in, and to close me up. They’d never done that before. So, I woke up thinking that I’d made it past the hard part, and all I had to do was to recover, only to find out they didn’t do it. To know that you are in the best hospital possible for that kind of surgery and hear them say that it was so bad that they didn’t know what to do... it made it very scary. There were a lot of concerns that I would get septic or hemorrhage, but no one knew for sure what was going to happen over that approach. The hardest part, I think, was that uncertainty: to realize that it wasn’t the end of it. I spent seven weeks in the hospital before I started having a severe complication called DIC, which is a blood clotting disorder. They had to go in and finally do the hysterectomy and bladder resection. By that time, my placenta had shrunk, as they were hoping it would. So, while it was a rough surgery, with high blood loss, it was much better than it would have been right after delivery.

My case was considered a success, but emotionally, I felt it would never end. There was a point where I was thinking, "Am I going to be pregnant forever?" I remained in the high-risk pregnancy category for those seven additional weeks because the placenta was still inside of me. I just wasn’t prepared for that, and no one seemed to know what the game plan was. After my experience, I just couldn’t believe that not more people were talking about accreta, especially as the incidences are increasing by a lot because of the caesarian rates. I was baffled to learn that my story was part of a bigger story, which is maternal health in the United States. I had learned so much, and I felt compelled to get out there and let people know about that, to put a face on the data. It’s easy for obstetricians to say "Oh! Placenta accreta is rare," but in reality, it happened to me after only one C-section. We need to treat every C-section as a potential future risk, as well as prior uterine surgeries, IUDs (intrauterine device), D&C (dilation and curettage.) Uterine surgeries are the most common surgeries in the United States, and yet no one talks about accreta. It blows me away. To be clear, I am not anti-caesarian by any means: none of my children or myself would have survived if a C-section hadn’t been available. A caesarian tried to kill me, while another saved my life. But one in three births – the actual C-section rate in the US – doesn’t need to be a caesarian. We do too many, and when there are risks like accreta, we need to talk about that. So, that was my motivation to cofound, with Alisha, the National Accreta Foundation. To bring attention to the condition, and to proactively reduce the incidence of future accretes by lowering unnecessary caesareans.

 

 Casey, Bridgewater NJ

Casey, Bridgewater NJ

My husband and I had been married for fourteen years when we got pregnant with our miracle baby. We both suffered from infertility for many years prior, and our doctors had been clear that we would never have a biological child, so I was just so happy to get pregnant. At twenty-four weeks, I was on my way to work, feeling great, and as I walked into the building, the elevator was out of order, so I had to take the stairs. This moment is what I consider one of many divine interventions in my story. I was going slow, saying hi to coworkers, but by the last six or seven steps, I could see my vision getting spotty. I became dizzy, and I suddenly understood that if I didn’t get to the top of that stairwell, I would likely fall and either hurt myself or kill the baby. I mustered all my strength, and by the time I got up there, I was yanking onto the door to get into the hallway. I couldn’t breathe and was gasping for breath. One of my coworkers saw me in distress and helped me to sit down. The onsite medical emergency team was there within a couple minutes. I was able to catch my breath within 20 minutes and then felt fine, ready to go back to my desk. There was one woman on the emergency management team who said, "You’re pregnant. I think you should consider going to the ER." I was reluctant, but I went, out of an abundance of caution. My husband and my mom eventually met me at the hospital, and we waited there as they ran a bunch of tests. I was tachycardic, but all of the other test results came back negative. I was exhausted and ready to go home, but the ER doctor said, "Just one more test, and then we’ll let you go." When he came back an hour later with the results, he told me I had a bilateral pulmonary embolism. Blood clots had lodged in each of the two pulmonary arteries, which means that earlier that day in the stairwell, the baby and I came really close not to make it.

I was admitted to the ICU and stayed at the hospital for five days. I felt pretty good considering the severity of my situation, but I think I was in denial. When they let me go, I had Lovenox, a blood thinner, that I would inject myself twice a day for the duration of the pregnancy, and possibly beyond, to avoid and treat the clots. I didn’t have a lot of information about recovery or what to expect, and none of my doctors were really helping me navigate this scary time. Despite having gestational diabetes and being tachycardic, they allowed me to try for natural childbirth. I had to stop the injections of blood thinner as soon as I felt contractions so my body could adjust if I ever had a C-section, which I ended up needing because, after twenty-six hours of unmedicated labor, the baby got stuck. The surgery was uneventful, and we were home soon after. Because I was switched to an oral blood thinner after delivery, I needed to go back to the hospital for blood tests that following Monday to make sure I was still within the therapeutic range. I never made it. That Saturday, my abdomen was hurting a lot. I called my OB, and she said it was probably my uterus contracting because I was breastfeeding or constipation from the surgery. I didn’t know any better, and I trusted her judgment. But later that night, I handed my one-week-old newborn to my husband because I was in so much pain. I waited until 7am to call my OB again. I didn’t want to bother her if it was nothing. When I finally reached her, she suggested a couple of treatments I could try at home, but none of them worked. I called a third time, and she said: "Maybe you should go to the ER in case we are missing something." I tried to get out of bed, but I couldn’t even stand on my own. My husband had to dress me and carry me on his back. On my way down the stairs, I passed my son’s nursery. My mom, who was home with us, was holding him, and it occurred to me that I may not see him again. I didn’t want any of the scenarios that were going through my head to start with me not kissing him goodbye. So, I asked my mom to bring him to me. I couldn’t really hold him, but I snuggled his little body. Then I said it was enough, which was a lie: it could never be enough.

When we got to the ER, and I told them I had a C-section the week before, they ushered me right in. It was like you see on TV, with doctors running all over the place and me who couldn’t answer their questions fast enough. After a quick ultrasound, they saw I was bleeding internally. One of the problems was that the blood thinners I had been given after my delivery were three times higher than what they were supposed to be. After they stabilized me with blood transfusions, they monitored me for a while, mostly to see if I would clot on my own. It didn’t work. I had to wait for the following morning to have surgery. Overall, between the time that I arrived and the end of the operation, I received over twenty-two units of blood. I lost over five liters and was bleeding from six different places inside. I woke up a couple of hours later in the ICU and stayed in the hospital for a total of eleven days. During that time, I developed every possible thing you can imagine, and I gained forty pounds of fluid. I remember standing in the bathroom the first time I took a shower home, and not recognizing my body. I felt like Frankenstein’s bride: staples up my abdomen, bruising everywhere. It’s interesting because I was so deep in survival mode that I know I blocked out a lot of things. It took me two years to piece my whole story together. And just two months ago, I learned that I have a bleeding disorder. I know we discovered it because it was me, armed with my medical records, who asked the right questions and pushed for answers. I also learned that new moms are one of the largest groups of people to benefit from donated blood. So, one year after my second hemorrhage near miss, I went to the hospital to donate blood. I wanted that to be my survival tradition. I can’t anymore because I have too many issues, but I do blood drives. Had the blood not been there to stabilize me before surgery, I might not be here raising my son. It’s a huge thing for me to be able to give back and say: "If you have those symptoms, go to the ER immediately. These things do happen to pregnant women. You have a right to know what you’re going into, you have a right to trust your body, and you have a right not to be afraid to advocate for yourself."

 

 Meg, Crofton MD

Meg, Crofton MD

My fourth – and my last – baby was a boy. He is my percreta baby. I found out early that something was wrong with this pregnancy. I started bleeding before eight weeks and went to the ER. It looked like the sac had implanted right on my previous C-section scars, which is always a concern. During the following weeks, I had to have my blood drawn to see if my hormones levels were going up, and they were. After that, they just kept checking on me, to make sure it was viable. For the Fourth of July weekend, we had gone to Wyoming for my brother’s wedding. We were in the middle of nowhere, and I started bleeding again. It just wouldn’t stop, so we went to the ER there, which was a forty-five-minute drive. They did an ultrasound and, in our head, we were sure he was gone. But no, there was a heartbeat, and the lady just told us he had a hematoma. Although I’d never heard of it, she said it was very common and suggested we see our doctor when we fly back home. So back to our OB we went. It was annoying because every single time we would go, they would say, "Oh we just want to make sure it’s a viable pregnancy." At some point, we were like, "You guys have to stop saying that: he’s moving, he’s fine, he’s viable if he comes out... stop." I was probably twenty-week pregnant when they mentioned accreta or possible percreta. They didn’t explain anything and just kept going, like a normal pregnancy. I never googled anything. I guess I didn’t want to know, but one day I mentioned something to my sister-in-law, and she started yelling at me. She told me to find another doctor right away to get a second opinion. And that’s when I started googling. I found a doctor in Baltimore at the University of Maryland, and at twenty-eight weeks, I switched to a new practice. The doctor was very thorough with everything. We did an MRI, and when I went in to get the results, I could just tell from his face. "It’s not good is it?" I said. And it wasn’t.

The doctor was very honest but very nice. Even when the news were bad, he explained everything in detail. He told me I had percreta, and that my placenta had invaded the bladder. I was put on pelvic rest for the last four months of the pregnancy with constant bladder pain – like you have UTI. They wanted to deliver at thirty-seven week, but I only made it until thirty-four because the doctors didn't want to take any chances and decided to deliver earlier. I went in thinking that the doctor was going to do the hysterectomy and everything, but I woke up five hours later to him saying "We only delivered." I can’t remember anything before or after. It’s a big blur. My husband and my sister were in the waiting area all this time. The pediatric doctors were supposed to tell them when our son was born, but no one did, because I was in the main OR and they thought I was just having a "normal" surgery. When they finally found him, he was down to the NICU, and they were able to go see him. As for me, they rolled me into the recovery room. I remember taking the breathing tube out and seeing my family for only five minutes. When the doctor came in, he told me that it was worse than he'd expected because the placenta had attached to the pelvic walls and that they would reevaluate me in a week to decide when to go back in, to remove the placenta and my uterus. So two weeks after my son was born, they went back in. This time, I remember everything: resigning the paperwork, laying there while they transferred me to the OR, holding the OBGYN’s hand until I was out… When I woke up, the doctor was happy to tell me he had been able to save my ovaries, but he said that as soon as he cut in and got to the bladder, I lost two liters of blood in like two seconds. The body only contains five... I woke up in the ICU and got twenty units of blood during that surgery, and a total of thirty units for the whole month I was hospitalized there.

My son only spent a week in the NICU. After that, they kicked him out because they needed his room, and he wasn’t in an incubator anymore. Then he had jaundice and a little bit of breathing and feeding issues. They wanted to send him off to another hospital, but it was too far, so I said no. I’m glad I did. Then I struggled with breastfeeding. I breastfed all my kids. My youngest son before this one, I breastfed for eighteen months. But I came to find that blood trauma - or any kind of trauma - can cause milk supply issues. Pumping wasn’t working either. It was heartbreaking. He's still struggling to eat too. His premature belly doesn't take it. Also, being away from my other kids during all this time was probably the hardest thing. They couldn’t come and visit because of the flu restrictions. They eventually allowed them to go to the NICU waiting area and I was able to see them there. My older son was asking when I would come back home because he couldn’t understand, but my older daughter definitely did. She had anxiety issues at school. But they don’t know the full extent of it. It was hard for my husband too, seeing me in the ICU. But I know if I had delivered to the county hospital, I wouldn’t be here today. I processed it, but I still wake up in the middle of the night… you know. Thinking. People also don’t really understand what happened. And I have this big scar. That’s the other thing: after having three C-sections, now I have this big one that goes belly-button down. It’s a big adjustment. My older son is autistic and loves to rub my stomach, ever since I got pregnant. Now he keeps trying, but I don’t want to. I always say no because it reminds me I have this. So he says, "Oh mom, you have a boo-boo." And I say, "Yeah, mama has a big boo-boo..."

 

 Marianne, Durham NC

Marianne, Durham NC

I gave birth to my second kid four years ago. Pregnancy was normal. I had a C-section for my first baby, because of "failure to progress" – that ugly word that nobody understands. I knew a VBAC wasn’t an option, so we opted for a scheduled C-section instead. The surgery went fine, a lot easier than the first one. After she was born, we hung out together for a while. The nurses then came to take her to check her vitals or something, but when they brought her back to me, I blacked out. When I came back, it was like you see on TV: the nurses asking me what was my name, what day it was; it was a very surreal moment. They checked me, and I had passed a grapefruit-sized clot, which is about the size of your uterus after you give birth. I was still in recovery and, for a while, things got better. We were nursing, my husband cuddled with her, and my vitals were normal, so they transferred me to the postpartum floor. But when I got there, I just didn’t feel right. The first time I had blacked out, I had apparently said that it felt like I couldn’t breathe, and I repeated it that second time. It became a trigger point for me. I remember being some confusion on what to do with me. I delivered at a community hospital that didn’t have high-risk patients, so they weren’t used to things like that happening. They took me back to recovery and doctors and midwives got called in to check me. They were giving me medication because I had small clots, but nothing major. Nobody knew - because there wasn’t blood all over the floor - but during that time, I was hemorrhaging. They didn’t do an ultrasound, but they were manually massaging my uterus to get the clots out. I don’t remember that. I blocked that out. They took me in for a D&C, and I asked if I could nurse before they take me. I had a lot of troubles breastfeeding my first baby, so I was going to breastfeed this one. But when I asked the doctor, he said I should probably pump and dump because they had to give me all kind of medications... and I just lost it. I had a panic attack, and I remember him, rubbing my arm, and then walking away to prep for surgery. So, I asked to at least see her again before surgery. I just knew I needed to hold her one more time. I had this feeling that something was going on that was more than we understood. So, I did. I held her, and I did my goodbyes.

My husband and I were so nervous and scared before going into surgery. I actually don’t know how I got to the OR; I just ended up there. They took the baby to special care nursery so my husband could stay with me, and she ended up sleeping there for two days. I remember telling my husband that he was going to be okay with the girls, no matter what happens, and then seeing him walking down the hallway. He looked back at me with this wounded puppy expression on his face, sort of "I get to look at her one last time." I woke up five hours later. I was on a ventilator, and I didn’t understand why I couldn’t breathe on my own. I had gone in for a D&C, and now I was intubated with this thing forcing air into me. The lights were bright, and I felt like there were a million people around me – although my husband said there wasn’t. Nobody gave me a way to communicate, and all I remember is my husband saying that he felt so helpless. He didn’t know no one had told me that I just had a hysterectomy, so he had to break the news to me. We didn’t have a paper to write on – I don’t know why they don’t think about these things in the ICU – so I was writing with my finger on his chest. I was getting frustrated because he didn’t get it and vice versa. I was probably supposed to be sleeping, but I stayed wide awake for almost two days because I was running through everything. They eventually took the ventilator and the tubes out, and I was afraid not to be able to breathe on my own; I was afraid it was going to hurt. It was very uncomfortable, but I felt much better once it came out. I started asking questions. I never thought I’d have a hysterectomy the day after I gave birth, and I never heard about postpartum hemorrhage before. Nobody was talking about that, at least four years ago. It was a lot to process. Being in the ICU is also very weird: somebody helps you go to the bathroom, they bathe you, comb your hair and stuff. This is… I don’t know. You don’t think about those things when you go in to give birth. You just don’t.

I went home on day six. Before coming to the hospital, I had written a letter to each of my kids. I don’t know who does that, but I felt like I had to write a letter to them, "just in case." So when it almost happened, it was hard coming to terms with all of it. Everything becomes raw, and I think you’re in shock for a while. It was also hard to find resources. I didn’t think about looking on Facebook, but there were a lot of support groups out there. I finally got connected, saw some articles that other women had written. While I was supposed to nurse at night, I was on my phone searching like crazy for answers, replaying what had happened over and over again. There was a lot of rumination happening. I finally received two lovely letters from women who also had a postpartum hemorrhage hysterectomy, and it felt like I had found my people! Everything you read about that complication says that it’s very rare and it almost never happens. But it did happen, and it happened to me. So, what do I do? I think this is why I made it my mission to reach women sooner. This is such an isolating place to be, and doctors don’t really send you home with resources. They care for you in the ICU, but then you're on your own. So, I created this maternity near miss Facebook group. It was so scary to push the button to make it happen because you don’t know where it’s going to take you or if anybody is going to show up. I started to post on the group and on my own page, and people eventually gathered. Casey came along later to help me run the group. That’s what came from the experience; it turned me into an advocate. Nobody was talking about this, and "this," is a big thing. The maternal health issues we are dealing with in the United States is not good. We want to raise awareness because still today, people have no clue. It’s frustrating, but it’s why we’re here: because we want to make a change. 

 

 Audrey, New York NY

Audrey, New York NY

I had a very normal pregnancy with my first baby. I was a runner, I had done triathlons, and I had been fortunate to be healthy my entire life. We had an early miscarriage the month before but then got pregnant immediately after. I think all of that led me to take a lot of things for granted. I was eleven days overdue, but I was determined to deliver naturally. I didn't even think about induction. I had a doula and had picked a doctor who was known for not pushing C-section. I went in on a Monday for my appointment. My mom was with me, and they did the last ultrasound. They said, "We think he's going to weigh twelve pounds, three ounces. He's the biggest baby we have ever measured in this office! You have a lot of amniotic fluid, and we recommend you do a C-section." I was like... what do I know? If my doctor feels very strongly about this, I don't want to be that person arguing with the doctor. So, they scheduled the C-section for later that day. We went to lunch, and my husband and my dad came along. Right then, I started having contractions. We went back to the hospital, and they redid an ultrasound. This time my son was going to weight nine pounds something. So I thought, "Well, great! Let's try a vaginal delivery." This is the part of the story where we've always questioned whether or not we should have looked into legal ramifications. Because suddenly they went: "No no, finally, we think the machine is broken." They did hand measurements, left the room, and when they came back, the baby was now eleven pounds. I hesitated, but I was already scheduled for a C-section and knowing that ultrasounds can be off but never by more than two pounds, I thought this was a very large first baby nevertheless, I had too much fluid, so I went in for the C-section. He came out, I saw him, we cried. But when they handed him to me, I immediately started feeling sick. I asked for someone to take him away, and everything became foggy. They asked my husband to leave the room, and he started crying. That whole time I was telling him, "People don't die in childbirth! This will be fine!" I was the one reassuring him, telling him to leave, that it would be okay. And so, he left the room.

At that point, I joke that it was my own episode of Grey’s anatomy. Doctors and nurses, rushing in and out. I heard them arguing and shouting, and I have vague memories of blood on their scrubs. There was this medical student standing there and looking down in horror. One thing also bothered me: when my son was born, one nurse went "nine pounds fourteen ounces, not even the biggest baby this day!" I was like, "You put me through all of this, how dare you be that flippant about childbirth as a person who works in that position." It’s minor, but it haunts me. All the "what ifs," too: What if I had not insisted on going eleven days and had been induced earlier? What if I had pushed for the vaginal delivery? My doctor then asked, "How many kids would like to have Audrey?" and I said two or three. He went back behind the curtain and, although I’m not sure how much time passed, I think it was close to six hours. I was awake the whole time because I was on an epidural. He finally came back to me and said that they were going to have to do a hysterectomy. I remember going into this immediate, weird, acceptance. After they performed the surgery, I was wheeled out to my husband. He was holding our baby, not knowing if I was going to live or die. And then when he saw me, I said, "We’re going to have to adopt." Which is the funniest and craziest thing I could have said to him. He just answered, "Okay." I went to the ICU and, after hearing everyone’s story, I feel fortunate because I had a pretty easy recovery. I had to get one more blood transfusion because I couldn’t walk. Uterine atony. I lost five liters of blood. They said that, probably because my son was too big and I had so much fluid, my uterus wouldn’t contract. Another reason why I think about the induction a lot... Anyhow, the physical recovery was easy. The hardest thing was the mental.

Coming to term with the day of my son’s birth being the best day and the worst day of my life, and then losing my uterus, it’s difficult. We were thirty when we had our son, which in New York, is pretty young. Our friends don’t really get it; they are not there yet. The flippancy sometimes irritates me, for example, when someone will say, about menstrual cramps, that they hurt so bad... I only wish. I think my husband and I are both logical and we don’t cry a whole lot, so everyone thinks that everything’s fine. People would come to our house after the birth and be like, "You have a baby! Congratulations!" I deeply appreciated the ones who said congratulations along with "I know you had a tough time." I think this experience made me more cognizant and empathetic when dealing with any extenuating circumstances. And I am very fortunate to have found the group. I saw a therapist a couple of times, but she was not used to treating that kind of specific birth trauma. It felt very isolating. But, I found the Near Miss Survivors group, and even though I’m a lurker, it’s really helpful to hear other stories and to know other people get it. I don’t post very often, but I’m reading.

 

 Raquel, Alexandria VA

Raquel, Alexandria VA

We were newlyweds when we found out we were pregnant. She was our honeymoon baby, so it was great! The pregnancy went well and was very easy. I’m one of those people who had never been sick, never broke a bone, never been to a hospital, and the same happened during the pregnancy. They did induce me though, because I had low amniotic fluid, but it wasn’t anything serious. Things were going well but the pushing phase was very long, and I felt everything, despite the epidural. She came out 5 pounds and 15 ounces. She was beautiful. We took pictures with the nurses, and everyone was happy. They took the placenta out thirty minutes after and then, the nurses called the doctor in. You’re thinking they’re doing typical medical stuff. They started massaging my stomach - that really hurt - and mumbling to each other, but I assumed everything was fine, so I didn’t even pay attention. They asked me how I was feeling because my blood pressure was getting very low, but I felt fine. They gave me a blood transfusion, and after that, things got really foggy. They took my daughter away, gave me blood and platelets transfusions every other hour: I was hemorrhaging. There wasn’t massive blood going on, but it took a couple of hours to stabilize me. So, I thought, "Ok, I guess everything is going to be fine from now on." But it didn’t. I came in to deliver at 110 pounds and two days after she was born, I was 130. The fluid was just building up. I kept telling them that something was wrong, but they dismissed me, saying that everybody got swollen after they had a baby. I was so big I couldn’t walk. On day three, one nurse figured out I wasn’t peeing. They brought in another doctor, and he found out I had kidney failure. They took me to the ICU, and I stayed there for six days. They were talking dialysis, and maybe kidney transplant. My numbers were terrible, and I wasn’t getting any better. Then, things got weird.

The doctors came in on day six and said, "Ok Raquel, your results are very concerning on paper, but when we look at you and talk to you, you seem like you’re doing okay." I guess I put up a front, but I was uncomfortable, and I needed a nurse to go to the bathroom or to walk. Yet, they still sent me home that day. They said, "We think you are going to get better. You seem like you’re in good spirits." That’s literally what they said. Unfortunately, I don’t have the type of personality that will fight or complain. Neither does my husband. It was also my first baby, and I’d never been to a hospital. I guess that was my learning moment. So, I went home. I stayed up with the baby all night feeding her formula because nursing was out of the window with those crazy kidney medications. The next morning, I wasn’t any better. I couldn’t say more than three words without having to take a breath. It was excruciating, but I was in denial. I mean, I was in the hospital for six days, and they had let me come home. I just needed to wait it out, to be patient. I thought this was part of the process. My mom was there with us, and she eventually told me I needed to go to the hospital. So did the person from the urgent care number we called. When we got to the ER, my vitals were low, and my oxygen level was at 80%. They prep me to do some tests, but I suddenly couldn’t breathe at all. It was the most painful experience I’ve ever gone through, worse than having the baby naturally. I ripped off my gown, and again, it became one of those Grey’s Anatomy situation: doctors everywhere, people shouting. I’m holding the nurse’s hand, talking to her through my eyes, telling her to save me. I think this was THE moment. The moment when you know this is real, this is serious, that you could die.

They gave me morphine, and I was able to breathe again. The cardiologist came in and said that I had congestive heart failure. Only 30% of my heart was working, probably from the birth or the kidney failure. Probably both. I stayed at the hospital for another six days. They gave me medicine, but I didn’t see my daughter. It was really hard. You know, are a new mom, and it goes from being the most amazing moment of your life to almost dying, and then being completely handicap and disabled. I also went from being huge to be really skinny, around 90 pounds. I didn’t look like I just had a baby. It was very bizarre. I was sent home, and I remained on heart medication. My kidneys got better. And then, three months later… I found out I was pregnant again. That was not supposed to happen – at the hospital, they even told me I shouldn’t have more kids. I was really scared when I called my doctor. I thought they were going to kill me! They took me off the meds, and they urged me not to have the baby. They said it was too dangerous, that they couldn’t assure me I wouldn't have heart or kidney failure again. But I couldn’t live with that decision and went ahead with the pregnancy. After a lot of prayers, googling, and finding the Near Miss Support Group, I gathered the strength to get through those nine months. I gave birth in June. They induced me, and I had a ton of doctors. It was the best labor I could think of. They were precise, slow, and careful. In the end, it all worked out. Our second daughter came out very quickly, and I had no heart issues. I am very thankful because I know stories like mine don't always turn out so well. I now have two beautiful daughters, eleven months apart; they will be two and three this summer. It was a great ending.

 

 Vicki, Howell NJ

Vicki, Howell NJ

I have three children. One fourteen-year-old daughter, who was an emergency C-section – completely warranted – because she was very sick. For my second child, I switched practice where they could do VBACs because isn’t the thing we all want, the redemption birth? But as we got closer to the due date, my doctor asked me if I’d preferred a scheduled C-section, and I thought, "Okay: that would be easier." My son was born, he was good, healthy. But raising two young kids is really hard, so I decided to get an IUD. Five years went by, and the first month we got the IUD out, I got my period, but I couldn’t stop bleeding. I called my OB, ran some tests: turns out I was pregnant. Pregnant, but bleeding. I’ve been an ICU nurse for sixteen years, so I knew something wasn’t right. I didn’t tell my husband right away about the pregnancy. Instead, I got to work, and I asked the ultrasound technician for a scan. We saw a heartbeat. From that moment on, I knew that whatever would happen, there was a baby in there, and it was alive. I eventually told my husband and my coworkers. I was happy but worried. Then one day at work, I went to pee and filled the toilet with blood. I checked myself to the ER, and we did another scan. The report said, "Irregularly shape, low lying, unlikely to continue pregnancy." I was six weeks pregnant. I remember crying, not understanding what was going on. My OB kept monitoring me and eventually saw subchorionic hemorrhage, which led me to have to switch practice again. My new doctor was very caring, but at the fifteen-week ultrasound, I remember seeing him and the technician standing in the hallway, whispering. When he came in, he told me I had something called placenta previa - which I knew about - then added I also had accreta. Right away, he offered termination. He told me the risk was death, then said, "We’re going to prepare for hysterectomy. This is the plan. You’ll need massive blood transfusions." I was shocked. This was real. I could die. But I refused to terminate.

I called a nurse-friend who had postpartum hemorrhage and knew the fear, but I didn’t tell anyone else. It was summer, and I was trying to get everything in order for my kids’ school year. Meanwhile, I was dying inside out of fear, but I didn’t feel I could tell anybody. Around the 21-week mark, I got a cold. After two days of intense coughing, I went to the bathroom, and a clot fell onto the ground. My OB was aware of the coughing so when I called, I was told to go straight to the hospital, where they admitted me. This was when they announced me that the accreta had become percreta. I’d stopped bleeding, but my doctor didn’t want to take the chance to send me home. I stayed at the hospital for 86 days before I had my daughter. That was really hard. I had never been away from my kids, and we had to adjust our lives. With my doctors, we had multiple plans. They were all very professional, but nobody ever really asked me how I was feeling. I was the easy patient. I wasn’t pre-term or preeclampsia, I was just a ticking time bomb, waiting to bleed out. During that time, Hurricane Sandy also happened. It was crazy, but we somehow made it to the morning of the surgery, as planned. My husband and my dad came in. I don’t think I really said anything. How do you say goodbye? I was rolled to the main OR. Being in the medical field myself, I knew I was in the fight of my life. They started at 11am, and I woke up intubated at 6pm, in the ICU. My brother and my dad came in and handed me my phone. I was able to communicate with them: they said I had a baby girl. I didn’t want sedation, and I also asked them not to tie my hands, but that night was pure torture. By morning, they extubated me, and my husband, then my kids, came in. I also met Molly, my newborn baby. I stayed in the ICU for 18 hours then was transferred to postpartum. The first night there was one of the hardest nights of my life: I was crying because I was in so much pain. I was swollen and couldn’t turn myself in bed. I should have asked someone to stay with me, but as we all know by now, I’m not very good at telling anybody anything. I was miserable, and I had nobody there to help me.

After that, it got better. I mean, you suck it up. You’re a mom, and baby’s in the NICU. I went to see her every day after I was able to go home. I drove up because I had no other choice: I had to see my baby. Then she also came home, and I tried to readjust to life and to process what just had happened. I'd left my house 92 days ago in flip flops and came back when there was snow on the ground. A hurricane occurred while I was gone and the whole neighborhood didn't even look the same! I remember my husband asking me why I just couldn’t get over it and I pulled my shirt up; that incision from my sternum to my pubic bone, I saw it every day. It was – is – a constant reminder of what I went through. I think after that I just retreated into my head. I never thought to search on Facebook or to look for anybody else who might have gone through something similar. Then, almost eighteen months after my daughter was born, I gave a speech at my work for the NICU lactation. Someone from the ACOG saw me and contacted me to come down to DC to speak on Congress, on Capitol Hill, about maternal mortality. Suddenly, there was a more significant purpose to my life. So, I drove to DC, and for the first time, I told my story in a public forum. Right at that time, I also found Hope for Accreta. There is a lot of tears and a lot of laughter when you find your people, people who know what it’s like to beat death, to feel so alone, and to come out the other end… changed. I try to make something positive come out of it, but I still struggle, five years and a half out. I have a great therapist who helps me reprogram my nervous system. I have PTSD, but we survive for a reason, right? That’s why when I was asked, two months ago, to speak at the UN, I couldn’t say no. Women die. The long-term battle against maternal mortality and morbidity is real. I still have my own struggles, but it’s something I have to do.

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