This story details a traumatic emergency-section and neonatal distress. You might not feel ready to read something like this if you’ve recently experienced anything similar. You also might not feel comfortable reading something like this if you are currently pregnant and are sensitive to stories about traumatic births. Also included in this story are references to ovarian cancer as well as down syndrome, in case those are topics you try to avoid. Lastly, there are some things in here that are just plain unnerving and/or gross.
You know, I wasn’t going to write this story – this story about giving birth to Ever. Even just writing those words strung together – “giving birth to Ever” – makes my heart pound. Because there are some people out there (toxic, but vocal, people ) who don’t think that moms like me can accurately use that term. They’re wrong, of course, but it’s not as easy to shrug off as it might seem. Giving birth is the thing that most moms feel cemented them into motherhood. When someone tries to invalidate that experience for someone else, it’s cruel. We know it’s cruel, but there’s more to it than that: a lot of c-section moms, like myself, had to endure a great deal of trauma. Beyond the cruelty in this crazy idea that c-sections are an inferior way to give birth is damage. It’s not that hard to inflict pain on a person with an open wound (in all senses) and while only cowards would do that intentionally, there are plenty of cowards in this world. I envy those of you who haven’t had to deal with this kind of opinion personally, but I’ve had some pretty bad things said to my face about it more than once.
The stigma of c-sections hasn’t stopped me from talking about my experience. In fact, when I announced Ever’s birth to my Facebook friends, a full six days after Ben had posted a status suggestive of me being in labor, I announced her birth alongside some details on how she was born and what made it all so difficult, including pregnancy. I’d been keeping a part of my pregnancy story off of the Internet, including my private Facebook, for the entire duration of pregnancy. That thing I kept quiet wound up greatly impacting my labor, as I feared it might. So let’s back up a bit.
When I found out I was pregnant, it was a surprise. I don’t know why that’s such a taboo thing to admit – it’s not like planned babies are more loved than unplanned ones. They’re just expected, that’s all. But being pregnant unexpectedly can be disorienting. I didn’t have anything in my life prepared for motherhood, from my apartment to my mindset to my lifestyle. I was living in a 600 square foot apartment in Brooklyn and of course we probably could have found a way to stay there while parenting (though I still haven’t worked out how we could have swung it financially, short of suddenly becoming very wealthy people – please tell me if you know of a way to do that), but I didn’t have any desire to parent in New York City the way we’d have to do it. We started toying around with the idea of moving elsewhere as soon as we found out a baby was coming. During that first month or so of knowing I was pregnant, these were the only really big stressors. I didn’t have health insurance, but I knew that the ACA would come into effect in just a couple of months and I figured we could make it work. I wasn’t abnormally anxious about labor – my mom had unmedicated vaginal births with midwives and I guess I kind of just assumed I’d probably do something similar.
We were visiting my parents in West Virginia for Thanksgiving when I was 10 weeks pregnant. We made plans to go see The Hunger Games with the rest of my family as soon as they got back from running errands. I had no idea how much my life was going to change between the time that I made those plans with them that morning and the time that movie started a few hours later.
I woke up, had breakfast and coffee, and took a shower. All was well until I walked to my room after the shower to get dressed. I fell to the ground from an abdominal pain I can only now describe as being on par with (and some people describe it as worse than) labor pain. It’s difficult to accurately convey what severe pain feels like. The best I could do at the time was to tell Ben that it felt like I was being sliced open with a knife from the inside out. Without health insurance to rely on for an expensive ER visit, I kept attempting to think of non-serious reasons for the pain. Maybe it was just a case of debilitatingly hellish pregnancy gas? For hours – nine or so, I believe – I could barely walk. I’d fall down within minutes when I tried. I vomited. I writhed on the floor.
When I did finally go to the ER that night, I was still wearing the bathrobe I’d had on when the pain first started. My hair was so matted from rolling around and screaming on the floor all day that I eventually had to cut some of it to be able to brush it again. They rushed me in past everyone else and within an hour or so, after one especially unpleasant transvaginal ultrasound (those are super fun), the source of the problem was diagnosed: I had a massive ovarian tumor.
The tumor was twisting my left ovary and I was experiencing an ovarian torsion. Normally, under these circumstances – with such a big tumor that wasn’t exactly simple, so no one could tell for sure if it was malignant or not – I would have been rushed into an operating room right then and there for an emergency surgery. But seeing as how I was 10 weeks pregnant, that would likely result in miscarriage, so we waited to see what happened. I was admitted so that the situation could be observed. Luckily, my ovary did stop twisting that night. Had that not been the case, we would have had to operate anyway, regardless of the risk to the baby.
The team I had there was excellent. The parting information from them that I took with me back to Brooklyn was basically this:
- It probably isn’t ovarian cancer but we really can’t say for sure without a biopsy.
- We can’t conduct a biopsy on a mostly fluid-filled tumor like this without removing it fully first. If we were to puncture it laparoscopically for the sake of a biopsy, we’d release all of that possibly-malignant fluid and cells all over the abdominal cavity. Which is not a good thing.
- Should you choose to operate during pregnancy – and we think you should consider it – there are only a few weeks during your second trimester that would be the safest to do this. The chance of miscarriage then will be the lowest, but still around 1/100. It will have to be a large incision, which could be prevented from healing properly as your belly expands or even rupture during labor.
- Don’t move much until late in the second trimester or the beginning of the third trimester, when the baby is big enough to probably block the tumor from freely moving. Excessive movement before then could cause the tumor to start twisting the ovary again and you might not be lucky enough to dodge emergency surgery next time.
- We can’t say for sure one way or the other that you’ll be able to successfully deliver vaginally, but it’s probably ok to try. If you do deliver vaginally, you won’t be able to have surgery to remove the tumor until at least four weeks later because surgery so soon after a vaginal delivery would be dangerous. If this is what takes place, you won’t be able to move much during the time between giving birth and having the surgery – the risk of another torsion, or even worse, in the aftermath of birth will be too high. If you decide to plan a c-section, the tumor can be removed right after the baby. In either case, you should be able to know within a week or two of removal if you have ovarian cancer or not.
If you don’t know much about ovarian cancer, here’s one big thing to know: it’s one of the deadliest cancers out there. I spent my entire pregnancy not knowing for sure that I would live to even raise the baby I was growing in my belly.
I did go to a midwife for care once we returned. As soon as she saw my records, she gently apologized to me and told me that I was not an appropriate candidate for a midwife-supervised pregnancy. I went to an OBGYN at a hospital that I was able to go to through an art-for-healthcare exchange program. She told me she didn’t feel equipped to handle my pregnancy with the tumor in the mix and referred me to specialists. I couldn’t afford specialists out-of-pocket, so I basically sat still and waited for January 1st to come so I could sign up for health insurance through the ACA. When that time came, getting health insurance that would cover us both with my condition factored in and also provide enough coverage for an emergency surgery, should that take place, was $1400 a month. It felt like we were being hit with one grenade after another.
Now I’m going to skip over a lot here because this is already getting long, but here are some things that happened between that torsion and giving birth at 41+3 days:
- We received a false positive for Down Syndrome from a genetic test. Turns out there are some genetic tests that are more likely to provide false positive Down Syndrome results for vegetarian/vegan women, so please keep this in mind in case it ever applies to you. We spent five days unsure of if Ever would have DS or not and it was a really scary thing to have in the mix amid all else. We cried happy tears, of course, when we found out that she didn’t have DS via an amnio.
- We moved to Ben’s hometown in the Upper Peninsula of Michigan. We were suddenly not only not in New York City anymore, but eight hours from the nearest real city. It was a jarring, bitterly cold, and truly difficult move in many ways. We lived with Ben’s parents for the first three months while waiting for one of the houses they rent out to be open for us. Then we moved again, this time into that house, which we wound up renting from them for the next two and a half years. *Note: we never thought we’d be there for nearly three years total. I thought we might move as quickly as a few months or at most a year after Ever’s birth, but that became implausible for us for multiple reasons.*
- My doctors at this new hospital in Michigan didn’t feel the need to check on the tumor more than once via ultrasound. This will forever mystify me in hindsight. My doctors also didn’t seem to care or worry about my baby being in posterior position. Still, I went home after I found out that she was in that position and, of course, checked out Spinning Babies. Guess what? You can’t always spin your baby. Especially not if there’s a tumor nearly the size of a soccer ball in there, too.
When I did eventually go into labor, 10 days after my due date, the contractions were intense with only two minutes or so in between as soon as they began. It was 2am on July 5th and I’d only been asleep for two hours. I think Ben had only had a few minutes of sleep. I called my doula and we met her at the hospital. Things were actually pretty smooth despite her being in posterior position until around 7/8cm.
That was when things began to downward spiral and although I can never prove it, it felt like there was torsion pain intermittently in addition to labor pain.
I’m not going to get into every little decision that was made, because for me, one of the most painful things about my postpartum experience was dissecting every single action or inaction that took place and trying to figure out a way to blame myself. Or someone else. Anything to explain how things could go so tragically wrong. But what I’ve come to understand more recently is that some people really just aren’t as lucky as others and that’s sort of a fundamental bottom line here. Luck: you know, the part that The Business of Being Born and Ina May and the like tend to gloss over or even leave out completely.
If you haven’t realized this already, I’ll just state it here plainly: I was dealt an incredibly unlucky hand.
Here’s the thing about emergencies of every kind, whether we’re talking about a car accident or a labor that might kill the baby and/or mother: you are truly in survival mode. You don’t think about mood lighting or yoga ball birthing positions when you’re in a true emergency. You default to a core id version of yourself and you just try to survive. For all of the mamas out there who get to spend their entire labors thinking about these kinds of things while simultaneously casting judgment on women who had to make hard decisions in an emergency, all I can say is … bless your hearts. But also: STOP. You (apparently) have no idea how lucky you got.
As to the actions that were taken, I will say this: I did get an epidural just in the nick of time and it absolutely did not completely abolish the pain. In fact, I could still move my legs a good bit. Did you know that redheads have a genetic mutation that not only causes them to actually feel more pain but it also is to thank for epidurals being less effective for them? I’m not a true redhead (any hair color that’s ever looked like it has been dye), but there are tons of redheads in my family on both sides. Yet another reason why moms who judge other moms’ births are so insufferable: their births might have very literally been less painful than another mom’s birth.
Ever’s head became palpable eventually, but it wouldn’t budge. She was in distress. In photos from the tail end of my labor, my lips are blue. I experienced what many people refer to as the “ring of fire” for 45 minutes while Ever was stuck there – the epidural was taken out while the OR was being prepped for an emergency c-section (everyone was rushing, but staffing works differently in an incredibly remote place, so we had to wait for some members of the surgical team who were on call to rush to the hospital to assist). I was on the cold operating table naked, except for a tube top I was still wearing for whatever reason, and I was wailing. Ben and the doula had to stay outside of the OR and just listen to me scream throughout this. I remember grabbing a nurse and begging her to do something, anything at all. Nothing she could do could take me out of my agony, but I do remember the comfort of her eyes looking down at me and her soothing touch as she redid my hair for me and wiped my tears away.
They told me not to push anymore, but I couldn’t help it – my body was just physically pushing her even though I wasn’t making a decision to push. And yet the more my body pushed her out, the more stuck she seemed to get. I thought I was going to die right there on that table and based on the urgent worried faces of the crowd of people in the room, I don’t think I was the only one. Let’s remember: not only was there a very large tumor likely obstructing Ever’s path, which could yield any number of horrible results, but none of us knew for sure that the tumor wasn’t malignant and if it were to burst, as ovarian cysts and tumors are known to, it could have been, well … bad. It had been 21 hours total with five hours of pushing.
My angel, as so many moms who have experienced similarly traumatic births will also tell you, was the anesthesiologist. Since I’d already had an epidural inserted earlier, I didn’t have to have general anesthesia. As they set up the curtain meant to prevent me from seeing all of my own guts all over the table, he held my cheeks steady and counted down from five to let me know that relief was coming. When it came, it washed over me – a wave of bliss that, for all I knew, was going to be one of my last sensations, but at least it was the opposite of the torture I’d been experiencing. My heart rate slowed. My oxygen levels were restored. It’s all so fuzzy in so many ways, but that anesthesiologist was and still is my hero.
I later learned that on the other side of the curtain, Ever was so stuck that they couldn’t pull her straight out from my belly incision. She actually had to be pushed back into my uterus with a surgeon’s hand through my vagina in order to be removed. Horrifying, I know. When she finally came out, I was able to meet her briefly (the OBGYN brought her to my face and all I could do was give her kisses) before they whisked her away to deal with something they knew but hadn’t yet told me: she was not doing well.
I never found out what her APGAR score was (guess how much things like that matter when you don’t know if your newborn will survive or not), but I assume it was low. I could hear her screaming from the nursery while I was still in the OR. And here’s something I feel a great deal of shame over: when they asked me who I wanted to stay with me while they proceeded to remove the tumor, I said Ben. I said Ben because I really felt like and thought that those would be my last moments with him. I should have instructed him to go be with our baby, but I was terrified.
When the surgeons got a look at the tumor, they couldn’t help but discuss it audibly. They even placed bets with each other on how much it would weigh. This might seem inappropriate or odd, but honestly, I welcomed the comic relief. They put the mass in a bowl and weighed it: three pounds. They even showed it to me. There was actually a moment of laughter or two in there.
However, it was soon clear that Ever, down the hall, was experiencing respiratory distress and when Ben went to her to hold her hand, her heart rate would slow down. When he let go, it would speed up. It kills me that I couldn’t be there for her during this time.
I was taken to a room to recover from the surgery. I felt like I was being checked on and tested every few minutes, all while having to hear my baby scream down the hall. I kept asking for updates and every update was worse until finally someone came in to tell me that an ambulance from a NICU two hours away, staffed with people from the NICU, was already on its way to pick her up and transport her. I felt like I was living in a nightmare – something that was so objectively horrible but couldn’t possibly be real. I insisted that they take me to be with my baby before she had to go. I was told I couldn’t be moved because of my condition. I told them they had to find a way. I can’t remember how many people it took to carefully shuffle my limp body from the bed to a wheelchair with an IV still attached, but eventually I was wheeled into the nursery where I saw her laying, wearing tubes and strange things that don’t look like they belong on a newborn.
I held her tiny hand, which was the only thing I could do since she couldn’t be moved closer and neither could I. I looked at her in her eyes and I started telling her, repeatedly, how strong she was. I told her that this was all really unfortunate but that we were going to get through it somehow. I told her that I knew she was going to be tough. I told her I knew she could do it. I told her she was beautiful.
But the only one of those things that I actually did know was that she was beautiful. Everything else was a hope I was projecting onto her.
When the ambulance arrived, a NICU nurse that was on board came to talk to us about what was going to happen. Everything was spinning for me.
“Water in her lungs,” I heard.
“Let’s just see how the rest of the morning goes.”
“Do we have your permission to give her pain medication? She’s shaking and we can’t risk her hyperventilating with water in her lungs.”
It was nearly dawn by the time she left. Ben went outside not too long after the ambulance took off and snapped a photo. It was of a rainbow. We clung to it as a symbol of hope.
By the grace of technology, we were able to see her in the NICU via video chat the next day. We received more bad news: there were two air pockets in her lungs. If the air remained trapped there, her lungs could collapse.
“And oh, by the way, she’s getting hungry and your colostrum hasn’t arrived yet – can we feed her formula?” (WHAT KIND OF QUESTION IS THAT?! Of course you need to feed my hungry newborn! We are not going to add starvation to the list of things going wrong right now.)
The head NICU doctor decided to wait and watch the air pockets for another 48 hours. In that time, I remained at the hospital, unable to sleep or even tolerate food. I insisted that I be discharged early. I needed to go be with my baby. The team I worked with agreed and even made arrangements for us for where to stay since there wasn’t room at the hospital for us. I was discharged in a wheelchair around 41 hours after experiencing not only 21 hours of labor followed by an emergency c-section, but an oophorectomy and tumor removal, as well. That’s not really supposed to happen, by the way, but I couldn’t stay there while Ever was struggling two hours away. It took about an hour to pack up, head back home to quickly pack a suitcase (because no one could tell us how long Ever would be in the NICU, therefore, we had no idea how long we’d be stationed two hours away from home). We sped to that town – Marquette – and for once in my life, I didn’t nag Ben about how many miles per hour he was driving.
By the time I saw her in the NICU, she’d already been out of my body for 44 hours. I remember being taken aback by her strong and calm demeanor. Babies were screaming all around her and she was just looking around with her big eyes with what I can only describe as an air of self-assuredness. Which seems like a crazy way to describe a newborn, I know. We’d been on the fence about which name to pick for her for a while, but Ever was our favorite. In old English, it means strong. In Hebrew, it means beyond. The image of her in the NICU that first time we saw her there really tipped the scales in favor of Ever: beyond strong.
I soon held her in my arms and got to experience a version of that moment all mamas want to have immediately after they give birth. She slept on my chest and I finally fell asleep for the first time three days. She was covered in tubes and my feet and ankles were rapidly swelling. I could only get around with a wheelchair and I absolutely could not get her to latch, no matter how many different people I consulted for help.
But here’s where it starts to get a little better:
Her air pockets resolved on their own, so she didn’t need to have surgery to address them. They were able to take her off of the oxygen and allow her to breathe on her own. She eventually didn’t need to be under the warming lamp anymore. We were told daily that she strong. On her sixth day in the NICU, her feeding tubes were removed and she latched immediately. I was overjoyed. Finally, something I wanted to work out was working out.
I received a call telling me that the tumor was benign. The exact kind of tumor it turned out to be carried a 20% chance of being malignant. Not only that, but this kind of tumor can become malignant even if it’s benign at first. I was stunned. The torsion was likely triggered by my pregnancy, I had been told, so I couldn’t help but wonder … what would have happened if I hadn’t discovered that tumor when I did? We took Ever home on the seventh day of her NICU stay.
Sometimes I tell her that I think she might have saved my life.
In the aftermath of my birth experience, I could not acknowledge that I’d been through trauma. I tend to detach and numb out in times of crisis and all I could do was tell myself and others – while probably looking like a deer in headlights – that she was alive. That I was alive. I treated “traumatic birth” like a term that is reserved for labors that involve neonatal or maternal death exclusively.
But I couldn’t argue with the nightmares. Every single night almost, I was plagued with terror. The inherent lack of sleep that comes with parenting a newborn wasn’t helping. The flashbacks were even worse – I would go out of my way to not so much as drive on the same road as the hospital. I eventually transferred all of my medical care elsewhere to avoid the hospital as much as I could. My sister-in-law visited and came into my room to ask me if I was ok one day and I broke down sobbing. I didn’t just feel like my body wasn’t my own, I felt like my mind wasn’t, either. I couldn’t grasp what I’d gone through and I didn’t recognize myself or my behaviors. I could keep it together sometimes – even enjoy time with Ever and friends and family. But other times I’d be overcome with a rage I couldn’t explain or crippling fear. I couldn’t bear to hear an ambulance, see an operating room depicted on tv, or read anything about ovarian cancer. It was a dark time for me and I eventually came to understand my trauma and call those symptoms what I’m now certain they were and are when they still occasionally arise: PTSD.
This has been an incredibly difficult few hours of writing for me. I’ve stopped to cry more than once. It’s been four years in July and so much of it still stings. I felt prompted to write this due to April having been C-section Awareness Month and the first week of May being Maternal Mental Health Week, but mostly I wanted to speak to fellow traumatic c-section birth mamas.
- You gave birth. Say it with me: “I gave birth.” Say that phrase or some version of it as many times as you can. Take it back. Let it empower you.
- You are strong. You’ve been through hell and back. Don’t let anyone make you feel weak.
- You don’t have to cover up your pain. You don’t have to tell yourself that a healthy baby is all that matters. Sure, death is indeed the very worst thing that can take place during a labor, but plenty of other terrible things can happen, too. Please look your pain in the face or else you’ll never shed it.
- Talk about it. Whenever you’re ready, to whomever you wish, online or off, talk about what you went through. This has absolutely been the most healing thing for me. I talk to friends and strangers alike about my birth and while it’s never ever been easy, I do feel a bit healed from it every time.
- Ask for help. Ask for help with everything if you’re in the aftermath of a traumatic experience like this. Ask for help around the house, help standing up, help showering, help with the baby. More importantly, ask for help for your own emotional and mental stability. I didn’t. I thought I could just trudge through and convince myself that I should just feel lucky to have an alive baby. Especially after being around all of those babies that were fighting for their lives alongside Ever in the NICU – and their parents – I felt selfish for focusing on my pain when she was right there in my arms. Alive. But I was wrong. I collapsed on myself, especially in the year after Ever was born. I melted down, broke down, flipped out, screamed, cried, hallucinated, and physically shook. I needed help so badly and yet I didn’t ask for it. I didn’t even go to therapy.
- Don’t blame yourself. Sure, we can obsess over studies that can link any one thing to any one not-ideal outcome in labor. We can question everything – I spend a lot of time questioning why I didn’t just schedule a c-section, for instance. But we were doing the best we could with the information we had at the time. And, let’s not forget: luck is a factor here. Some of the mantras common in the unmedicated vaginal birth scene can sting if you hear them from the other side. “Your body was meant for this!” is one that I now find especially cringeworthy. We have to try our hardest to dismiss these kinds of remarks – these women got lucky. Their hearts are often in the right place, they just don’t know any better or different because of their own luck.
- Know that you might not ever completely heal. I have made a lot of progress in my healing over these last nearly four years. I’m a much more functional person now. I can contextualize what I experienced much better now. But things can happen in life that people cannot 100% bounce back from. A traumatic c-section birth might be one of them for you. I’m coming around to accepting that and even thinking it’s alright. How could I ever possibly return to the exact way I was before this happened to me? This was pivotal and pivotal things change your direction a bit. They also change your perspective. And no, these aren’t always good changes. But that’s the reality of it.
- Honor yourself. Find a community that will honor you and your experience. Patchwork it together. Get rid of people that say things to undermine what you went through. Most importantly: make it a priority to honor yourself. Give yourself the compassion you would so quickly offer to someone else. You do deserve it.
- Know that you’re not alone. There are a lot of us.
At this point, I don’t know what else to say. I’m over 5,000 words and I’ve edited out quite a lot. But here it is, world. This is my birth story. It forever altered who I am. I wrote this to belatedly throw my story into the ether for C-Section Awareness Month and to offer my solidarity also on the last day of Maternal Mental Health Week. I also wrote this for myself: I figure if talking to people in real life has helped me heal so much, perhaps working through it all enough to put it into words will also help. And I do already feel a notch better. Here’s to hoping that you’ve gotten something out of this too if you’ve made it this far. However birth happens, it’s real and raw. And for the record, I think a lot of this can apply to myriad forms of trauma, far beyond birth stories. Solidarity.