So Many Things Can Go Wrong

The anxiety minefield of pregnancy made worse

Adrienne-Elodie-Clemence Ball-Demont (1886-1935), Public domain, via Wikimedia Commons

This will be my last pregnancy. I find the thought comforting, after years of worrying that I would get pregnant, followed by a few years of worrying that I would not. After this child is born, I will close that chapter in my body, at last imposing certainty on something cruelly indifferent and uncertain.

Pregnancy is a slog, but it’s one of the coolest, strangest things a body can do. I was hoping that I could enjoy this one as it passed, knowing I’d never do it again. An unpleasant but fascinating ordeal, like a Safdi brothers project that lasts nine months. 

But there’s always something to worry about. In the US, most doctors won’t see patients until at least 8 weeks along– about 5 weeks after the most sensitive tests can possibly detect the presence of a pregnancy. 

When my Baby Era kicked off a few years ago, I expected to call my doctor’s office with news of a positive pregnancy test and have them tell me to come in right away, but they simply told me to take my prenatals and drink plenty of water, and they’d see me in a month. There’s nothing to see when it’s just a clump of cells, and nothing to do if there’s something wrong. Outside of mothers and hopeful mothers talking to each other, people don’t really talk about how anxiety inducing that month can be. So many things can go wrong. Miscarriages are common– bleeding miscarriages, silent miscarriages, embryos that attach but will never grow a baby, ectopic pregnancies that cannot survive– and there’s no way to know what’s happening inside one’s own body. 

This time, I was prepared for the medical opacity of early pregnancy because I’d experienced it before, but that didn’t dull my old anxieties. New ones joined them— my age, the nagging worry that if this one was my last chance.

Rather than hoping that the anxiety would go away, I thought of the slog of pregnancy anxiety in chapters. First, the Early Miscarriage Anxiety chapter, which ends when it’s time to take the NIPT test (a screening test that flags major abnormalities and can identify the chromosomal sex of the fetus). Then we begin the Chromosomal Abnormality Anxiety chapter, and once that’s past, it’s the Structural Defect Discovered During the Anatomy Scan Chapter. After a clear anatomy scan, we’d begin the Do I Have Gestational Diabetes? chapter, then the Is The Baby Moving Enough chapter, followed by the Is This Baby Growing Properly chapter, followed by Is This Baby Positioned Correctly For Birth, with smaller, optional chapters in there like Is My Blood Pressure Going Up Because I’m Stressed Or Do I Have Preeclampsia? and Am I In Labor? anxiety and Oh God, I Have To Give Birth anxiety. That’s if everything goes well. 

At a scan at 11 weeks, a doctor told me that my baby’s gut had not yet moved from the area directly outside of her abdomen where it first develops to the inside of her abdomen where it ends up, which is not necessarily a bad sign but also could be a bad sign, and that I’d have to come in again in a few weeks for another scan.

I spent those weeks reading every available reddit thread and recent peer-reviewed study I could find on gastroschisis, a word I told myself I wouldn’t learn to pronounce unless my baby actually had it. Once I exhausted all those avenues, I started reading about omphaloceles, another gut issue involving organs growing on the outside that is harder for babies to survive. Both conditions require immediate intervention after birth. I looked up photos of babies who had been born with the conditions. I dreamed about the photos. I convinced myself that I probably wasn’t carrying a baby that had it. I convinced myself that I probably was. 

At the follow-up scan, everything had moved back into her body. She was fine. 

The anatomy scan went well, but the doctor asked to see me 6-8 weeks later to track the baby’s growth. At that scan, the doctor– the same doctor– started her explanation of the results by saying “I’m sorry, I know you’ve already had enough drama in your pregnancy, but.” 

The “but” was that there was fluid in the baby’s right chest cavity. The doctor explained that fetal pleural effusion was a blanket term for a symptom that could have any number of causes, and the next thing we’d have to do is eliminate what all of those causes were. Infections. Lung development issues. Heart development issues. Something else. Something that might make the fluid retention worse. Something that might require her chest to be drained before she was even born. Something that may not be survivable. 

I was alone for this scan. I hadn’t even asked my husband to come with me. I thought it would be one of those in-and-out deals, where I wait for half an hour in a waiting room and am seen for a total of fifteen minutes before being sent on my merry way. 

My ears buzzed. Before I knew it, an impatient nurse was arguing with me about how to draw my blood for a test for 500 different genetic diseases. The doctor called my husband and put him on speakerphone and explained what was going on. Everything was quiet and loud. Somebody explained all of the appointments that came next. An MRI. A surgical consult. A visit with a high-level maternal-fetal-medicine specialist at Children’s Hospital, a fetal electrocardiogram. 

Somebody would call me to set this all up, they said. 

We had planned on going on a trip to northern California the following week. Our dog loves it up there. Our toddler loves it up there. We always stay in the same little cabin in the same little coastal town, owned by an old guy named Ron, who recently lost his wife. Cancel the trip, the doctor said. I canceled it. 

A woman called from the Maternal Fetal Medicine specialist’s office a couple of days later. I was at lunch with my friend and coworker Shaniqua, who was in town from DC. On the phone call, which I took on a Hollywood sidewalk outside of a bakery, the nurse from the MFM office said she’d be my concierge on this next step of figuring out what was going on with me and “my baby.” I winced at the word “baby.” 

The lady from the office sounded nice, cheerful but appropriately respectful. She must make calls like this almost every day. She asked if we’d consider termination, if we found that the underlying cause of the fluid was not compatible with life. Without thinking, I said no. 

She sounded apologetic. “There’s no reason to think you’d need to at this point. But I have to ask.” 

After I got off the phone with her, I second guessed my answer. I didn’t even know how to bring it up with my husband. How do you answer a question like that? I’d passed all these anxiety milestones I’d mentally budgeted for, but not this. Not knowing what else to do, I went back inside and finished my lunch. 

I thought about it constantly. I kept going to work. I kept taking care of my two-year-old. Even though I didn’t cry about it much in front of her, she’d notice that I was sad and ask about why. I hoped I wasn’t damaging her. I told some friends and coworkers what was going on. I didn’t want to tell most of my family, because I didn’t want to worry them. 

The parade of appointments started the following week. First there was a long appointment I spent lying on my back trying to make chirpy small talk with the fetal cardiologist so that I wouldn’t lose my shit. She saw something odd with the heart. Nothing definitively catastrophic, but they couldn’t rule a couple of things out. They wanted to see me in four weeks, when the heart was bigger, for another EKG. 

The MFM looks like an actor who would play a trusted small-town doctor on The Waltons. He peers over his glasses. He wears a white coat. It seems wrong that he does not carry a black valise.

He saw fluid in the lungs and a possible underdeveloped lobe. There was nothing definitive, but if an underdeveloped lung was the problem, that was fixable. Usually. He explained how neonatal lung surgery worked in a way that sounded so confident and relaxed. Doctors can just go in there with a little tube and take part of a lung out! Sometimes people are born with congenital lung issues and they never know and they live normal lives! So easy! 

When I tried to re-explain it to my husband in the same chipper tone, his face gave away how bad a job I was doing at minimizing the concept of surgery for a baby. “But it’s easy for the doctors at Children’s,” I offered. “They do it all the time.” 

The infection panel came back negative for everything, including the cat-born illness toxoplasmosis, which surprised me because I’ve had cats my whole life and was positive that one of those assholes would have infected me along the way. 

The MRI technician gave me a quick tour of the machine, including the panic button. I asked him if it was true that if a person was too large for the machine that they had to get an MRI at the zoo. He said, his eyes incredibly serious, that yes, they did have to send patients to the zoo sometimes.

I tried to picture a zoo MRI machine as the mechanical snaps and clicks filled the otherwise silent hour in a beige tube. When I got bored of thinking about that, I came up with a few beats in the a plot of a legal thriller, because I’d just re-watched Michael Clayton and was sad that more movies like it don’t exist. I never wrote my ideas down, but trust me, whatever I came up with in the MRI machine was not as good as Michael Clayton. 

I was now being seen by four different doctors. One of the doctors was for my body and the other three were focused entirely on the baby, who was still growing and kicking, with absolutely no idea that facilitating solving the mystery of what was wrong with her had become a part time job for me. 

I had so many appointments during the day that I had to devote nights to work. This was tricky because pregnancy is tiring on its own, and before the 10 pm news most nights I’d run out of steam. It was hard to muster excitement over writing a script full of mean things about US Representative Marjorie Taylor Greene when all I wanted to do was be horizontal. My bright, emotional (cute, but high-maintenance) two-year-old, years from developing a sense of empathy, was entering a phase where our bedtime routine would last hours, and we were lucky to have her down by 9. 

At my next appointment, I was able to gather from my OB-GYN that the doctors who had looked at my MRI had found something concerning, but that she didn’t understand enough about the situation to explain it to me in detail. I tried to read the report myself, but it was written with an opacity that only a radiologist communicating with other doctors can muster. I gave up. 

I started having dizzy spells. I’d feel dizzy when I stood for too long. I’d get dizzy if I laid down the wrong way. My doctor said that it might have been stress, or the touch of anemia I’d developed. This baby really was just taking everything.

There was another EKG, to follow up on the MRI. The doctor explained that the radiologist had seen evidence of TAPVR- Total Anomalous Pulmonary Venal Return. Which meant that every vein bringing blood back to the baby’s tiny heart heart was somehow attached to the wrong place, which wasn’t a thing I even knew was possible. Flat on my back on the exam table with several NO CELL PHONES signs in clear view, I couldn’t surreptitiously grab my phone to consult Dr. Google about what that meant beyond trying to translate the veiled concern in the cardiologist’s voice. The doctor spent an hour looking at the heart, huge and beating on the screen, but inside of the body inside of my body, the size of a small strawberry. 

“The radiologist saw TAPVR, but I see where all the veins connect in the right place,” she said, frowning. “Which is good news!” 

Then she left the room. I looked up TAPVR, read the words “critical” and “80% survival rate” and “immediate open heart surgery” and “3-4 follow ups” and “extended NICU stay” and put my phone down. 

When the doctor came back, she was with the head of fetal cardiology, who explained that it wasn’t TAPVR, but that they thought it might be something else. She pointed out a little bright white membrane in the heart that wasn’t normally there. I made her repeat that she had ruled out TAPVR a few times, because I needed the good news.  Asked her how sure she was. 

“I have all the respect in the world for radiologists,” she said. “But we are cardiologists and this is all we look at all day. And I don’t see what the radiologist saw.” 

What they saw was a membrane that wasn’t supposed to be there, that may be blocking blood flow back into the heart, but because baby hearts work differently in utero than they do after they’re born, they didn’t know for sure. They scheduled me for an “oxygenation trial,” where I’d be given a lot of oxygen and they’d take another look at the flow of blood through the baby’s heart. There was a possibility that they’d need to perform open-heart surgery on the baby during her first few days of life, and that they’d definitely need to do an ultrasound on the heart after birth. “But don’t worry,” the cardiologist explained, “the neonatal heart surgeons love doing the kind of simple surgery where they just have to go in there and take out a membrane. One and done!” 

It didn’t sound simple, but I’m not a cardiologist. I’m not even a radiologist.

The MFM looked at the lungs again. The fluid was gone. He told me my case had stumped the team of doctors who had been looking at it. 

I was well into my third trimester at this point– obviously pregnant, easily out of breath. Well-meaning well-wishers would ask me when I was due and if I knew what I was having, and how I was feeling. It hurt to think about it, hurt to answer. They couldn’t have known. 

At this point, there were a lot of probablies— probably survivable, probably not catastrophic, probably okay to deliver naturally, probably.

My two-year-old had started talking to my belly, asking about Baby Sister, singing to her. One day, she looked at my belly, cocked her head to the side, and said in a singsongy voice, “Baby sister! It’s almost time for you to go to the hospital!” Kids are creepy.

I received the results of the genetic testing. I found out I’m only a carrier of one known genetic defect, something recessive that only 1/77,000 people carry and would only be passed along if my husband also happened to be one of the 1/77,000 people. The geneticist explained that just because the 500 gene panel didn’t find anything didn’t mean that I wasn’t carrying something else, even rarer, that hadn’t been studied. Cool, great.

I knew more nothing than I ever thought possible.

We still didn’t know what was wrong, definitively. At the next appointment, they sent a psychologist in to ask me how I was doing, and I started crying like a kid who had fallen off the swings. I had reached the end of being able to keep it together. I asked to be put on Zoloft. They obliged. 

I went to San Diego to see my friends from college, who had moved our girls trip from Texas to the West Coast because two of us would be pregnant at the time and Texas is an inhumane place for pregnant women. Again, I tried to explain what was going on with the baby in a way that made it sound like I was feeling great and casual about everything. At this point I’d explained it and had it explained so many times that I think I achieved nonchalance.

My husband insisted on coming with me to the next appointment, which ended up being a good thing because I was caught in the self-defeating cycle of trying to Handle It All Myself and would have continued it in perpetuity without intervention. 

We met with a neonatologist who explained to us how the birth would go. I could go into labor spontaneously if I wanted and give birth the regular way in the hospital, but there’d be a team of Children’s doctors on hand in the room to stabilize the baby and take her away right after the birth, put her in an ambulance, and drive her to Children’s. Because she’d be moved to a different facility, for as long as I was in the hospital, I wouldn’t be able to see her. I wouldn’t be able to feed her. I’d be alone in a recovery room hooked up to a breast pump, having runners bring her syringes of my colostrum as nurses woke me up every 2 hours to prod my vagina. 

The care coordinator handed me a blue folder with all of this information inside, written in the simplest language possible. 

I didn’t understand why the plan was to automatically transfer her despite the fact that we weren’t even sure that she had a heart defect that required immediate attention. The idea of planning on having them take her away from me immediately made me feel physically ill. 

I thought about one of my friends who had an emergency C-section for the birth of her second child, how haunted and traumatized she was by the whole experience, even though her daughter is a healthy preschooler now. And a relative who gave birth at 30 weeks and spent months commuting to and from the NICU and the local Ronald McDonald house. And a former coworker who couldn’t hold her newborn baby for a week after he was born. Another friend who lost their baby, who left the hospital with an empty car seat. Parents who spend days, weeks, months separated from their infants, or who hold them once and never see them again. 

While I was still in my first trimester and feeling mildly nauseous all the time, I interviewed Chrissy Teigen about reproductive justice. She talked about how, when she lost one of her babies at 20 weeks, she’d wished she’d taken longer to hold his body at the hospital. 

The overwhelming amount of pain these mothers must carry with them! I was only playing out scenarios in my head to prepare for the worst. They’d lived the worst. 

The “at least” statements were not soothing, no matter how many times I repeated them to myself. “At least they know something might be wrong.” “At least they’ll be ready for all the possibilities.” “At least she’ll be in the best possible hands.” “At least she’s not going to die.” All true— with a heaping side of probably. But I still mourned the pregnancy I’d hoped for, the birth I’d hoped for, the life I’d hoped my baby could have, one free from pain and fear for as long as possible. It seemed like everybody was acting cavalier about the very serious prospect of separating a newborn infant from its mother, all in the name of an abundance of caution. 

I worked on accepting the thought of being alone and empty-armed in the hospital. 

I couldn’t bring myself to do anything to prepare for the baby. The newborn clothes I’d sorted and saved as Juniper grew out of them remained in the crawl space under the house. The bassinet that my friend Katie offered to lend us remained in her attic. None of the rooms had been rearranged. I could not bring myself to decorate. We hadn’t come up with a middle name. It all felt too optimistic. 

At the next appointment, resigned as I lay slightly on my side on the exam table so that I wouldn’t pass out, the cardiologist looked at the heart again. And looked. And looked. And when the head of cardiology came into the room, she explained that they saw no evidence of a critical blockage in the heart, after all. The membrane was simply a common quirk of anatomy. They were fairly certain. 

And the fluid in the lungs that had sent me on this journey of fucking emotional whiplash was still gone. 

That meant that they didn’t have to plan on taking the baby to a cardiac NICU right after birth for possible emergency surgery. That they didn’t have to take her away from me at all. That they still had never figured out why the fluid had ever been there in the first place, or why the radiologist saw TAPVR, or why any of it. I know this must have been hard on you, one cardiologist said. It was, I said. 

The care coordinator at the MFM’s office, the one who had asked me about termination during that first phone call, seemed a little confused by my lack of elation when she re-explained to me that turns out, it looks like it might have been nothing. I just felt numb. 

All that was nothing. 

The care coordinator handed me a care package full of hand-crocheted baby items made by a team of volunteers and a blue folder with the new care plan inside. I read over it. The radiologist had amended her TAPVR diagnosis. The cardiac unit lowered the urgency of a transfer from level 3 to level 1– which context clues told me was “good.” There was no evidence of a membrane blocking the upper left chamber of the heart. Patient can give birth normally. Baby should receive non-urgent heart ultrasound within the first few days of life, which can be administered in the hospital of birth. 

When I got home, I put the new, thin folder on top of the fat folder that bulged with charts of fetal hearts with doctors’ notes scribbled around them and ultrasound images, printed out by the MFM at every visit. One of the common things that moms to be complain about on pregnancy message boards is how few ultrasounds are given during a standard uncomplicated pregnancy. Most people get them three times– once to confirm the viability of a pregnancy (at around 8 weeks), once to check for soft markers of genetic defects (at 12 weeks) and one grown scan at 20 weeks. Some doctors like to have a follow up after that, but not all. 

I wish I had fewer ultrasound images. I am trying to look at the ones I do have with happiness now, but it’s hard to separate my excitement to meet my child from the anxiety and pain and worry and uncertainty that cloaked these last months. My husband says she looks like my side of the family. I think she just looks like a baby.

I closed the folder and opened the bag of donated gifts. I held the crocheted blanket to my face. It smelled like a yarn store, like the sort of place my mother would take me when she was going to buy sewing supplies when I was a kid. She tried to teach me. I learned enough to get frustrated. I also learned that crocheted items cannot be made by machines; they all must be handmade. I thought of the hands of the woman who had made the blanket, the children she has held, the hands that held her as a child, what pain and love they carried.