This story is published in collaboration with ELLE.
An itch, also known as “pruritus,” was once believed to be a kind of pain. We now know that an itch is a discrete sensation equipped with its own neural circuit. An itch, used figuratively is also associated with an urge. “An itch” to do something, is a need or a want, and can be extremely agitating. The neural circuits that control itching are very similar to the ones associated with pleasure and cravings, including addiction. According to research, this might explain why scratching can be temporarily satisfying, but ultimately leaves the scratcher needing more. My own life has been altered by an itch, a parabola that continues to drive my impulses, agitating my past, present and future.
I found out I was pregnant right before leaving for a study abroad program in Rome. My husband, Jon, and I had just gotten married, and maintained a monthly average of about $300 between us, after rent and bills. We lived in an absurdly small third floor studio apartment in Brewerytown, Philadelphia with two very offensive pet doves that woke us up at dawn every morning with their mating. It was called a “one bedroom,” but it was really nothing more than a studio with a cheap dividing wall. All our appliances were miniatures, and our oven baked a mild smell of mothballs into everything it heated. We were still plodding through our protracted undergraduate degrees–he philosophy, me literature–and our life was haphazard, but light-hearted and affectionate.. We were nervous about being overseas for most of my first pregnancy. But, friends and family members encouraged me to go. It would be an “adventure.” So we went.
For the first few months, we lived in a gloomy Roman suburb with a brash German woman named Constanze who kept the house unbearably cold. The city suffered its first real snow storm since the 1940’s that winter and everything shut down. The day the storm hit we were unprepared, and had nothing but an ice cream cake in the fridge, on which we subsisted for a weekend. We relied on a single bus to get us from our homestay to downtown Rome. If we missed the bus, we missed our classes. We would take the bus several miles until it dropped us at the station on the Tiber River. From there we would walk a mile along the Tiber to get to our school. The closest grocery store to our home was a Carrefour, a two-mile walk roundtrip. We spent most of our time walking. I wore through two pairs of shoes in two months.
Finally, in mid-March, we found an airy flat in Piazza Bologna, a single metro ride away from our school, and moved in with an esoteric octogenarian who said she hated Americans, but wouldn’t be around much. I was depressed and homesick, exhausted all the time, and became accustomed to throwing up in strange bathroom stalls and into grocery bags. I fainted erratically–once in the market in front of the dried beans, another time on a bus on the way to an Italian literature exam.
I was concerned about the fainting, and thought it might be due to the stress of midterms. So, I made an appointment with an obstetrician, Dr. Nico Naumann, at the Clinic Villa Margherita. I later found out it was the hospital memorialized by Ingrid Bergman’s clandestine birth of her son Roberto in February of 1950. I paid 40 euro for an ultrasound, which Dr. Naumann didn’t deem necessary, but thought it would give me peace of mind. It was the first time I had seen or even heard the baby, who was about sixteen weeks gestation. It all suddenly felt really real. He sent me away with the sonogram photos, which I kept in my red Moleskine organizer and peeked at during class.
Even after my appointment, nothing ever felt quite right. We still managed to travel and make memories–sleeping on a tiny boat on the Seine River, seeing Pelleas et Melisande at a fancy Paris theater, The Pallias Garnier, a magical dining experience in a dessert boutique in Krakow, Poland, and a short weekend in Iceland, where I bought the baby’s “take home outfit,” a dark blue, gender neutral onesie, with little cuffs at the ends of the sleeves. It sounds romantic on paper, but we were mostly living on financial aid refunds and running out of things to talk about. We were lonely.
During this trip I felt existential shifts, and a spiritual depression for the first time. Growing up in evangelicalism I had learned that feelings toward God are what tip the scales towards heaven or hell. If I felt “on fire” for God, then surely I had what they called a “personal relationship.” If I felt little, or nothing, I was considered a “lukewarm” Christian, useless to the mission of the church. Conjuring up emotion, while easy as a pubescent teenager, was getting more and more difficult. Most of the Rome trip I felt nothing, for the first time. I wondered if the personal relationship thing was a scam, sprung from Americanism and our obsession with individualism. I wondered if I associated my faith with home, and being surrounded by non-Americans was cracking open the box I had formed over years of purity culture and high intensity worship services.
We spent Easter morning in Florence. On a normal Pentecost the city hosted an elaborate parade, but this year, it was raining heavily and the parade was canceled. Jon and I took pictures in a photo booth and then sat outside the Uffizi museum at the base of the Pio Fedi statue for a few hours. Easter had always been a joyful day for me–an excuse to wear some makeup and a dress to church, and a breaking of a half-hearted lenten fast of coffee or sugar or tv.
Before my family lightened up on Christianity we attended a Pentecoastal church. There’s a part in some Pentecostal services when you “stomp on the devil.” People would throw themselves on the ground, beating it with their fists. I’d close my eyes, and sit cross-legged on my grandmother’s lap and feel the pat-pat of her fricatives on my shoulder blade while she spoke in tongues. “Just give God your tongue,” she would say. To me, it was always an unsolvable mystery of sounds. Those revival-like days were long gone but I still found myself thinking about things like the “holy spirit,” and wondering where they were and what they were up to.
The Books “Take Time” song and music video was the soundtrack to that trip. In it is footage of a man in a business suit being “slain in the spirit.” He lurches forward, but then the video slows down and shows him catching himself before sprawling out, prostrate. It makes me laugh so hard, but also makes me feel secondhand embarrassment. For him, for myself, for all of us. I think there was something about that man in that particular clip that initiated my deconstruction of Christianity.
When we returned home to Lancaster, Pennsylvania, we were completely out of money. We lived with my parents for two weeks until we found some work and a tiny studio apartment. There was a single, triangle-shaped closet, and we had to walk through the bedroom to get to the kitchen and bathroom. We tucked our kitchen table into an old cellar and started collecting baby items and planning for my birth in late August. At a twenty-two week ultrasound appointment, we discovered I was carrying a boy. I had a small baby shower. We kept the bassinet next to my side of the bed because we had barely any storage space.
On July 15, while housesitting for my in-laws, I started experiencing an infuriating itch on my palms and the bottoms of my feet. It felt like something was crawling around under my skin, and no matter how hard I dug, I couldn’t reach it. I rubbed my hands and feet up and down on the sheets, like I was making a snow angel in my bed. The itch crept up my back. I barely slept that night, and woke late in the morning feeling irritable.
Around noon that day I took a shower, ate a bowl of cereal, and noticed that the baby was unusually quiet. I called my obstetrician to see if I could come in on a Sunday, and she told me someone would be there to check on the baby’s heartbeat.
I didn’t feel a sense of urgency, just a mild dread. We gathered a few things. At worst, I thought, the baby is in some kind of distress and I might need to deliver. That notion excited me. I might get to meet him sooner than I’d thought. Jon and I left his parents’ house and drove back towards town in our Honda, not talking much. I held my stomach, begging silently for a sign of movement. In the Women and Babies Hospital car lot the heat was blinding. It jumped up at me from the pavement as we lumbered toward the door, moving at a normal pace that unworried people would move at. I fell into line at the welcome desk behind a half dozen other women. I wondered what they were doing on an off-day, maybe the same thing as me? They didn’t seem nervous at all. When it was my turn to explain my reason for coming in on the weekend I said “a non stress test.” That’s all it was, a test to show that neither myself nor the baby were stressed. The baby didn’t seem stressed at all to me, just very sleepy, maybe.
The moments that followed that phone call, and the subsequent ultrasound that showed the baby’s still heart, are ones that feel almost insincere to write about because I’ve read the same story in so many grief memoirs. It all happens the same way–the first nurse calls in the second nurse who calls in the third nurse–and the pregnant mother already knew what was wrong ever since the first nurse’s face went dark, but is just waiting for the pronouncement–“I’m sorry there’s no heartbeat.” One nurse turned the sonogram machine screen toward me, like she was proving it to me. It showed a black, splotchy cavity, surrounded by slow moving shapes. I always think about it when I see algal blooms in ponds, it looks exactly the same, only in black and white.
I already knew there was no heartbeat. But I felt held in suspension until given verbal permission to wail and scream, which is what I then did.
The nurse told me I would be having a “stillbirth,” which wasn’t a word I’d ever heard spoken. I’d only read it in books, and truly thought it was a condition that rarely occurred in the 21st century, especially to a young, healthy, twenty-two year old.
I was given options. Option A, go home, take off work for the week, and wait until my body realized that it had experienced “intrauterine fetal demise,” the medical term for a baby that dies in utero, and went into labor on its own. Or, option B, the obvious decision to us–come back later that day for an induction. The nurse recommended that I eat a sandwich before coming back, which seemed like an absurd and inappropriate suggestion to me.
Home in our apartment, I laid on my bed while Jon called our parents and my best friend, Eliza. He said we wanted to be alone, but within fifteen minutes I saw my parents and younger brother pulling up in front of our apartment.
My mom sat on the edge of the bed. She reached over and tried to touch my stomach, but I shoved her hand away. Her face looked like she’d been bitten by a snake. My dad said nothing, but reached out and rubbed my shoulders (he was a massage therapist for years, and shoulder rubs are his love language).
My brother, a missionary at the time, asked if I wanted him to try to pray to bring him back. Normally, that kind of talk horrified me, but this time I said “I’ll do anything.” He put his hands on my stomach and prayed earnestly. Nothing happened.
Induction can be a terrible process. It’s invasive. It’s tedious. There is absolutely no way to romanticize the details, especially without the hope of a living baby at the end. It often involves cervix-ripening pills, and something called a Foley bulb (a contraption that looks like a deflating balloon animal), typically followed by Pitocin, a synthetic version of oxytocin, “the love hormone,” and the one responsible for starting contractions. These procedures plus thirty-six hours of bouncing on medicine balls, drinking broths and standing in hot showers, summed up my induction experience.
After he was born, on a Tuesday morning, we were left alone to make our decisions. Funeral arrangements, how to handle the body, death certificate, and when to send him away to the hospital morgue. We made the decision to send him off, right before the new day. A nurse named Judy with a sincere look of empathy and teary eyes wheeled him away. We watched him disappear through the door, catching every last glimpse of him. I woke the next morning, asleep on my stomach for the first time in months. The light through the hospital window was a late-summer hazy. I put on a striped shirt, and noted in the mirror that I barely looked pregnant. We escaped unscathed, no scarring, no baby. He was buried on a hill in a nearby cemetery in a small white coffin trimmed with daisies. On the day of his burial, the sun gave way to a sudden storm that lasted only five or ten minutes, returning abruptly to a clear and sunny day.
I have been told grief can strip a person of their fundamental beliefs. I assumed this happened only to people who don’t know who they are, though I doubt that would agree with Kubler-Ross. So when I truly experienced grief for the first time, I waited for that change to occur. But there was no extreme before and after scenario. Grief instead marked my timeline with a colon, suggesting all proceeding material would be informed by this paradigm of loss.
In the weeks and months following the birth and funeral, I took what little information I had, and began to research. Instead of the anticipated anhedonia, I had the motivation of a survivalist, though I subsisted on donated casseroles from well-meaning church friends instead of berries and bark. In between moments of surviving, my head was brimming with partially formed thoughts–nostalgia for my childhood, Biblical bromides, conversations with strangers. I would fall asleep in the middle of the day. I applied for several new jobs but never showed up for the interviews.
While still in the hospital I was told there was no apparent cause of death, my placenta and cord looked healthy. So I refused an autopsy. My doctor said that these things sometimes just happen, and that my chances of having another stillbirth were highly unlikely, “like lightning striking the same place twice.”
Something in my gut told me that there was a cause. But I had no idea what I was looking for.
***
I had little more to go on than that itch.
I also recalled something a nurse had mentioned in passing, that I had ”elevated liver enzymes.” This was a phrase that generated more pages on Google, leading me to conditions like preeclampsia, HELLP syndrome, and Hepatitis C. My own symptoms didn’t match the characteristics–I didn’t have high blood pressure, and my bloodwork showed no markers of these liver diseases.
Stillbirth, I learned, claims more than 26,000 babies per year, many for unexplained reasons. I thought a lot about the symbolism of the womb, as a place characterized as “safe” and “comforting,” wondering what it was about me that made this supposedly secure place dangerous and fatal. It was a contradiction I found both heavily ironic, and unthinkably grim.
Finally, I stumbled upon a private Facebook group called “itchy moms.” Severe itching on hands and feet, worse at night, confused doctors, liver enzymes, stillbirth–these women described my experience. I felt I had found some solidarity. And, I reached the conclusion that I had experienced obstetric cholestasis, or intrahepatic cholestasis of pregnancy (ICP). It’s a disease of the liver that affects pregnant persons in their third trimester of pregnancy, characterized by severe itching, especially on the hands and feet, nausea, fatigue, and depression.
I knew this was what I had. There is no cure, only management. A serum bile acids test that can detect toxic levels of acids, and a comprehensive metabolic panel, to check for liver functions. A diagnosis requires fetal monitoring, treatment with a prescription medication called ursodiol or actigall, an ancient Chinese medicine taken from the gallbladder of a bear, and early delivery, before thirty-seven weeks gestation, and even earlier in severe cases. I learned that there was a seventy to eighty percent likelihood of having it again in a subsequent pregnancy.
While a majority of chronic itching comes from skin conditions, some does not. With ICP, the itch has nothing to do with the skin. Instead, bile acids accumulate in the body’s tissues and trigger the sensation of an itch. I was very fortunate to have experienced itching for only twenty-four hours. I read stories of mothers whose itch was so severe, they excoriated their limbs with kitchen knives and scissors, rolled in gravel and numbed themselves in ice baths. In the Facebook group they would share grisly photos of their abraded feet and hands and swollen bellies covered in scratches, begging for advice to quell the itch. Suggestions of milk thistle supplements, dandelion root tea, a clean diet, Lanacane and Dr. Bronner’s Peppermint soap were offered up as solutions, though never panaceas. “Worked for me for a week,” one member would say, and then the “itch came back with a vengeance.” Some suffered from insomnia, others were suicidal. Some shared screen shots of their bile acid test results, asking for help to understand the confusing reference ranges. Group moderators would jump in with interpretations.
When a baby was safely born, they were often introduced on the Facebook page as “my little itch.” “My little itch has arrived, thirty-six weeks, no NICU time,” or “my itch came even earlier than expected yesterday at thirty-four weeks. She’s being monitored for respiratory distress,” were posts I saw almost daily. Babies who didn’t make it, due either to lack of diagnosis, improper treatment, or sky high bile acid levels, were shared in an offshoot of the group, an “In Memory” page. I was a quiet observer on all the Facebook pages. Still afraid to admit that this was what I had experienced, and afraid to chime in until I knew for sure I wanted to try again.
I learned of a researcher on the cutting edge of this disease in the UK. I called her. I shared my story with her and she confirmed my suspicions, but said without a diagnosis, it would be difficult to get the correct tests and treatment in a future pregnancy. She said I had likely experienced an acute version of the disease, that my bile acids probably spiked so high that one night that the baby’s oxygen was compromised, or his liver failed, or it stopped his heart altogether. She encouraged me to push for a diagnosis, but because I hadn’t had testing during my pregnancy, I couldn’t get one based only on my itching–typically a benign side effect of pregnancy. Bile acid levels aren’t something that are routinely screened for, though ICP is the most common liver disease of pregnancy, affecting one percent of pregnancies.
Bile, that greenish, foul smelling matter stored in the gallbladder and associated with vomiting, serves a very important role in filtration. Normally bile acids go into the digestive tract and break up fat, which is then reabsorbed by the blood and transported back to the liver to be recycled and used again. With ICP, the building up of bile typically occurs in the second to third trimesters of pregnancy, likely due to an increase in pregnancy hormones estrogen and progesterone, that disrupt the normal flow of bile in some women, according to American College of Obstetricians and Gynecologists (ACOG). If the concentration of bile acid gets too high in the liver cells, it has a special protein that dumps the toxic acids into the blood. In the meantime, in every normal pregnancy, the baby is also producing bile acids, but relies on the mother to metabolize them until birth. Because the ICP mothers’ bile acid recycling process is already working overtime it can’t afford to remove the acids from the baby anymore, so they build up in the unborn baby’s bloodstream, literally poisoning the baby and often degrading the placenta.
The process of achieving balance in the body is called homeostasis or diffusion. When it comes to bile and other fluids, the human body will only remove acids until equilibrium is reached. Therefore, even if both the baby and the mother have toxic levels of bile acid, if they’re equalized, the body doesn’t register it as a problem.
In On the Nature of Man, the classical Greek physician Hippocrates wrote about bile and balance. He said that the body contains blood, phlegm, yellow bile, and black bile.
Each substance is attributed to a different set of pains, with health being “that state in which these constituent substances are in the correct proportion to each other, both in strength and quantity, and are well mixed.”
Pain is the consequence of a deficiency or an excess, or when a substance is taken away or not mixed with others, he wrote. While he may be medically outdated, Hippocrates was right about one thing—bile is a force to be reckoned with.
***
My inklings about the nature of my own womb were correct, it was and is a hostile place for a baby to grow. A place I cannot trust to support life. A place that could turn on me at any moment. And yet, there was a stronger sentiment, thrown off by shock and grief, and ripened by longing–the need to have a living child.
Some people wait months or years after a tragic loss, but I was desperate to try again as soon as possible. I attribute this urgency to my age. I was still in my early twenties, and felt optimistic, despite the tragedy. Now, more than eight years later, I feel a sadness for my younger self, and her inability to fully grieve. I jumped back into life without much of a hitch. There were the flashbacks, the dreams and constant reminders, like a memory box with a hair clipping and shampoo from his first and only bath that the hospital sent me home with. But I re-enrolled in college and continued with my degree. I wrote about my experiences in a Gen-ed class I’d put off until the end of my degree called “intellectual heritage.” When my professor read the piece, he pulled me aside after class, tears in his eyes. He put his hand on my cheek, thanked me, and wished me the best. It was times like these that reminded me that what I had experienced was abnormal. I really was struck by lightning. And I learned to lighten my tale as a result, avoiding the word “stillbirth,” and thus avoiding the overwhelming response of strangers, where I often found myself needing to comfort them.
Jon and I would visit the cemetery at different times, on our own. Often on the way to the grocery store, or coming back from a friend’s house. He told me that on one particular solitary visit, he had wandered away from the gravesite and towards a nearby cornfield. The sun was setting, and as he approached the edge of the corn he suddenly had an overpowering feeling that something large, looming, and horrible would emerge and come after him at any moment. He ran to the car and drove home. We both had our own strange, supernatural experiences in the years following. I had a tangible increase in hypnagogia, that mental phenomenon of “threshold consciousness,” between sleeping and waking, when you see and hear things that can’t be described when returned to consciousness. It’s been described as “sleep time visitations,” and derived from Greek hypnos meaning sleep, and agogeus, being guide. My sleeptime visitations are always very familiar, and simultaneously frightening. I can only describe them as buzzes, bold words, warmth, a vague fleeciness. The moment I try to hold onto them they scuttle away. I started to wonder, if maybe death is something like an intelligible version of these shapes. Maybe, when the time comes, they will fall into focus, and guide my spirit from my body.
Dissociation became a constant for me as well. Feelings of being only partly real, a sensation of floating through life and watching myself from above. When the sensations were particularly strong, during times of stress or extreme tiredness, I would find it nearly impossible to picture the faces of my loved ones, including my own husband. I could remember only pieces of their faces–lips, brows, a certain type of smile, but never the whole portrait. A friend once suggested the theory that maybe everyone we’ve ever met is slotted into a Rolodex in our brains. The faces that we’ve seen only once or twice are easier to recall because we’ve only seen them one way, typically a smile, or polite facial expressions. But those that we see everyday, and have seen in a full spectrum of emotional contortions are harder to remember because of the variabilities–at least for some brains. Even so, neither he nor anyone else I’ve expressed this experience to can relate to it, including my therapist.
I read an article somewhere in the year after my stillbirth that said that after a woman births a child that child’s cells continue to live in the mother’s body for years, sometimes decades. I read that all pregnancies, successful or not, leave behind DNA, imprinted with information about who that person would become. I think that’s when my healing began. I told my therapist that I would not grieve fully until I had a living child. She seemed troubled by my insistence on this point. “What if this never works out for you?” she pressed.
October came, a year and three months since the day I gave birth to death. With those cells living in me still, I managed to bring a breathing child into the world, my own “little itch,” albeit much too early. He stopped breathing as soon as he was born, after a single cry, and I laid on the operating table, physically paralyzed from the waist down, and emotionally paralyzed from the heart up. He did survive, and after eighteen days in the neonatal intensive care unit, we brought him home.
Four years later I wrote about my stillbirth in an admissions letter to Columbia’s Graduate School of Journalism, and then again I wrote about my disease for my masters thesis at the school. Only a few months after my thesis was published I looked at my online health portal and saw that my detailed medical report had been added. I had requested it almost six years earlier, but never received it. There it was, complete with a “death notice,” and a play-by-play of my entire experience, start to finish.
Today, if you type “itching during pregnancy” in any search engine, ICP is the first thing to come up. With some medical consensus, and a well-established, though not widely practiced standard of care, ICP pregnancies stand a pretty good chance. There are multitudinous risks, from preterm birth to placental abruption and, as I well know, stillbirth. But the treatment is readily available, and lots of special doctors and researchers are trying to figure out this disease that likely accounts for a great amount of those “unexplained stillbirths.”
And yet, the hurdles of convincing your small town doctor of the diagnosis, requesting the right tests, receiving the correct data on those tests, interpreting that data, and then, when all possibilities are laid before you, deciding on an “optimal” delivery date all while itching yourself to death is enough to turn anyone away from childbirth. So, why would anyone want to do it again? It’s a question I ask myself every day. It’s harder now, knowing how much I have to lose. Pregnant now, again, after all these years, during a pandemic–it’s hard not to assume the worst.
Pregnancy after a stillbirth is a kind of purgatory. You’re waiting in limbo for an outcome, while knowing that the rest of your life will be filled with either more pain and suffering, or joy and relief. No pregnancy is a guarantee. But giving birth to death is an event that imprints you forever with the knowledge that bad things can and do happen to you.
For each of our pregnancies, we chose a song, one that corresponded to the feel of that current pregnancy, something to sing to them at night in years to come. For this one, we chose “Be Still” off of the Beach Boys Friends album. It’s a perfect song, with a simple melody, written by the poet Stephen Kalinich and sung by Dennis Wilson, with an unadorned organ accompaniment. It sounds a lot like a hymn. It’s main motif is the essence or expansion of life–seed to tree, mountain to sky–and the idea that the subject, this particular life about whom he sings, is “meant to be.” There are other songs on the album that were written for a child, so it’s easy to assume this one may have been too.
Listening to it is like being torn between two worlds. In the near future, this song will constitute one of two realities. It will either be a cherished lullaby that we sing our baby to sleep with, or, it will be the song that we will forever associate with tragedy. These are the realities that loss parents have to hold. Never knowing what spring will bring, but hoping, maybe too brashly, for a life that’s meant to be.
