A Birth Plan for Dying

Hanna Neuschwander grapples with ending a wanted pregnancy, and finds that “right” or “wrong” fail to describe the moral reckoning.

Hanna Neuschwander | Longreads | September 2018 | 18 minutes (4587 words)

 

A week before my daughter was born, I typed up her birth plan. Reading it now, it sounds strange and stilted. “If the baby is born alive, we would like both a birth and death certificate. … I have fears that laboring will be painful without the joy of knowing we will be giving birth to a healthy baby who will come home with us. I have fears that I will be deeply sad during labor/at birth instead of happy to meet our daughter.”

 

How do you organize anguish? How do you bureaucratize grief and fear into bullet points?

 

River’s birth was scheduled for September 26. She would be born in the same hospital where I had given birth to our daughter, whom I’ll call M, two years before. The staff were ready for us. A kind nurse checked us in at noon and led us to a delivery room with a small sign on the door — a leaf with droplets of water that looked like tears. It’s a secret code. It alerts everyone who comes in the room that your baby is going to die, so people don’t accidentally congratulate you for being there.

It’s hard to know how to give birth under these circumstances. While you wait for the Pitocin to kick in and get labor started, do you read? Do you make small talk with your husband? Can you will yourself to disappear? I had trouble sitting still. I went out into the bright afternoon sun and walked a paved labyrinth in the courtyard. As I circled toward the center of the labyrinth I imagined I was coming to meet her. As I unwound, I prepared to say goodbye.

Once the Pitocin-induced contractions got going, they were intense bursts of knotty pain with just 20 or 30 seconds rest in between, very different from the long, rolling waves I recalled from my first delivery. It was tiring. I paced around the room, tried to lie down, paced again. As the sun was setting, we went for another walk. Twilight had painted a dark rainbow at the edge of the sky, and Mars or Jupiter or some planet was twinkling just above it. It would have been beautiful except for the ugly parking lot we were walking through. I remember being confused and then excited about the large silhouette I took to be a horse statue at the end of the sidewalk — what is that amazing statue doing in this ugly parking lot, I wondered — arriving at it only to realize it was a Dumpster.

***

When I was around 20 weeks pregnant, after an abnormal ultrasound made it clear that something was wrong but not exactly what, my struggle with language began in earnest. First there was the fog of her diagnosis, what amounted to a cavernous hole in her brain, surrounded by a bunch of misshapen junk. When the genetic counselor first called to give us the results — there was a “large midline cyst”, some “nodularity,” “agenesis” (lack of formation) of a structure called the corpus callosum, which connects the left and right hemispheres — each word she spoke was a fragment, unmoored from any meaning I could discern.

We had a follow-up ultrasound appointment in which the perinatologist flipped through a diagnostic textbook, looking for clues to help her identify what she was seeing. She had no idea. Meanwhile, the wobbly underwater music of River’s fetal heart tones played in the background. There was back-and-forth with the radiologist. I had an amniocentesis. I was sent for an urgent fetal MRI. The fragments multiplied. There were frantic, dissatisfying conversations with specialists, endless PubMed searches for scientific papers that might contain clues (there were none), calls with genetic counselors. River didn’t have a nameable disease, something straightforwardly awful like Trisomy 13, just a mounting pile of abnormalities in her brain.

When I was 20 weeks pregnant, an abnormal ultrasound made it clear that something was wrong but not exactly what.

It was all so vague that for a few days, I teetered frantically between a profound optimism — perhaps she would read below grade level — and crushing despair that her life would be an unimaginable cascade of suffering, which my love would not be large enough to break.

No one could give us a concrete prognosis, not even an educated guess about whether she would live, or how long she might live, or what her quality of life would be. We did receive a lot of grim looks. At some point, it became clear that we were expected to make a decision. No one named the decision. When my doctor called with the MRI results, the first thing she said was “It’s worse than we thought.”

***

In the delivery room, at midnight, I called for an epidural. Sitting with my back curled so they could slip the needle next to my spine, I furiously rubbed a small stone in my hand and tried to breathe through an icy terror. Soon my legs felt like big, dumb stumps — the way your lips feel an hour after getting a cavity filled. The relief was immediate, but not being able to walk off my jitters was distressing. I felt marooned on that small metal bed — just me and the reality of what I was there to do. So I slept, as hard and as long as I could. A thick, empty, opioid sleep.

The room was empty of sound. There were no monitors on, none of the maniacal beeping that usually accompanies a hospital birth. It took me a while to realize why. Fetal monitors allow the hospital staff to search for signals of something gone awry. They search so they can rescue, so they can intervene if anything goes wrong. We were there for River’s birth and her death. It was her life that was wrong. There wasn’t any point in monitoring us. That night, I remember gliding up through my oblivion to the surface and hearing only my ragged breath, John rustling under a blanket on the bench beside me, someone padding quietly down the hall outside the door. I felt I could hear River, swimming quiet laps inside me.

***

The day we got the MRI results was 14 days before I hit 24 weeks. Unlike most states, Oregon doesn’t have a legal cutoff for terminating pregnancies, but 24 weeks is commonly used as a threshold for determining fetal viability. After 24 weeks, terminating a pregnancy would become much more complicated. The soundscape of my pregnancy became a clock grimly ticking.

It’s one thing to decide to pull life support after watching your baby repeatedly suffer broken bones from resuscitations in the NICU, or endless failed surgeries. It’s one thing to be given a fatal diagnosis like Trisomy 18, and to know that death is certain. It’s one thing to know your pregnancy could kill you.

It is another to be told, “It’s worse than I thought,” but to have no prognosis whatsoever. To peer desperately into the medical literature and glean that it was almost equally likely that your child would be healthy with functional disability; would suffer excruciating, uncontrollable seizures and be physically and mentally incapacitated; or would be born without the ability to breathe and would die immediately anyway. The scales appeared to be tipped toward catastrophe, but certainty was a vapor.

The next night, sitting on the floor of our bedroom, facing John, the magnitude of it hit me. We had the responsibility of transmuting this meaningless horror into some kind of medical decision.

The first choice you have to make is whether or not to choose at all. I contemplated this deeply. It was the most alluring possibility of all, to abdicate choice. To say very simply: I cannot end my child’s life and I am willing to accept whatever that entails. But every time I tried this idea on, it closed like a corset around me. My heart would seize up then race forward; I kept not being able to breathe.

We made lists. What outcomes did we feel we were prepared to handle? Physical incapacitation? There were mechanical fixes for that. Learning disabilities, even severe ones? We knew how to navigate systems. Seizures, the only outcome we were certain of? They posed a problem. Some kinds were controllable. Others were not. We spoke with a pediatric neurosurgeon — there was no way of knowing in advance how severe they would be. We spoke with a friend whose son had begun to have grand mal seizures at age 3, and was now a grown man who had been through dozens of surgeries and three times nearly died, who possessed neither the ability to talk, nor to care for himself, nor to smile.

I accept that some degree of suffering is unavoidable, that it even has value in instructing us to be more compassionate emotionally, morally, spiritually, and politically. The outcome that terrified me the most was not that River would suffer, but that she would never feel the redeeming joy that makes suffering tolerable.

As we made our list we began to realize how futile it was. The whole exercise was predicated on having some idea of what outcome River would have. I ripped the list into pieces so small they couldn’t be ripped anymore.

***

Tick, tick, tick.

***

Around noon the day River was born, something changed. I was jolted out of my druggy haze by an urgent pain in my left side. I called the nurse and told her the epidural was wearing off; she called for an increase. The pain didn’t go away. I felt a rising panic. I ate a popsicle. John tried to read me some poems. I felt confused, overwhelmed, cagey. After an hour or so, it sank in that she was coming.

The doctor on call, a hospitalist named Jill, came to check on me. With a tenderness that still astonishes me, she examined me and let me know that River was ready. Because I was not quite six months along and she was so small, it would probably just take one or two pushes. I nodded. My panic subsided in an instant and I felt clear, like the moment just after you slip your body into a cold lake. The next contraction was different. I looked at the doctor. I looked at John. I looked at our friend Adrian, who was with us. “She’s here,” I said. On the next contraction, I gave the slightest push, more like an encouragement, and she slipped out like a little fish.

***

Trying to peer into River’s future was like standing at the edge of the ocean, scrutinizing a featureless, terrifying abyss. It was like being handed a rock and a shard of glass, and being told to use them to locate a star in another galaxy.

Hidden inside my body, I had not realized until now, was a kind of scaffolding, a haphazard architecture of beliefs and norms and values and ideas that I had cobbled together over the years, out of which I had constructed the idea of myself, and which I used to guide my decision-making.

But in the face of this horror, it collapsed entirely, leaving behind desolate rubble. Facing the man I had loved for 15 years, with whom and against whom I had come to define myself, I said, “I am not sure if I exist.”

“You exist,” he reassured me.

***

Gut decisions are typically made in moments of crisis when there is no time to weigh arguments and calculate the probability of every outcome — or, as in our case, when there simply aren’t any probabilities available. Gut decisions are made in situations where there is no precedent and consequently little evidence.

***

Two days after we received the MRI results, Adrian called. After listening for a long time, she asked tentatively, “Have you asked River what she wants?” My 22-week-old fetus? My unborn, unconscious child? No. Then again, nobody else had answers.


Kickstart your weekend reading by getting the week’s best Longreads delivered to your inbox every Friday afternoon.

Sign up


I hung up the phone and lay back on the quilt my mother-in-law had given us as a wedding gift. I tried to become very quiet. I reached my mind into River’s amniotic lake. I felt around the edges of her body, and I asked her what she thought about all of this. Do you want to live? I asked. I waited a long time for an answer. I told her, There is a lot of suffering out here, but we’d still have a lot of fun. I asked, Would you like that?

I waited again.

***

Three hundred years after the Enlightenment, bodies are still profoundly suspect — especially women’s. We generally believe that information from trained medical professionals, even the internet, is superior to what a woman says about her own physical experiences. Ironically, there is now a growing corpus of research showing how often women’s reports of pain are discounted by their doctors; for poor women and women of color, this is doubly true. When I’m struggling to align how I feel with what others will think about how I feel or about how I’m acting because of how I feel, I usually tell myself, “I’m really emotional today,” right before I dismiss myself.

***

River never answered me, of course. She couldn’t. She had a giant hole in her brain. But her silence was the most complete answer anyone had been able to give me.

***

As soon as we decided to let River go, my panic subsided. We had 11 days left I hit 24 weeks. We scheduled my induction for 7 days later. We ejected ourselves from our normal lives and planned to spend our last week together as a family. We went to the soccer stadium and stood in the fan section next to the drums and trumpets, so River could feel the bass thrum. We went to watch a migration of Vaux Swifts. We went to the Pacific Ocean, and I waded out to a rock and let the icy water surround me. We talked with our 2-year-old about what death is. We had a dance party every single morning at breakfast. In every minute we were aware not just of losing River, but also of having River. It was the most joyful week of my life.

Every single morning the first thing I did was go over all of it again, step by step — the MRI results, the medical papers, the feeling in my gut — and every morning I made the decision all over again.

Even so, every single morning the first thing I did was go over all of it again, step by step — the MRI results, the medical papers, the feeling in my gut — and every morning I made the decision all over again. I kept waiting for it to be different, but it never was. I didn’t decide to end River’s life once; I decided a thousand times.

“This is what parenting is,” my midwife told me kindly. “It’s making very difficult decisions with imperfect information, and trying to do right by them. You are River’s mother, and right now, you are being her mother.”

I wanted to meet her.

***

The minute she was born, they handed River’s tiny, slippery, reddish-pink body to me, and I clutched her tightly to my chest. She was alive, as I had hoped she would be, and she was riverine. Her eyes were fused shut and her ears still pinned to her head and her skin was translucent as film and her fingers were as thin and lithe as a wraith’s. She didn’t look like a baby who should have been born. To almost anyone else, I think she would have looked terrifying. To me she was beautiful. I had a singular yearning to hold her in the place right between my breasts. With her there, we were still one person.

A few minutes after she was born, the nurse took her and weighed her: 1 pound, 3 ounces. She was wrapped in a tiny yellow blanket my mother had knitted for her, and placed back in my arms. She was very still, very quiet. Every five or so minutes, she took a small, gasping breath through tiny, white, caterpillar lips. Twice, her little golem hands stretched out and she resettled herself. The blanket we had wrapped her in was sticking to her skin, and I worried about how raw it might feel to her. I had read every medical paper I could find about fetal pain perception and strongly believed that at 23 weeks and four days she could not feel pain. Yet still I worry she felt her blanket chafing her. It is high on the list of things I play over and over in my mind, wondering if I made the right choice.

Another was our choice to have her photographed. The bereavement literature gently recommends it. It is full of stories of mothers and fathers who couldn’t bear the pain of holding or looking at their dead child, and so fail to say a proper goodbye — and then live with an unresolvable regret. We were determined not to turn away from our grief, so invited our friend Morgan to come take photographs. He was profoundly respectful, moving quietly around us, camera clicking. He arrived 20 minutes after she was born and stayed a half hour. For a while, we had turned the lights on so he could shoot. We did the things we had planned to do: John and I took turns holding her and singing her songs; we flipped through a book of family photos and read aloud the names of all her relatives; we read her a children’s book her sister had picked out for her. My mother arrived and walked her to the window to show her the sunlight, even though her eyes couldn’t open.

Everyone left at the same time, including the hospital staff, and then it was just the three of us — John, River, and me. We turned the lights out again, and lay together on the bed, cradling one another, just looking and breathing and looking. This was what I had wanted to give her: quiet, peace, a chance for us to meet.

And that realization provoked a sharp regret. We had wasted half her precious life — 45 minutes — with the lights on, passing her back and forth and photographing her. When I think of it now, it brings me a bitter sadness. I look at the photos sometimes and all I see are the minutes I wasn’t holding her, keeping her warm. Other times, I am happy to have some physical evidence that she existed. If someone ever tried to tell me she didn’t — a fear that for some reason I still harbor — I could prove them wrong.

***

In pregnancy, there are two protagonists — the mother and the baby. We want their stories — their need, their suffering, their joy — to be the same. But they rarely are.

I needed to give birth to River, to say hello so I could say goodbye. But I wonder often if I sacrificed something she needed for something I needed. In some hospitals, River’s birth would have been impossible. Fearful of lawsuits arising from policies that require intervention to save the life of a child, most hospitals give women who choose to end pregnancies through labor and delivery a shot of potassium chloride (KCL) to stop the baby’s heart 24 hours before induction.

After deciding to end her life, this was the decision that most distressed me: KCL was possibly the most merciful option for River, but it felt violent and harrowing to me. In the end, the thought of carrying River dead inside me was too horrific.

The problem is there is no right way for your child to die.

***

At some point I realized that her tiny mouth was slack. A nurse checked her heart rate, putting a cold stethoscope to her, and I sobbed not because she was gone but because of the coldness. This would trouble me for weeks. When we received word that her body had been sent to California for a forensic autopsy, I was frantic that she was without her blanket in the belly of the airplane. When they called to tell us the cremation was complete, I held onto a mute terror that she had felt herself burning.

***

I held her for another two hours, lying on my side with her cradled to my chest, my cheek resting on the top of her head. It was as cool and smooth as a stone losing the heat of day after the sun goes down. Lying with her, she was not gone. I scarcely felt she had left my body. Though she was beginning to turn purplish, it was like watching a bruise form on my own skin.

I would have liked to stay in the riverbed there with her forever. I would have liked to let everyone and everything else rise while we remained, sinking to the bottom through the blue dark water, clanking and settling among the other river stones, feeling the cold rush past us down wherever water goes.

Looking up from the bottom, I felt the eyes of a bleak bird perched on the riverbank above us, wavering in the watery light. I considered it coldly. I closed my eyes and opened them again. It remained.

And this was the worst moment of my life: to be with her utterly, but to know that I had to rise, had to unfasten my cheek from her head, had to place her in a nurse’s arms, had to turn and walk out the hospital doors without her, into a world that never knew her.

I am not sure how I lifted my body, heavy as a bag of rocks, from the bed. I sat on the edge holding River to my chest. John went to find a nurse. The kind doctor came back in her street clothes and held my face between her hands and kissed me tenderly on the forehead and then kissed River on the forehead, with the same wonderment and gentleness as you would kiss a living newborn. I cried at the kindness of that. The nurse came. I put River in her hands. The yellow blanket flopped down and I tucked it back under her chin to keep her warm.

It was time to turn away, to walk out the doors. But I couldn’t make my body leave hers. John held me, steered me out of the room and down the hall. As soon as the doors opened and the night air came rushing at me, my legs gave out and I collapsed. A faraway sound came out of me that I think was the true sound of her body loosening itself from mine.

When I was through wailing, John lifted me up like a child and carried me in his arms to the car.

***

Three weeks later I realized I’d had a late-term abortion. None of our doctors had ever used the word.

I called Adrian and said, “I had an abortion, I think.” She was very quiet, then tentatively offered a kind of absolution, if I wanted it: “But it’s not really the same thing. You wanted her.” I thought for a minute about what it would mean to take her up on the offer.

***

The next night on TV I watched as Donald Trump, in a presidential debate with Hillary Clinton, unintelligibly dismissed late-term abortion: “In the ninth month, you can take the baby and rip the baby out of the womb of the mother just prior to the birth of the baby. … You can take the baby and rip the baby out of the womb in the ninth month on the final day.”

I ran into the bathroom and threw up.

***

If words compose a kind of map of what’s possible — what it’s possible to think, to feel, to do — then my map has new territories on it I couldn’t have imagined before: The island called “I Held My Dead Child.” The ocean called “I Killed My Daughter” (on many versions of the map, “killed” is spelled “loved.”) The volcano called “I Promised Myself I Would Not Feel Regret.” A new supercontinent, veined with rivers that murmur and murmur and murmur their own name.

And there are parts of the map no longer accessible to me, word-territories whose meanings have become noxious as a mining pit, leaching technicolor poison into everything that surrounds them. Words like “choice” and “life.”

The minute she was born, they handed River’s tiny, slippery, reddish-pink body to me, and I clutched her tightly to my chest. She was alive, as I had hoped she would be, and she was riverine.

The worst of it this: If you show this map to anyone, to try to give shape to the contours of the greatest, most difficult act of love you have ever committed, you will be called a murderer. To illustrate the full story of your love is to open yourself and your family to unimaginable abuse.

I don’t seek pity, but to have your worst personal pain be the site of the most toxic conversation in public life is awful. It is awful every day.

***

Three months after River was born, I sat in a rocking chair looking at rain materialize from an endless grey cloud shrouding the Columbia River. It was a vast, stuck sky. The river could have been blue snow, or cold metal, or bruised glass. When we named her River, we put her out there, in the landscape.

Rocking, I thought about what my life would be if she were living. My left arm would be sore and strong from nursing her, carrying her everywhere. My brain would be like the washed-grey basin of sky, just a loose, watery bell jar trapping the sound of her, the smell of her. Her needs would be my needs. But she would be learning — me and not-me, self and world. Like a glass window beaded with rain, she’d be on one side, I on the other. But we’d both be the window, too. We would still be able to slip through its pores, become one another.

I imagined that if she were alive, we’d always be able to do this if the need arose. If one day she grew up and became very sick, I would slip into her hospital bed and become her again. If she needed to become me, I would slip off my self like a silk robe and she could enter.

***

This is hard to say: Ending River’s life was the most moral decision I have ever made. Moral in the literal sense: “concerned with the principles of right and wrong behavior and the goodness or badness of human character.” I grappled with my deepest being — my spiritual, my intellectual, my biological selves. I made my decision, then re-made it a thousand times. I am terrified I have failed her, have failed my family, have failed my culture. But morality is no longer an abstract question for me. “Right or wrong” cannot contain the scope of my moral reckoning, my moral longing. What is an acceptable level of suffering? Whose suffering matters more? Who gets to decide? No one, not even the ablest philosophers, has been able to answer these questions to our society’s satisfaction. But for some reason we like to shame and vilify the very people who have grappled most viscerally with them.

***

River is gone. River is not gone. She is in my cells. When she died, she was the cradle my body became, not the center that escaped.

Rocking in that chair, I cradled a still-secret knowledge in the basin of my heart: I was pregnant again. The night we conceived, I knew. The force of it rang my body like a bell. Of course, there’s no medical literature to back me up.

Every day I reached my mind into the river inside me and asked, Do you want to live?

No one heard what my child whispered but me.

* * *

Hanna Neuschwander is an essayist and science communicator. She lives in Portland, Oregon.

Editor: Sari Botton