Image: “Burda 4” by Ana Jovanovska, acrylic and sewn paper collage on canvas, 20x20cm, 2016.
By Melissa Goodnight
Dana worked the morning shift at Skaggs Regional Hospital. As far as nurses go, she was friendly and efficient. She was a sturdy girl, with gentle hands and a welcoming hug. In the early morning hours, as the sun made its slow climb from behind the clouds, Dana could be found shuffling cords and fluffing pillows. After breakfast, she’d make her rounds saying hello to the patients she’d left the day before and introducing herself to new ones. Dana was skilled at easing pain, whether it was with a dose of medication, or a relatable story to help take the patient’s mind far from where they were. She’d speak softly while she brushed a comforting hand across an arm or a shoulder. There was something about her that put people at ease, something not taught in nursing school.
Dana had a penchant for whistling when she was nervous, and when she first stepped into my room that sunny August afternoon, that’s just what she was doing. She said hello, asked me if I was in pain, then she gave me a hug, so deep and so tight, that I felt like I was hugging an old friend. Then she went back to whistling. She whistled while she stuck me with an IV needle. She whistled while she pulled the Velcro of the straps tight around my belly. She whistled until nearly one o’clock that afternoon. Then, in the shadows of the last labor and delivery room on the right, she stopped whistling. She turned her eyes toward mine and in a smooth, calming voice told me that my baby had died.
I wasn’t surprised, of course. I knew all along what I was headed into. That morning when I checked into the hospital I registered to give birth, but that wasn’t what I was doing. I knew that. The woman at the front desk knew that. The other nurses and doctors on the floor knew that, and Dana knew that. I was there to induce labor at 22 weeks’ gestation. I was there to end my pregnancy. To have a late-term abortion.
Abortion. Jesus, the word stings, doesn’t it?
Abortion. Late-term, no less. Isn’t that where they rip the baby out and watch it die on a table while you writhe in pain and God shoots lightning bolts into your uterus? Doesn’t it signify the end of your pure life and mark you in some way? Thrust you out into the unforgiving world alongside Hester Prynne, waiting in suspense to assume your rightful place at the end of a short, prickly rope?
Abortion. Some say it’s a cardinal sin. Thou shall not kill. Or something like that.
In the state of Missouri, the abortion laws are lax, save the occasional Ethics Board review at a local hospital. Missouri allows for physician-assisted abortions in hospitals and clinics, including those considered late-term, which are performed after 16 weeks’ gestation. This was good news for my husband and me in the summer of 2011.
We’d been cruising along in life, taking our ups with our downs, enjoying more of the ups, as it were. We were newlyweds, married in December 2006 when our first-born arrived just eleven months later. His name was Jackson Riker. He was the spitting image of his father. A large, round head. Soft curls atop his soft skull. Ten fingers, ten toes. A baby laugh that stopped women in the aisles of Target, prompting stories of their own children, now grown, and a strong desire to impart some wisdom on us. Promise to enjoy these moments, they would beg, as if we were in debt to the generations before us. The moments are fleeting, they would say, as they gripped our sweaty, naïve hands. We would smile politely, not aware of the nostalgic sentiment with which the advice was being dispensed. Fleeting? We would give each other a knowing smile. It didn’t feel like they were fleeting moments. We were exhausted. We were cranky. We were picking fights and charting who had more sleep the night before.
Two years later we realized our error. We went to bed one evening with an infant and were shaken awake by a screaming, wild, running-over-the-dog, crayon-eating, refusing-to-sleep toddler. A few months into the terrible twos and we were emotionally, physically, and financially drained. So, we decided to have another baby.
By June of 2011, women at the grocery store would notice my belly, and my toddler covered in lollipop juice, and warn me that no two are alike. I would smile and nod. They were right, these women. I had felt completely different with the second pregnancy than with my first. With my first, I couldn’t keep anything down. My stomach only tolerated string cheese and bananas for the first eight weeks. With the second I could eat anything I wanted, and I wanted a lot. Candy, bacon, and cheeseburgers were my three main food groups. Nothing upset my stomach. Nothing made me ill or the slightest bit nauseous. It was a miracle and so very unhealthy, but I was enjoying every bit of it.
My husband, watching my enjoyment, inquired one night about what I was going through. What does it feel like, he asked, when the baby rolls over? Feels like I gas, I imparted. The extra hormones? Makes me want to stab people, I confessed. The desire to eat an entire sheet cake? Mind your own business, I suggested. He wanted a glimpse inside of my alien body, to share something with me, to feel like part of the team. I tried my best to explain to him the miracle he would never know. It’s harder than it seems. I couldn’t find the right words to explain the instant love and devotion. Or how this instinctual need for survival rises up inside of you. I got frustrated and told him that it’s like the alien ripping its way out of John Hurt’s stomach. We both laughed, but we knew the truth. I had cheated him. I cheated him out of the feelings of pain and of patience. Of rawness and of love.
I cheated him out of another feeling that night, too: intuition. Over the last couple of weeks, I had started to feel something new. Something I tried to attribute to the ladies at the grocery store. A new pregnancy comes with new challenges. But as the days wore on this feeling creeping up inside of me felt somehow different. It sent my thoughts to unfamiliar places. It kept my eyes open too late at night. It wasn’t at all like the first time around, and those intrusive thoughts, they gave me bad dreams.
My perinatologist was a small-framed woman with large, wire glasses. She was in her sixties, a fact she liked to surprise people with because she looked much younger. She had been delivering babies over thirty years and she could tell you, upon request, the exact number of babies she delivered weekly, monthly, and annually. Her busiest times were in September. New Year’s Eve babies, she’d say with smile. Everyone needs someone warm to go home with on New Year’s Eve. She made me laugh. She made me trust her. She made me feel at ease. She had promised, more than anything else, complete honesty. And she delivered on her promise.
August 5 was relentlessly hot. I was nearing the 20-week mark of my pregnancy and I was grumpy. That afternoon, my two-year-old and I were beating the heat with Mickey Mouse movies and popcorn, when my perinatologist called with the results of my routine blood work. My overweight chocolate lab had snuck into my son’s room and swiped a stuffed elephant off his bed. I was headed to snatch it out of her mouth when my phone rang. I checked the number and immediately knew. I sat down at the kitchen table and said hello, elephant in hand. My doctor’s easy but hectic voice came over the line. I heard the first part of the conversation clearly. Melissa, I’m looking over your blood tests and I don’t like some of the numbers. Then things started to jumble. I put the elephant down and grabbed a pen. I started scribbling notes on the back of a Pampers coupon. The more she said, the more distracted I became. The more distracted, the more nervous. The more nervous, the more scribbling.
PAPP-A levels – Low
Not compatible with life
My son and dog, both sensing my worry, had come to comfort me. My son climbed into the kitchen chair, my dog circled my feet, whining. Was daddy on the phone, my son wanted to know. Talk to daddy, he said.
I hung up the phone and rang my husband. He answered his office phone and asked what was up. He sounded busy. You know how sometimes when you’re already on the verge of tears, and you hear a caring voice, maybe it’s the love of your life? Or maybe it’s Arlene, the woman at the number four check-out line. Any voice, one that shows a semblance of generosity, you let the willing tears fall? This startled my husband. What’s wrong? What happened? I could hear the thoughts frantically racing through his mind. I told him everything the doctor had said. I told him three, maybe four times. I told him with different inflections, sometimes emphasizing the low PAPP-A levels, sometimes emphasizing the one in five chance. I told him that I needed him to come home. I told him what I had been holding in for the last few months. I told him that our baby was not well. He told me we didn’t know that for sure. I told him that I did.
The doctor had said we’d know more in a week, but a week can be a long time to wait. There are a lot of quiet times in a week of waiting, a lot of time to think, to research, to make lists, and consult professionals. That’s what we did.
The first questions were to my primary care physician. I called her office as soon as I could, and I asked her what it all meant. She explained. An amniocentesis is a medical procedure where the doctor inserts a large needle into the womb and extracts a small amount of amniotic fluid. That fluid is then sent to a laboratory for genetic testing. The laboratory would look at my baby’s genetic makeup. They would count chromosomes.
Healthy humans have a set of 46 chromosomes, 23 from each parent. A baby born with a Trisomy disorder has 47. That one extra chromosome is the trouble. It can lead to mental and physical problems that a growing fetus can’t combat. For a Down’s syndrome baby, the extra chromosome is number 21, hence the term Trisomy 21. My baby had a scary chance of having Edwards’ Syndrome, an extra number 18 chromosome. More questions came flooding in with the tears. What had I done to her? To my surprise, I’d done nothing. Unlike Down’s syndrome, Edwards’ Syndrome is completely random. Random. For some reason, not one that can be traced genetically, one sperm or one egg carried with it an extra chromosome. Neither my husband, nor I, did anything to cause this. We were, as it seemed, the losers in a lottery we didn’t know we were playing.
I told my doctor about my concerns regarding the amniocentesis and she suggested I go against my gut and have it done, though the decision was ultimately mine. She was afraid I would spend the rest of my pregnancy in fear of the how it would end. It turns out, full Trisomy 18 babies rarely make it full-term, and if they do, they have less than a ten percent chance of surviving to their first birthday. I ended the call a bigger mess than before, and this burning in the pit of my stomach, the one that said I was carrying a daughter, was also telling me she was not well.
During the rest of the week I spent countless nights circling message boards, typing Trisomy 18 into search engines, clicking on ads, and stories, and inspirational quotes. I once Googled Are all doctors fucking stupid? and I got a list of doctors who had malpractice lawsuits against them. None of mine were listed.
I had read that there were classic markers of Trisomy 18 babies. I had read about rocker bottom feet. Then I had a dream my baby was Forrest Gump, running down the magnolia-lined road in metal braces and brown shoes. I read that Trisomy 18 babies had cleft palates and cleft lips. My doctor, the one who prepared herself to stand on my behalf at the ethics board, had a cleft lip. She had multiple surgeries as a child. I never asked, only overheard. She was smart. She was sweet. She was born.
I once read that Trisomy 18 was sometimes mixed up with Trisomy 21 and that these parents in Tennessee, or Ohio, or Michigan had decided to go to full-term with a Trisomy 18 prognosis and then they prayed, and they prayed, and the baby was born, and the doctors were wrong. It was a miracle. The baby had Down’s Syndrome and had just celebrated his third birthday.
I’d cried so fucking much that week that my eyes were burdened with bright red veins. My voice seldom came out above a whisper. My hair, unwashed for days, started to smell like sweat and salt. I told my best friend on the phone that I had cried all there was to cry. That the skin around my eyes was no longer taut, that my nose, devastated by the constant blowing, looked like Rudolph’s. I would probably never be able to cry again, I told her. I was wrong.
I had agreed to the amniocentesis. So, seven days after the original bloodwork results I sat in a darkened room, my shirt stretched over my belly. The ultrasound tech spread warm gel all over me. She found my bouncing baby on the screen. Then my doctor told me to take a deep breath in, and she stuck me with a needle longer than my arm. Immediately I felt a pop, like a threading needle going into a balloon. Warmth washed over me. The frustration, the fear, the sadness I had inside, it sort of flowed over me with this warm fluid, protecting my baby, easing my mind. I didn’t know what the sensation was. I looked down at my belly. I looked at my husband to see if he had felt anything. His eyes were fixed on the screen. I turned toward the tech, my face broadcasting the feeling. It’s amniotic fluid flowing out of you, she said. Of course it was.
I rested my head against the cool of the bed and moved my hands to my face. I ran my fingers over my smooth cheeks and I remembered my first baby doll. When I was six years old my mother bought her for me. She was nothing fancy. She didn’t wet herself or eat food. She didn’t have hair you could comb or come with a bottle that looked like milk was coming out when you lifted it to her lips. She didn’t cry for attention. She was simple, and pale. But she had a set of dimples so convincing that I spent hours standing in front of the bathroom mirror, my fingers jammed into my cheeks trying to replicate them. I wanted to look like her mommy. I wanted to feel some connection to my pink, plastic doll.
August 14th, two days after the amniocentesis, I woke up suddenly at five o’clock in the morning. I had been battling extreme heartburn the length of my pregnancy and the pizza I had the night before wasn’t sitting well. The only cure I found for this was to sit straight up in bed, so I did. I instinctively grabbed my phone off the nightstand. This was my new routine. I would start at the Trisomy 18 Foundation website. I would find some new bit of information I didn’t know before and I would end mingling with people on message boards, reading inspirational stories, and watching videos from other Trisomy 18 parents. That night I couldn’t stop thinking about how life would change. Could change. Not just mine, but my husband’s and my son’s as well. I went back and forth trying to reconcile the thoughts racing through my mind. We had been granted a choice by our doctors. Either terminate the pregnancy or try to go full-term and see what happens. But I felt like any decision we made would be selfish. It would be selfish to carry our daughter to term, in hopes that we could hold her in our arms, even for a minute. Likewise, it would be selfish to end the pregnancy and disrupt nature’s, and perhaps God’s, path for her. It was not a decision that we could step lightly into. I was afraid of being judged as a murderer; likewise, I was afraid of being made a martyr.
What if my baby did grow to be full-term? Certainly, it is difficult to try to explain to a two-year-old what a pregnant belly is, but how difficult would it be to explain to our son why his little sister never came home? I tried to stop my mind from wandering off track, but it was too late. I had started down a dangerous path of what ifs. What if she survived and we were able to bring her home, would I set up a nursery for her? What if Jackson became attached quickly? What if I woke up one day and frantically laid my hand on her chest and there was no air moving in and out of her lungs? I didn’t have answers to these questions, let alone a clear mind to think harder, so I forced myself to sleep that night with fear in the spaces of my brain that had been lately reserved for hope.
August 17th was another early morning. The sun was moments from stretching its arms over the horizon when I realized that I hadn’t felt my baby move the night before. We had a ritual, her and I. At night when I ate a snack, I would always have it with a cold glass of milk. She loved milk and I would lie down immediately after and she would start squirming. Slowly at first, then little by little I would feel the movement from side to side. The two of us would get to know each other in these small movements. I had been such a heaping mess that week that I had abandoned our play time in lieu of Googling message boards and searching websites. My thoughts ran amok. Had her little heart stopped beating? Had she given up before we even knew what we could do? I ran to the kitchen and poured a glass of milk. I drank it in a second and went back to my bed to lie flat on my back, and then I waited. While I waited I imagined my daughter. I pieced together images of the various ultrasounds I had. Though she looked big in the pictures, her body was only about the size of a Barbie doll. She looked sort of like Herman Munster, with her prominent hairline. But she had this long nose, her brother’s nose, the same one as her great-grandfather. Her hands, I imagined, were long and thin.
Then I hoped that she had died.
As soon as the thought came into my head I cried. I begged God to forgive me for wishing that, but I couldn’t stop thinking it. If she was as sick as they thought, I didn’t want her to be born into a place she didn’t know. I wanted her to spend her last moments being rocked by the rhythmic steps I took, I wanted her to leave the only home she knew, as quiet and as peaceful as she had always been. Then I felt the tiny twinge of life and my heart filled my eyes with hope.
Later that day my doctor called. She gave me a date. She said she had gathered a team. I had never thought of myself as a person who required a team. I had never thought of myself as a person who needed anyone to take care of me, but as the days went by that’s what was happening. My mother came in from Kansas City. My husband stopped going to work. His mother caught a redeye from Maryland, and my son, nearly three-years-old, started asking if I was sick.
Slowly, my baby quieted down. She didn’t care for milk anymore and she never wanted to play. She, like most Trisomy 18 babies, she was losing weight, she was moving less, and she was waiting, I hoped, for her premature entrance into this world.
August 24th was another sunny, humid day. The kind of Midwestern humidity that takes your breath away. I wasn’t expecting it to be so hot. It was almost Labor Day. Almost the end of summer. Almost the end of everything. I squinted my eyes on the way to the hospital. My husband reached his hand across the seat and squeezed my thigh. He asked if I had a headache. If I’d slept. He asked if I was okay. No. No. No.
At the giant double doors to the labor and delivery wing, I stood for longer than I should have. I thought back to the last time I’d been there. Last time I had a huge belly. Last time I carried a diaper bag and a car seat. I stood there this time, my mouth slightly agape, a pillow tucked under one arm, a bag over my shoulder armed, I thought, for the war I was walking into.
I was a warrior.
I was a martyr.
I was, and possibly still am, a murderer.
The medicine would stop her tiny heart, that’s what Dana told me. Her heart, we already knew, was not strong. She had one of the classic Trisomy 18 markers, it was called Hypoplastic Left Heart Syndrome. The whole left side of her heart was underdeveloped. It wasn’t just her heart. We had learned, through several extensive ultrasounds, that her brain was abnormal too. She was missing the entire right side of it. With half a heart, and half a brain, my doll didn’t stand much of a chance. The doctors were amazed her heart was still beating the morning that I checked into the hospital. It’s relying on you, they told me. You’re keeping her alive. Then they pumped us full of Pitocin and Morpheme.
It only took four hours and I was in no pain. The day had just started for me. But for my daughter, it had just ended. She died inside of me that day. August 24, 2011. Wrapped in her blanket of warmth, in the only home she’d ever known.
As soon as I saw her small, lifeless body on the screen I wanted to scream. I wanted to rip the cords off of me. I wanted to demand some sort of reparation for my loss. But I said nothing. I did nothing. The irony of this otherwise straightforward moment was that I still had to give birth to her. There was no easy way out of this. She had died. The doctor had wheeled in the ultrasound machine to be sure. No more kicks, no more rolls, no more blurbs on the screen. But there I was, still pregnant. Still very much alive.
My son came to visit that evening. Friends brought him to the hospital just long enough for him to ask me three questions in his broken, toddler English. Why was I in the hospital? Was I sick? Where was his baby sister? Then he ate half an apple and some Cheetos, kissed me with his orange lips, and told me he was going to the park. I bent over the side of the bed to kiss the top of his sweaty head and I felt the gush of warmth. I panicked and signaled to my husband for a nurse, but I already knew what it was. It was amniotic fluid.
Hours later, on August 25th, my daughter’s small frame slipped out of me, quite unexpectedly. My smart, sweet doctor held her in her small hands while standing in the dark room, a look of surprise on her face. She hadn’t even had time to put gloves on. She stood, momentarily confused, unsure of what to do. All the practice. All the prep. The Do Not Resuscitate order. The photographer. The body donation signatures. The Chaplain. All the work and worry came down to this broken woman holding the daughter of another in the palm of her hands. I didn’t know what to say. She didn’t know what to say. The evening nurse came over. God, what was her name? She came over and she took my daughter into her hands, carefully, like an Agave just after bloom.
Like my body, my mind was not my own in those few, simple moments. It tricked me. It betrayed me. It told me immediately that my daughter was a precious doll. Is she pretty? That’s all I wanted to know. She’s beautiful, my husband said, tears streaming down his face, his whole hand on top of her small, thin body. She’s beautiful. I was wheeled out the next day holding a small, white box filled with photos of our daughter, rather than a pink bundle.
For a long time after, I was the topic of conversation. Rather, my choice was the topic of conversation. A family member said she heard about our baby. She said she heard about the decision we made. She said prayer would help. She gave me the number to her preacher. A co-worker told me that I was being punished for my husband’s religious beliefs, or lack of. She told me that only when he repented would we have a healthy baby. She told me that he would burn in hellfire damnation for all eternity, and so would my son, my daughter, and I, by association. It was the same story down at the grocery store. Across the bridge at the 7-11. People who knew people who knew me. They’d ask how I was doing. They’d ask what my husband thought. They’d whisper in hushed voices when I passed. They’d ask how I felt after it happened. Was I remorseful? Was I satisfied with my choice? Was I ready to try again? No. No. No.
This year marks seven years. Seven years. You’d think the sting of the day would have settled by now. The heartache, the brokenness I feel, would have melted away into some kind of memory that takes a little more time to recall. But it actually doesn’t take much at all.
A kindergartner walking into her classroom for the first time.
A blond-haired baby girl, full of curls and wonder.
A pink, polka dot blanket.