The Tag

Elizabeth Crowell

The bleeding, black letters sprayed on the silver utility box at the corner of Brattle Street and Mt. Auburn Street in Cambridge spelled Grief. The G was a hunch-backed giant on which the other, spindly letters leaned. It was a perfect road sign for the place we were going—the Neonatal Care Unit of Children’s Hospital, Boston. Someone heavy with sorrow had waltzed through the dark night to find a place to plant that word. Like all grief, it could only say itself. The event that had caused it was already gone, but its mark in the world seemed to be everywhere. 

When we first got the news that the unborn twins I was carrying suffered from a rare and almost always fatal disorder, Cheryl and I saw two birds flying at dusk in a lit, November sky. We took this to mean we would have two babies, not the omen of death it almost certainly was—two blank silhouettes against the cold sky and spidery, desolate trees. The signals from the world were scant and barely recognizable, and we looked for signs everywhere that things might be different than they appeared to be. 

Later, in the spring, months after the terrible birth, I saw a dead baby bird, skin shining, beak as hard as bone, part of its mother’s egg shell stuck on him, a light aqua, as one might find in an ancient fresco. His eyes were shut. Don’t think it, I said to myself. Don’t even think it. Neither of your children is this bird. There are no more signs. It is what it is. You have lost a child and your other child is catastrophically ill, beyond anything you ever imagined in any scenario.

 

My wife Cheryl and I are good storytellers, the sort people enjoy at parties. And the story of our twins’ creation was one we loved to tell. The morning of our wedding—a humid, cloudy August day—I went to get the flowers and Cheryl drove down Rt. 128 to get the sperm. What a great line, Liz! After the ceremony and celebrations ended, I got pregnant in our home with twins, two weeks shy of my forty-third birthday. 

I’d never met Dr. H—the maternal-fetal specialist performing the eighteen week-fetal survey—but I recognized his reluctant tone. I knew from how he started, with the good news—no genetic defects, two sacs—that there was going to be a “but,” and that afterwards there would be a different story.

The twins suffered from twin-to-twin transfusion syndrome, a rare condition only possible with identical twin pregnancies. The shared placenta grows venous routes from twin to twin, instead of just baby to mother. The donor twin transfuses blood to his recipient twin. As the donor dehydrates, the amniotic fluid in his sac decreases to dangerously low levels. The recipient twin suffers from the pressure of the extra blood and so urinates constantly into his forcefully expanded sac. Eventually, his heart is overwhelmed by the fluid pressure. If the recipient twin dies in utero, a rush of fluid surges back to the donor twin, almost always resulting in severe brain damage or death. 

As we left that day, Dr. H said evenly, “This is not your fault.” 

“I don’t think it is,” I replied. It is possible that I am an unreliable narrator in my own story. 

Dr. H’s earnestness was more apparent the second time we met with him, when we weren’t hearing the bad news for the first time. In a full-lit room not dimmed for ultrasounds, he was a handsome, dark-haired man, a decade younger than Cheryl and I. 

He told us there were some clinical options, but few. The one that sounded reasonable to us was a procedure called amnio-reduction, in which the doctor inserts a needle into the sac of the recipient twin with the practical goal of reducing the fluid pressure and allowing room for more, inevitable fluid to enter. Then there is the hope—faint but distinct—that this might “recalibrate” the sacs, and reset things to normal. 

Cheryl suggested to him that the statistics were very bad—less than ten percent chance of delivering two living, healthy twins. Dr. H shrugged and said what ended up being the most helpful thing anyone said to me during the pregnancy and the terrible months that followed: “Those statistics are not your children.” 

I had to keep reminding myself that we didn’t know what was going to happen. This was the human condition in which we lived all the time. We couldn’t write ahead in our own story. 

 

We wanted Dr. H to know that we were not parents who wanted these babies to live at every cost to them or to suffer. This was a conversation that we would have more than once, though now I feel it almost as a lament. Of course, everyone would do everything to make sure that we gave the babies their best shot at life without suffering, though suffering is a part of any life, and the quality of suffering in an unborn child or preemie is not really knowable or quantifiable. And we did not want to suffer ourselves. We didn’t want our hearts to blacken and die from this. We didn’t want to have to make terrible choices. 

All parents feel the separation of their young child’s life, even for brief periods, as almost unnatural. We do not want to live without our children. We can’t even imagine it, and when we do—when we go to that dark place—we feel, innately, that we don’t belong there. We do not have as much choice as we must believe. We are not entirely of the world that we walk through, which is darker and more natural than what we want to feel. The children who grew in my stomach in those months, grew in tremendous peril, precariously, with the occasional invasion of a needle as Dr. H managed the sea of fluid, pushing that thin lifeboat through their dark night. 

Yet, I continued to teach high school English, as I had for a dozen years. I tried to ignore the children who die in the literature I teach—Macduff’s children in Macbeth, “all his pretty ones,” as he puts it; the twins that are cast into the evil forest in Achebe’s classic Things Fall Apart; and the young man who died for Greta in Joyce’s “The Dead.” Saturdays, I went to coffee shops to grade papers—teasing out main ideas, coaching sentences into order. Inside of me, my children fought off their own demise. And there was little I could do. I wanted to go right into that darkness, for I felt as if I were living there anyway. But I wasn’t. I was still living in the world, and I would continue to no matter what happened, which was the strangest part of all. 

 

During an appointment in late January, twenty-five weeks into the pregnancy, Dr. H wheeled the chair away from the ultrasound machine, wiped the gel from my belly and said gently into the darkened room that he thought we would be delivering these twins sooner rather than later. He could take more fluid off, but as of this point we were “risking fetal demise.” We had to get them both out before one baby expired, or else the rush of blood from the dead twin would push back and kill the surviving twin. We had to weigh the life of one against the other.

“It’s too early,” I protested. 

“I agree.” Dr. H said. We all sat with that for a moment. Then he added quietly, “You asked me to tell you when.” 

 

I have a twin brother. We are neither close nor distant. He is a physicist; I am a poet. My parents think it is our essential natures to be so different, though both he and I know we were confounded by our closeness as children, the intimacy of sharing our bodies. We looked a lot alike at a time when twins were still somewhat of a rarity. This was before ultrasound, and the doctor had insisted, despite my mother’s pleas, that she was having only one baby.  

During the appointments with Dr. H, I could barely look the white rush of the babies on the monitor, the black lake around one, the tight sac around the other. Yet, I did look at the heartbeats’ distinct buttons of movement. The beat of them, amplified by the ultrasound machine, sounded like a rush of horses on a grassy field somewhere. 

Finally, Dr. H would measure the umbilical flow, turning up the volume to what sounded like a sonic boom. We were hearing the lush, dark wood we could listen into but never enter. I thought of how silently my brother and I came into the world, in stealth, causing surprise and delight in our family. Two instead of one, both healthy, full-sized, one hiding the other’s heart. I tried to imagine what it would be like to know I had had a twin who had died, to whom I had been intimately, lethally connected, who was the person I would not grow up next to, fight with, compete with, and love. How would I experience that loss?    

That conversation we had with Dr. H in the dark room was the last time I believed we might really have two, live babies, that I could get more time out of the pregnancy. A day, two days, maybe two weeks, each day a muscle, holding those babies in place. After that, the days, crossed and loosened for months until I wished them over. 

Dr. H thought it might be best to admit me to the hospital and administer steroids to strengthen the babies’ lungs. We made the decision together to wait at least a few days. These babies were about to be our children. Underneath the gathering picture was the pentimento, the intention of what we had meant this pregnancy to look like and be. Though the loose, imagined sketch of our family had sunk into the real image, I could still see right through, to what was already gone.  

 

By the window in Pre-Partum, I stared out at the light snow against the dark black of Brookline Ave. On the lawn of the private school across the street, two wolf decoys were set up, presumably to ward off the geese that came up from the Muddy River and the Fenns. The Muddy River and the Fenns are part of the Emerald Necklace that famed landscape architect Frederick Olmstead designed to hang around the city of Boston. The clustered jewel of these city hospitals is set back from this necklace. 

Grief makes bright such particulars. Even as I was moving towards the delivery, or perhaps because I was, I considered the effectiveness of the decoys. They looked threatening, stolid. Would the geese sense danger and turn away? They would be wrong if they did. Perhaps, all my instincts about this delivery were wrong. Maybe there was something I didn’t see. And wasn’t there proof enough—as the geese cluttered the lawn regardless of those lupine ghosts—that the world just is, and the danger is, in fact, inside of us?

After the Caesarean cut, Dr. H coaxed the uterus, pushing down so hard there were inky bruises on my belly for weeks. The sound of the water spilling on the floor stood inside me like a picture. We asked the doctor about his shoes. His shoes? We wondered how he avoided that splash every time. That was what we talked about after our child died. 

 

We had never learned the gender of our babies, despite the dozen ultrasounds we’d had. But, after they were born, they were hustled so quickly to the neonatal teams, that this little fact was lost in the shuffle. I remember having to ask. One of the nurses told me they were boys, and then Dr. H said, “I knew that.” 

Already, Dr. H seemed farther away and part of the past, as if enough had now happened for there to be a real history. I remember looking up briefly before he did the cut. His hands were in the air, patiently waiting for the sterile fields to be set. He didn’t say anything, but I’d found that when he was concentrating, as when he was doing an ultrasound, he tended to focus in quiet. I liked this about him. Yet, at the brink of everything, there was a hush and a fade, and I wished I could take his words, “It’s not your fault,” from that first visit and place them here. 

 

The neonatologist brought James over to us. His tiny, dark face was wrapped in the bright, nursery blanket. We spent an hour with him, Cheryl and I taking turns holding him. Though his heart was still beating, there was nothing that could be done to counter the transfusion damage. Time was slack, and that small difference between living and dead was untraceable. We didn’t see it at all in the tiny closed slit of his eyes or feel it with the one finger of our hand that lay on his brief cheek. At some point, his heart stopped. He was so weightless, that when we had to let him go, it was hard to feel the emptiness in my own hands. I don’t even remember being reluctant to yield his body. 

Matthew weighed one pound, four and six tenths ounces. He had no kidney function. The night after his birth, he suffered a bowel perforation. A pod of surgeons traveled over from Boston’s Children Hospital and drilled draining tubes into his tiny body, hoping that the perforation would seal on its own. By day three his blood pressure had plummeted to dire lows and intense drug therapies weren’t working.

And there we were, back at the question of quality of life, of reasonable measures, sitting with doctors and social workers in a conference room with the wintry, gray skyline of Boston behind us. Three days before, we had lost one son, a loss that I couldn’t even touch, though it was everywhere. Now we were on the brink of losing the other. And even as he lived, the fluctuations in blood pressure might be damaging the vessels in his brain. Suffering, cost, worth, measures. A pound and a quarter. We agreed to have Mathew be DNR. We would not try to resuscitate him if he expired. 

Matthew lay with his eyes covered, on a bed of fleece, naked besides his teeny diaper. We had put up the tiny footprints someone had thought to make after his birth, so light on the powder blue paper, as if what he really meant to do was to step into the world and then step out of it again. 

Then, one day, he peed—a tiny, golden fleck in his diaper, the most beautiful thing I had ever seen, a signature of his arrival from the brink of death. For a week or so, he seemed to stabilize. We settled into a routine of going to the NICU, memorizing the menu options in the cafeteria and the food court across the street, debating about the routes in and out, the parking lot levels. And then, he began to slip away again. He had air in his abdomen; the perforation in his bowel had opened. His white blood cell count rose. The posse of surgeons arrived again in the middle of the night. 

Here we were, with yet another doctor, discussing the quality of our son’s life and whether it was worth it to put him through this, and whether he would even make it. The bowel needed to be resected. The surgeon would pull the intestine outside of his body, where it would sit for several months until healed. Later, he would have another operation to put it back in. There was no way to know how much bowel had been damaged or how much he would lose. He would probably die of sepsis if we didn’t do the surgery. Perhaps the perforation would heal on its own, but this was very unlikely. The surgeon said, “I could make up stories as to why he doesn’t need this surgery, but he does.” 

We agreed to the bowel resection and Matthew was taken by ambulance across the street to Children’s Hospital that night. Cheryl and I followed on foot; it was dark and cold and the buildings loomed tall and light-dotted above us. This is your life, I said to myself. The only way I could reassure myself was to hope that someday this would all be over, and we could just go home and get some sleep. I couldn’t imagine taking Matthew with me, taking him anywhere. 

But he lived. For reasons no one really understands, except that on some protoplasmic level he was remarkably strong, he tolerated the surgery magnificently, and though there were complications, none of them was life-threatening. Despite the fact he was critically ill and barely could feed at all, he somehow managed to gain strength, grow very gradually, and endure the hills and valleys of learning to breathe during his three months at Children’s.

The first time I held Matthew, he was as light as a necklace. I tried to believe that this was all right, that I wasn’t supposed to repel him. Stiff and wooden as those decoys on the lawn, I felt like the ghost of the mother I thought I should be. I felt I might be the most dangerous person to him. His startling, blonde hair was warm on his tennis-ball sized skull as he nuzzled against my bare chest. He was not supposed to be born for another two months. He stretched his throat, unable to cry yet, and leaned his fuzzy head against my skin, as if he had just landed from a long, sky-filled journey with no signs, with nothing he could tell me about. 

  

We lost the footprints. They fell off when Matthew made the milestone transition from the isolette to the crib, and were swept away by the cleaning staff, along with all the sticker backs, syringe tops, cloth tape, alcohol swipes, and all the materials that keep small babies alive. We had lost one of the few markers we had of the beginning of his life. Then, I had this dreadful thought. We had James’s footprints in the box of things the hospital gave us. James and Matthew would have identical footprints. We could use those. Use them? For what?  

It’s not your fault. I would take those words and try to hold on to them, try to turn the pitch of them to something more convincing. I had lost my child. He was nowhere I could see, though every time I looked at Matthew I thought of how he would look just like that. Cheryl and I shared so much during those months, but she did not have this weight, this guilt that something inside of my body had caused this. 

Because the loss of James was so total and also so absent, the sinew of that guilt was everywhere. In an odd sense, it was even reassuring. When I tried to put it to words, or when I looked at the few pictures of James and thought, “you did this,” I could hear the irrationality of my thoughts. Yet, as long as I played a part in it, I was held in place. James was not alone in that strange, dark wood into which I was not invited, not even to carve, as the graffiti artist did, a word of absolute lament.

 

Once, we saw “Grief” again on one of the many back routes Cheryl and I chose to beat the traffic to the hospital The word stood bigger, brighter, sprayed on an old brick wall that had been the side of factory, near a convenience store in Belmont. So, grief was someone’s tag, a trademark, a signature in the world. For all the places where it went unannounced, this stranger wrote, Grief was there. I thought it was brilliant. 

 

I was driving by Fenway Park on the way home from the NICU. It was a sunny day, and zealous fans, donned in red, lined Brookline Avenue, headed towards the game, where they’d eat Fenway Franks and sing “Sweet Caroline.” By then, Matthew had had all but his final surgery, and there was clear evidence that not only would he live, but that he appeared not to have suffered long-term damage. His intestine, which had sat outside him like a fat spring worm, was now tucked back into his firm earth. I was thinking we would take him to Fenway Park in a few years and buy him hot dogs. Maybe he would collect baseball cards or play Little League. And James would not be there for that. They would not sit shoulder to shoulder there, elbows touching each other, identical caps on their heads. 

 

Matthew returned to the hospital while he was learning to feed. It was two seasons later; winter had faded to spring, and now summer. I ran into Dr. H. in the halls. I had seen him only once since the birth and hadn’t talked to him for almost three months. I told him the good news about how Matthew was doing, and we chatted amiably for a few minutes. It felt very odd, as if I were in some early twentieth century novel by Thomas Mann or Henry James, where characters who spent some season of love and loss on a boat crossing the ocean or a sanitarium or a hotel in the Alps run into each again in some other season, after the love or grief had passed. I could barely contemplate what we had shared. It wasn’t until I walked away that I could feel myself shaking. I shuddered down the steps to the lobby, where I had to hold onto my legs. He was one of the few people to have held James. 

The day before Matthew went home, I walked around the Longwood Medical Area like it was my college campus the day before graduation. That was the restaurant we were in when we found out he had to have heart surgery. That was where we were eating, when he had to be re-intubated. That was the door we came out of in the middle of the night. That was the parking exit where we’d gone home without either child, after four days in the hospital. The lawn of the private school where I’d seen the wolf decoys in the snow was now lush and green, and we’d watched girls play lacrosse there all spring. 

 

Matthew is two years old. He speaks in full sentences and talks in bargains, “How about ice cream? How about movie? How about watch TV?” He has thick, blond hair and luscious blue eyes. His skin, once so yellowish, is flushed and perfect. He has a good giggle. His whole torso is mapped with scars—heart surgery, three abdominal surgeries, a triple hernia. In the months following those surgeries, occasionally a stitch would float to the surface of the skin from his mysterious, mighty body. Similarly, my own guilt and grief still rises suddenly, a dark strand that can sit over me for days or months. I try to flick it away, to pull the last piece of it out of myself.

 

After Matthew was born, I wondered how I would ever be able to describe how small he looked. I settled on his ears, which were as thin as paper. Sometimes they would fold over and crease, and the delicate fingers of a nurse had to peel them back. That is something I don’t have to put down. It’s there with me—the small beauty of a pinkish, luminous ear and its corridor from whence Matthew would eventually startle at the sound of the monitor blurting out its mundane complaints that he breathed too little or to much, where he would learn the sound of our voices, calling his name, where two years later the sound of any music brings him such delight he claps his hands and sings along, as if to prove to me that I have chosen the right sign from all the dark signs of his body that he would stay.