From WTP Vol. V #1
Tissue: A Scar Story
By Erin Wood
I layer my daughter’s skin over my skin like translucent sheets of tissue paper, her scar story over my scar story. I hold the layers up against the light. Behind them, shadows move.
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I think of her skin. Her skin of my skin. Her first skin, when she was born at twenty-three weeks gestation. How it began to slough, to slide from what should have been its hold against anything that touched it—her diaper, her hospital-issued newborn blankets, the foam cuffs securing her IVs, the ventilator’s breathing tube against her lower lip, the electrodes monitoring her vitals, her own skin where it met other skin, like in the creases of her ankles. When they come so early, this can happen, the doctors had said. But the voices that had tried to give us answers were echoes in a strange, reverberating chamber.
For seventeen weeks longer, for over four months more, she should have been floating freely, turning easily inside the lightless goop of my body. Instead, she was born with skin fuchsia and furious, reflectively taut, spotted in purple and black. Even the palms of her hands—the size of the tips of my thumbs—bruised. Her legs and arms were nothing more than bone and skin. Someone said she weighed 640 grams, which translates to 1 lb. 7 oz. when you round up. Her head was little larger than a misshapen racquet ball, one of the blue-and-pink-and-white striped hats that they put on all the newborns, the size of a small blanket under her head.
How were we supposed to keep her alive? Before she was wheeled out of the room where I had pushed her from my body with dread, her father and I examined her for familiar parts and shapes and markings; we searched for something we could interpret. But we could not understand, this scene so unlike anything we’d ever imagined. There was no cooing, no holding—just a settling sense that we were powerless. When we nodded to her nurses, her still, red body was wheeled away to wherever it was in the hospital they would take her to do whatever it is they do to save the lives of babies like her. Were there any other babies like her?
Two days after her birth, I had yet to see her again, lying in a bed in a wing of the hospital separate from the Neonatal Intensive Care Unit. I had memorized the statistics on the document hidden away in a zippered pocket of my purse: “Outcome Concerns in the Borderline Viable Infant SVHSP 5798 (0310).” A document numbered so that it could be found easily among files in an office, a bar code at the bottom so it could be scanned when given to parents, a liability checkmark that the parents had been warned. I was once a practicing lawyer. I knew this was the kind of thing that lawyers do.
The form admonished me: “There does appear to be a threshold of gestational age below which there are not survivors. That threshold appears to be 23 completed weeks.” We knew the precise date because I had in vitro fertilization. Twenty-three weeks and six days. At less than 24 weeks, there was also a choice offered: resuscitation or compassionate comfort care. For her, we had chosen resuscitation. For her twin brother, we had chosen compassionate comfort care. But in the end, the choice regarding her brother was made for us when his heart had stopped beating in utero.
Now he was gone and her situation was utterly bleak. This document left no remaining choices, listing potential calamities from poor lung function to ruptured intestines to blindness to brain death. I had folded and unfolded and refolded the sheet of paper until it was divided into quarters, the ink worn away at the creases. I needed to make sure that I understood. That I had the facts straight. That I was prepared to make the argument. I tried to think like a lawyer.
But there in that bed I was no longer a lawyer and not much of a mother. I had never been a statistician, but I knew statistics were utterly subjective, prone to manipulation. If the statistics happened to be correct, perhaps it was better not to go to her until it was determined whether or not she would survive. But when would they know? Days? Weeks? Months? Jesus Christ, years? What would I find in her room at the end of the hallways that twisted and turned through the NICU? It was a mystery no document could divine.
After what must have been a hopeful reading, I somehow grew brave enough to search for her. My husband pushed my wheelchair to her room. I recall my pause at that door, that sliding-glass door behind which a curtain drew down between us, that door that I can see if I close my eyes even now. I marked that moment of standing in that doorway as one of those moments that can divert you from disaster: What if you went left instead of right? If you stopped a breath beat sooner? That door extended to me an offer to turn back.
But I entered. At the center of the room, she was sealed in a plastic box under an otherworldly blue light, her limbs stretched out in four directions like a pinned specimen. Weren’t babies supposed to curl up? She wore a mask over her eyes, which we would come to know as her “Biliglasses,” protecting her eyes from the Bilirubin lights that were helping to prevent jaundice. Kidney failure which often leads to no urine production.
I knew this was not what a baby should look like—unmoving, mouth propped permanently open by a ventilator tube, tethered to twenty machines that were reading and assessing and pumping and beeping—but I knew that she was our baby. At least the facts pointed to her being our baby, and the sign outside her door read “BG Wood.” She was a baby girl with our last name, and the first name we had chosen for her months before. My mother’s name.
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She had been inside my body, but I could not keep her there. And now, she was in her surrogate womb, a womb that was supposed to do what my body had failed to do. Her isolette. The iterations of that word were not lost on me. I had gone to her side and yet I did not dare, in those first days, to place my hands through the portholes that would have connected our worlds. I was not allowed to hold her close. I could have touched her palm with my gloved finger, but I chose not to. I had no way of knowing her, and I wasn’t sure that it was safe even to search for a way to.
She was so separate from our life, living in that small, electric box deep within the winding corridors of that enormous hospital, so tiny in comparison to the immense building, it seemed she could be misplaced. And who was making sure that she wouldn’t go missing? Once I got my bearings, I became suspicious of the only people who knew how to keep her alive. Where did they go to college, to nursing school, to grad school, to med school? What were the credentials of her nutritionist, her respiratory therapist?
But my suspicions did not yet give me a voice. I did not yet know how to be her advocate, her champion. I only raged inside when nurses laughed as if something—anything—was worth laughing about. I learned that if she grew cold, even by a degree, she would utilize all her energy to raise her body temperature rather than to heal. The womb and the isolette do this for babies so that they can dedicate their resources to other things. When some therapist left her portholes open too long, causing the cool air of her room to seep in and lower her body temperature, the isolette shouted with a vicious DING! that resonated deep within my chest, at a place I never knew existed. When I heard the sound, I tried to disappear into the corner, I crouched down and cowered. I said nothing.
My husband and I went home with my empty belly, our empty car, our empty hearts. The only efforts I could think of making felt futile. I pumped milk for her that she could not consume, placing it in little plastic containers to go in a NICU freezer. I cried into soft, pink clothes she could not wear. I closed the door to the half-decorated nursery that I imagined she might never see. I would re-learn how to grind through the day, how to park my car, to go through the hospital lobby, to push the elevator button, to sterilize myself, to put on a gown, to stand next to her box and watch her as she lay still as a stone, the only signs of life coming from machines. A mother should do something more for her baby. But what?
I did not know how to love her. I did not understand what she needed from me, nor what I could give her. Maybe the people who cared for these babies knew better. It was the ultimate defeat. Mother does not know best—I was turning the cliché on its end.
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I think of my own first skin. My skin that would someday become her skin. I rewrite its story, a story that also began with a baby in a bassinet. A story that also began with a mother in fear for the life of her baby.
My first skin, pink and plump and firm, covering organs that twenty-four hours after my birth doctors discovered were not fully functioning—meconium that had not pass; an intussusception of the colon; a prolapse; a telescoping of skin into skin that created an obstruction. A dire emergency for a newborn that in 2014 was treated simply by passing air through the digestive tract, but in 1978 was treated by surgery to cut away the telescoped skin and join the remaining tissues. My surgeon grandfather must have been pacing outside the OR with my parents, understanding the stakes, likely hiding his understanding from the rest of my family.
The first cut of the scalpel on a small, smooth field, the slicing away, the carving out, the rejoining of tissues, clean edge against clean edge, my survival made possible in the healing of that gap. And then a colostomy. And then a mother with an empty belly forced to leave her baby in the care of nurses and doctors.
When I was one and then two and then three, I had more surgeries. More surgeons’ fingers guided scalpels horizontally across my middle, opening my body in an attempt to solve the problems of my digestion. More incisions. More scarring. A vertical incision. And then, a diagnosis. Though it surely brought more worries, it must have been a relief to my parents to have a label: Hirschsprung’s Disease, the diagnosis handed down from a famed doctor in Memphis. I was to be the youngest child yet diagnosed, and he was to be in journals. A surgery to remove a substantial part of my colon. A post-surgical biopsy, negative for Hirschsprung’s Disease. Fingers pointed to the radiologist who read the pre-surgical slide, to the doctor who would now not be in journals. A lawsuit. A jurisdictional technicality ending the lawsuit. A colostomy removed and a child left with bowel incontinence.
Medicine had both saved and shattered my life. Kids made fun of me and didn’t want to be my friends. I had my suspicions about the kids who did; I knew they must have been hiding secrets of their own. If we were friends long enough, my suspicions were confirmed when I stayed at their houses: ticks full of blood that crawled from under the house where dogs slept in filthy pits, a father who threw shoeboxes at his daughter’s face, a mother who never ate and danced in the storage shed in her pointe shoes until her toes bled.
Like the friends I felt lucky to have, I lived in shame, certain there was something I could do to change what was happening to me but never sure what that something was. My parents’ divorce and my father’s cruelty only made matters worse, and soon I began hiding in my room on the days I stayed with my father, pounding my thighs until they bruised, trying to make myself pay.
I don’t remember being ashamed of the marks on my body, marks that ran (and still run) in the four cardinal directions, dividing my body in quarters. But I was barely surviving the shame of what they signified—the evidence of my body’s failures. There were plenty of reasons to hide, to change clothes in dark corners at summer camp, to keep kids from seeing those scars and what I needed to keep from them—my hideous story.
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Early one morning when she was about two weeks old and still hovering around a pound and a half, we were having coffee at home when the phone rang. The worst call imaginable from the hospital: You need to get here right away, her nurse practitioner Ramona’s voice. They only call in life-and-death situations because they know the sight of the phone number alone on the caller ID is enough to send any NICU parent into hysterics.
An immediate ligation of her patent ductus arteriosis was necessary; her lungs were filling with fluid. She was drowning. We anxiously signed forms listing all that could go wrong, including damage to the nerves of the left vocal fold—a detail that hardly seemed to matter in the face of the life-saving surgery. A detail that would only become relevant months later.
The surgeon went through her back, through her ribcage, to ligate the fetal heart valve that normally closes at birth, but in preemies allows blood and fluid to fill their lungs. Poor lung function due to very small and incompletely formed lungs; heart failure from a heart too weak to pump oxygen-rich blood to vital organs. The form that I’d memorized and folded and refolded, and all those who had composed its warnings, wouldn’t stop shouting at me.
After the surgery, however, her heart became stronger, there was less fluid for nurses to extract from her lungs, and her monitors’ distressing DINGs! happened less often. She had once again cheated death. But that was when her skin began to slide away. What remained wept and oozed. At this point in the womb, only one or two layers of skin are formed. Adults have nine, we were told.
One or two layers of skin, thin as tissue paper. This is why, when the leads monitoring her heart rate and breathing were removed, they took her skin with them. This is why without those precious layers, she had little to protect herself and developed an infection. A very immature immune system does not protect the baby from overwhelming infection. Without more time, she had few defenses.
Then a savvy thought from her nurse practitioner, Ramona: Maybe the burn unit has some ideas.
The burn unit buttered her with special salve and applied special gauze generally reserved for burn victims, giving her a slippery barrier. She shone under the lights that made what was left of her skin a window into the blue and purple of capillaries and the white of bones. With no fat beneath it, her skin was translucent; we were looking into her body. We could peer into veins pumping blood at visible intervals, point to where her ribs encased the heart struggling to beat. Ghosts were there in her skin, taunting us by revealing all that was wrong with her body; we could see everything, but we could do nothing.
She will be scarred all over her body from this infection, they said. And no matter how old they are, you can always tell a preemie by the track marks on their hands and feet. But scarring was the least of our worries then. Germs were everywhere, magnified, propelled through the air, traveling from baby to baby on nurses’ scrubs, beneath our fingernails, in our breath, waiting. Every handshake was a threat, every surface and every body a transport for contagion, every person who coughed a reason to leave a room. The nurses tried to do less, to touch and poke as little as possible through the portholes, the only barrier between her isolette and the open air of the NICU. Doing less meant a greater likelihood of maintaining the rainforest atmosphere inside her isolette—keeping the humidity high and the temperature constant. There was little more than wet tissue paper holding her body in, keeping every horror out, somehow bearing up the weight of our lives.
I do not have to try very hard to remember what was nearly upon us, that hot breath at the backs of our necks. Sometimes, when I dare to peer back in time, and if I recognize that I am feeling weak, I try to concentrate all my strength on not remembering. But somehow, by some power of medicine or some grace or some stroke of luck, the shadows departed her body and her infection healed. Her weeping skin transformed into a molting sheath—little yellow flakes, each a bit of evidence that things were looking up.
For the first time, when she was about a month old, I was permitted to hold her hot little molting body against my chest. Two nurses were necessary to tuck her into my un-buttoned Oxford shirt with all her cords and her vent, to position her head comfortably. They said that my heartbeat would calm her. I didn’t think that was possible since my heartbeat was audible, filling my own ears with the sound of a galloping herd.
But for those first few minutes, and then, weeks later, for all day marathon “Kangaroo care” sessions, we began to know each other. I learned her pizza-dough smell. I felt how her body relaxed when I played music for her, especially Helen Jane Long on the piano. Her vitals responded to my proximity. We began to feel more like a unit, like a mother and her baby even. Finally, finally, there was something I could do for her.
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My mother’s heart surely broke for me, just as mine broke for my own daughter, each of the nine times we learned I would need abdominal surgery.
Scar tissue. We so often think of it as what is visible. But in my case, that is less than half the story. Turn my body inside out and what you’d see would make the deep, directional scars on the surface of my belly seem trivial. Inside, dark caverns of adhesions have led to obstructions, more surgeries, more adhesions. My organs are no longer movable, no longer distinct entities, but great masses battened one to the next by scar tissue. In some ways I am better—the shame of my childhood incontinence resolved by a gifted surgeon and family friend when I was in eighth grade. But the shortcomings of my body still offer their sufferings.
My last surgery was to remove my fallopian tubes—those first cuts and those mistaken cuts and all the cuts that followed them culminating in that operating room, on that table, robbing my ability to naturally become pregnant, perhaps even leading to the premature rupture of membranes around our baby boy, perhaps shaping the story of our daughter’s scars.
The scalpel extends far beyond the skin that it first cuts, layering tissue over tissue, story over story.
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Near the end of our 128-day NICU stay, my husband and I asked for a consult with the pediatric dermatologist. As if turning our thoughts to surface concerns like scar tissue and how she might cope with the damaged skin that covers her chest once she entered adolescence could divert our thoughts from what if, once we get her home, her oxygen machine stopped working or she stopped breathing or her heart stopped beating.
Whatever the reasons, we wanted advice on how we might ameliorate the damage to her chest or what options might be available to her someday should she be bothered by her scars and choose to pursue those options. The doctor said that over time, the topography of her scar tissue will change, that it will grow with her. From my own history of scarring, I know that when he says it will grow with her, he means it will grow larger. His best advice was to lotion her up daily, that time would tell, and that there may be treatments available to her in fifteen or twenty years—ones we can’t yet imagine.
During the intervening two-and-a-half years, we have waited and watched. We have had the luxury of what our favorite NICU doc called “the tincture of time.” Month by month, we’d have to drag around the house the fifty-foot tube attached to her enormous stationary oxygen canister; her monitors; her leg braces; her bottles of thickened formula, have come and gone, leaving her tethered to nothing except the skin that holds her in its care.
The now-large squares of skin where the leads were removed are thinner than the rest of her skin. Through that thin tissue, I imagine I am looking at the very map of her survival: the veins that carried donor blood transfused a dozen times, strengthening her organs cell by cell, building up the layers of her skin. Each night, after her bath, we rub her chest gently with cream as the dermatologist had suggested, choosing a face cream rather than a body cream, hoping she will benefit from that extra richness. This nightly ritual has become a celebration of our love for this mighty child, for the massive feats she has already achieved in her short life.
As much as I would love to boast that the confidence that led me to accept my own scars came from within, the truth (as much as we ever have one) is that it hangs on the words of a college boyfriend—a six-foot-five-inch-285-pound football player who grew up on the streets, in a gang. When he saw my abdomen, and told me my scars were cool, I believed him. I believed him and for me, everything in my life pivoted that belief; the shadows and the shame diminished, and I became able to look people in the eyes and feel that I was worthy. I hope that our daughter doesn’t need to hear such words from the mouth of another to believe that she is worthy, but if she does need them, I hope that the words hang in the air for her, just waiting to be heard.
These days, Isabel is, as her grandfather Omo says so fondly, “normal as pie.” A toddler who runs everywhere, chats about the most curiously obvious facts, and from time to time throws fits so grand that they make us laugh as extremely as they consume her. The PDA ligation that saved her life left her with a paralyzed left vocal fold. Although her first year was spent in silence—no cries, no screams—at around twelve months we heard her first glorious chirps, and now she sometimes screams with no mercy in the grocery store where others stare and I knowingly chuckle. She has difficulty swallowing, requiring twice weekly feeding therapy, and restricting her to liquids as thick as milkshakes. This aside, if you didn’t know her story, you wouldn’t imagine any of this for her. You would not fathom what she has lived through.
And yet, pull back her shirt, put her in a tank top, watch her run through the backyard sprinkler or splash in the bath, and you will see that she wears her story on her skin. She seems to know the skin on her chest is different. Sometimes when she’s only in a diaper, she grasps this thin skin between her thumbs and forefingers, pulling it toward her father and me, as if she is holding out a t-shirt whose message she wants us to read. And, although our instincts now are to stop her so that she doesn’t cause further injury, I wish for her that this could be how she always feels. When she stands before a mirror some day, taking a closer look, I hope she regards the reflection of how her body worked, moment by moment, cell by cell, to repair the nearly mortal danger of her precarious circumstances. I hope that beneath the surface of her skin, she can feel her heart pounding with a mighty strength, the strength of two babies, both for herself who lives on and for her lost twin brother whose heart beats in hers.
Our scars will continue to articulate, reticulate. Our skin will be filled up with all kinds of stories, and then be revised, cut, rewritten. Despite all my surgeries and all of hers, there is no guarantee that we will not have more. In fact, for her, a nerve reinnervation surgery is on the horizon to sever the nerve to her left vocal fold paralyzed by her PDA ligation, and rejoin the fold with a functional nerve elsewhere in her neck. Ideally, this would enable close-to-normal swallowing function. It would attempt to resolve an early cut with a later cut. In terms of storytelling, a revision.
The story I have written of our daughter’s scars is one I cannot separate from the ways that our family has been scarred and healed along with her. The story I have written of her skin notes how something as gossamer and tenuous as tissue paper has held all of our lives together. I suppose in the end, the tissue was just as thick and sturdy as it needed to be. Neither of us will ever know what it feels like to live without scar tissue, to not have it mark us and guide us and guide the way that others interact with us. We were born with scars. We were born of scars. Because of our scars, we live.
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Adapted from Scars: An Anthology, published and edited by Wood. Her work has been featured in Tales from the South and The Healing Muse.