In the midst of winter, I’ve discovered within
me an invincible summer.
I was in labor, hospital-bound, but my husband, Bob, made a detour to return a video to Erols at my suggestion. It was 1983, before Netflix. Our first son, eight year-old Seth, was with his grandmother. I was 5 centimeters dilated and 50% effaced, with mild irregular contractions that hadn’t kept me from a holiday party the night before. I know all these facts because I am an obsessive record keeper, made more so after the death of Matthew, my second son. Because of my journal notes, I can tell you that after 12 hours of labor at the hospital, my obstetrician warned me that if I didn’t “progress” to 6 centimeters by 9:30 p.m., I would need a C-section. I didn’t want a C-section. He called my daughter-to-be a “premium baby”— one who had survived to reach this moment in time after others had been lost.
I have no notes to help me recall my first pregnancy, culminating in Seth’s birth. It was 1975, and although I refused to admit that I was lactose intolerant, I managed to survive nine months of mixing cottage cheese with scrambled eggs for a protein “boost.” I read Dr. Spock, eschewed second hand smoke, and only drank one hot toddy to ease a cold, at my mother-in-law’s insistence. Due to a pitocin drip, each contraction ran into the next. My Lamaze ha-hoo breathing, along with the yellow tennis ball my husband rubbed into my back, were not exactly keeping me ahead of the pain. I had to break my vows for a drug-free delivery, and demanded an epidural, but it was too close to delivery. Shortly afterwards, Seth Daniel Carlson entered this world, crying and pink.
I’ve never won the lottery. I hardly ever win door prizes. However, once, in Las Vegas, I slipped a quarter into a slot machine, pulled the lever, and ten dollars’ worth of change came cascading out. Prodded by my companion, I tried again. More coins than I could hold in one hand. Not wanting to press my luck, I stopped right there. Though I’ve never stacked a deck with aces, nor loaded dice, I hate leaving important things to chance. If there is a chance that my hard work might increase the odds of success, I’m willing to do whatever it takes. In those instances where it really doesn’t matter what I do, I turn to superstition. Knocking on wood. Swishing and spitting my mouthwash in a certain order. Ironing labels in permanent press shirts. The belief systems we create for ourselves cannot keep bad things from happening to us; however, following the rules we create for ourselves enables us to take risks, or for some, to go on. During my pregnancy with Seth, I was vaguely aware of genetic risks, but hadn’t memorized statistical facts about the occurrences of various disorders. I had been relatively young, so was not too worried about Down Syndrome. During my pregnancy with my “premium” baby, I hardly ever stopped worrying, despite reassuring news from the amniocentesis and subsequent sonograms each month.
Three and a half years after Seth was born, we were back at the hospital. I awakened with contractions at 3:45 a.m. on December 2, 1978. We arrived at the hospital at 7:00 a.m. We were assigned to the Washington Hospital Center’s “birthing room” that could have passed for an ordinary room in a house—cheerful with paisley-covered pillows and matching curtains—except for the looming stainless steel light fixture above a hospital bed and the blood-stained wooden board balanced against the wall to remind us why we were there. By early afternoon my obstetrician, after seeing no change in dilation, ruptured the fetal membranes, but no amniotic fluid rushed out. He did not seem alarmed, and hypothesized that the baby’s head was blocking the fluid from draining. Contractions intensified by late afternoon, and a few hours later I felt ready to push, though the obstetrician said I was only 9 centimeters dilated. I still pushed. After seven minutes of anaesthesia-free pushing, a terrible burning sensation took hold, immediately followed by Matthew’s birth. I had not required an episiotomy for his head, but tore as his chest emerged. Five stitches were needed, but my attention was on Matthew, his shock of black hair and cerulean eyes, his bluish skin that never turned pink. He never cried. It is now over thirty-five years later, but I still remember how quiet the room suddenly became. It was clear something was terribly wrong, but no one spoke, as if using words to describe the situation would lead to its finality. I remember how I broke the silence and said, “He’s beautiful.” I remember feeling these words had to find breath.
From a letter we received from the Department of Clinical Genetics of Children’s Hospital, dated March 12, 1979:
As we discussed, your baby had the infantile form of polycystic kidney disease, which is a serious condition and is not compatible with life. Infantile polycystic kidney disease is inherited as an autosomal recessive trait. This means that in order for a child to have the disease he must inherit two recessive or ‘problem’ genes, one from each parent. When the gene is present in a single dose there is no defect; it is only when there are two of these recessive genes present that the abnormality occurs.
We learned that our risk for having another child with polycystic kidney disease was 25% with every pregnancy—1 in 4. There was a 2 in 4 chance that any of our offspring would be carriers of this disease, but would never demonstrate symptoms. There was a 1 in 4 chance that any of our offspring would not even carry the polycystic gene. I took to flipping a set of two pennies, to reassure myself that a subsequent pregnancy would not end like Matthew’s. I flipped the pennies hundreds of times and discovered that getting double “heads” twice in a row was extremely uncommon, but nonetheless had occurred two or three times. I was not entirely reassured.
In the recovery room, shortly after Matthew’s birth, we waited for word of his fate. The doctor eventually returned, pushing aside the curtain in an awkward manner. We were first told that Matthew had a trisomy—an extra chromosome—and would not live past age 13. Next we were told he would not make it past early childhood. Each new swish of the curtain brought us news more dire than the next, until a small part of us secretly hoped he would be spared a brief life of suffering. Our sentiments at that time were probably not completely altruistic, as we, too, wanted to be spared. We were finally informed that Matthew would not make it past the day, and were told he had died within that hour.
I saved his birth certificate—a certificate of birth—proof that Matthew Eric Carlson was born to Robert and Nancy Carlson at 7:30 p.m., weighing 8 pounds, 9 ounces. He left no footprints. It took months to get the hospital to send me the autopsy report. I was shocked to read that “the infant received oxygen via hood, became cyanotic and expired following 13 ½ hours of life.” Was this a typo? Had the hospital, in their desire to spare us more suffering, simply told us he had died before the fact? I never followed up on this small technicality. From the report:
The kidneys are huge and correspond to the previously mentioned abdominal mass. Each kidney weighs 275 gm and measures 11 x 7×5 cm…The kidney parenchyma has a grapefruit-like appearance. The cortical tissue is tan and pale whereas the medullary columns are pink and distinct. There are minute cysts which give the kidneys a lacy, sponge-like appearance. The cysts are uniform in size and are pinpoint…The heart weighs 40 gm. and is streaked with red hemorrhages which appear to follow the distribution of the coronary vessels.
Although I had not yet discovered poetry at this point in my life, twenty years later I would write a sonnet based on this report, including an imaginary scenario where Matthew’s heart would beat on.
Rich and veined,
your newborn heart was held
for another start. Streaked
with red, vessels snaked up the trellis
of the finished edge.
No thrombi blocked inner
chambers, plush and prepared, nor lungs,
mottled like petals,
that still would not sink.
Your brain intact—temporal lobes
like moons within a hemisphere
gutted of air—and then kidneys,
lacy and huge, with pinpoint cysts
that bloomed in a barren field.
We never held Matthew, never rocked him from this world to the next. Never touched him. Never said our goodbyes. In truth, we gave our consent to the hospital to “take care” of his body, a euphemism for who knows what. We never held a funeral service, nor sat shiva, with torn black fabric pinned to our sleeves. We never planted a tree in Israel. At that time, there was really no special medical protocol that was followed for parents whose babies had died. My room at the hospital was on the same floor as the mothers who had successfully brought their babies to term. Apparently no signs were posted on my door or information made known to the nurse who stopped by the next morning with a tray of cups filled with orange juice and water, and asked if I was breast or bottle feeding.
Months later, after intensive research on the disease at the library at the National Institutes of Health, we found ourselves at Yale-New Haven Hospital, consulting with a doctor known for his cutting edge work in the prenatal diagnosis of infantile polycystic kidney disease. At that time, he had seen seven or eight patients who had all lost their babies shortly after birth to the disease. Four of them ended up with another baby afflicted with the same disease. He said that through the use of modern sonographic technology, he was able to demonstrate the following common findings among these women’s fetuses: (a) abnormally large kidneys, (b) no amniotic fluid in late gestation, (c) no demonstration of fetal bladder activity, and (d) abnormally small uterus. He stated that infantile polycystic kidney disease was a subject “with the most pontificating and the least evidence.” He explained that those afflicted with the disease are “done in” by pulmonary hypoplasia that may or may not be the direct result of a lack of amniotic fluid. Because the kidney layers develop later in pregnancy than other organs, he recommended a screening sonogram at 18 weeks, and another at 23-24 weeks of pregnancy. If we decided to try again.
How could we not? I had grown up in a family with two children, and nothing short of that number seemed right. However, although my husband had two siblings, he was extremely reluctant to put himself through another pregnancy with no guarantee of a healthy baby. We considered adoption and artificial insemination. He suggested waiting. Perhaps we would not have divorced 10 years later, had I acquiesced and given him the time he needed to heal. For me, the only healing I could consider involved having another healthy baby. In the end we decided to take our chances, though we were more circumspect in talking about the pregnancy. If it didn’t work out, at least we would not be blindsided as we had been with Matthew. We voluntarily chose to play baby roulette, and the rest was out of our control.
Unfortunately, the following October, we lost. “Baby Girl Carlson,” as the autopsy report stated, was stillborn. Many years later, I would write:
WHAT CANNOT BE HELD
I might have called her Chayala for life,
but knew her only as shadow and light,
an echo on a sonogram screen,
a preview of a chord I’d never hear.
Her image was gathered from swipes of a probe.
Sifting through layers of tissue and bone,
the trained eye could pick out from fluid’s play
the outline of heart and head, digits that waved
like sea anemones. Different views—
cross-sectional maps—guided the search for clues
to the flaw, knitted in code and handed down
the line. Figure rose from changing ground,
hovered ghost-like and then, reversing roles,
broke up into static that would not hold.
Thirty years ago, we were told that science would eventually locate the gene responsible for infantile polycystic kidney disease, thereby leading to a cure. I have not followed the ongoing research, and only now have done a casual review of the literature. Halvorson, Bremmer, and Jacobs (International Journal of Nephrology and Renovascular Disease, 2010) indicated that ARPKD (autosomal recessive polycystic kidney disease), as it is now called, is caused by any 1 of the 300 currently recognized mutations of the Polycystic Kidney and Hepatic Disease 1 gene (PKHD1), located on chromosome 6p12. Up to one third of all mutations are unique to individual families. These mutations still tend to result in perinatal or neonatal death. Indeed, the authors described the disease as a “currently relentless condition.”
I must admit I have mixed feelings about this news. I imagine if I knew there was now an easy cure, and that babies and parents would be spared this particular birth defect for generations to come, I would rejoice, though still feel a twinge of resentment that this medical breakthrough had come too late for me. Although the estimated incidence of this disease is relatively rare (currently 1 per 20,000 live births, as compared to, say, Down Syndrome, with a prevalence of over 24 per 20,000 live births), many lives would be spared. On a more personal level, with the 1 in 4 chance that my son and daughter may carry the gene, a cure could directly benefit them, in the unlikely event they produced offspring with other carriers of the disease. Undeniably, a cure would give hope to others touched by other birth defects—a number that is quite significant. According to the latest figures from the Centers for Disease Control, 1 out of every 3 babies is born with a birth defect, ranging from cleft palates to spina bifida.
A former French major with an emphasis on existentialism and the theatre of the absurd, I have been infused with the work of such notables as Beckett, Sartre, and Camus. I believe we make our own meaning in this world. For me, completing my family became my highest priority, though at the expense of my marriage. When a couple experiences the loss of a child, it makes intuitive sense that the couple will become closer, having shared a common grief. Unfortunately many couples experience estrangement and conflict, perhaps blaming one another for the loss. Or in our case, holding differing views about what to do next.
On May 2, 1983, my journal indicates that the obstetrician gave us a due date of November 30, 1983. He advised me to wait before taking any over-the-counter antihistamines until after the first twelve weeks of pregnancy. He said jogging was fine, as long as I was not competitive. In June he heard a fetal heartbeat! Also in June, an amniocentesis was performed by a fertility specialist who would later be accused of inseminating countless women with his own sperm, without their knowledge. Fortunately, the sonogram performed at the end of September confirmed well-developed fetal kidneys, though the volume of amniotic fluid was at the upper limits and a prolapsed umbilical cord that could potentially be a problem in labor was reported. By the start of December, the obstetrician confirmed an “irritable” uterus, and told me I should go to the hospital when I said I was in labor.
On December 13, I said I was in labor, and we drove to the hospital. No birthing room for us. No cameras. After 12 1/2 hours of labor and the threat of a C-Section, the doctor returned to the labor room. Right before his eyes, my dilation progressed to 6 centimeters, then 7…, 8…, 9…, with the baby’s head inching from the -2 position to 0…+1…+2….to pushing….to Rachel Priscilla Carlson’s first cry at 9:44 p.m.
It is only later that the doctor tells us he had to remove the umbilical cord from around her neck. It is three decades later that I write the following:
ELEGY IN WHITE
I know the balm of white pine
to stave off despair that rides currents of air
like a hawk. I am singing
burn any clippings of nails
lest they fall into enemy hands,
or stow them away in a crack in the wall.
I have built a stone of sacred stones.
My baby’s been dead
for over three decades, and still
I know no dream charm to stop the rain
that fills the rivers and creeks
and soaks the low-lying earth.
How long can my levee hold?
I see color in whiteness,
in drops of rain that coat the crested ferns.
I did not save his baby teeth,
nor hide them in hollows of trees,
safe from the light of moon or sun.
Birds never wove a nest of his hair.
I am wrapping the pearl of my grief
in a plantain leaf to cast
adrift in the nearest canal.
Nancy Naomi Carlson has received grants from the NEA, the Maryland State Arts Council, and the Arts & Humanities Council of Montgomery County. She has authored 7 titles, including 4 books of translations, one of which was a 2017 CLMP Firecracker Award finalist. Her poems, essays, and translations have appeared or are forthcoming in such journals as APR, GARGOYLE, THE GEORGIA REVIEW, POETRY, and PRAIRIE SCHOONER. www.nancynaomicarlson.com