Six months in a hospital in England, then home to Cincinnati with a subtly new face and the determination to squeeze the GI Bill for all it was worth. He racked up a CPA degree and dated a little—but being shot in the face doesn’t leave a fellow feeling attractive. His sister Ruth just happened to have this friend, a sparkling friend who flirted away Jerry’s shyness.
And then—and then, he was married. To a knockout nine years his junior. In silent, black-and-white footage of their wedding, Jerry is levitating while Carole’s hands fly and flutter like the spread wings of birds.
January 2, 1955
But then Carole started losing babies, and sorrow piled up behind her eyes.
* * *
—
Jerry nearly drove up on the sidewalk in his haste to reach the emergency room. The man was usually a bundle of worried tics, gasps, and pronouncements, but he tried crooning Don’t worry, honey, don’t worry don’t worry. Silently he told the baby, You show up now, kid, or I’m coming in to get you, as his wife’s gurney disappeared behind the swinging OR doors.
Labor is labor, hours of pain, but it was a pain Carole welcomed, because every other pregnancy so far had ended with a faster agony and no one to hold. At 6:04 in the morning, the baby was born.
Then all was confusion. Doctors and nurses ran around the room, calling for equipment, as the baby screamed in a way that surpassed the normal trauma of air and bright light. Carole demanded to see the baby, but they’d taken it to a far table.
The baby. Boy? Girl? No one could tell. Carole was told that the lower half of its body was encased in adhesions. The amnion—the inner layer of the placental wall—had adhered to the baby’s skin and formed swathes like a mummy’s bandages. These had affixed the baby to Carole’s uterus, as if her body was trying to keep the child inside the maternal fortress. As if preparing dressings for the surgeries that lay ahead. As if knowing that mother and child would never be much good at separation.
* * *
—
A nurse stepped away, and there it was, her genderless, shrieking infant—an infant with a grotesque red sac protruding from its back. Then Carole knew exactly what the obstetrician was about to say: her baby had spina bifida.
Carole had seen these children for years. Up until this bed-rest pregnancy, she’d been a medical researcher at Cincinnati Children’s Hospital, where she’d worked for Josef Warkany, an Austrian physician who had established the field of teratology in America (teratology, from the Greek teratos, or “monster,” is the medical term for the study of birth defects). Warkany revolutionized the medical understanding of the origin of impairments. Among these, spina bifida was one of the most common and the most commonly fatal.*2
In 1958, no one knew what caused spina bifida, only that it fell within the category of congenital conditions known as neural tube defects. The words spina bifida mean “split spine”: when a fetus is in utero, the bones and casing around the spinal cord are supposed to fuse and create a tube that houses and protects the spinal cord. If these parts fail to fuse, they leave an open fissure—a lesion—somewhere along the length of the spine, anywhere from the skull to the sacrum. A literal hole in the body. As a consequence, any pathogen entering that hole has access to the brain.
Spina bifida babies are born open to the world.
* * *
—
There are different severities of the condition. The mildest cases, “spina bifida occulta,” are those in which the spine remains closed, with minor malformation of one or more vertebrae. This causes little or no injury; often, from the outside, Carole could scarcely tell that anything was wrong with those children.
The most affected are those with spina bifida myelomeningocele, a condition in which a loop of spinal cord protrudes all the way outside the body. The cord is typically embedded in a bulging red sac like a gruesome birthday balloon.
That red sac now protruded from the middle of her newborn’s back.
Over 90 percent of such children died before they were two years old. Prevailing medical opinion was that surgeons should leave these children alone until they reached the age of two. If they survived that long, they were strong enough for treatment, but otherwise, they were a waste of medical resources. Parents were advised to cherish their babies for the short time they had. Josef Warkany disagreed with this “ethic.”
Carole had never imagined her own child on Warkany’s examination table.
* * *
—
The baby actually had a decent weight for a preemie, so an ambulance took it directly across Burnet Avenue to Cincinnati Children’s Hospital. Carole’s obstetrician let Jerry push his wife across Burnet in a wheelchair plastered with JEWISH HOSPITAL decals. It was a cold day under a cloudy pewter-gray sky; the wind found the edges of her robe as Carole left one hospital and entered the next.
Carole prayed for a surgeon who wouldn’t wait until that impossible second birthday, and indeed, they were in luck. Children’s had just hired a young, Harvard-trained surgeon named Lester Martin. He was soap-opera handsome—but more to the point, freshly trained in the latest techniques to close a spina bifida lesion.
The breach was between the fourth and fifth lumbar vertebrae, those being the bones at the waistline, between rib cage and pelvis. A lipoma—a fatty tumor—was wrapped around the cord, making the repair exponentially more difficult. Lester Martin cut away the tumorous sac and eased the spinal cord back into the canal, sutured the edges of the dura mater, and crisscrossed the muscles of the back into their proper place. The stitches barely held together in the petal-thin skin of a newborn.
* * *
—
Jerry and Carole sat in the waiting room, hands gripped in a sailor’s knot of fingers. They’d picked out names, but what does one call a new person whose genitals are hidden in a shroud? A contingent of Lehrers and Horwitzes had filled the waiting room by the time a surgical resident stepped out of the OR and said, “Your daughter is hanging in there. So far, so good.” It seemed that Dr. Martin had removed enough adhesions to reveal her sex.
Jerry cleared his throat. “We’re naming her Riva Beth Joan. Rivka Brina Yocheved.” As always, English name first, then Hebrew name. They were naming the baby after her great-grandmother Riva Brina Numark and great-grandfather Joseph Lehrer. Ashkenazi families pull their children’s names from the afterlife; children begin life as the phantoms of people they will never meet.*3
Everyone in the room understood why she’d been given so many names. In Jewish folklore, the Angel of Death is rather stupid. He wanders the world with his clipboard and paperwork, seeking his victims by name. If a baby is born with an illness, you give it multiple names. This confuses the angel, who scratches his flaming skin and says, “Who is this? Riva? Brina? I don’t know. Guess I’ll come back later.” Lucky for all concerned, even God can’t get good help.