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The Power of Two
A Twin Triumph over Cystic Fibrosis Updated and Expanded Edition
By Isabel Stenzel Byrnes, Anabel Stenzel University of Missouri Press
Copyright © 2007 The Curators of the University of Missouri
All rights reserved.
ISBN: 978-0-8262-7342-0
CHAPTER 1
One in 1.8 Billion
Isa
When Mama talked to Ana and me about our birth, she would recite the Japanese proverb, "Kafuku wa azanaeru nawa no gotoshi (Luck and misfortune are interwoven together like a rope)." Luck intervened at the divine moment when the zygote split and we became two, yet misfortune lurked in our genes. "This has made our lives more colorful," Mama explained.
Mama's labor pains started six weeks too early, on a chilly January morning in 1972. Our unsuspecting father, Reiner Ludwig Stenzel, was out of town at a physics conference, so our mother, Hatsuko ("Hat-skoh") Arima Stenzel, drove herself the forty-five minutes to Kaiser Hospital on Sunset Boulevard in the heart of Hollywood, California. A few hours before the delivery, a young resident thought he discerned two heartbeats and ordered an X-ray.
The X-ray confirmed twins. Mama's first reaction was disappointment. According to her grandmother in Japan, elegant women had single babies; it was not honorable to have twins because it was animallike. Japanese mothers of twins often hid them or gave one away. But Mama had suspected what was to come. Her firstborn, a son, Ryuta ("Ryootah"), had weighed nearly nine pounds, so she had tried to watch her weight when she became pregnant eleven months after Ryuta was born. But her belly grew and grew.
Mama, always the more cautious of our parents, was more concerned than elated at the news. How would they manage with three babies in diapers? How would they survive financially?
She called our father at his conference to tell him the news. He was thrilled and saw twins as twice the blessing. He knew they would manage somehow. After calling his parents in Germany, he left his conference and came home right away.
Mama said the delivery was easy. "Twin A," Anabel Mariko, or Ana, weighed five pounds. "Twin B," Isabel Yuriko, or Isa, was born two minutes later and weighed half a pound more. After holding the two identical babies, Mama felt pleased. Being a mother of twins would be fun.
But three days later, as Mama prepared to leave the hospital, she and Dad received bad news. Ana had not yet passed her meconium, a newborn's first bowel movement. Her stomach was distended like a watermelon, and the doctors told my parents that she needed emergency surgery to repair the meconium ileus, or bowel blockage. Although Ana had only a fifty-fifty chance of surviving the procedure, without it she could suffer an intestinal rupture, which would cause an infection, and die.
Mama visited the nursery before Ana's surgery. As she held Ana in a tight embrace, she sobbed uncontrollably at the thought of losing her. She prayed to God that he would not take away her baby and promised to do anything to protect her. She told me she cried harder when she saw me in the next incubator and imagined my life without my twin.
Ana survived the surgery, but the blockage caused her paper-thin intestine to burst, and the surgeon could not fully seal the damaged openings. His attempts left a reckless incision across her entire abdomen. Ana was fixed with a colostomy bag, an external plastic pouch, which collected her stools for twelve months.
Because meconium ileus is a hallmark of cystic fibrosis (CF), the neonatal physician and director of Kaiser's Special Problems Clinic, Dr. Patrick Robbie, was asked to consult with my parents. Dr. Robbie was a stocky Irish American who resembled Santa Claus, although his demeanor was often stern and paternalistic instead of jolly and generous. He told my parents he suspected that Ana had this serious genetic disease. Since we were twins, he wanted to perform a sweat test on both of us, which, if abnormal, would prove CF.
Ana and I were wrapped in plastic, and, as our tiny bodies began to perspire, beads of our sweat were collected in small vials.
The "sweat test" demonstrated that both Ana and I had sodium chloride levels twice the level normally found in healthy children, and our diagnosis was confirmed. Dr. Robbie informed our parents that CF was a uniformly fatal disease and that we would be lucky if we reached our tenth birthday.
He explained that CF is an autosomal recessive genetic disease, meaning that both parents must carry the gene and, if they do, they have a one-in-four chance of having a child with CF with each pregnancy. CF is most common in people of Northern European descent; about one in twenty-five carries the gene. In Japanese, or any Asians, though, CF is extremely rare. At the time, the data showed that only one in ninety thousand Asians carried the CF gene.
My father, a physicist, loved statistics. He quickly did the math: with one-in-two-hundred odds of having identical twins, the odds of having half-Japanese twins with CF were roughly one in 1.8 billion.
Dr. Robbie gave Mama an article on cystic fibrosis from a Japanese journal and a pamphlet written in English. Upon first glance at the article, Mama read that in the few cases of Japanese CF infants, all had died within the first few months of life. As they left the consultation, Dr. Robbie told my parents, "You are in this together. You will have to work very hard to keep your twins alive."
My parents visited a local library, where, in a trancelike state, they pored over all the information they could find about CF. They read that it was a relatively newly discovered disease, having been first reported in 1938 by Dorothy Andersen in New York City. The basic CF defect, which affects approximately one in twenty-five hundred Caucasian children in the United States, involves an abnormal transport of salt and water across epithelial cells in the lungs, digestive tract, and sweat glands. CF patients lose a large amount of salt in their sweat, the basis for the German proverb, "The child will soon die whose forehead tastes salty when kissed." The salt imbalance leads to the production of thick, sticky mucus that blocks the airways of the lungs and the pancreatic ducts in the digestive tract, among other passages. The thick secretions in the lungs harbor bacteria that cause chronic, progressive lung infections and, eventually, lung failure. The blocked ducts in the pancreas lead to malabsorption, nutritional deficiencies, and in later life, diabetes.
It would be seventeen years after our birth before scientists discovered that a gene mutation on chromosome seven created an altered protein that prevented salt and water from passing through the cells normally, causing this subtle yet deadly defect. It would be thirty-five years after our birth that California would start screening all newborns for CF, to detect and treat babies early on.
Before we were born, my parents had never heard of CF. My German father and Japanese mother knew that many relatives in their war-torn countries had died of pneumonia and diarrhea, two classic symptoms of CF, but they never could be sure if CF had run in their families. Mama tried to make sense of why she would have such a rare gene. Later, she told us that she had called her mother in Japan after our diagnosis and asked her if she had any Caucasian ancestors. Our grandmother reacted defensively. "Of course, not, Hatsuko. We are pure Japanese! Maybe the gene is from your father's side. He lost seven of his eleven siblings, you know. Many died of pneumonia. But I am from the Honda clan, and we are an honorable family of pure Samurai blood."
After our diagnosis, a negative sweat test confirmed that Ryuta was perfectly healthy. Ryuta's chubbiness epitomized health, and he even won second place in Santa Monica's "Biggest Baby Contest" in 1970. Firm, stocky legs and round cheeks obscured his half-Asian features. His Japanese name, which translates to "big and strong," fit him well.
I stayed in the hospital for six weeks and came home before my sister. Mama breast-fed me, learned to give me medications, and bathed and changed me. She managed all this while chasing Ryuta and still visiting Ana at Kaiser. She and Dad prepared the nursery for two. Ana came home six weeks later, having recovered from her surgery. Twenty-one-month-old Ryuta asked Mama, "More babies come home?"
"No, Ryu-chan. There are only two," she replied and hugged him, relieved that at least her son would not die young.
Mama often told us how much she struggled in the first few months after we were born. Whether she did it to vent, to validate her own strength in overcoming adversity, or to instill guilt in us, she repeated her stories often: how we'd wake up several times a night; how when one of us started crying, the other followed, competing in decibels for her attention; how Ana's colostomy bag often came undone, and watery stool smeared all over Ana and the bedding; how the smell of the nursery stung her nostrils (loose, foul-smelling stools are diagnostic criteria for CF); how our shrill, deafening cries of hunger would crescendo as she scrambled to add powdered digestive enzymes to our bottles of formula; how we gained weight so slowly—even if we ate voraciously—that it took over a year for each of us to reach ten pounds.
Mama felt more like a nurse than a mother, with laundry, medications, doctor's visits, changing and bathing consuming her while we provided little affection in return. Most of all, she told us how she had to dismiss Ryuta's cries for attention because she was too occupied with and exhausted by our needs.
Dad helped when he could. The pressures of his academic career at that time forced him to work two jobs—one in plasma physics as an assistant professor at the University of California, Los Angeles (UCLA), and one at a technical research company. He was in charge of dropping Ryuta off and picking him up from day care. Obsessed by his work, he once forgot to pick up Ryuta. That was just the beginning of Mama's resentment that he did not do enough for the family.
After several months, Mama recorded a tearful plea for help and mailed the cassette tape to her mother. My grandmother, whom we called Obachan, took a leave of absence from her job in Tokyo and came to Los Angeles to become our second caregiver. Often she cared for Ryuta while Mama tended to us twins. Obachan changed our diapers, fed us, and bathed us. Her presence that year lifted my mother's spirits. She had someone with whom she could speak Japanese and share her fears.
"I don't know why we have such bad luck," Mama said to Obachan one day as they changed our diapers again. Mama changed Ana's, since it had to be sealed carefully so as to not disturb the colostomy bag.
"This is not bad luck," Obachan replied. "You must find joy from these beautiful babies. Whatever challenge awaits you will only make you stronger. That is what I learned from my life."
Obachan stayed with us until we were one year old; then she returned to Tokyo, but she returned every summer to help Mama care for us as we became active toddlers. She taught us our first words in Japanese and prepared Japanese foods that became our first solids. "I always changed your diaper first and Ana-chan would get so upset," she would tell me years later, "because changing her bag was more complicated." Alongside a less-stressed mother, Obachan nurtured us with affection.
When we were older, Mama told us how, in those early days, she had wondered why fate had given her this challenge. Her mother's presence reminded her of her former life in Japan, which seemed so distant, though only eight years had passed since she had arrived in America to study. She had never imagined her decision to come to America and marry my father would lead to raising sick children. Her dreams of graduate school were shattered, and the future seemed bleak. She loved her babies intensely and wanted to give them everything she had, but she still dreaded the growing burden they would be. Caring for the twins was so much work, she often thought, and they would die young anyway.
Beside Mama's bed sat a faded brown photo of her father, Sukehisa Arima, standing beside his wife, our grandmother, Tazuko, and their four children. As a child I often gazed at my grandfather's narrow face, his wire-rimmed glasses, and his formal western-style suit. Mama said this was the last photograph taken before he was drafted into the Japanese army in May 1945. Her family lived in Manchuria, China, conquered by Japan, where Sukehisa worked at a Japanese bank. He survived the war but was sent by the Russians to a prisoner-of-war camp in Siberia. His clothes were stolen while he was taking a bath. He caught pneumonia as a result and died in December 1945. Mama told us how Obachan struggled to raise her children all alone. The oldest, Juichi, was eight, and the youngest, Sukeyoshi, was only six months old when their father died. Mama had to be strong like her mother.
Although Mama and Dad were from different worlds, they shared a youthful spirit and ambitious dreams of freedom and adventure far from home, in America. They remembered their impressions as children of the American soldiers who had occupied Japan and Germany after the war. Mama remembered the Hershey's chocolates that GIs had given her; Dad recalled an American soldier who had saved his life by snatching a clumsy five-year-old from the path of a racing U.S. military police jeep in 1945.
After the atomic bomb was dropped on Hiroshima in August 1945, the Japanese surrendered, and our grandmother fled Manchuria with her children. The family traveled on foot through Korea until they reached the Sea of Japan, where Japanese boats waited. The journey took months, and they often had to walk at night to decrease their visibility among the antagonistic Korean and Chinese civilians. Mama recalled dodging stones thrown by people who hated her because she was Japanese. Even after returning to Japan, Obachan was often ridiculed for being hikiagesha, a refugee from a defeated imperial colony. Only the American soldiers had shown her kindness.
After the war, Obachan opened and managed a successful inn outside of Tokyo on property her mother owned. Visitors from America befriended the Arima family in the late 1950s and invited Mama to study in the States. Obachan agreed to let Mama go to America, but only if her oldest brother, Juichi, accompanied her. Mama had just finished her undergraduate studies in psychology at Waseda University and was ready for a change. After being accepted into a master's degree program in child development at Pacific Oaks College in Pasadena, California, she boarded a ship bound for America in the summer of 1964. Juichi, also on board, would continue on from the West Coast to Detroit, where he planned to study design.
A year later, on a different continent, Dad was making plans to come to America. He had received an engineering degree from Braunschweig University in Germany and been offered a scholarship to study in the United States. He was accepted for graduate studies at the California Institute of Technology, also in Pasadena, California. He told us that after traveling by propeller airplane across the Atlantic to New York, his first vision of America was the skyline of Manhattan and Lady Liberty. A seventy-two-hour bus trip brought him to Los Angeles. Restless by nature, he sat in the bus watching the American countryside, admiring the open spaces of the Midwest and wondering what this new land would offer him. When he arrived in Los Angeles, the Watts riots were erupting, and he was shocked by the racial tension, protests, and police barricades. He later told us, "It was the true Wild West."
Dad met Mama at a Rotary Club-sponsored party for international students. Mama was wooed by Dad's romantic and gentleman-like qualities and his handsome, sharp features. His slight build made him look like a high school student, and his shy, sweet, and well-mannered intellectualism charmed her. She was also impressed with his drive, ability to fix things, and love of nature and hiking. Mama was a petite woman with a round face whose narrow smile tamed her thick, wiry Betty Boop hair. She always had a cheerful smile. An aura of clueless confusion made her vulnerable; Dad prided himself on teaching her things. He admired her skills as a cook, her sociability, and her generous, helpful nature. Their relationship quickly became serious.
Dad proposed in 1966, and although Mama tentatively accepted his proposal, she remained ambivalent about their relationship. She didn't know what it meant to be in love or if he was the one. His tendencies to become absorbed in his studies and to respond to her intimate questions with an uncomfortable laugh made her wonder if he could meet her needs. She also worried about whether an interracial marriage would work. Interracial marriage was still controversial; it was illegal in seventeen states until 1967, when the Supreme Court declared those state bans unconstitutional. Fatherless and living with three brothers who couldn't understand her had created a desperate yearning within Mama to find a man who would listen, appreciate, and love her.
(Continues...)
Excerpted from The Power of Two by Isabel Stenzel Byrnes, Anabel Stenzel. Copyright © 2007 The Curators of the University of Missouri. Excerpted by permission of University of Missouri Press.
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