The Power of Two: A Twin Triumph Over Cystic Fibrosisby Isabel Stenzel Byrnes, Anabel Stenzel
The tragedy of cystic fibrosis has been touchingly recounted before, but this is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their struggle to pursue normal lives while grappling with the realization that they might die young. Their story… See more details below
The tragedy of cystic fibrosis has been touchingly recounted before, but this is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their struggle to pursue normal lives while grappling with the realization that they might die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twins' bicultural heritage-Japanese and German-influenced the way they coped. The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. These two remarkable sisters have much to teach about the power of perseverance-and about the ultimate power of hope.
- University of Missouri Press
- Publication date:
- Edition description:
- Product dimensions:
- 6.10(w) x 9.20(h) x 1.20(d)
- Age Range:
- 14 Years
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The Power of Two
A Twin Triumph over Cystic Fibrosis
By Isabel Stenzel Byrnes, Anabel Stenzel
University of Missouri PressCopyright © 2007The Curators of the University of Missouri
All rights reserved.
One in 1.8 Billion
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 ("Ryoo-tah"), 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.&
Excerpted from The Power of Two by Isabel Stenzel Byrnes. Copyright © 2007 by The Curators of the University of Missouri. Excerpted by permission of University of Missouri Press.
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