The Kissing Bug Page 13

When I met Dr. Marcus in a bookstore’s coffee shop, I thought she looked like my auntie. She had the same long face, an almost pointy chin. Later, a friend said, “When someone you love dies, you see them everywhere.”

  With the blaring of an espresso machine behind us, Dr. Marcus spoke quickly and efficiently. She answered my questions, stopped and waited for the next question. She didn’t banter or crack jokes. She was the period at the end of a sentence. She was clearly someone who got things done, who could be counted on, trusted.

  Dr. Marcus had not planned to see patients on weekends in her home. When she had decided to work on the kissing bug disease, she actually joined a medical research team in South America and did EKGs and echocardiograms on patients with the disease. She learned to look for patients with bifascicular block—interruptions of the electrical impulses that determine how quickly or slowly the heart beats. A patient with that condition who lives in an area where kissing bugs are common most likely has the disease. Back in the States, word spread about her, and colleagues began consulting with Dr. Marcus. Could she see this patient who had tested positive? The person didn’t have insurance. The person spoke only Spanish. Dr. Marcus said, “Yes,” and ordered lab work for patients and paid for it out of pocket. She got hold of the medication, benznidazole, through the CDC, and took responsibility for monitoring the patients because adults can have allergic reactions: skin rashes, numbness in the legs, anemia. A doctor is always needed.

  Dr. Marcus didn’t ask who had health insurance, who was a citizen or not. She saw teenagers and also people in their forties and fifties. She tested to confirm that they did have the disease, and, when they wanted it, she got them medication. One day, her phone rang, and it was Janet’s husband.

  …

  Dr. Marcus’s house had wood floors and corners bathed in light. She spoke to Janet and her husband in Spanish, explaining that they would have to screen Janet again for antibodies to the parasite. She’d have to go to a lab.

  Janet glanced at José. Their savings had dwindled. José was at the hospital every day, not at work. Still, they would find the money.

  José asked, “How much does it cost?”

  “Don’t worry,” Dr. Marcus said. She would pay for it.

  After they left the house, Janet said to her husband, “She’s an angel.”

  …

  The day I first met Janet, she was taking benznidazole and had no complaints. She was grateful to have the medication here in Maryland but also terrified at the thought of ever having another baby. Even if the medicaton reduced the risk of transmission, which it did, she couldn’t bear the thought of having another child infected and in the NICU.

  In the middle of our interview, a cry rang from one of the bedrooms in her home. I barely heard it, but Janet jumped to her feet, and I followed her into the bedroom with her toddler, Junior. Toy cars and diapers covered the top of the dresser. A silent television set hung in the corner. Sunshine poured through the windows.

  Almost nine months old, Baby Luis had a gorgeous long mop of fine black hair, and when Janet picked him up from his crib, he looked startled, as if he had not considered the room from this perspective before. He glanced at me, then turned to his mother. She called him “Papito” and kissed him over and over again. He giggled. Junior jumped up and down on the bed next to the crib. Janet decided to make fresh juice for the boys and put Baby Luis in my arms.

  The baby and I stared at each other. It felt impossible to me that this infant boy had spent months fighting an ancient parasite and had won. He punched the air with his fists and when he opened his mouth, I offered him his lime-green pacifier and he took it.

  CANDACE

  A few months after meeting Janet and her family, I flew to Houston. My interviews with doctors and other experts had led me to a woman named Candace who had contracted T. cruzi from kissing bugs native to Texas. She was one of at least seventy-five people the CDC had identified as having been infected by the insects here in the United States.

  The rains were bad that summer. Historic, actually. Seventeen inches of rain belted Houston, and several people died, some of them trapped after steering their trucks into floodwaters. I was nervous about driving a rental car, but when I made my way west and out of the bumper-to-bumper traffic of the city, I found open skies and land so dry it made me think of the desert.

  The town where Candace lived surprised me. I figured that if she came into contact with a kissing bug in Texas, her home would probably be in the campo, in a rural area with lots of acres. Instead, the town was tucked between Houston and Austin with ranch-style houses, a golf course, and a historic downtown area that elected officials and business owners had spent the last twenty years trying to revitalize. The rec center offered yoga classes for the town’s five thousand residents.

  Candace lived down the road from a country club. In her early fifties, she had a slender frame, silver-blonde hair cut into a long bob, and brilliant blue eyes. She met me at the front door with her friend Debbie, who also happened to be a nurse and had been offering Candace moral support since she was first diagnosed. Of course, their friendship stretched beyond illness. The two were part of a competitive barbecue team.

  “We’re the only all-female barbecue team,” Candace said, hopping onto a stool at the island counter in her kitchen. Their team, Smoking Mamas, competed every year at the local fairgrounds, barbecuing brisket and ribs and pork, and, she told me quite proudly, that they had won third place in ribs the year before.

  The island counter, long and wide, doubled as a kitchen table, and a candle burned at the center. Candace had brought out a black plastic crate in which she kept binders full of information about the kissing bug disease, but she had a different set of worries at the moment. A grandmother of four, she was looking for work. Her last job had been as a safety coordinator at an oil company. She was a straight shooter, and it was easy to picture her monitoring the hours of drivers, keeping them on task, making sure the trucks were licensed and registered. On breaks, she smoked cigarettes nonstop. “I smoke the cheap stuff,” she told me. The day I visited, it was a pack of Golden Bay.

  How was she sure she’d been infected in Texas? I asked if she had traveled much growing up. She shook her head. “I’m a poor girl.”

  Candace told me she had learned about the kissing bug disease in 2014. At the time, she was worried about her mother, who had been diagnosed with leukemia. It felt impossible to Candace that her mother was sick. This was the same woman who had raised four children and worked as a nurse, and, who, a few years before, had paid for a house to be built out in the brush just minutes from here—a home made of pine and cedar and ash wood. Her mother, in other words, was a powerhouse, and now she might die. Candace decided she had to do something.

  She woke up one morning, drove to a church that sponsored a blood drive every few months and donated blood in her mother’s name. She would make an offering of her body. A few weeks later, though, Candace got a letter in the mail from the American Red Cross saying her donation was positive for antibodies to Trypanosoma cruzi.

  Candace was terrified. She walked into her mother’s house, shaken. Mama looked up. The chemotherapy had slowed her down and the steroids had put weight on her frame so that she couldn’t walk well, but she had spent all afternoon researching the kissing bug disease on her iPad, her nursing background helping her make her way through the medical articles. “Don’t worry about it,” she told Candace. “It sounds worse than it is.”

  Instead of feeling afraid, Candace’s mother thought she should be proud. “You have a rare condition,” Mama told her, and she said that doctors in Texas would be able to learn more about the disease from Candace. “You’re somebody special,” Mama insisted.

  As it turned out, the infectious disease specialist Candace saw that week didn’t know about the kissing bug disease. He almost sounded enthusiastic when he told her, “I think you may be the only case in the United States!”

  Candace thought she had
n’t heard him correctly. She wanted to say, “That can’t be right.” She had read about the kissing bug disease online for two days by then. There were other people with the disease in the country, and there had to be other people, like her, who had contracted it from kissing bugs in the United States.

  She tried to shake off her fear. She told herself she wasn’t sick. Her heart felt perfectly fine, and the majority of people with the kissing bug disease don’t ever experience symptoms. She could be one of the lucky ones. Also, she liked junk food and joked with me that she didn’t think the parasite would get her. “My lifestyle will kill me first.”

  When Candace’s infectious disease specialist left the practice and turned her case over to another physician, she pulled her car into the parking lot of the medical center with a certain confidence. She had a rare disease. Doctors would want to talk to her, to know how she felt, what symptoms she was noticing. She marched into the doctor’s office ready to talk.

  The new specialist explained that they would need more blood tests. The CDC would issue benznidazole under compassionate use protocols but to do that, the CDC had to run its own screening tests. Did she have questions?

  Yes, she did. Candace had lived in Texas her whole life. She figured she’d been infected by local insects and that something had to be done. “Shouldn’t I tell my neighbors?” she asked the doctor.

  He looked at her hard and asked, “Do you know who Typhoid Mary was?”

  Candace heard the edge in his voice, and though she couldn’t exactly remember the story of Typhoid Mary, she said she did.

  The doctor continued, “Well, if you want to be her, tell anyone you want. I wouldn’t.”

  Back in her car, Candace typed “Typhoid Mary” into her smartphone. Up popped the story of Mary Mallon, who, in 1907, was connected to a typhoid outbreak at a Long Island home where she had worked as a cook. Mary turned out to be a healthy carrier—a person who is asymptomatic but infected with a microbe dangerous to others.

  I had read about Mary Mallon too. The sanitary engineer who traced the typhoid outbreak in a wealthy family back to Mary didn’t like that she refused to provide him with samples of her urine, blood, and feces. He also didn’t like that she was single, had a dog, and “walked more like a man than a woman.” There was also the issue of her citizenship. Reporters frequently noted in their articles that she was an Irish immigrant. Mary, who could today be called a child migrant, had left Ireland when she was fifteen. She refused to stop working as a cook when public health officials told her she had typhoid, in part because if she didn’t work, she didn’t eat. She became “Typhoid Mary” in the press, the nickname conflating her with germs. Mary didn’t have an infectious disease—she was the disease. The state won the right to lock her up in the name of public health for more than two decades, and Mary died imprisoned in quarantine.

  …

  Candace drove home from that appointment flushed with embarrassment. She had gone from feeling special to an acute sense of shame. The doctor’s voice rang in her head: Do you know who Typhoid Mary was?

  She felt like she had done something wrong, like she was wrong.

  That night, Candace talked to, as she called him, a “gentleman friend.” She was worried about her neighbors. What if they were infected and didn’t know it?

  Her gentleman friend urged her to follow the doctor’s advice. “If you don’t,” he said, worried himself, “you’re going to end up with a brick through your window.”

  …

  Listening to Candace, I remembered how scared my auntie had always been of her friends and neighbors and coworkers finding out that she had the kissing bug disease. We never talked about it, but I understood that she was afraid of becoming a Typhoid Mary, a woman who would be ridiculed or shunned. This was true even though the kissing bug disease is not contagious between people like typhoid or the flu. Most people contract T. cruzi by direct contact with the kissing bug’s feces. It is akin, in this way, to Lyme disease whereby people contract the bacteria from contact with blacklegged ticks. But Americans know about Lyme. The familiar does not terrify.

  Tía Dora saw how Americans reacted in the 1980s to those infected with HIV. The CDC erroneously labeled Haitians a high-risk group, and that community faced discrimination in housing and jobs. Tía also knew about Ryan White, a child with hemophilia A who was infected with HIV by blood transfusions, and she saw the nightly news reports of parents and officials insisting that an HIV-positive child should be kept out of elementary schools. Tía Dora saw how quickly stigma takes hold.

  …

  A search in PubMed, the medical literature database, confirmed my suspicion: Candace was not the first person in Texas to fall victim to a local kissing bug. In 1954, men cleared miles of mesquite trees and brush in Corpus Christi, Texas. The opossums scattered, and the men built new houses, an entire subdivision. Families moved in, and at night, the opossums, with their long pale snouts, returned to scavenge. No one probably thought anything of it. People had other concerns.

  One woman in the neighborhood, a new mom, spent the days thinking about feedings and naps, burps and cries. Her pregnancy had been normal, her baby girl healthy. She and her husband and the baby celebrated their first Christmas that year.

  The mother knew about kissing bugs. Most people in Corpus Christi called them bloodsuckers. It was common knowledge that a kissing bug bite resulted in an awful welt. In the spring of 1955, months after the woman had given birth, the kissing bugs became relentless. They crawled on her husband at night and bit him. He jolted awake, turned on the lights, and chased after them, but the insects managed to flee.

  Still, the kissing bugs returned. They bit her husband on the arm repeatedly, leaving him with at least one welt that grew bigger than a golf ball. By the time summer arrived with those warmer days favored by kissing bugs, the opossums were battling them too. Someone spotted the insects crawling on the carcass of a dead opossum, the bloodsuckers feasting.

  The mother probably did not think of the kissing bugs when her baby, just ten months old, began to run a fever. It persisted longer than a day, so she took her baby to the pediatrician, who found nothing beyond a slightly elevated white blood cell count. Two days later, the baby broke out with a rash on her torso, arms, and legs. Ten days later, she had a slight swelling around one of her eyes. Her white blood cell count shot up. The pediatricians wondered if she had leukemia and decided to look more closely at her blood sample. When they peered into the microscope, they spotted T. cruzi. One parasite, caught in a photograph, swung its long body and its flagellum so that it looked like a question mark.

  …

  Similar to the toddler in Brazil, Berenice, the baby in Corpus Christi survived. Her fever passed. Her heart did not show signs of distress. After all the worry about the parasite, her pediatricians described the case as “somewhat anticlimactic.” They treated the girl with an antibiotic because, in 1955, doctors thought it could cure almost everything. Antibiotics, unfortunately, do not work against T. cruzi.

  If anyone followed up with the mother and her baby in future years, I did not find a record of it in the medical literature. There was also no mention of whether the mother was tested, or the father. The Corpus Christi baby is widely considered the first patient infected by local kissing bugs in the United States since the young Black man from Austin State Hospital was intentionally infected by a researcher.

  A year after the baby was diagnosed, a dermatology journal reported that kissing bugs had attacked at least forty-five people in Fort Worth, about six hours north of Corpus Christi. The insects bit people all over the city, in all sorts of homes and at all “economic levels.” Back in Corpus Christi, the pediatricians who had diagnosed the baby tested five hundred local children, the majority of whom were from poor Latinx families. Seven children were infected, along with two of their adult family members. The children’s parents were farmworkers. The families lived on ranches, and the pediatricians found kissing bugs in their home
s.

  The more I searched for cases of what I would call “homegrown Chagas” the more I found. Researchers screened Native Americans from the Tohono O’odham tribe in Arizona during the seventies and found people infected with T. cruzi. In 1982, kissing bugs in Northern California bit a woman, who ended up with the parasite and a fever. Six of her neighbors had antibodies to the parasite though they were not sick.

  A year later, in 1983, an infant in Corpus Christi was admitted to the Driscoll Children’s Hospital with a fever. The boy, seven months old, refused to nurse. The fever lasted ten days. A chest X-ray showed that the baby’s heart had expanded, an accordion that refused to close. Three days later, his heart had dilated even more. His lungs began to fail. The infant’s heart stopped, but the physicians revived him. His pupils reacted—he appeared alert. Then, the baby’s heart began to beat erratically. His blood pressure dropped. His heart stopped again. He died at seven months old, though no one could say with certainty what had killed him. The doctors attributed the infant’s death to something of “viral origin.” The following year, Violette S. Hnilica, a pathologist, examined slides of the baby’s heart tissue taken during his autopsy and spotted T. cruzi. DNA testing confirmed that it was the parasite.

  When Texas health officials arrived at the family’s home, in the middle of one of the worst winters the state had seen, more than a year had passed. The officials didn’t find any kissing bugs, but they made a lengthy list of all the ways the insects could have sneaked into the house, settled in, and attacked the baby. Holes dotted the walls, and a bird had tucked its nest in the attic (kissing bugs love nests where they can hide during the day). The screen doors didn’t fit their frames. Out back, two chickens scratched at the floors of their cages. The rabbit blinked in hers. The kissing bugs could have fed on them.

  But the health officials wanted to know if the family had traveled to Mexico.

  Perhaps the mother’s shoulders stiffened. Her baby was dead, and now health officials poked at her home and wanted to know about Mexico.