The Kissing Bug Page 12
Now Janet had doctor’s orders to rest until the baby arrived, but she didn’t know how she was supposed to be on bed rest and taking care of a toddler at the same time. She spent the morning moving between Junior and the sofa. She gave him a bottle of milk and went back to the sofa. She changed his diaper and returned to the sofa. Then, the contractions started. The pain ripped across her back and her belly.
José called every half hour to check in. “I’m having pain,” she said.
“Do you want me to come home?”
“No, I’m okay.”
By eleven, the contractions came with furious intensity. She phoned José and said, “I have to go to the hospital.”
…
In the emergency room, the overhead lights jumped at Janet, and so did the English questions. José stayed in the waiting room with Junior because toddlers were not allowed into the exam room. Janet kept her cell phone on so he could hear everything the staff was saying and interpret. After the nurse left and Janet hung up the phone, she closed her eyes. A wetness ran between her legs, the liquid warm against her thighs. It turned into a river. Where was everyone?
A nurse appeared. Janet whispered, “Everything’s wet.” She could feel the gurney’s mattress soaked beneath her, but felt too weak to move. The nurse lifted the hospital sheet, then immediately dropped it and ran from the room. Janet was hemorrhaging. Nurses and doctors arrived frantic. All Janet could think of was her baby, that the doctors needed to save her baby, that her body mattered only to the degree that it held her baby. Her body was a purse she could mend later.
The baby had begun to leave her, the placenta peeling away.
In the operating room, a nurse cradled Janet’s head and murmured, “You’re okay, Mami. You’re okay.”
Janet didn’t answer. She closed her eyes. She couldn’t be having the baby. It was too early.
The nurse rubbed her cheek. “Stay awake, Mami. Stay awake.”
…
Luis was born at thirty weeks during an emergency cesarean, weighing less than four pounds. Janet struggled to keep her eyes open. Her head felt like a rock she couldn’t move. A pair of gloved hands pressed the baby to her left cheek. She felt him, her baby, a wisp of warm skin, and then he was gone.
Just then José arrived in the operating room. A nurse held the newborn up to him and said, “Give your baby a kiss,” but José flinched. His baby was completely covered in hair, the skin almost too long for his bones.
The nurses rushed the baby away, placing him in an incubator. A white coat brought out a tube and inserted it into the baby’s windpipe, connecting him to a ventilator.
Four days later, Baby Luis was not better. The physicians thought he might have fetal hydrops, a condition that can be fatal, in which fluid builds up in the infant’s body. They moved the baby to the neonatal intensive care unit at another hospital. There, the physicians had him tested for HIV. The result, like Janet’s, was negative. They tested him for syphilis, toxoplasmosis, and a virus that causes the “slapped cheek” rash. All came back negative.
Frantic, Janet called her mother and sisters in South America. She phoned her father-in-law too. He was a retired doctor; maybe he would have something to say. He did. “It has to be Chagas,” he said.
Janet knew about the kissing bug disease. In her hometown in South America, people called the insect vinchuca, and when she was young, she’d wake up with bumps on her body—an allergic reaction to the insects’ bites. It was impossible for her mother to keep the kissing bugs out of their house. “If you don’t have them, your neighbor has them,” she told me. But she talked about kissing bugs the way Americans speak of ticks. They were awful but not a crisis. “You’re not alarmed about it because everyone has them.”
When her father-in-law said the baby might have the kissing bug disease, Janet hesitated. She thought only adults developed the disease. Her father had been diagnosed when he started having heart problems later in his life, and he was dead now. Her sister had tested positive, too, and she had needed a pacemaker for years, but the device cost $15,000. Who had that kind of money? To Janet, the kissing bug disease happened to grown men and women, not newborns.
Her father-in-law argued that kissing bugs were common where she grew up, and Janet’s repeated exposure to them as a child probably meant she had T. cruzi in her body and just didn’t know that she was infected and had passed the parasite to her baby.
He had a point. While the percentage of children born with the congenital form of the kissing bug disease varies across Latin America between 5 and 10 percent, in one area of Janet’s home country, a study estimated that about 7 percent of the babies born there to mothers infected with T. cruzi also have the parasite.
Janet was still dubious. She had always been healthy, never even catching colds, and her first pregnancy had been a normal one. How could she have a parasite in her body? Worse, how could she have passed it to her baby? How could she have made him sick?
…
When Janet told me that she thought of the kissing bug disease as one that only happened to adults, I realized I had thought the same. Tía Dora had been almost thirty when she first got sick. Neither Janet or I associated the disease with babies or children because the parasite can stay dormant in the body for decades, often up to thirty years. At a conference on tropical medicine, I had heard the Argentinian physician Jaime Altcheh argue that the kissing bug disease should be considered a pediatric illness. “Every adult with Chagas is a child who was not treated,” he said.
…
In the NICU, so many tubes spiraled around Janet’s baby that he looked suspended in a spider’s web. A machine made his breathing possible. Somehow, despite weighing only four pounds, he had plenty of hair, as if a thousand black eyelashes covered him.
Every day, Janet spoke to him energetically in Spanish while he slept in the incubator: “You’re strong, papito. You have to fight.”
Janet always went in first. The visit was forty-five minutes. Then a break. Then it would be José’s turn. Junior couldn’t go in. She and José took turns walking him around the hospital. Janet didn’t know what she ate for lunch or dinner. The hours crowded in her mind and lost all shape. Outside the NICU, she could cry. Inside the NICU, she forced a smile. Everything she felt, her baby would feel. Everything she said, her baby would hear. She told him over and over again, “You have to fight, papito.”
At night, when the awful hour came to say goodbye, she crooned to him, “Mami and Papi are leaving now, but the nurses are going to take good care of you.”
She turned to the nurse and said in Spanish, “I’m leaving him in your care.”
Janet knew the woman did her job well, and she was grateful, but she hoped her words would tap at the woman’s heart—that she would take care of Luis as if he were her baby.
More than two weeks passed. The hospital’s technicians had found cysts in the placenta filled with multiple unknown microorganisms, but the tests for leishmaniasis and other diseases came back negative. CDC officials said they would need blood samples from the baby and Janet.
The physicians, meanwhile, studied pictures of the baby’s heart. The echocardiogram showed that his right ventricle, which sends blood to the lungs, was smaller than normal. So was the tricuspid valve, which keeps blood in that ventricle from backing up. The doctors continued searching and found more evidence that something had gone wrong during Janet’s pregnancy.
Tissue in the baby’s heart had died.
…
The day the medical staff collected a blood sample from Janet’s baby, Donald Trump put on a tie the color of red carnations and a suit jacket too large for him. It was the Tuesday before Father’s Day in 2015, and the day Trump declared his run for the presidency in what later became known as his “Mexicans are rapists” speech.
Trump’s words did not offend Janet. She had come to the United States legally. She saw herself and her husband not like the immigrants that Trump warned about in his speech
, but rather like the blue-collar white Americans he spoke of—the women and men who were working hard and struggling to make ends meet.
A week after that speech, the results came back from the CDC. Baby Luis had the kissing bug disease. Janet did too. Her toddler tested negative.
…
Stained and magnified a thousand times in a photograph, the T. cruzi from Luis’s blood sample appeared like the eels with Mohawks, curled alongside violet globes—his blood cells. The parasite had burst from a dying cell in Luis’s premature body, and with its flagellum, it was on the move, looking for new cells to invade. The parasite had already reached his heart, where it had destroyed cells in the right ventricle and left behind scar tissue.
The good news was that Baby Luis would not be lost. The parasite had been found. He could be treated. This made him only the second official case on record with the CDC of a baby infected with the kissing bug disease during pregnancy in the United States. Luis had avoided the fate of the lost babies who are never tested and identified.
When the American College of Obstetricians and Gynecologists teamed up in 2008 with the CDC to survey the organization’s members about the kissing bug disease, they pointedly asked physicians whether a mother could pass T. cruzi on to her baby, regardless of whether she had been infected during the pregnancy or years before. The correct answer is yes, but 84 percent of obstetricians and gynecologists said “I don’t know.” The survey’s authors observed, “The most common response to our survey questions was ‘I don’t know.’” It was a disturbing outcome considering that almost seven hundred thousand babies are born every year in the United States to mothers from South America, Central America, and Mexico.
In 2006, the federal government convened a panel of experts to establish guidelines for states to screen newborns, and the group recommended that twenty-nine diseases be mandated for screening, including hearing loss, cystic fibrosis, and sickle cell anemia. The kissing bug disease did not make the list, but not because it doesn’t occur often. Newborns are screened for fifteen diseases that occur less frequently than the kissing bug disease. Eileen Stillwaggon, an economist at Gettysburg College, and her colleagues found that it is ten times cheaper to screen and treat newborns and their moms for the kissing bug disease than to cover all the costs related to children and their mothers having the disease.
I thought of places like Los Angeles and Miami; Chicago and Houston; the Washington, DC, area and New York City; places where high numbers of Latinx families live. I thought of the less obvious places all over the South like Siler City, a rural town in North Carolina, where 43 percent of people are from Latinx families. How many babies in these places had the kissing bug disease?
One particular group of lost babies stood out to me: the girls.
A girl infected with the kissing bug disease, like Janet, can grow up to pass the parasite to her children during pregnancy. In these cases, the parasite does not need the kissing bug. It hijacks the girl’s body—she becomes the carrier.
LA DOCTORA
When Janet and I met, it had been only nine months since her baby was born during an emergency C-section. She did not use the baby’s name, Luis, instead calling him “the baby” and “my baby,” and I found myself doing the same. “The baby. Your baby.” The short possessive pronoun and article in front of “baby” felt urgent—a way to pin the premature boy to this world and to Janet.
Every morning that her baby was in the NICU, Janet and her husband rushed to the hospital and stayed there until the sky turned black and waited for news of when he would be treated. It was the summer of 2015. The FDA had not approved benznidazole for use in the United States, so the baby’s pediatricians had to secure the drug under specific protocols from the CDC. Finally, the drug did arrive, and the physicians started to treat him.
And Janet? She did not have health insurance through an employer. She was not signed up for Obamacare. She had a green card but had not been in the country for five years, the amount of time needed to qualify for Medicaid. She was able to give birth at the Maryland hospital because most states make an exception to cover the costs of prenatal care and labor and delivery for uninsured mothers who don’t qualify for Medicaid.
With health insurance, Janet would have immediately seen an infectious disease specialist who would have contacted the CDC about a course of treatment with benznidazole or nifurtimox. She would have started on medication because while the kissing bug disease in its chronic form cannot be cured, drugs can lower how much of the parasite exists in the body. It would have also helped to prevent her from passing the parasite during a future pregnancy if she and her husband wanted more children. And with health insurance, Janet would have started seeing a cardiologist every year to monitor her heart for symptoms of the parasite’s impact.
But she did not have insurance so she and José knew they would pay out of pocket for a consultation. Someone on the hospital’s staff gave them a list of infectious disease specialists, and he began calling. One was a wrong number. He called the next one. That physician’s office didn’t know what Chagas disease was. José was unsure if they understood his accented English. Every phone number on the list left him empty-handed.
Janet said, “Claro, here it must be new and unusual” for the doctors, but she also felt desperate. She wanted to start treatment. She wanted to be healthy. She wanted to be ready for her baby because she was sure, absolutely sure, that he would be coming home with her.
…
I phoned Robert Gilman at the Johns Hopkins Bloomberg School of Public Health. He had been working on infectious diseases and public health for decades in South America, and I wanted to know why so few American doctors knew about the kissing bug disease. He said it was simple. “Thirty years ago when I started practicing in Baltimore, if I saw one Hispanic a month, that was a lot,” Dr. Gilman said. “Now it’s all Hispanic. The medical schools haven’t kept up.”
In 1981, when I was six years old and first translating for my auntie about the kissing bug disease, the United States was home to 15 million people from Latin America. By 2015, when Janet’s baby was born, that number had reached 57.5 million.
Medical schools in the United States have also lagged behind in teaching about parasites like T. cruzi. In the 1970s, Dickson Despommier started teaching a course on parasitic diseases for second-year medical students at Columbia University. He retired in 2009 and started the educational organization he named, with all humor intended, Parasites Without Borders. Most medical schools don’t offer a parasitic disease course, Professor Despommier told me. That’s partly because medical students won’t pursue working on such diseases. They opt for specialties that pay well. “I can’t argue with that,” he told me. “You paid $240,000 to go through medical school, and now you have to pay that back in ten years. That’s a daunting task.”
Professor Despommier admitted that he didn’t teach about the kissing bug disease in his course. He had about eleven three-hour lectures into which he had to pack all parasitic diseases, and he chose to teach about the kissing bug disease’s cousin, sleeping sickness, on account, he said, of the vastness of the African continent and the impact the disease has on the economies there.
…
Janet phoned her father-in-law in South America to tell him they had not found a doctor for her. “Come here,” he urged. “We’ll do the treatment.” But Janet was not going to leave her baby, especially not as he began a new regimen of medication.
The pediatricians counted the days. Luis was almost a month old when they started his treatment with benznidazole. Two weeks later, the parasite was still circulating in his body. Three weeks later the first good sign came. The baby’s body was free of the parasite. Janet thanked god. She thanked the doctors. She thanked the nurses. She wanted to bring her baby home. They said it would be soon. They said there was no reason her baby shouldn’t have a normal life. He had scar tissue on his heart from the parasite, but his heart was otherwise healthy.
…
When Rachel Marcus heard from a fellow cardiologist that a baby had been born with the kissing bug disease in the Washington, DC, area, she immediately offered to help. A cardiologist by training, Dr. Marcus had given up her private practice in 2012 to focus on public health and specifically on patients with the kissing bug disease. Three years later, she had cofounded an advocacy organization called the Latin American Society of Chagas (LASOCHA). Her cofounder, Jenny Sanchez, is a Chagas advocate whose mother was diagnosed with the disease. The two-women operation teamed up with South American embassies in Washington, DC, to screen people for the disease, and eventually Dr. Marcus started a biweekly program, offering testing and cardiac monitoring at health clinics around the city. In 2015, though, she did not have the clinics. Patients knew her as La Doctora. La Doctora would see them at home. La Doctora carried a portable EKG machine. La Doctora didn’t charge.
Now there was Janet. Dr. Marcus told the hospital staff that she’d be happy to see her, but they were confident that they could find an infectious disease specialist for Janet. How hard could it be?
Months later, someone from the staff called Dr. Marcus. Janet and her husband had not found a specialist. Maybe it was the language barrier. Maybe it was the lack of health insurance. Fortunately, Dr. Marcus spoke Spanish, and she didn’t care about insurance. When José phoned her and asked if they could make an appointment, Dr. Marcus said, “Yes.”
Relieved, José asked when. Dr. Marcus suggested Sunday and gave him her home address.
Janet and José had never heard of an American doctor seeing patients in her house, let alone on the weekend. But they wanted to be hopeful.
…