Yesenia was born with congenital heart disease in 2000, a time in Honduras when heart defects meant certain, if not sudden, death for most children. Owing to surgical advances dating back to the 1950s, most children in more resourced countries could by then be diagnosed and treated in a timely manner, significantly improving their chances of long-term survival. In Honduras, however, prior to 2008, there was only one formally trained in-country pediatric cardiologist who could not possibly reach the 1% of children born with this condition, one-third of whom would need surgery within their first year of life. Unsurprisingly, many heart defects escaped notice before it was too late to operate.
Even if children were diagnosed in time, as was Yesenia, options for treatment were limited, if not entirely out of reach. Children could be sent abroad for treatment and care, financed by either their parents or charity organizations, but charity organizations were few in number and highly selective. Alternatively, they could be treated by one of two in-country adult heart surgeons, who periodically operated on less complex pediatric cases, time and supplies permitting, but even this option was prohibitively expensive for most. While medical and surgical care was by law free for patients if provided by government hospitals, persistent supply shortages meant that families typically had to help offset the cost, which could be as much as US$10,000; minimum wage at the time was roughly US$70 per month. While pediatric heart surgery missions were a third option for patients, they visited Honduras only infrequently in the early 2000s, and even then only treated hearts they deemed “operable” with limited medical machinery and supplies. While it is difficult to know exactly how many children in Honduras were known surgical candidates without surgical options, there were likely hundreds. One Honduran pediatric cardiologist I met during my fieldwork in 2011 (by then there were four) had diagnosed over 200 children who needed surgery and she had only been in practice for a year.
Given the complexity of her defect, actually an assemblage of four defects known as tetrology of Fallot, Yesenia would have probably died in infancy had it not been for her especially resourceful mother, Nadia. Upon noticing signs of cyanosis in her daughter, or blue discoloration of the skin due to oxygen loss, Nadia brought Yesenia to the country’s sole pediatric cardiologist in 2000 who made the diagnosis and delivered the news that surgery was needed but locally unavailable. Nadia wasted no time, carrying her infant daughter to a nearby city hosting a medical mission. She insisted that the mission team help, not with a diagnosis or heart medications, but surgery abroad. Two days later, she and Yesenia were en route to the U.S., all expenses paid by a local charity. Yesenia underwent two surgeries within two weeks, the first palliative and the second corrective, otherwise known as a “complete repair.” In 2003, Yesenia returned to the U.S. for a third surgery, this time to have a leaky pulmonary valve removed and replaced with a homograft, a valve from a human cadaver.
The same U.S. surgeon, Dr. Cooper, performed all three of Yesenia’s operations, affording her a continuity of care uncommon for patients who receive surgery as charity. Even more fortuitously, in 2008, Dr. Cooper left his place of employment in the U.S. to work for an NGO that had started deploying pediatric heart surgery missions to Honduras on a quarterly basis. With specialized machinery and a team of clinical volunteers in tow, he was soon visiting Honduras every three months, for two weeks a time, to treat as many patients as possible at no cost to families, and train Honduran surgeons in the latest techniques. Thus, in 2011 and 2012, when Yesenia’s homograft needed to be replaced and later repaired, as tissue implants sometimes do, Dr. Cooper was in country to operate.
I met Nadia and Yesenia, then ages 33 and 11, in 2011, shortly after Yesenia’s fourth surgery. I was in Honduras conducting an ethnographic study of the localized effects of pediatric heart surgery missions. I was curious how high-tech heart procedures were adapted to low-tech hospitals and how children and families experienced and made sense of their new lease on life in a post-coup era. In 2009, a U.S.-backed military coup illegally ousted democratically-elected president, Mel Zelaya, ending a brief period of relative hope and prosperity for poor and marginalized Hondurans. The years that followed became progressively worse for all but the elite, as post-coup governments aggressively defunded public education and healthcare, even stole from these services for personal gain, and promoted extractive industries serving the rich—all the while violently repressing a growing resistance movement. Moreover, gangs and drug trafficking proliferated and increasingly infiltrated all levels government, leading some to name the most recent regime a “narco-dictatorship.” Medical and surgical missions have been largely well received in this context, at least in the early post-coup years, because they give the government a humanitarian face, while simultaneously filling the healthcare gaps created by privatization. In short, I was in Honduras in 2011 and 2012, and again briefly in 2017, to understand what forms of chronic living were produced, or even rendered possible, at the intersection of humanitarian heart surgery, privatized public health and education, violence, and repression.
Yesenia was different than other patients I came to know in 2011 and 2012 because her lease on life, her chance to continue living, was far less novel by then. Unlike children with untreated or recently treated heart defects, whose entire lives had been marked by frequent crises, urgent trips to emergency rooms, and imminent death, Yesenia had grown up with a repaired heart and relatively manageable condition, barring the occasional fainting spell or physical exhaustion. Further, being older than most other patients I met, she was entering young adulthood precisely at a time when avenues for social mobility were increasingly foreclosed for youth, prompting many of her peers to leave the country in search of safety and economic security abroad. In what follows, I explore several themes that speak to her experience of living with a clinically functional heart amid political and social dysfunction and economic precarity.
Pediatric heart surgery can be physically transformative for patients. Children who enter the operating theatre “blue,” or cyanotic, usually return to a healthy shade of pink. Within anywhere from thirty minutes to several hours after leaving the operating theater, they are likely to be awake and breathing on their own; shortly thereafter, they may be playing, coloring, blowing bubbles, or even playing soccer with their surgical scars still fresh and their chest tubes, whose purpose is to drain blood, still inserted.
Following discharge from the hospital, children undergo other dramatic physical changes, such as rapid weight gain or newfound strength to reach developmental milestones, like walking or running, they had long ago missed. Among the families that I came to know, such visible signs of health and vitality nearly always generated new hopes for the future, even when household resources were stretched thin. Children who had been kept out school or sports due to their illnesses or who lived in houses with dirt floors started to re-imagine futures as doctors or football stars. Their hopes contrasted sharply with those of other children I met—even siblings of children with congenital heart disease—who told me that they aspired to be taxi drivers and janitors.
Yesenia was no exception. Although she and Nadia shared a bedroom in a two-family, two-room house in a neighborhood known for gang activity, and almost never left home—not for safety reasons but lack of resources—Yesenia imagined an abundant future. Shortly after we met in 2011, she told me that she would become a doctor, following in the footsteps of Dr. Cooper, and own a beauty salon, where there would be many employees and ample supplies. She also planned to marry someone rich and own a big house and car. Further, although she sometimes felt physically tired, and lamented the fact that it was difficult to dance or play sports, she did not see herself, as she put it, “limited.” That is, even lingering physical symptoms did not cause her concern.
If the ability to live with chronic illness tended to fuel the imagination and amplify hopes for the future, follow-up encounters with humanitarian heart surgery missions necessary to maintain chronicity afforded other advantages. Whenever Yesenia saw Dr. Cooper in Honduras, whether for surgery or monitoring, the clinical volunteers showered her with small gifts, such as coloring books, crayons, pens, pillows, toys, balloons, or new sets of clothes—luxuries by her standards. The volunteers also doted on her more than other patients, nicknaming her “Dr. Cooper’s daughter,” owing to the history they shared. Further, Yesenia’s proximity to Dr. Cooper drew welcome attention, including photographs with him featured on the medical NGO’s website, home visits by me, the resident ethnographer, and a prominent role in a documentary film about Dr. Cooper’s work in Honduras and the patients he treated. Perhaps most extravagantly, Dr. Cooper invited Nadia and Yesenia to speak at a fundraising event in the U.S. to support his humanitarian work abroad. While Yesenia had traveled to the U.S. twice as a child, it was very different to be there as a young adult, let alone an honorary guest. During the visit, Nadia and Yesenia were treated like celebrities. They entered the convention hall to a room full of applause and some tears. They were provided a personal translator and chauffeur for the duration of their stay, along with a US$600 gift card, more than double Nadia’s monthly minimum wage salary. In addition to being hosted in Georgia, where the event was held, Nadia and Yesenia were sent on a short vacation to Disney World in Florida before returning to Honduras.
Yesenia did not see herself as merely the recipient of good fortune. She believed that Dr. Cooper, not the medical NGO for which he worked, had been the first to bring pediatric heart surgery missions to Honduras and that she, his first Honduran patient in the U.S., had been his inspiration. She took pride in this fact, as it made her the conduit to care for hundreds of other Honduran children for whom surgery was otherwise beyond reach. As she explained to me shortly after her fourth surgery, despite some noticeable fatigue, she was “happy—happy to be number one,” that is, happy to have started it all.
As much as chronic living could be fortuitous, an occasion for re-imagined futures, small gifts, visits to Disney World, and fanfare, it was also a relentlessly challenging task, marked by considerable social and medical vulnerability. It is to these less obvious, but arguably more consequential everyday aspects of chronic living that I turn to now.
Public education has been under attack throughout the post-coup era. During my time in Honduras in 2011, public schools were rarely in session because teachers had to frequently take to the streets to protest right-wing attempts to cut their salaries in half, drain retirement funds, remove job security, and pass legislation that invited the involvement of non-profit and for-profit entities. These protests were met with fierce police and military repression, even to the point of death. During my return visit in 2017, little had changed; the specific demands had been modified, but the overall push to de-privatize remained. Even when school has been in session, enrollment is generally low. While technically free to attend, public schools involve costs associated with matriculation, books, uniforms, shoes, backpacks, and other supplies that are prohibitive for some.
Against this backdrop, it is easy to see why Nadia did everything in her power to enroll Yesenia in private school, though not without difficulty and sacrifice. When she was in elementary school, Nadia worked as a private school teacher so that Yesenia could attend at no cost. When she transitioned to high school, Nadia sought assistance from friends and family to continue her private school education, which, at US$42 a month, was beyond her means. Public high school would have been more affordable, but—the battle over privatization aside—it was too dangerous for Yesenia to travel there alone by bus. The homicide rate that year was reported to be at a global high—the highest for a country not at war.
College, then, posed new challenges. After graduation in 2016, Yesenia, then age 17, hoped to attend to the public National University. By then, she had changed her career choice from medicine to microbiology for financial reasons. Medicine is an especially difficult career to pursue given that it requires more years of schooling and thus more associated costs and time without an income. But despite having received a high-quality private school education and spending months preparing, she failed the exam on three separate occasions. Right before she was scheduled to re-take the exam yet again, the exam was canceled on account of more protests, this time by university students. They, too, were protesting ongoing privatization; specifically, they demanded investigation into the entrance exam because it seemed more competitive than ever. They suspected that private universities were paying public university professors to write an especially challenging exam so that more students, at least those who could pay, would be funneled to the private sector. Indeed, Yesenia ultimately abandoned her plans to attend National University, changed her career yet again to laboratory science, which was less prestigious and time intensive, and enrolled in private university. Nadia once again leaned on her network for support.
Even if Yesenia did not see herself as “limited” back in 2011, and even if she was able to start university, it is not hard to imagine that she may have felt limited at times. At least this was Nadia’s interpretation when Yesenia, upon returning from her trip to the U.S. in 2011, collapsed at the international airport. The paramedics arrived, but found Yesenia’s vital signs to be normal. Nadia wondered if perhaps the sharp contrast between the two worlds, Honduras and the U.S., had been too much to reconcile. Perhaps Yesenia had fallen ill in protest of having to re-acclimate to life in Honduras, where there was no Disney World or $600 gift card, no running water in their home because a pipe had broken and the landlord refused to make repairs, and where, in a few weeks, she and her cousins would wrap up their own belongings to place under a Christmas tree, which Nadia would make out of paper, because there was no money to buy new toys or the customary new set of clothes that children received at this time of year in preparation for school.
Dr. Cooper was confident that Yesenia’s 2012 surgery would be her last. Nadia, who was hopeful but less certain, was careful never to miss one of Yesenia’s routine monitoring appointments with one of the locally-based pediatric cardiologists; these appointments were free. In addition, each time that Dr. Cooper was in country, he would bring Yesenia in for an echocardiogram. In 2014, the government opened its first and only pediatric specialty hospital that promised to perform heart surgeries with regularity for poor patients. Its inauguration was considered a game-changer by parents and clinicians alike because it meant more timely diagnoses and surgical repairs, shorter wait times, and more reliable care. Previously, Nadia and Yesenia had sought routine care at a general hospital, although it was not uncommon to arrive at the hospital only to learn that the ultrasound machine was broken or to inadvertently contract a cold or flu due to the sheer amount of patient traffic and limited cleanliness. The specialty hospital, which I visited in 2017, was cleaner, more highly regulated, and equipped with better machinery.
Behind its shiny façade, the new hospital made access to routine care more difficult for Nadia and Yesenia and potentially many others. Although technically public, it was managed by a foundation as part of the government’s latest attempts to privatize health. This was not in the interest of the poorest patients, however, who now had to pay “symbolic” fees for exams, encountered bureaucratic barriers when requesting fee reductions, and risked losing access to care altogether. Patients, for example, had to confirm their appointments in advance and if they confirmed and did not show they received a firm warning; after two missed appointments, they were barred from ever returning. Further, in 2013, Dr. Cooper left the medical NGO that was deploying pediatric heart surgery missions to Honduras and, shortly thereafter, the NGO concluded its work in Honduras altogether. According to the foundation, which now had authority over the country’s pediatric heart surgery program, pediatric heart surgery missions sent by the NGO where Dr. Cooper had once worked were no longer welcome because they were too costly to host.
When I saw Nadia and Yesenia, then ages 39 and 17, during my return visit to Honduras in 2017, it had been nearly two years since Yesenia had received a proper heart exam. At her last appointment at the specialty hospital, the pediatric cardiologist had only done a clinical exam, without an echocardiogram, and concluded that she “looked fine.” This was not reassuring. In 2011, Yesenia had also “looked fine” but the echocardiogram showed a need for surgery. Nadia had requested an echocardiogram at that appointment but the ultrasound machine was in use by a different pediatric heart surgery mission from Costa Rica, a presumably less costly one, in another wing of the hospital. The mission was unable to do Yesenia’s exam and unwilling to return the machine in time for her appointment.
Even more disconcerting, a few years ago, Nadia and Yesenia learned that the valve that Dr. Cooper had placed in 2011, and repaired in 2012, was indeed leaking. It would need to be replaced, although when this would be needed, who would replace it, and how Nadia would afford it were unknown. Heart valves can be expensive, upwards of US$5,000. Now that Yesenia was nearing age 18, she was far less likely to receive assistance from a surgical mission or charity, as most were focused on children, who, relative to adults, have greater humanitarian appeal and present more of an intellectual challenge, which clinicians welcome. Her care was also being transferred from the pediatric specialty hospital to the adult heart and lung hospital, which meant a delay in scheduling her next appointment and loss of her medical chart, which would not follow her there. To get a new heart valve at that hospital, she would need to join the long line of adults waiting for the government to purchase new devices or procure them as donations. I have heard that other young adults have died waiting for heart valve implants.
Returning to my original question, what forms of chronic living are produced, or even rendered possible, at the intersection of humanitarian heart surgery, privatized public health and education, repression, and violence? This snapshot of Yesenia’s life offers some indication. As her story shows, living in this context could be best described as unusually hopeful, incredibly taxing, persistently uncertain, and potentially fatal. It suggests that corrective heart surgery, although usually touted as a child’s best chance for survival, may in fact not guarantee survival for long. Perhaps the cruelest irony is that it is precisely the public health void left by privatization that invites and authorizes the arrival of medical and surgical missions and further endangers the health of patients once those missions disappear, as they inevitably do. This is especially true for missions that allow for chronic living because by definition chronicity requires ongoing medical monitoring and management.
Nancy Worthington is an independent researcher. She is a medical anthropologist with interests encompassing public health, chronic disease, substance use, sexuality and health, and youth and immigration. She received her PhD from the Department of Sociomedical Sciences in Columbia University’s Mailman School of Public Heath.
“Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions” is a series being published alongside the Chronic Living conference, as part of the VITAL project. The series is edited by Ayo Wahlberg, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Heinsen.
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