Born with a heart malformation: The children forgotten by the Mexican health system

When Nevith was five years old, her heart began to hurt. She used to tell her mother that “it beat fast, as if it was going to jump out of her little chest. When she walked fast her heartbeat quickened, but sometimes it also happened when she was asleep, and she woke up scared,” says Lleida Carrillo, from Monterrey, Mexico. The years went on and her daughter was not growing or gaining weight. She did not understand what was happening to her. “Until Nevith was able to express herself, and we took her to my neighborhood clinic,” says the woman. They could not diagnose her there; she needed a pediatric cardiologist. “But we didn’t have the money to pay a specialist. So my husband and I started to save money for her tests,” she says.

At the Miller Hospital, a private health center, they performed an echocardiogram. The diagnostic test showed that the girl had an atrial septal defect, a malformation in which the heart has a hole in the upper chambers and oxygenated blood mixes with non-oxygenated blood. An opening that, during pregnancy or after childbirth, closes in the newborn, unless there is an anomaly in embryonic development.

In Mexico, 30% of children with congenital heart disease are not diagnosed, and 90% of those affected do not receive adequate medical care, according to a scientific study. Like Nevith, more than 20,000 babies are born in the country with a heart malformation, the main congenital condition and the second cause of death in children under 5 years of age. “Lacking specific statistics, an estimate of the reported global prevalence and the number of annual births is calculated,” explains Jorge Cervantes, a pediatric cardiac surgeon at the National Institute of Cardiology in Mexico City.

Congenital heart diseases originate when the heart is forming, at the beginning of pregnancy, “and they are one of the most common birth defects,” explains the surgeon, who has more than 25 years of experience treating children with cardiovascular disorders. “Thanks to prenatal diagnosis, doctors and families can be better prepared for when the child is born. Planning the patient’s care in a timely manner and providing emotional support for the parents helps a lot,” points out Cervantes. However, due to the lack of standardization of screening programs, the difficulty accessing them “and the lack of adequate training of professionals, detection rates are very low,” he says. In Mexico, the current legislation for this test is limited to the first trimester or in very specific cases.

The symptoms associated with heart malformations are very variable. While some diseases require no immediate treatment, many of them cause severe symptoms and “require surgical correction during the first weeks of life,” says the cardiologist. According to the Pan American Health Organization (PAHO), half of congenital heart diseases require surgery in the first year to survive: an emergency operation that a large number of children in Mexico cannot access. “There is a great deficit of resources, there is a lack of specialized centers and doctors,” says Cervantes. Care for this type of patient “must be comprehensive, with a multidisciplinary team that covers many different areas. And few centers have that capacity. It’s a lag that the public health system has been suffering for years,” he laments.

“When they explained Nevith’s problem to me, I began to cry in the doctor’s office. How were we going to pay for such an expensive operation? My husband is a construction worker and I am a stay-at-home mom. We had no money, and I was going to lose my child,” remembers Carrillo. Then they told her about an organization that helps families in her situation. Cardio Chavitos is an association that provides medical care to minors with congenital heart disease from economically vulnerable families in Monterrey.

“I called them and explained our case, that Nevith had an atrial septal defect and needed emergency surgery,” says the mother. One month later, they contacted her. “I remember the moment perfectly because I was washing dishes when I received the news, and I was speechless. Our baby had been accepted into their program and they would take care of all the medical expenses!”

Nevith underwent surgery in December of last year. It was a three-hour procedure in which a device was placed to close the hole that the malformation with which her heart was born had caused. “We were very nervous, but the time flew by. The entire medical team treated us very well,” says Carrillo.

Since its creation in 2008, Cardio Chavitos has assisted more than 300 families who required emergency surgeries; a huge help that changed the destiny of many children and their parents, but not nearly enough, considering the amount of people who need it. “Although we have several centers that do have the capacity to provide care, most of them are located in the same areas,” points out Cervantes, deputy director of the National Cardiology Hospital. According to a census carried out in 2019, 85% of congenital heart surgeries took place in large healthcare facilities in three cities: Monterrey, Guadalajara and Mexico City. The latter receives patients from all over the country, “which greatly saturates our services,” states the surgeon.

The lack of specialized pediatric cardiology clinics throughout the country leads to another problem: the high cost of traveling to qualified hospitals for families without financial resources. “Families that travel from Oaxaca and spend all their money on transportation and lodging because their children are very sick and require emergency care,” says Cervantes, who is one of the promoters of an initiative to implement the regionalization of congenital heart disease care in Mexico.

The plan consists of two main points. On one hand, creating a database of existing care in each state in order to see the greatest number of patients and achieve the best clinical results. “Because right now there is no national registry or accurate statistics on diagnoses and the number of patients operated on, essential information for establishing priorities in health policies,” explains the expert.

The second measure focuses on consolidating work teams in the High Specialty Regional Hospitals, like the one to which Cervantes belongs, and finding state hospitals with infrastructure and capacity to perform pediatric cardiac surgeries that can be trained by the former, which have greater experience and resources. “In this way, centers specialized in congenital heart diseases would be promoted in different regions, so that all attention is not concentrated in a few points of the territorial map,” explains Cervantes, for whom “the Ministry of Health urgently needs to consider attention to these pathologies as a national priority, taking into account the dimension of the health problem it represents in the country.”

When her daughter was diagnosed, Carrillo thought her case was very rare. “But then we learned more about it and met many families who were going through the same thing. It is terrible that there are not enough hospitals to provide care, that doctors don’t know, that parents don’t receive any help from the government,” says the mother. “If it weren’t for Cardio Chavitos, I don’t know what would have happened to my daughter. They saved her life,” she reflects.

After the successful operation, the girl gained weight and grew in size. Experts assure that the life expectancy of patients who undergo this type of surgery is the same as the rest of the population. Almost a year later, Nevith leads a normal life: playing, running and jumping around like the other children. “And she’s sleeping very well now,” her mother announces, with a tone that conveys deep relief. “The first thing that my girl tells me sometimes when she wakes up in the morning is that her little heart no longer hurts.”

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