​What kinds of symptoms do patients experience before receiving treatment?

When a hole exists in the heart, a physician can hear a buzzing noise, or murmur, in the child's chest as blood passes through the hole at high velocity. Parents might notice that their child cannot keep up with other children in daily activities. In severe cases, the lack of oxygen in the bloodstream can lead to dramatic symptoms, such as blue lips and tongue, clubbed fingers and toes, and heart failure.

​What is the impact on patients’ lives of living with these conditions?

Most congenital cardiac conditions will eventually lead to death without surgery, often within a period of months or years depending on severity. In the meantime, patients experience heart failure as their hearts struggle to compensate for the presence of leaks or other defects. In most conditions, the heart becomes fatigued, limiting the child's ability to be active, go to school, and participate in daily life.

What cultural or regional factors affect the treatment of these conditions?

Pediatric open-heart surgery has only been made available in Bolivia in recent years. Most families are unfamiliar with the concept of open-heart surgery and are at first quite reluctant to allow their child to undergo this care. Indigenous belief systems in Bolivia can at times contribute to a family's reluctance to proceed with surgery, and must be addressed through thoughtful conversation and social accompaniment of each family.

What does the treatment process look like?

The child's cardiac symptoms are usually first detected by their local pediatrician, who then refers the child to the nearest pediatric cardiologist for exam and diagnosis. Once diagnosed, HCA works with the local cardiologist and the surgical team in La Paz to ensure that the child is enrolled on the waiting list for surgery at the hospital, and works directly with the family to facilitate their transportation to La Paz, often from very long distances, and to support them socially and logistically after arrival. The child then undergoes surgery and recovers for about a week in La Paz before returning home to their community. HCA then coordinates with the child's pediatric cardiologist to ensure high-quality, long-term follow-up care, and provides financial support for medications and doctor visits as needed.

What is the impact of this treatment on the patient’s life?

These treatments are almost always life-saving in nature as the cardiac conditions are not survivable over the long-term without surgery. Within weeks after surgery, the patient should already notice a difference in energy level. Many patients also undergo a growth spurt and/or gain significant weight after a surgery.

What potential side effects or risks come with this treatment?

The risk of death during or shortly after an open-heart surgical procedure is about 3%. Other risks, though rare, include stroke and post-operative infection. In a small percentage of cases, the material used to patch the hole will separate from the edges of the hole, and a follow-up surgery is necessary to re-patch the defect.

How accessible is treatment in the area? What is the typical journey like for a patient to receive care?

For families without private-sector insurance, the cardiac surgery program in La Paz is the only year-round surgical program in Bolivia capable of treating children who need open-heart surgery. Children come to this program from throughout Bolivia; many families live in extremely remote and mountainous areas that can require several days of overland travel to reach La Paz. For patients who live more than 8-10 hours away by road, HCA arranges for families to come by plane from the nearest commercial airport to their home.

What are the alternatives to this treatment?

In general, patients are treated with medications to prevent heart failure until they are able to obtain their surgeries. Patients may also seek care from traditional healers, who may use liquids and powders derived from local plants and roots.