​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. The child's parents might notice that their son or daughter 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?

Virtually all of the conditions treated at Haiti Cardiac Alliance will eventually lead to death without surgery, the majority of them within one to two years. 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?

Families in Haiti often have complex cultural mechanisms for understanding cardiac illnesses and their causes, sometimes involving voudou or other religious belief systems. Nevertheless, the overwhelming majority of Haitian families in our medical partner's program also engage with the medical explanations and treatment of these conditions. Parents are willing and cooperative participants in their child's treatment.

What does the treatment process look like?

The patient is first referred to our medical partner, Haiti Cardiac Alliance (HCA), by a pediatrician or another medical practitioner who detects symptoms that might be cardiac in nature. HCA staff then perform an echocardiogram to diagnose the cardiac condition. If surgery is required, the child joins a triaged waitlist to be placed for surgery with partner hospitals. It can sometimes take 6-12 months to move through this waitlist. During this period, HCA provides periodic cardiac checkups, changing the patient's triage position as appropriate. The child and his/her guardian then travel to the hospital with an HCA social worker. Typically, the child spends 4-5 days in or near the hospital prior to surgery for testing and examinations. After surgery, he or she spends several more days as an inpatient prior to being discharged. When the child is strong enough to travel, usually after several more weeks, he/she returns home to Haiti. HCA provides regular cardiac checkups for at least five years postoperatively before the final discharge from their program.

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

These treatments are almost always life-saving in nature. These cardiac conditions are not survivable over the long-term without surgery. Within weeks after surgery, the patient should 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 "blows," 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?

Patients come to Haiti Cardiac Alliance (HCA) from the entirety of Haiti. This can involve three days of travel in buses, pickup trucks, or even on horseback. There is no cardiac surgery of any kind available in Haiti outside of the HCA treatment network.

What are the alternatives to this treatment?

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