​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. The patients who undergo diagnostic catheterization are born with one of several types of congenital holes or defects in the heart.

​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. In some cases, the child may be eligible for surgery, but only after a cardiac catheterization to determine whether the pressures upon the lungs are still reversible. In this case, the child travels to the Dominican Republic to undergo this procedure. The child stay in the hospital overnight and is discharged the next day. Once the results are received, HCA can decide on next steps.

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

The cardiac catheterization itself is diagnostic in nature and does not cure the patient's heart condition. However, the patient cannot be accepted for surgery anywhere without first undergoing this procedure. It is thus a life-saving step in his or her treatment plan.

What potential side effects or risks come with this treatment?

Diagnostic catheterization is a relatively low-risk procedure. However, risks include excessive bleeding at the incision site and accidental puncture of the cardiac tissue with the catheter probe.

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

The country of Haiti currently has no cardiac catheterization lab, which is why all of HCA's patients must travel to Dominican Republic for this service.

What are the alternatives to this treatment?

There are no alternatives to diagnostic catheterization for measuring pulmonary pressures and assessing surgical viability.