When three members of the Massachusetts General Hospital Heart Center joined Team Heart’s clinical expedition to Rwanda, they noticed the same thing - Rwandan teenagers and adults are so malnourished and sick from rheumatic heart disease that their full-grown bodies are child-size.
"A 16-year-old looked like an 8-year-old. They were very sick. We were looking at these tiny patients," says Terry Nearhos, RN, of the Mass General Cardiac Surgical Service.
On April 8th Nearhos departed for Kigali, Rwanda with Jennifer Neary, Mass General cardiac sonographer, and J. Warren Harthorne, MD, of the Cardiac Arrhythmia Service. Their mission: to join Team Heart in diagnosing and treating heart failure patients in Rwanda.
Team Heart is a volunteer organization led by Chip Bolman, MD, chief of Cardiac Surgery, Prem Shekar, MD, and Ceeya Patton Bolman, RN, all of Brigham and Women’s Hospital. A year ago, Team Heart began working with King Faisal Hospital in Kigali, Rwanda to care for patients with rheumatic heart disease and help Rwandan physicians set up a self-sustaining cardiac surgery program.
Although the program has grown to include volunteers from across the nation, the reality in Rwanda is dire. Children as young as 9-years-old are referred to the team at King Faisal Hospital for advanced heart valve disease developed from untreated strep throat.
"When you’re there, you see patients as young as 11-years-old, who in this country would have been evaluated, followed closely and likely had some form of intervention years ago," says Neary.
A nation suffering from the past
Rheumatic heart disease is a condition caused by rheumatic fever that damages connective tissue within the heart. Rheumatic fever develops from untreated strep throat and, over time, severely damages the heart valves and causes the heart to enlarge. Patients experience a multitude of valve problems and usually need complete reconstruction or replacement of the mitral, aortic or tricuspid valves.
A preventable condition, rheumatic fever is cured by penicillin and other antibiotics. But impoverished Rwandans, recovering from a mass genocide only 15 years ago, do not have the resources and infrastructure to treat strep throat early.
"The severity and progression of the disease at such a young age is unheard of here [in the United States]. It’s been essentially eradicated in this country," explains Neary.
There is a whole generation in Rwanda, now teenagers and young adults, who lost their parents during the 1994 mass genocide, when nearly a million (800,000) Tutsis were killed and at least 150,000 fled to neighboring countries. Fifteen years later, the nation is still being rebuilt.
"These people live in extreme poverty - a house with a mud floor and no running water - and the entire family shares one bed," describes Neary.
The median household income in Rwanda is $370 a year. With such limited resources, antibiotics and quality health care usually do not make the cut and children become repeatedly infected with strep throat.
Diagnosing patient after patient, heart after heart
A cardiac ultrasonographer, Neary detected heart valve conditions in more than 70 patients during her two-week stay in Rwanda. Neary saw patients at King Faisal Hospital in Kigali and at the University Central Hospital of Butare and Kabgayi Hospital.
When a 13-year-old Rwandan boy approached her - only 4'5" tall, less than 70 lbs and no longer able to walk to school - she swiftly assessed the severity of his aortic regurgitation (leaking of the aortic valve) and left ventricular size and function. She felt disheartened when she saw the severity of his disease firsthand and knew the gravity of his situation.
"It’s overwhelming. They don't have the resources to do the things that need to be done," says Neary. Yet Neary remains confident that additional visits and an educational focus will help Rwandan clinicians diagnose rheumatic heart disease earlier. During her brief trip, the team performed 13 multiple valve replacements and repairs in just eight days.
Terry Nearhos, a Mass General cardiac surgical scrub nurse for 29 years, agrees the trip was a major step forward. For 10 days straight, Nearhos worked with Rwandan clinicians to help them set up operating rooms for surgeries, washed walls and floors and vigilantly prepared surgical instruments.
Putting the tools in their hands
Dr. Harthorne has treated patients with heart rhythm disorders at Mass General since 1962. This year he brought 47 years of clinical experience to Rwanda to teach physicians the latest information about diagnosis, pacemaker care and disease management.
"Having effective, modern diagnostic techniques available often changed the direction of treatment," explains Harthorne. When Rwandan physicians could better diagnose the condition, they were able to recommend the best treatments for patients.
Currently Rwanda lacks a dedicated treatment program for heart rhythm disorders. Rwandans who can afford the expense travel to Nigeria or Sudan for advanced treatments. The majority wait in line for generalized care, if they get any treatment at all.
Harthorne believes the way to solve this disparity is to put clinical tools and education directly in the hands of Rwandans. If local physicians can better diagnose and manage advanced heart disease, the country as a whole will have better outcomes.
He hopes to see future Rwandan physicians spend time in the Unites States or with clinical ambassadors to learn the latest information on treating heart disease. By developing the country’s health care system, Harthorne says Rwanda can eventually be more independent - which fits the nature of its residents, according to Nearhos.
"They’re very gentle and independent. They have great pride and are quick to smile. They’re truly grateful for any help," says Nearhos.