When a Sore Throat Can Later Be Deadly
screened for the lifesaving operation. The team could operate on only 16
Lying on an examining table, Florence looked impossibly fragile, her arms thin as broomsticks. She had wasted away to 35 kilograms.
Dr. Pat Come, a Harvard cardiologist, pressed a stethoscope to Florence’s chest, back and neck, and palpated her belly. A sonographer, Marilyn Riley, from Beth Israel Deaconess Hospital in Boston, ran an ultrasound probe over Florence’s chest. “She has significant disease of two valves,” Dr. Come finally said. “But the operative mortality is likely too high. Medical therapy is the best option.”
A translator explained in Kinyarwanda that Florence was too sick for surgery. Florence asked if the medicines would cure her. No, but they could keep her “on an even keel,” Dr. Come said. Would her big belly go away? Florence asked. A drug, Lasix, that helps rid the body of excess fluid might help, Dr. Come said.
Ms. Riley said, “She’s so tiny I’m afraid she’ll fracture getting off the table.” A nurse helped Florence down.
Afterward, Florence said she’d had to quit school because she was too weak to get there. She was eager to go back. She hoped to be a pediatrician. She has been ill since she was about 8. Doctors had said only surgery could cure her. Now, they were saying it was impossible.
“It’s a disappointment,” Florence said.
Experts say programs to educate people about sore throats and strep, and to distribute penicillin widely to local clinics, could help greatly to prevent rheumatic heart disease in poor regions. But even those efforts probably would not wipe it out completely, because not everyone with strep seeks medical attention.
The World Heart Federation, which works with the World Health Organization, calls rheumatic fever and the heart damage it causes “neglected diseases of marginalized communities.” Poverty, crowded living conditions and lack of medical care create breeding grounds for strep.
In 2013, the federation set a goal of decreasing deaths from the condition by 25 percent in people under 25 by 2025. The group also called for a strep vaccine.
Little is spent on studying the illness, less than $1 million globally in 2013. From 500 to 1,000 times as much research money is spent on tuberculosis, malaria and H. I.V. — which each kill three to five times as many people as strep, according to an editorial in The New England Journal of Medicine.
If rheumatic fever is detected early, long-term treatment with penicillin can prevent valve damage.
“Unfortunately, the entry point is heart failure,” said Dr. Joseph Mucumbitsi, a pediatric cardiologist at the King Faisal Hospital in Kigali, and a consultant to Team Heart. “We have many rheumatic heart disease patients below 17. We have some as young as 5.”
He estimated that there might be as many as 20,000 people with advanced disease who need surgery.
The rapid tests widely used in the United States to diagnose strep are too expensive in Rwanda, and throat cultures are not widely available.
Some doctors advocate skipping the tests and just giving penicillin shots to all children with sore throats. Others worry that antibiotic resistance and penicillin allergies would result.
The genocide that killed a million people in Rwanda in 1994 also destroyed its health care system, and the country has had to rebuild it. H.I.V., malaria, tuberculosis and rotavirus have been major priorities — not heart disease.
Rwanda has only five cardiologists and no heart surgeons or hospitals equipped to perform heart surgery — for a population of 12 million.
Since 2008, Team Heart has been traveling to Rwanda. The group was founded by Cecilia Patton-Bolman, an intensive- care nurse who had seen a ward full of teenagers dying from rheumatic heart disease when she visited the country in 2006. Her husband, Dr. R. Morton Bolman III, who was the chief of cardiac surgery at Brigham and Women’s Hospital in Boston, is a co-founder. ( He moved to the University of Vermont, and recently retired.)
Once a year, 40 to 60 volunteers fly to Kigali: heart surgeons, cardiologists, nurses, anesthesiologists, experts in cardiac ultrasound, biomedical technicians, pharmacists, perfusionists who run the heart-lung machine that keeps patients alive during surgery.
They come from the University of Vermont, Harvard-affiliated hospitals and other medical centers. They pay their own airfare, and Rwanda’s Ministry of Health covers some hotel rooms and meals.
A week before the operations were to begin, at the King Faisal Hospital in Kigali, Team Heart members screened patients at other medical centers.
The ideal candidates are sick enough to die in a year without replacement valves, but well enough to survive the operation. The screeners also rule out those who seem strong enough to wait another year.
“Last year, we deferred someone who was too early,” Dr. Come said. “Then this year, he was too late.”
One year, a patient was turned down because she was pregnant, Dr. Come said. She returned a few days later — after an abortion. She underwent the surgery and did well.
Elina Mukagasigwa, 26, a tiny, weak woman, was among the many hoping for help.
Dr. Samvit Tandan, a cardiologist from the University of Vermont, told Elina that she had a diseased heart valve.
“We can fix the mitral valve,” Dr. Tandan said.
But he said the surgery would make it dangerous for her to become pregnant, so she should not plan on children.
“It’s not possible to have a baby?” she asked.
“It’s possible, but there is very high risk,” Dr. Tandan said.
She said, “The good decision is to not think about babies, so I can save my life a little bit longer.”
At another screening site, Dr. Patrick Hohl, a cardiologist from Portland, Maine, examined Innocent Nsabimana, 16, a quiet boy with a shy smile. His face, legs and chest had swelled, his eyes had turned yellow, he had developed a cough and could no longer ride his bike. Sick for a year, Innocent was taking five heart medications.
Two of his heart valves turned out to be severely damaged. And his liver was slightly enlarged — a warning sign, because the liver helps control blood- clotting, and liver trouble increases the risk of hemorrhage during surgery.
Even so, Dr. Hohl thought Innocent was a good candidate.
“I’ll advocate heavily for him,” he told Innocent’s uncle, Tuyisenge Chan Kamoso, 30, a graphic designer.
Turning to Innocent, Dr. Hohl said: “It’s a big surgery, but our hope would be that you’d get much better. Your breathing would improve, you’d get your appetite back. We have to review your case with our head surgeons. What do you think about all this?” “No problem,” Innocent said. Later, Dr. Hohl told the team: “This is the window. It’s closing. If he lives till next year, it might be too late.”
Once the screening was completed, the team of about 60 people gathered in a hospital classroom to select those who would get the surgery. They had 39 good candidates — for 16 spots.
The group agonized over some patients, particularly Gaudence, a 14-year- old girl who weighed just 30 kilograms, barely big enough for the available valves. ( Ultimately, the surgeons said no. She was too ill.)
They moved on to others. Innocent was chosen.
One surgeon who joined Team Heart for the first time, Dr. Thoralf M. Sundt III, the chief of cardiac surgery at Massachusetts General Hospital, had concerns about the program.
“It raises more questions than it answers,” he said. “We can create problems for governments. We create a pool of patients with big needs. Is this sustainable?”
But Dr. Sundt also acknowledged that with Team Heart’s program, “Lives are saved.”
Patients with mechanical heart valves have a permanent need for regular lab tests and the blood-thinning drug warfarin. A recent study found that rural district hospitals in Rwanda were providing good follow-up care.
Since it began working in Rwanda, Team Heart has operated on 165 patients. An article in a medical journal earlier this year, based on the first 149 cases, reported a survival rate of 95 percent in the first month after surgery.
The Bolmans said it was always their intention not just to fly in once a year, but also to train Rwandan doctors and nurses, and ultimately to build a cardiac hospital.
But in recent months, the Bolmans have reined in their ambitions. Instead of building a new hospital, they now hope to create a cardiac center at the King Faisal Hospital. The center could perform all types of heart surgery, not just valve replacement, on about 100 adults and 30 to 50 children a year, Dr. Bolman said.
“We’re scaling back, but not giving up,” he said.
Innocent returned to school shortly after his surgery, earned high grades and even resumed playing soccer. But he spent much of August in the hospital, with fever and chest pains — and no clear diagnosis. “I don’t know what to do,” his uncle said.
Florence’s health has continued to decline.