“Jeanette was so sick,” said Dr. Joseph Mucumbitsi, a Rwandan pediatrician. Bedridden for months, the 14-year-old only weighed about 65 pounds. Her heart, weakened and scarred from an infection, could not effectively pump blood to the rest of her body, and she was slowly suffocating.
Eight-year-old Louise was also struggling to survive. Her swollen body was wracked by recurrent asthma-like spasms in her lungs and persistent coughing.
Both girls suffered from rheumatic heart disease (RHD), a grim and all too common diagnosis in their Rwandan community. What was uncommon was the international effort to save them on the part of PIH's Rwandan partner organization Inshuti Mu Buzima, the Salam Center for Cardiac Surgery in Sudan, and an Italian humanitarian organization called Emergency.
Jeanette before undergoing surgery in Sudan
Both girls faced almost certain death without heart surgery, something that no medical facility in Rwanda—or in most African countries—could safely provide. So PIH and Emergency arranged for them to travel to Sudan, where the Salam Center for Cardiac Surgery had opened earlier this year in the capital city of Khartoum. Built by Emergency, the state-of-the-art facility provides health care for free to the people of the region.
At the Salam Center, doctors struggled to fix Jeanette’s damaged valve, but the tissue had already been scarred beyond repair. So they replaced the valve with a new temporary one, which they hope to exchange for a more permanent one in several years. Louise also received a new valve.
Nurse Eric Kamanayo with Jeanette before surgery
“It’s very amazing to see how they have improved,” says Eric Kamanayo, a nurse who accompanied the girls to Sudan. “Louise is now able to run 100 meters without stopping. This is unbelievable but true!” Louise has already gained more than four pounds, while Jeanette has put on an amazing 15 pounds since the surgery.
These two girls were incredibly fortunate. At the King Faisal Hospital in Kigali, the Rwandan capital, Dr. Mucumbitsi sees many other children from around the country in similar conditions die every year. One reason is a lack of access to the needed medical treatments.
Currently, there are only a handful of hospitals that can perform cardiac surgery in all of sub-Saharan Africa. In comparison, North America boasts more than 4,000 such facilities. And even if a patient is fortunate enough to receive the opportunity to go to one of the few cardiac surgery facilities, it might be too late by the time all the logistical details can be arranged. Two other young girls died earlier this year as Dr. Mucumbitsi desperately tried to find a place to send them for surgery. “The process took so much time that they couldn’t survive long enough to be saved,” he said. “One of them died just one day before her flight to Israel.”
An even larger problem is widespread lack of access to basic medical care. Jeanette and Louise both had heart damage that could easily have been prevented, says Dr. Gene Bukhman, a PIH cardiologist who works at the Brigham & Women's Hospital in Boston and the Department of Social Medicine at Harvard Medical School. His goal is to develop ways to deliver quality cardiovascular care in resource-poor settings.
RHD results from untreated Streptococcal infections. These bacteria, which commonly cause strep throat and skin infections like impetigo, can be cleared up with a simple course of antibiotics like penicillin. If left untreated, however, the body’s immune system can start to attack its own heart valves in a mistaken attempt at self-defense, leading to RHD.
Louise after surgery in Sudan
In countries like the U.S., children with sore throats and skin infections are usually quickly diagnosed and treated. But in poor countries like Rwanda, medicine and diagnostic tools are not readily available, hospitals are often far away, and quality medical care is usually too expensive for most citizens. So when children like Louise and Jeanette catch a sore throat, there are no services to prevent this simple infection from progressing to RHD. As a result, nearly half of the 16 to 20 million people affected by the disease worldwide live in poverty-stricken sub-Saharan Africa. Dr. Bukhman came across at least eight RHD patients in need of heart surgery during a month in Rwanda, along with about 60 other patients in need of medical treatment for advanced heart failure.
This year, Rwanda joined other African countries in the ASAP initiative (Awareness, Surveillance, Advocacy, and Prevention) to challenge the RHD problem. Dr. Mucumbitsi helped create the Rwandan Heart Foundation. With the help of PIH, the Rwandan government, and other organizations, he hopes to create an in-country medical center that can safely provide heart surgery to those in need, a penicillin program to help protect those fighting infections, as well as local programs for identifying and treating strep throat and skin infections before they progress into life-threatening conditions.
Jeanette and Louise after surgery in Sudan
“We have the opportunity to help some of the sickest patients,” says Dr. Bukhman. “We need to take on RHD in an aggressive way.”
As for Jeanette and Louise, both girls are now back with their families in Rwanda and looking forward to starting school. One of the doctors in Sudan has offered to help them with school fees and supplies.
“Those are two children saved because they had the chance to be sponsored by Partners in Health,” says Dr. Mucumbitsi.
[published August 2007]