Childhood: Rheumatic Heart Disease

LOUISE'S STORY:
In Rwanda, a young girl receives lifesaving surgery for rheumatic heart disease.

Louise (right) at her desk with a classmate.

In 2007, Partners In Health followed the story of two young girls suffered from rheumatic heart disease (RHD) – an all too common diagnosis in Rwanda. Both girls were treated through a unique partnership formed by PIH's Rwandan partner organization Inshuti Mu Buzima, the Salam Center for Cardiac Surgery in Sudan, and the Italian humanitarian organization Emergency.

One of those girls is Louise. This is her story.

A child made sick by an easily prevented disease

Five years ago, Louise’s small body was painfully swollen and wracked by recurrent asthma-like spasms in her lungs. She coughed throughout the day. Her heart – weakened and scarred from an infection – could not effectively pump blood to the rest of her body. Louise was slowly suffocating.

The bedridden 8-year-old suffered from rheumatic heart disease (RHD), a grim and all too common diagnosis in her Rwandan community, and one that could have been easily prevented by access to basic medical care, 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.

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.

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 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. A disproportionate number of these children are girls.

Finding care far from home

Louise faced almost certain death without heart surgery.

Access to care presented a barrier – no medical facility in Rwanda could safely provide the surgery Louise needed. In 2012, more than a half-decade later, this is still the case.

So PIH and Emergency, and Italian humanitarian organization, arranged for her to travel to Sudan, where the Salam Center for Cardiac Surgery had just opened in the city of Khartoum. 

At the Salam Center, doctors struggled to fix Louise’s damaged valve, but the tissue had already been scarred beyond repair. So they replaced the valve, and Louise quickly and dramatically began to recover.

Within weeks, she was well enough to return to her family in Rwanda. 

“It’s very amazing to see how she has improved,” said Eric Kamanayo, a nurse who accompanied Louise to Sudan. Just a few months after the surgery, she was able to run, and even carry her little brother around on her back. “This is unbelievable but true!” added Kamanayo.

Checking in five years later

Louise in her classroom with her peers (last row, center)

Today, a very healthy Louise is in the fourth grade. “She is doing well in school and is happy to be there,” said the headmaster of Louise’s school. “Her performance is satisfactory in all subjects, but she does particularly well in math.”

Although she excels at math, English and social studies are her favorite subjects. She is popular with the other kids and enjoys playing handball and jump rope. She sings in her church choir.
 
One day she hopes to be a doctor.

“I recently asked Louise how she feels since her surgery 5 years ago,” said PIH’s Aubrey Davis. “She says she feels good now, although sometimes with physical exercise, she gets winded. But she says there’s a big difference between how she was before the surgery. Before, she says, it was terrible. Today, she’s had no problems since the surgery, and she takes her medication every day. She says she no longer worries about her health.”

Today, Partners In Health continues working with local partners in Rwanda to help bring the access to care to Louise’s community – ranging from basic care that can prevent simple strep infections from deteriorating into RHD, as well as surgical capacity for treating advanced cases.

Partners include the Rwandan Ministry of Health, King Faisal Hospital in Rwanda’s capital city of Kigali, and Team Heart, a team of cardiac surgery volunteers from Boston-based hospitals who are working to strengthen Rwanda’s surgical infrastructure.  

Read a story about Louise published on PIH’s website in 2007.
Learn more about PIH’s efforts to combat non-communicable diseases like RHD.