Open Heart film: A closer look at Rwandan children with heart disease

open heart

The short-subject documentary “Open Heart,” nominated for a 2013 Oscar, follows eight Rwandan children who traveled more than 2,000 miles for heart surgery at the only cost-free pediatric heart center in Africa.

Roughly 18 million people in Africa suffer from rheumatic heart disease and need surgery urgently to repair their damaged heart valves. Nearly two-thirds are children, and roughly 300,000 will die in 2015 due to inadequate access to proper medical care. The Salam Center in Sudan is the only medical facility on the continent that provides state-of-the-art cardiac surgery at no cost to patients.

Emmanuel Rusingiza, MD, one of two pediatric cardiologists in Rwanda, referred each child in the film for surgery. Due to financial constraints at Salam, Rusingiza can never send more than a handful of patients at a time. Deciding which patients to refer is a troubling task that weighs on his mind constantly.

“If we see a patient dying because it’s too late to do surgery, or it’s not possible … it’s very hard on me…when you know that there is something which should be done but which has not been done because you don’t have the means.” – Emmanuel Rusingiza, 2012

Cheerful and encouraging with his patients, Rusingiza is solemn and direct with their parents, who must understand the magnitude of their situation. His conversation with the father of 6-year-old Angelique before she departed for surgery was one of the tensest scenes in the film.

“If she dies … it will be her destiny,” her father said, with tears in his eyes.

Once selected for surgery, the children said goodbye to their families and traveled by plane for their operations. The procedures were scheduled so that everyone would recover together and be ready to go home around the same time. One child, Marie, had to stay longer for a second surgery. Upon hearing this news, the others were visibly upset. They gathered around their friend and encouraged her to eat, sit up, and stay strong. “We are family,” one child said, and Marie’s spirits were lifted. She was discharged a few weeks later.

Without surgery, each child—ages 3 to 19—could expect only a few years more out of life. Seven of the eight patients in the film are alive and thriving today.

Inside the Salam Center

Operational since 2007, the Salam Center is run by the Italian non-governmental foundation EMERGENCY. EMERGENCY was founded in 1994 with the mission to provide free, high quality health care services to victims of war and poverty around the world. Gino Strada, MD, one of the original founders of the organization, is the lead cardiac surgeon at Salam.

In many ways, the brash and blunt Strada could not be more different from the graceful and reserved Rusingiza. But the two doctors are equally passionate about their mission.

Strada, who began his career as a war surgeon, is a staunch proponent of the right to quality health care for all humans—regardless of geographic location or socioeconomic status. When he’s not performing life-saving cardiac surgery on children, Strada is campaigning for the funding necessary to keep the Salam Center afloat.

Rusingiza is a fierce advocate for efforts to reduce pediatric heart disease in his home country. Rheumatic heart disease is a common consequence of untreated illnesses such as strep throat, which could be cured with penicillin. Rusingiza explains that inadequate understanding about when and where to seek treatment, as well as transportation obstacles in rural communities, turn cases of treatable illness turn into serious and lifelong medical problems.

The Rwandan Ministry of Health has long been preoccupied with communicable diseases such as HIV and tuberculosis, with few resources left for rheumatic heart disease. This is changing, however, as Rusingiza and others lobby for increased attention to this major public health problem.

Global connections

Rusingiza completed a six-week observership at Boston Children’s Hospital through a collaboration among Global Pediatrics in the Division of General Pediatrics, Boston Children’s Global Health Program and Cardiology.  While here, Rusingiza worked with Open Pediatrics to create a rheumatic heart disease curriculum.

The Boston Children’s Heart Center proudly sponsors efforts to alleviate pediatric cardiac disease around the world. In Africa, our work has been concentrated in Ghana, where we have sent a team of nurses, cardiologists and surgeons every year since 2007.

Watch the “Open Heart” trailer.