Stories about: Global health

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.

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Global connections: Khalid’s story

When faced with a sick child, every parent in the world wants the same thing—the best care possible. Often, all it takes is a quick visit with the local health care provider. Occasionally, it means a trip to the local hospital or short stay at an academic medical center. In rare cases, obtaining the best care requires an extraordinary effort.

A mother finds herself researching the world’s best pediatric neurosurgeons. An uncle turns to YouTube to learn more about brain tumors. Physicians on opposite corners of the globe find ways to communicate and collaborate. And a family boards an air ambulance, embarking on a 7,000-mile journey, anticipating a marathon neurosurgery for their child and hoping for the best.

In December 2013, Mohammad and Hend Al Ansari, from Dubai, United Arab Emirates, found themselves in that rare group of parents.

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For chronic illness, sometimes happiness is the best medicine

Minwa

When her daughter Minwa Alhamad was just a baby, Dalal Alrefaei noticed something: One of Minwa’s legs wouldn’t bend. The little girl didn’t cry or seem to be in pain, but her knee was hot and swollen. After taking her to a hospital near their home in Kuwait City, doctors told Dalal that Minwa may have had the flu and prescribed ibuprofen.

Symptoms improved slightly over the next few days but when Minwa began to walk, Dalal noticed that her heel didn’t touch the floor. This time, her doctors said it might be something muscular, but didn’t have an answer. Dalal took Minwa to Germany for another diagnosis, but to no avail. After six years of testing, imaging and intense physical therapy, Minwa’s knee was still troublesome, and the doctors in Germany said they had never seen anything like it.

In 2007, Dalal took Minwa to the doctors for stomach problems and vomiting, and her physician immediately noticed the difference between both her knees, ultimately resulting in a diagnosis of rheumatoid arthritis. After three months of fruitless treatment, her doctor sampled the liquid from the swollen knee and referred them to Boston Children’s Hospital.

Finally in Boston, Lyle Micheli, MD, and Samantha Spencer, MD, diagnosed Minwa with an extremely rare vascular malformation that prohibited her knee from working properly. It also caused her extreme pain, all day and night, prohibiting her from playing with friends, walking or going to school.

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Dichato’s long road to recovery

On February 27, 2010, a devastating earthquake occurred off the coast of Chile. Registering a magnitude of 8.8, the quake also triggered a tsunami that ravaged the Chilean coast. By the day’s end there were hundreds dead and more than 1.5 million people displaced from their homes. The recovery effort goes on to this day, with help from many, including Boston Children’s Hospital employees. Lili Peacock-Chambers, MD, recently visited the country as part of “Recupera Chile,” a multi-disciplinary post-disaster community development program. 

By Lili Peacock-Chambers, MD

Dichato, Chile, is a small coastal town, with a population of just 3,000 residents. A single road leads in and out from Dichato, winding though evergreen and eucalyptus covered hills, with beautiful views of the sea when breaks in the hillside allow. If you stand at the crest of the tallest hill, just past a mound of red earth and bulldozers that sit across from sprawling rows of wooden “mediaguas” (temporary shacks), you see the crescent shaped bay and the vast ocean beyond. Directly bellow the hill lays Dichato.

For the people of Dichato, moving from “arriba” (above) to “abajo” (below) still brings the heavy memory of 2010’s devastating earthquake. The trek, which connects the safety of the hills to the life-sustaining waters of the bay, is more treacherous than it was before the earthquake, but traffic along the path remains as constant as the tides.

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