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I went to Kigali, Rwanda, to talk about the kind of heart disease that hits Chance and millions of other young people. I had to be a fly on the wall. Before I knew it, I was trying to help.
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At age 16, Chance Mwunguzi had been sick for years and her mother, a teacher, had done everything in her power to ask for help, and even sell her house to pay for medical care. Chance had two sick heart valves and required surgery to replace them. Without her, he would not survive.
Their country, Rwanda, does not have a cardiac surgeon. Chance's doctors recommended going to India for surgery, but the family could not afford it.
I went to Kigali to report on the type of heart disease affecting Chance and millions of other young people. I hoped to find progress in treatment and prevention.
When I met Chance and his mother, Alphonsine Mukankundije, they found the best and probably the last hope: Team Heart, a group of medical volunteers from the United States and Canada who travel to Kigali once a year to replace the valves. surgery on patients like chance.
What is amazing about this fatal heart disease is that it is caused by strep throat, a disease that is little more than a nuisance in the United States and other rich countries, where children suffering sore throat undergo regular tests. But if the infection – caused by a streptococcal bacteria – is not treated, it can lead to rheumatic fever and severe lesions of the heart valves.
In low-income countries, where streptococcus is often not detected, rheumatic heart disease is a serious public health problem, affecting tens of millions of people. This year, a hundred Rwandan patients, desperate for life-saving surgery, presented themselves for screening by the Heart Team, which could only operate 16 people.
It is tempting to think that if parents could learn to seek care every time their children have a sore throat, this problem could be eliminated. But it is not that simple. During the interviews, I found that most patients and their parents had no memory of a sore throat.
I knew that rheumatic heart disease was bad, but nothing prepared me for the sight of so many so sick young people, many of whom were teenagers and 20 years old – some had stunted growth or swollen abdomens, some in the end of life.
Chance was among the luckiest: he was considered a good candidate for surgery.
But a few days after first meeting with his mother, I found them sitting huddled under a tree in front of King Faisal Hospital in Kigali. Chance was a portrait of misery; Alphonsine held back her tears. Hospital officials had refused to admit Chance, unless Alphonsine was paying a fee – which she had not. She had come so far and struggled so hard to save her son's life, only to have the door slammed in his face.
Should a journalist try to help? Are not we supposed to be the fly on the wall, watching events unfold without influencing them? I took out my cell phone and called Team Heart. They sent a member to settle the admission of Chance. Although the group has been operating in the hospital since 2008, billing issues arise every year, spurred by hospital bureaucracy and the unexpectedness of health insurance in Rwanda. Later in the day, Chance came in.
Full Disclosure: I had already defended it once before, when the evaluation team of surgical candidates seemed to have forgotten it. Did it make a difference? I have no idea. They may have reviewed their notes and remembered him anyway. Or maybe not.
Like the families of many other cardiac surgery patients, Alphonsine lived too far from the hospital to return home. She joined the group, mainly mothers, who were mainly camping on the large terraces surrounding the hospital. .
Her first night was discouraging, she told me later. A young man who had to undergo surgery was suddenly deteriorated and it became clear that he would not be alive all night. At the same time, a young woman, Elina, who had just been admitted – and who plays a major role in the story that I wrote – began to cough and struggle to breathe. But the team was trying to heal the dying patient. A nurse told Alphonsine to monitor Elina's oxygen monitor and call for help if the reading was below a certain level.
"I could see that I was the oldest in the room," said Alphonsine. "It gave me a lot more responsibility."
She woke another parent to help her watch Elina. Soon, the level of oxygen began to drop.
Alphonsine asked for help and the team arrived.
Alphonsine spent the rest of the night and part of the day trying to comfort the mother of the young man who had died and to help plan his funeral.
A few days later, Chance was operated on. Like other mothers, Alphonsine was sitting on the terrace, trying to stay calm, staring at the opposite wing of the hospital, waiting to see her son go from the operating room to the care intensive.
His surgeon told him that the operation had gone smoothly.
"I want to thank you," she told him. "I'm going to pray that God will keep you alive and give you ongoing knowledge."
Chance recovered well and quickly started walking on the terraces and even kicking a football.
Alphonsine said she was considering talking about strep throat and preventing rheumatic fever to her students, colleagues, and members of her church.
"Even if I have nothing, if my son is saved, I'm happy," she told me. "I dreamed that my son would be healed. Now, the dream becomes true.
I'm not sorry to help. If Chance had missed the operation, it would have been a heartbreaking story. His recovery makes him a better one.
But many more patients than the team could have undergone the necessary surgery, and the progress I was hoping to find – like the Rwandan government pledging to pay for these operations and to train doctors and nurses for them. execute – always seem to exceed the horizon.
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Denise Grady has been a science journalist with the Times since 1998. She wrote "Deadly Invaders," a book on emerging viruses. @nytDeniseGrady
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