It began as a cold that Julia Amparo-Alvarado couldn't seem to shake.
Willie Davis
Julia Amparo-Alvarado at her Greenpoint apartment.
Willie Davis
Bellevue's Dr. Danielle Ofri: "I felt... entirely defeated" meeting Julia.
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One January night in 2003 when her boss called, asking her to come in for a night shift of janitorial work at the Brooklyn Con Ed building, Julia protested, complaining of a fever. But with an eight-year-old son and four-month-old daughter at home, she knew she couldn't give up the work. The family needed every dollar.
She slipped on layers of sweaters, a jacket, and a pair of shoes that did no justice to the snowstorm going on as she walked to the subway station. When she finished her shift, she felt chills and was sweating. Her knee—a constant problem since she'd come to the United States from Guatemala five years earlier—was throbbing. Her whole body ached.
Over the next two weeks, her brother made trips to the pharmacy to pick up Tylenol. Neighbors came by her drafty two-bedroom apartment to bring her soup. When Julia couldn't get out of bed, the kids were looked after by a sister and sister-in-law.
Under no circumstances, however, could she see a doctor. Doctors ask questions. They request documents. They might even call the police. One phone call could mean incarceration, deportation, and separation from her kids. Julia knew she was sick, but a doctor was out of the question.
In 1998, she had trekked across Mexico to get to the U.S. for more money, better education, and less violence. Her home, the southern end of Guatemala, was racked by mayhem left over from a civil war.
"There was a better future here," Julia says in Spanish. Her eldest sister, Carmen, draws a finger across her throat: "[The violence] was everywhere," she says.
And Julia's firstborn was sick. At a month old, Wilmar developed meningitis, which, if treated there, was costly. Coming to America meant better health care.
But now that she needed medical care herself, she was terrified about getting it.
When the cold turned into something worse—constant vomiting and shortness of breath—Julia's brother insisted she see a doctor. Her husband was certain a hospital would not deport Julia because she was so ill. "They had to help her," her husband, Lisandro Escobar, says.
Julia admitted herself to Woodhull Medical Center a few weeks later. "I walked to the hospital alone," she says. "There was no one who could come with me—everyone was busy working." At Woodhull, few staffers knew Spanish. Julia's English was limited to "I don't know."
To the staff who did speak her language, Julia divulged her illegal status. "I was not afraid to tell them I didn't have papers," she says. "A lot of people in the hospital were illegal. I knew they weren't going to deport me because I was sick."
Julia was at Woodhull for a month, suffering from severe chest pains and shortness of breath. She was eventually transferred to Bellevue Hospital to see a cardiologist, but it was a bewildering experience. "Everyone was speaking in English," she says with a shrug.
She was at Bellevue for two months before she met Danielle Ofri, a physician and professor at NYU's medical center. One day, Ofri brought around a new team of residents to Julia's room.
Ofri says she looked at Julia's chart and felt overwhelmed.
"I felt . . . entirely defeated," Ofri says today, remembering that day when she first met the Guatemalan woman, who, at 36, was near her own age. "The whole premise of medicine is that you can always work harder to help your patients, but here was a situation that I could not do anything about."
When Ofri looked at the chart, she could see that Julia's battered and enlarged heart was not pumping enough blood. Her diagnosis of dilated cardiomyopathy was a death sentence, but only because of her legal status.
"I know if she gets the transplant, there is a 95 percent chance of a full recovery," Ofri says. But an intern quietly informed the doctor that Julia was in the country illegally. Undocumented immigrants, Ofri knew, don't get on a transplant list.
When Ofri mispronounced her name, Julia corrected her.
"Hooolia," she said.
"We meet this lovely person. . . . It was just horrible to see this person and know she is going to die and none of us could do anything about it," Ofri says. "None of us could bring ourselves to say, 'You need a transplant. You can't get it. And you are going to die without it.' And we tried several times, but we just kept chickening out, because how do you say that to someone's face?"
Despite being in two hospitals over three months, Julia had never really grasped the truth of her situation from the other doctors and nurses, some of whom knew only a little Spanish.
However, Ofri was nearly fluent. Her father had immigrated from Israel (he had played on the 1952 Israeli Olympic basketball team); she had studied Spanish in Peru, Guatemala, and Mexico. She carefully explained to Julia that she could provide her with medicines that would make her feel better, but not cure her.
