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After doctors removed 8-pound tumor from his face, teen with rare condition dies

A week after 12-hour surgery to remove an 8-pound tumor from his face, Emanuel Zayas, 14 has died. His parents donated his body to science to learn more.
/ Source: TODAY

A little more than a week after having an 8-pound tumor removed from his face during a 12-hour surgery, Emanuel Zayas, 14, has died.

"Our condolences and prayers for Emanuel's family and the loss of a very brave young man," Dr. Robert Marx, chief of oral and maxillofacial surgery at the University of Miami Health System told NBC6 South Florida. "Another angel has arrived in heaven."

In a 12-hour surgery, doctors removed a 10 pound tumor from 14-year-old Emanuel Zayas face.
In a 12-hour surgery, doctors removed an 8-pound tumor from 14-year-old Emanuel Zayas face. Less than a week later, he died after experiencing kidney and lung failure.Courtesy University of Miami/Jackson Memorial Hospital

Three years ago, Zayas developed what his parents thought was a pimple. But instead of going away, it continued growing into a massive tumor on his face that affected his ability to breathe and eat.

Medical missionaries found Zayas, who is from Villa Clara, Cuba, and shared his X-rays at a conference that Marx was attending. He had experience removing such large facial growths and he believed he could help Emanuel, too.

"Our hopes of saving his life and in doing so would allow him a better quality of life have not been realized," Marx told NBC.

Emanuel had polyostotic fibrous dysplasia, a rare disorder where scar-like tissue forms instead of bones. People with this condition can also develop cysts. Doctors in Cuba felt uncomfortable treating Emanuel and his tumor grew unchecked. After Marx learned about Emanuel, he and his team arranged for a medical visa to allow him to have surgery in the U.S. this January. Marx was optimistic immediately following the grueling surgery, despite its challenges.

“This was probably the most technically difficult surgery I have ever done,” Marx told TODAY. “The tumor was exceedingly vascular, and we were controlling bleeders every minute.”

Emanuel Zaya
Because of the 8-pound tumor, the teen had difficulty seeing and breathing.Courtesy University of Miami/Jackson Memorial Hospital

On January 18, Marx visited Emanuel and felt good about what he observed. Emanuel had pupillary reflexes and muscle tone in his face. Only two days later, Emanuel’s health took a dramatic turn, and he suffered lung and kidney failure.

“I am saddened by the fact that we are losing him and that apparently the physiologic stress of the surgery was too much for his compromised anatomy to overcome," Marx said after visiting Emanuel on Saturday.

The family plans to donate Emanuel’s body in the hopes that researchers can learn more about polyostotic fibrous dysplasia.