The tumor on Emanuel Zayas’ face started as a pimple on the left side of his nose about two years ago, when the boy was reaching puberty.
Within a few months, said Noel Zayas, Emanuel’s father, the pimple grew into a fleshy mass and kept growing to the size of a basketball. The tumor is benign or not cancerous but threatens to fracture the boy’s neck and suffocate him.
Emanuel, 14, labors to breathe as the 10-pound tumor presses down on his trachea, and he’s undernourished because it is difficult for him to eat and swallow, said Dr. Robert Marx, chief of oral and maxillofacial surgery for the University of Miami Health System or UHealth.
“It’s life threatening by its very weight,” Marx said of the tumor on Friday, as Emanuel and his parents held a news conference at Jackson Memorial Hospital. Marx and a team of surgeons will operate to remove the tumor from Emanuel’s face on Jan. 12 at Jackson’s Holtz Children’s Hospital.
“If nothing is done,” Marx said, “it will cause a fracture of his neck.”
Emanuel and his parents, Noel Zayas and Melvis Vizaino, arrived in Miami from their native Villa Clara in central Cuba about three weeks ago on a medical visa. The family has been staying at the Ronald McDonald House near Jackson Memorial, where Melvis Vizaino said the staff has made them feel welcome.
“The children always have activities there,” she said, adding that Emanuel likes to build Lego toys, solve puzzles and watch cartoons.
Marx said he first heard of Emanuel’s case at a medical conference where a group of missionaries presented X-rays and photos of the boy.
“Nobody knew what it was,” he said.
But Marx knew, because he has operated on patients with large facial tumors in the past, including Marlie Casseus, a Haitian woman who had a 16-pound tumor removed from her face at Jackson Memorial more than a decade ago.
Emanuel was born in Cuba with a rare disorder called polyostotic fibrous dysplasia, which causes his body to develop scar-like tissue instead of bone. The disorder often causes fractures and deformities of the arms, legs and skull.
Noel Zayas said Emanuel was diagnosed with the disorder at age 2, when the bone in his hips began to fragment, causing his left leg to deform as he grew. He said doctors in Cuba would not risk performing surgery on Emanuel’s facial tumor.
“I knocked on a lot of hospital doors,” he said. “I thank God that we’re here and that this country and Jackson Memorial would welcome us. … To see our son deforming and all we can do is watch, it’s not easy.”
Emanuel’s family, including younger sister Elizabeth, 8, lives in Villa Clara where his parents are pastors in an Evangelical Christian church called Pacto con Dios or Pact with God, Noel Zayas said.
He said that an American missionary had met Emanuel in Cuba and asked his parents for permission to help.
Eventually, the missionaries presented Emanuel’s case before Marx, who said he and a team of surgeons have been planning the complex operation for about two weeks.
It will take four surgeons about 12 hours to remove the tumor while preserving blood flow, tying vessels and then reconstructing Emanuel’s nose so he can breathe easily. The surgical team must be careful to remove the entire tumor so it does not return, Marx said.
Afterward, Emanuel will need more surgeries to reconstruct his cheek, jaw and other facial features, and to implant prosthetic teeth.
Marx said doctors are volunteering their time and expertise. “We’re doing this because how can we not help this young man,” he said on Friday.
But benefactors are raising money to pay for Emanuel’s hospital stay and other costs, such as drugs and medical supplies needed for his recovery. Marx estimated the costs could be $200,000 or more.
IKF Wonderfund, a Jackson Health Foundation program that helps critically ill children from countries around the world, has taken Emanuel’s case and launched a fund-raising website for his surgeries at jacksonhealthfoundation.org/emanuel.
Marx said first thing Emanuel will notice after doctors remove the tumor is that his vision will improve. The boy’s eyes work fine, Marx said, but the tumor has blocked much of his vision.
“He’ll also be able to breathe a whole lot better,” Marx said. “He’ll be able to eat a whole lot better.”
Melvis Vizaino said Emanuel’s life changed quickly because of the tumor. He’s in the 9th grade and remained in school until last year, when she withdrew him. Vizaino said Emanuel gets along well with his friends, and that he was very active before the tumor, though he needed crutches to walk. Emanuel now uses a wheelchair.
“He likes socializing,” Vizaino said. “He has always been very connected to his community.”
Her hope is that Emanuel’s life will return to normal after the surgeries.
“The things God is doing with Emanuel are big,” she said. “We don’t always understand them. … But we’re believers.”