DAYTONA BEACH (AP) — Deline Louigene kept the giant tumor growing in her mouth shrouded with a cloth in her Haitian village. Now, she rested in an American hospital nearly a thousand miles from her home. A missionary had found her, a church near Ocala had paid to bring her here, and a Daytona Beach surgeon stood ready to help.
The mass behind the shroud had grown to the size of a softball, preventing the 34-year-old mother of four from eating and forcing her to speak in a mumbled whimper. Only soup broth and liquids nourished her. The tumor was benign, but without help it would soon block her airway, and she would die.
It hadn’t always been this way. In her wedding photo when she married in 2004, her unblemished face peered out from behind the wedding veil. Then about five years ago, the tumor started to grow.
As the mass swelled, she tried to carry on. She made sure her four children had nice clothes to wear. She worked the fields on a small plot of land in her remote mountain village. She sought help at the closest clinic, but didn’t have the money to pay. A few neighbors advised her to visit the Voodoo priest, but her Christian faith wouldn’t allow it. She withdrew – not wanting the massive tumor to be seen in public.
Then, by a twist of fate, she found herself in a room at Halifax Health Medical Center in Daytona Beach on a day in early April.
One of her caregivers pulled back a towel covering the tumor. The pink mass consumed Deline’s jaw, stretching her mouth wide open. A few white teeth protruded from the fleshy ball. Her caregivers wondered when the doctors would operate, and Deline would finally be free from it.
As a nurse popped in for a routine check, Deline’s face showed no sign of worry –no fear. No, Deline said, she wasn’t afraid.
“In the name of Jesus, I am not,” Deline said through a translator in her native Creole, the only language she speaks.
MOTHER OF FOUR
Deline’s journey to America for a life-saving operation started with a chance encounter with Marie C. Dagis, a Haitian missionary from West Palm Beach.
The missionary encountered Deline’s husband who asked her to come see his ailing wife and pray with them. Deline lived in a village called Hess, which Dagis estimated had fewer than 1,000 inhabitants.
Dagis walked into the two-room cabin where Deline and her husband Jonel lived with their two boys – ages 16 and 12 – and two girls – ages 9 and 1. They had no running water and no electricity. Access to clean water was difficult, and people in Deline’s village died as a result, Dagis said. Deline cooked the family’s
meals on a fire outside the home.
To survive, Deline and her family worked the land as sharecroppers. What they didn’t eat, they sold in the village market. But sometimes, Dagis said, they didn’t even have enough food for themselves. The family grew corn, beans, sorghum and potatoes.
When the tumor started to grow, Deline visited a doctor in Grand-Goave, the closest city to her remote village. The doctor turned her away.
“They say she doesn’t have enough money for them to do anything for her,” Dagis said through a translator. “She just waited to die because she didn’t know what to do. Nobody could look at it. She was alone. She was isolated.”
Deline recalled her children crying when she couldn’t get help. One of the children wondered why they couldn’t make a medicine that would melt the tumor away.
Haiti is the poorest nation in the Western Hemisphere. Life expectancy is 63 years, ranking near the bottom. Cholera epidemics – long ago eradicated in the West – still plague the nation. Tuberculosis and HIV ravage the island. A 7.0-magnitude earthquake in 2010 killed more than 200,000 people and only worsened Haiti’s economic plight.
Dagis looked at Deline and thought the tumor was curable. The missionaries tried to find a team of doctors in Haiti who could do the operation, but the waiting list was too long, Dagis said.
Then, an idea. Dagis worked with a Haitian church outside of Ocala that her nephew Boaz Anglade attended called Christ for All Church of God. That church’s foundation agreed to help and raised about $8,000 for Deline’s travel and living expenses while in the United States.
Anglade also phoned around in search of medical help for Deline. One hospital told him it would cost $40,000 to do the operation. Then he made contact with Operation Changing Lives, a Daytona Beach nonprofit organization created to perform life-altering surgeries on disadvantaged patients both domestically and abroad.
“Looking at the four kids, she did not think Deline had to die,” Anglade said, translating for Dagis. “This is something that can easily be cured. She knew that if Deline could come here – as long as she could come here – she would not die.”
Nurses and orderlies placed Deline on a stainless steel table in operating room No. 9 on the third floor of Halifax Health Medical Center’s Fountain Building.
It was 11 a.m., and a dozen people scurried around the operating room as Deline’s anesthesia took effect. Dr. Curtis Schalit, a maxillofacial surgeon with Florida Oral & Facial Surgical Associates, wore glasses and a light on his head. An assortment of surgical tools rested on a tray. On a wall monitor, the tumor looked like a tangle of rubber-bands knotted together in a ball.
The tumor was not cancerous, but without intervention, Schalit estimated it would be fatal within six months to a year because of its size. Doctors also had discovered a blood clot in Deline’s leg. That too could prove deadly.
In the operating room, doctors gave Deline extra blood platelets to help offset the two-and-a-half bags of blood she would lose – about a quarter of her supply. The tumor had grown so large it had developed its own blood supply, and the prospect of excessive bleeding worried the doctors.
In the United States, with better access to health care, Deline’s tumor would have been removed well before reaching the size of hers, Schalit said.
“It’s real challenging,” he said. “The anatomy is so distorted. You don’t follow normal protocol.” Schalit cut on the side of her neck just below her ears. He sawed through bone to separate the tumor from her jaw.
“We are free,” the doctor said, separating the tumor from Deline’s jaw. “Free at last. Free at last.” Next he focused on making the final cuts to remove the tumor from Deline’s mouth. A smell of rotted meat filled the room. He gagged. The tumor had grown so large dead spots had developed in it. He resumed cutting.
Then at 12:48 p.m., Schalit removed the tumor and cradled it in his hands. A nurse took it and placed it on a scale. It weighed about a pound and a half.
Schalit took a titanium bar and inserted it. The bar will help to reconstruct her jaw, which had been swallowed up by the giant tumor. All told, the operation took six hours.
Halifax Health and Operation Changing Lives – the nonprofit founded by Schalit and Dr. John O. Akers in 2008 – performed the procedure for free. Schalit and Akers, along with other doctors in the community, volunteer their services to repair cleft palates and other facial deformities.
Schalit, 45, said he grew up in a poor home in a small town in Missouri. The first person in his family to become a doctor, he recalled his parents not having money for braces for him and the struggles of doing without.
He saw academics as a pathway to a better life and worked his way through school at the University of Missouri – Kansas City. As he built a successful practice with offices in Daytona Beach, New Smyrna Beach and Palm Coast, he also began taking regular trips to the Dominican Republic to repair cleft lips and palates.
Seeing the need in his own community, he started Operation Changing Lives to repair scars and deformities for those without a means to pay. The group does about 50 to 70 procedures a year – mostly locally – taking on cases based on need.
“It was horrible thinking they had to live their life that way – with no opportunity of being reconstructed,” Schalit said. “It’s a blessing to be able to do this.”
Four years ago, Operation Changing Lives removed a large tumor that threatened to suffocate another Haitian woman, Lorette Pierre.
The group’s motto: “All people deserve to live their lives with dignity.”
EATING AND SPEAKING
Once the cutting was done, Deline recuperated at Halifax Health Medical Center. She passed the time watching the Food Channel and wedding shows on TLC.
During a follow-up visit to Dr. Schalit’s office, Deline eats yogurt with a spoon – something she hadn’t done in years before the surgery three weeks earlier.
During her hospital stay, she sometimes gazed out the window and marveled at the cars parked down below, said Elcie Saint-Hilaire, a church member who volunteered to stay with Deline in the hospital. Deline had never seen that many new cars in one place.
She ate ice cream to supplement the nourishment she received through a feeding tube. On April 28, Deline left the hospital after being there for 24 days. She went to Dr. Schalit’s office for a follow-up visit. The swelling had started to subside, and her lip had contracted. While once her voice was soft and muted, now she spoke loudly.
“Her face is changing day after day,” Saint-Hilaire said. “Her lips are smiling. It’s amazing.” As she waited to see the doctor, Deline spooned yogurt into her mouth. That seemed unimaginable a few weeks ago. Though she had spent weeks in the hospital, Deline said she felt well
“Very well, very well,” Deline said through a translator. “Thank God. I feel comfortable.” Doctors want to perform a second operation on Deline. They would remove bone from her hip and implant it in her jaw. Then her jaw would regrow, allowing for dental implants. Only two of her bottom teeth remain.
But her challenges aren’t just medical related. Deline said she wants her children to grow up and be somebody. She wants them to succeed and thrive.
“That’s what any mother wants,” said Donna Philips, an insurance coordinator with Florida Oral & Facial Surgical Associates who opened her home to Deline and her translator.
Finding quality education for her children and breaking the shackles of poverty are battles Deline still must face. She’ll spend several weeks recovering in Ocala before going back to her home in Haiti.
THE OCALA CHURCH
It’s Mother’s Day in Belleview, a community just outside of Ocala. About 40 people are crowded into the small room in an office complex that has been converted into a church. Ocala’s Haitian population is small when compared to South Florida. Taco Bell is across the street from the church. A chiropractic office is next door. Most people would drive past the church and never notice it.
Deline stands in front of the church as the congregation sings a hymn. Church members raised money for Deline’s surgery.
The men wore suits and ties. The women showed off their best dresses and high-heel shoes. The high thump of a drum and a walking bass line injected a Caribbean flavor to the music. Speakers delivered their messages in their native Creole. The Bibles were in French and Creole.
“Merci, Jesus,” a woman shouted, as she kept the beat with a tambourine. Deline sat in a chair and faced about 40 people crowded together in the room. She smiled and held up her arms as the pastor praised God. When asked to say a few words, she sang. When she had the tumor, she could only mumble. Today, her voice filled the room.
“If I am still here, it’s all because of God,” she sang in Creole.
Anglade, a graduate student at the University of Florida studying economics, took the microphone and spoke. Deline taught him about faith, he said. That even when it seems all is lost, hope is never gone entirely.
Then Pastor Delima Dagis said a few words. His wife, Marie Dagis, found Deline in Haiti, and he ministers at a church in West Palm Beach. He was visiting Ocala to see Deline. has a part to play, Dagis said in Creole with his daughter translating the sermon for a reporter. The doctors removed the tumor, and the nurses helped Deline regain her strength. Church members opened their homes to Deline and sat by her bed.
And when it all came together, Dagis said, “God did a miracle.” God does not discriminate between rich and poor, Dagis told the congregation. It is their job to use their talents to help others – to do God’s work – whether they be rich or whether they have nothing, he said. Yes, he said, Deline smiled today. But many are still in need. In Haiti, they die every day from diseases that could be prevented and often are in richer nations – cholera, AIDS, tuberculosis and malaria.
While they die, Deline found herself in the United States because of a chance encounter with a missionary. Earlier in the service, Deline told the congregation she had never even ridden a donkey – let alone a car or an airplane – before embarking on her journey to the United States.
But that didn’t matter – not today. “She is worth a lot in the sight of God,” Dagis said. The congregation shouted, “Amen.”