By Jessica Fargen |
Felistus Muthoni and her son Ian
Felistus Muthoni strains to hear her son’s labored whisper.
She bends down close to his Boston hospital bed to catch what the 6-year-old with the mischievous smile has to say.
“Mandazi,” whispers the boy, Ian Muiruri, referring to a doughnut-like Kenyan dessert.
His hoarse little voice warms her heart, says Muthoni, who has sacrificed much to bring Ian from Kenya to Boston, where doctors are doing novel and life-saving work to treat the out-of-control tumor on his voice box.
The benign tumor, called a laryngeal papilloma, has been growing on Ian’s larnyx for years, robbing him of his voice.
Until he arrived in Boston in May, Ian couldn’t speak. He couldn’t even whisper. When he cried, his mom saw only tears.
Left unchecked, the tumor would eventually overwhelm his airway, he wouldn’t be able to breath, and he would die, doctors say. When Ian arrived, the tumor was blocking 80 pecent of his airway, his doctor says.
Muthoni, who on Friday will celebrate Christmas for the first time away from home, said the sound of Ian’s voice is gift enough.
“It’s been my prayer all these days,” she said while Ian recovered from an operation where doctors removed a tumor half the size of a walnut. “My hope and dream is to be able to hear Ian talk. Now he can call my name. He can say, ‘Mom.’ ”
World-class care
In Kenya, Ian and his mother traveled on a cramped minibus up to three hours from their small town, Limuru, to Nairobi, where Ian had surgery every two weeks to shink the tumor. The frequent trips and surgeries were emotionally and physically scarring for Ian, Muthoni said.
“You can imagine how traumatic it is for a child to have a procedure every one to two weeks,” said Dr. Christopher J. Hartnick, a pediatric otolaryngologist and director of the pediatric airway, voice and swallowing center at Massachusetts Eye and Ear Infirmary, a clinical collaboration with Massachusetts General Hospital.
Hartnick called Ian’s condition life-threatening, but controllable.
“You can’t cure this disease,” Hartnick said. “What we try to do is limit the number of procedures they need in a given year.”
In Boston, Ian needs surgery every four to six weeks, and Hartnick is using advanced surgery and medicine not available in Kenya. Last Thursday, at Mass Eye & Ear, Ian had his 30th operation.
Ian is being treated with laser surgery specially designed to shrink the tumor while protecting his vocal cords.
In addition, he’s taking propranolol, a drug designed to treat high blood pressure, but one that Harnick believes holds promise in treating children with laryngeal papillomatosis.
Hartnick has treated just one other child, a boy from Minnesota, with the propranolol therapy.
“These are the first two children treated in the world with this therapy,” he said.
The type of tumor Ian has, which is caused by the human papillomavirus, affects roughly 4 out of 100,000 children in the United States, making it the most common benign airway tumor in kids, Hartnick said. It’s unclear how prevalent it is in Africa.
A mom’s sacrifice
Muthoni, hoping there was a better treatment for Ian, learned about Mass Eye & Ear on the Internet, and contacted the hospital.
When they agreed to see Ian for free, she raised $1,000 for their flights, quit her job at a library and left her 4-year-old daughter, Victoria, with her parents.
Ian and Muthoni are staying with a host family in Taunton, where Ian is in the first grade.
Hartnick said it was an easy decision to accept Ian as a patient.
“To have a child who can’t speak is just tragic. To have a child who every one to two weeks has to have an operation and can never have their life is tragic,” he said.
But Muthoni said she worries that Ian’s care in the United States could be coming to an end. Her one-year temporary visa expires in May, at which point it must be renewed or she will be forced to go back to Kenya. She is hoping to extend it for at least another year, or until Ian’s condition is under control.
“It’s important for him to stay a little longer. I think here he is safe,” she said.
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