ST. LOUIS, Mo. - A 20-year-old woman who hasn’t spoken above a whisper since she was born can now speak — and sing — after traveling to Missouri from her Caribbean island for a life-changing surgery.
"From birth, when I found out that my daughter could not make any sound when she cries, it was troubling,", said Janice Horne of St. Vincent.
Horne’s daughter, Janiyah, was born with congenital laryngeal web, a rare condition that restricts the opening of the windpipe, said Dr. Jack Eisenbeis, an otolaryngologist at SSM Health Saint Louis University Hospital. An estimated one in every 10,000 people is born with the condition, but what made her case even more special is her age, Eisenbeis said.
"She very may well have been the only 20-year old in the world with this condition, as most are diagnosed at birth and undergo surgery at a very young age," Eisenbeis said.
The World Pediatric Project, a global nonprofit that facilitates specialized medical care for children without access, found a pediatric surgeon to help Janiyah, but her surgery was delayed for two years because of the COVID-19 pandemic. That made her an adult patient at the time of the operation.
Janiyah and Janice traveled to the U.S. in February and met Dr. Eisenbeis for the first time. Five days later, she woke up from surgery and coughed — a good sign that the surgery was successful.
"I didn’t know I had this volume of voice," Janiyah said a few weeks after surgery. "This is me now, stronger and more confident."
For Janice, who always worried that her daughter wouldn’t be able to call out to her when something was wrong, the surgery was nothing short of a miracle.
"My daughter can speak… you can understand the words that she’s saying, and she can sing," added her mother. "To God be the glory."
Photo courtesy SSM Health Saint Louis University Hospital.
It was the first time the St. Louis hospital partnered with the World Pediatric Project. The nonprofit pays to bring patients and their families to the U.S., while the doctors who treat them write off their fees.
"To meet people like this, and to have this change of course, it’s the most wonderful part about being in medicine," Eisenbeis said.