For the first 20 years of her life, Janiyah Horne, could not speak above a whisper. Growing up on the Caribbean island of St. Vincent, she struggled in school because of it, and her mother, Janice, always worried that she would not be able to hear her daughter cry for help if anything ever happened to her.
“From birth, when I found out that my daughter could not make any sound when she cries, it was troubling,” Janice said.
Janiyah always wondered why she was born without a voice. That’s where Dr. Jack Eisenbeis, otolaryngologist at SSM Health Saint Louis University Hospital stepped in.
“She was diagnosed with a congenital laryngeal web, which restricts the opening of the windpipe,” Dr. 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.”
Janiyah’s condition is rare. It’s estimated only one in every 10,000 are born with a laryngeal web, but it is even more rare at her age. Though she had already reached adulthood, it was the World Pediatric Project that brought her here.
“Typically, we work with SSM Health Cardinal Glennon Children’s Hospital in St. Louis,” said Natalia Rosales, U.S. Referrals Program Director for the World Pediatric Project. “But due to COVID, Janiyah’s surgery was delayed for two years which made her an adult patient rather than a pediatric patient.”
“We were excited to partner with World Pediatric Project for the first time,” said Dr. Matt Broom, Chief Medical Officer for SSM Health SLU Hospital. “They cover all the costs of bringing a patient and their family to the United States, so we worked with our SLUCare Physician Group to write off the professional fees.”
Janiyah and her mother arrived in the United States in February and met Dr. Eisenbeis for the first time on February 11. Five days later, Dr. Eisenbeis operated on Janiyah, and as she began to wake up from the surgery, she coughed, which was a good sign that the surgery was a success. As the weeks progressed, so did Janiyah and her voice.
“I didn’t know I had this volume of voice,” Janiyah said.
“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.”
