SLU Hospital treats rare congenital medical condition to help 20-year-old regain her ability to speak

Jennifer E. Engen

ST. LOUIS, Mo. (KMOV) – For all of 20-year-old Janiyah Horne’s life, she has never been able to make a sound higher than a whisper using her voice.

“I tried to talk louder, but then I realized it’s a little low pitched,” said Janiyah.

Yet, she has maintained a positive attitude despite her circumstances.

“Never let anything you do get you down,” she tells News 4 during a Zoom interview.

Janiyah was born in St. Vincent and the Grenadines, but unlike other newborns, she could not make a sound. It is known as a rare medical condition called Congenital Larngeal Web.

“If the development of the vocal cord stops, then they never separate and form two cords, and it becomes a web,” said Dr. Jack Eisenbeis, a Professor in the Department of Otolaryngology at SLU Care, “And the webs can be graded 1,2, 3, 4— 4 being the most severe. And she had a grade 4 web. She nearly had her entire airway obstructed at the level of her vocal cords.”

Over the years, Janice Olliver Horne tried working with specialists in St. Vincent in the Grenadines to improve her daughter’s voice.

“I rushed her to the emergency unit,” said Janice, recounting a memory from Janiyah’s childhood when she was not making any crying noise when milk got into her nostrils. “I found that it was strange, so when I got to the emergency unit, I explained the situation. They said that’s not normal. she would have to see a specialist.”

She was assured that over the years, her ability to speak and breathe well would improve, but that time never came.

“Janiyah was not happy with her voice after she entered secondary school. She was not comfortable. Hence the reason, it affected her learning process,” said Janice.

“To not be able to communicate, not to be able to share how you feel or what you think, because she really didn’t have a voice loud enough,” said Eisenbeis.

Through a St. Louis based non-profit called the World Pediatric Project, Janiyah and Janice were connected with Dr. Eisenbeis at SLU Hospital.

“The pandemic came and low and behold, she got old enough that she really wasn’t a candidate for a pediatric hospital, so when they said Janiyah would like to come to the United States and have this done, we had meetings with the people at Saint Louis University Hospital,” said Eisenbeis. “And they said, ‘by all means.”

She showed up for the first time in St. Louis during the second week of February.

“I had imagined what her voice was going to sound like,” said Eisenbeis. “And when I was sitting three feet in front of her and I turned my head to look away from her and I couldn’t hear her, I just thought, ‘Oh my gosh, how hard has her life been relative to anyone else’s.”

Eisenbeis conducted surgery on her vocal cords by separating her webbing through the middle and opening up a path for her to speak.

Janice remembers the moment her daughter made noises for the first time.

“I started to clap; I was so happy,” said Janice. “And then right there and then, she was trying to clear her throat, so I heard that, ‘cough cough,’ and I was like, ‘That’s so good.”

Now, around 12 weeks since her surgery and following rounds of speech therapy, Janiyah says she finally feels heard.

“If I have to communicate, people will be able to hear me,” said Janiyah.

“She speaks to me all the time. She sends WhatsApp audio recordings almost every day,” said Eisenbeis. “And she sent one about a week or two ago and she said, ‘listen to me scream’.”

It is a newfound strength within.

“Now, she can hold a conversation, and talk to people. She can stay in the backroom and I’m in the kitchen and she will call me, and I will hear her,” said Janice. “I just want to say a big [thanks] to the team at Saint Louis University Hospital. I want to thank them very much. And Dr. Eisenbeis…he’s still Janiyah’s doctor, he’s still our friend, and he’s family.”

As she continues to grow her voice and confidence, Janiyah hopes her journey shows others they can also get the help they need to improve their life.

“To get back on track, to do the hobbies, and following life and do what they want to achieve,” she said.

“[It’s] the fantastic part about being a doctor,” said Eisenbeis. “To see her have the opportunity to have the rest of her life be fantastically improved and better…and jobs and relationships and friends, and all the things that she will develop over the decades ahead, that really was not available to a girl who pretty much spent most of her time at home.”

https://www.kmov.com/2022/05/18/slu-hospital-treats-rare-congenital-medical-condition-help-20-year-old-regain-her-ability-speak/

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