This World Voice Day, we share the stories of three young people who regained their voices thanks to the Voice and Velopharyngeal Dysfunction Program at Boston Children’s Hospital.
As a frequent actor in community theater, Rowan needs his voice to be strong and clear. So when his parents noticed his voice was becoming increasingly hoarse in late 2017, they asked his pediatrician about it during his annual checkup.
Rowan’s pediatrician referred him to the Voice and Velopharyngeal Dysfunction Program, and he was scheduled for an appointment at the Waltham campus. Rowan met with a voice therapist and had an exam with otolaryngologist Dr. Anne Hseu, who diagnosed him with nodules. She explained the condition was something that often disappeared with adolescence, but could often be managed with voice therapy until that time.
“At first, Rowan was a little hesitant about the consultation” says his mom, Carin Aquiline. “But after he met with the voice therapist and doctor for the evaluation at the Waltham campus, he was less skeptical about going.”
At the time, Rowan had just landed one of the lead roles in his school play. “Since he was going to be singing and using his voice more than usual, we decided to start the voice therapy right away,” says Carin. Rowan met with speech-language pathologist Roseanne Clark for 10 sessions over a period of 3-4 months.
During their sessions, Roseanne would try to work in material from his play whenever possible. “We also did a lot of speaking stuff, like making sounds and reading books out loud, which helped for sure,” says Rowan. “I used to lose my voice a lot, especially at the start and end of sentences, I’d just get cut off. That happens much less often now.”
“From our perspective, it was very helpful,” says Carin. “If he didn’t do his exercises from session to session, he could really see the difference. We also appreciated the way Roseanne and everyone at the clinic interacted with him. “They made him feel comfortable and that was very reassuring to him.”
It’s been a little over a year since Rowan’s last visit. Carin says he hasn’t had any major flare-ups, but if he gets a little hoarse, he can manage by doing the exercises Roseanne taught him. That’s a good thing, because he recently started rehearsals for a production of “Newsies” in his community theater group that will go up in May.
Nicolas FloresQuero always had a hoarse voice, but his parents became concerned when it seemed to be getting worse as he got older. “We really started noticing it more over the last two years, especially when he was reading out loud,” says his dad, Jaime. “He would start reading a sentence and run out of air, like he was losing his voice. We noticed it usually got worse as the day progressed, and there were some days when he would lose his voice completely. It was like he was putting too much effort into talking.”
Nicolas’ voice issues led to trouble performing in school and difficulty communicating with other kids. “We reached out to a few speech therapists, but they didn’t want to take his case,” says Jaime. Finally, a teacher at Nicolas’ school recommended the Voice and Velopharyngeal Dysfunction Program. “We thought any speech therapist would be able to help, but we learned it’s a really specific field and Boston Children’s is the best place to go for this type of voice therapy.”
At Nicolas’ first visit, the otolaryngologist, Dr. Roger Nuss, diagnosed him with vocal fold nodules, a common cause of hoarseness in children. He recommended voice therapy to help reduce the nodules.
Nicolas began meeting with voice therapist, Karen Thompson, and Jaime says they started noticing changes in his voice after just three or four sessions. “He was a little afraid to go at first, but Karen was so great working with him that he was excited to go after he met her,” says Jaime. After each session, Nicolas would come home with lists of specific words that were hard for him, and he would practice making the different sounds.
“After 12 sessions, he was like a completely different kid,” says Jaime. “We were really concerned last year, because he couldn’t even read a paragraph from a book without getting winded. Now he can speak and read out loud with confidence.”
It has been about a year since Nicolas’ last visit and he is doing great. A follow up visit with Dr. Nuss found that the nodules are greatly reduced. Now in fifth grade, Nicolas is doing well in school and loves playing hockey and hanging out with younger siblings, Alex, 6, and sister, Sofia 9.
Ben Sagerian was always a social, outgoing kid, who liked participating in theater and musicals. Then in the beginning of eighth grade, he lost his voice and everything changed.
“He got strep throat that September and even after it was treated he kept saying his throat hurt,” says his mom, Jen. “We had him retested for strep and mono, but the tests came back negative.”
Meanwhile, Ben’s symptoms continued to get worse until he completely lost his voice. When forced to communicate, it was in a hoarse whisper. His parents brought him to a local otolaryngologist who diagnosed Ben with acid reflux and prescribed an antacid. This didn’t relieve his symptoms.
“By December, we were at our wits end,” says Jen. “Ben said the pain in his throat was horrible. And because he couldn’t communicate in school, he was becoming more introverted. His whole personality changed.” The doctor ran more tests, but couldn’t find a problem.
After many more unsuccessful visits with doctors, Jen did some internet searches on her own and found a story about a boy who had similar symptoms and had been treated at a specialized voice center. This led her to the Voice and Velopharyngeal Dysfunction Program.
“We had answers at the very first visit,” says Jen. In the morning, they met with Roseanne Clark and Dr. Roger Nuss. After the exam, they went into a room filled with monitoring equipment and television screens. Roseanne asked Ben to make sounds and they all watched his vocal cords on the screens while he did this. The problem was clear: Ben’s vocal cords weren’t working correctly; he had a condition called muscle tension dysphonia.
“The best thing was that the treatment was voice therapy, no medication,” says Jen. Ben met with Roseanne every week in the Waltham office to work on his voice. Because his voice also happened to be changing, he wasn’t used to the sound of his new voice and had become almost afraid to talk.
“I feel like Roseanne and Boston Children’s helped him not only with his voice, but also with the emotional issues around not talking,” says Jen. The family was planning a trip to Portugal that April and worked with Roseanne to make a deal with Ben. “We told him no more whispering on vacation,” says Jen. “Even though it was painful at first, he did it. When we got back, he was talking normally.”
Now a sophomore in high school, Ben is back to his former gregarious self and is involved in every musical that comes his way. He’s also an avid skier. “Working with Boston Children’s has been the biggest gift,” says Jen. “If we hadn’t found this program, I’m not sure what would have done.”
Learn more about the Voice and Velopharyngeal Dysfunction Program.