BUFFALO — Eighteen-year-old Rayshawn “Ray” Barrett hadn’t slept soundly in years. His obstructive sleep apnea was so pronounced that he was regularly falling asleep in class, his grades were dropping, and he couldn’t follow the drills on his Sweet Home High School lacrosse team because his short-term memory was so compromised.
“We had a healthy son, a good student, and strong athlete. That all changed out of the blue right before his junior year of high school,” said his mother, Bernice Barrett. “At nighttime, my family and I would hear Ray’s loud snoring, followed by an eerie silence. He would just stop breathing. It was terrifying.”
Barrett received what his mother calls a miracle on June 19 at John R. Oishei Children’s Hospital where a University at Buffalo team implanted in Barrett’s chest a 2-by-2 inch device that makes quality sleep possible. He became the first adolescent patient in Buffalo to undergo the procedure.
The FDA-approved device, created by Inspire Medical Systems, stimulates the hypoglossal nerve — which controls functions of the tongue — and helps keep the airway open during sleep.
The device is designed for people who are unable to tolerate a continuous positive airway pressure (CPAP) machine. Barrett fell into this category.
“After we got the sleep apnea diagnosis, Ray tried five different masks over two years,” his mother said. “He couldn’t handle the mask. It was giving him panic attacks and making his already high blood pressure spike.”
Michael Markiewicz, DDS, MD, professor and Feagans Endowed Chair of the Department of Oral and Maxillofacial Surgery in the UB School of Dental Medicine, performed the surgery after being referred by Amanda Hassinger, MD, clinical associate professor of pediatric sleep medicine in UB’s Jacobs School of Medicine and Biomedical Sciences. She is also Barrett’s pediatric sleep medicine physician.
“This is the youngest patient we have done the procedure on thus far,” Markiewicz said.
Opens the palate and airway during sleep
Sleep apnea affects more than 30 million adults in the United States, although formal diagnoses represent only a fraction of this number, according to the American Academy of Sleep Medicine.
While sleep apnea is much less prevalent in children and adolescents, it’s more common than many people think, said Hassinger, who completed a sleep medicine fellowship at UB in 2020 and helped develop the only pediatric-dedicated Sleep Medicine Center in Western New York at UBMD Pediatrics.
Many children and adolescents have success with CPAP, but not all of them can tolerate the machine’s mask, especially those who have conditions such as Attention Deficit Hyperactivity Disorder (ADHD), autism, and Down syndrome, she said.
Once implanted, the device opens the palate and airway during sleep to alleviate the obstruction that causes sleep apnea. It has three components: a programmable neuro-stimulator located in a chest pocket, a pressure sensing lead that detects the patient’s breathing, and a stimulator lead that delivers stimulation to the nerve that controls the muscle in the tongue and soft palate.
The sensor in the chest can time the stimulation to the nerve to match when the patient is about to take a breath. It is controlled via a handheld remote control, which patients hold over the sensor before they go to sleep, Hassinger explained.
When they learned about this device, the Barrett family met with Hassinger, and she referred them to Markiewicz, who also serves as clinical co-director of the Laurence C. Wright Craniofacial Center at Oishei. He successfully performed the implant nerve stimulator surgery on two adult patients last fall.
Because the FDA only approves the procedure for adults and children with certain conditions, Barrett had to wait until he turned 18.
When he was approved, Bernice Barrett said it was such a blessing. Although the physicians waited a month for her son to heal before turning on the device July 31, she could see changes almost immediately.
“It was transformative,” she said. “The very first night Ray slept for eight hours straight. He also was able to attend prom, participate in his high school graduation, and every weekend, he was out on the field playing lacrosse. He’s come a long way and continues to improve.”
Procedure intended for patients with Down syndrome
Now that they’ve performed the procedure successfully on an adolescent, the UBMD Pediatric Sleep Center and Markiewicz’s team aim to make it available to pediatric patients with Down syndrome.
“Typically, kids with Down syndrome have very large tongues and their airways are compromised,” Markiewicz explained. “They can have really bad obstructive sleep apnea.”
Currently, this is the only pediatric population for which the FDA has approved the procedure and that insurance will cover. Hassinger and members of the surgical team have been meeting with parents through GiGi’s Playhouse, a community facility in Western New York for individuals with Down syndrome, to identify adolescents who may qualify.
Because the surgery includes implanting the device in the chest cavity, Hassinger recommends performing the procedure only on children who are past puberty, typically age 14 and up, at the point where their chests will not continue to grow significantly.
“I’m envisioning that we’ll have three to four of these implants a year based on the number of children in Western New York who would qualify,” Hassinger said.
Down the road, she said they would like to offer the procedure to children and adolescents outside of the Buffalo area, and eventually, become a regional center for the procedure.
For Barrett, the procedure was not only a game changer but a lifesaver.
“My goal as a mom is to see Ray go to college and eventually get a job and have a family,” Bernice Barrett said. “Without this surgery, I don’t know if any of that would be possible.”