High School Student’s Life Transformed by Sleep Device

At 9 years old, Danielle Taraba of Burton, Ohio, was diagnosed with obstructive sleep apnea, a condition in which breathing repeatedly stops and starts.

“She had numerous sleep studies and tried three different times with the CPAP machine, but in the middle of the night, she would whip off the mask,” says her mother, Sandy. By the age of 11, Danielle quit using the CPAP machine despite being jolted awake every time she stopped breathing.

“She would wake up in the morning with the sheets and blankets thrown around, looking like she’d had a party in her bed,” Sandy says. “At night, she would stop breathing, sit up, and then literally fall forward while sleeping, bent over like a pretzel.”

Danielle’s sleep apnea finally came to an end on March 8, 2024, when, at age 17, she became Cleveland Clinic’s first pediatric patient to receive an implanted device called Inspire^®. Currently, only pediatric patients with Trisomy 21, also known as Down syndrome, are eligible for the device, which allows for breathing and sleeping without a CPAP machine. Cleveland Clinic is one of only a handful of hospital systems in a seven-state region to offer the procedure.

A multidisciplinary team was involved, including Brandon Hopkins, MD, Section Head of Pediatric Otolaryngology, and Swathi Appachi, MD. Danielle’s device was implanted during an outpatient procedure, under general anesthesia. An incision was made in her upper neck near her jaw to locate the part of the nerve that moves the tongue and place an electric stimulation cuff around it. Another incision was made in her upper chest, where the device and a sensor were placed between her ribs, and then everything was connected. After a month of healing, Danielle saw Vaishal Shah, MD, MBBS, MPH, Interim Director of the Sleep Disorders Center, who activated, programmed and adjusted the device over several weeks. She then used remote control to turn on the device before going to sleep. From that point on, her treatment became automatic, with each breath protruding her tongue and opening an airway behind it.

“Before surgery, Danielle had pauses or slowing in her breath 16 times an hour,” Dr. Hopkins says. “Just imagine someone shaking your knee 16 times an hour when you’re sleeping. CPAP blows up the pharynx like a balloon to open the airway. The Inspire^® device does it the opposite way, moving the tongue forward to allow the person to breathe normally.” This device decreased her breathing pauses down to twice per hour or lower.

Typical characteristics with Trisomy 21 include larger body mass, a smaller jaw and a flatter midface, Dr. Hopkins says. “They help create a perfect storm for obstructive sleep apnea. Over the years, removing the tonsils and adenoids has been highly successful in a typically developing child, but with Trisomy 21, the chances of sleep issues are really high. These kids are starting with challenges from a developmental standpoint, and adding poor sleep and an inability to focus and concentrate contributes to them. In the past, removing their tonsils and adenoids was helpful, but not a home run, and CPAP can be a struggle in this population. There aren’t a lot of great options, and these kids are severely affected because they are high-energy. When they don’t sleep well, they get further behind.”

In addition to the severity of her sleep apnea, another important factor was that Danielle is high-functioning and could be compliant in using her device, Dr. Hopkins says. “She has been a great patient because you have to be able to participate. That was always a question, of how well can the patient participate with device programming. She’s been awesome! Lots of kids are unable to interact like Danielle can.”

Dr. Shah concurs that very careful consideration was given to selecting Danielle for the procedure. “All prior evaluation and treatments were conducted and reviewed by me, in coordination with the surgical team,” he says. “Initially, after the implant, I saw her every six to eight weeks, and now that the device treatment is optimized, every three to six months. She has done well without any major complications. Her symptoms and sleep quality have improved as reported by her and parents.”

A well-trained, multidisciplinary team is essential in managing complex obstructive sleep apnea, Dr. Shah says. “Cleveland Clinic’s team includes sleep, otolaryngology, a developmental pediatrician, pulmonary and other teams, which seamlessly work together to provide the best outcomes for patients. The most important part of the team are the patients and their families. In Danielle’s case, all of the members, including her, came together to help her succeed.”

Dr. Shah emphasizes that Inspire^® is an option only for patients with obstructive sleep apnea who cannot tolerate CPAP and either had adenotonsillectomy or are not candidates for it. These remain the treatments of choice for most of the Trisomy 21 population. “Patients also may have other sleep issues,” he says. “With medical advances, there are newer techniques and methods possible to help improve their lives. I advise parents to keep patiently working with their medical providers and multidisciplinary team to explore options and help them.”

For Danielle, the Inspire^® device has been “life-changing, like night and day,” Sandy says. “She now goes to sleep either on her back or side and wakes up in the same position. No more tossing and turning and flipping sheets and blankets. They are still in place when she wakes up.”

A high school senior, Danielle is passionate about her many athletic pursuits. “She’s been cheering since second grade and has been a varsity cheerleader for football and basketball,” Sandy says. “She has played football and all the adaptive sports for the last five or six years. She also is an incredible swimmer and has participated in the Special Olympics since she was 11, winning several gold, silver and bronze medals in swimming, and also several medals in track-and-field events.”

Cleveland Clinic continues to play an important role in her life, Sandy says. “Dr. Shah, Dr. Hopkins and anybody we have seen there have been absolutely incredible with her. She loves them. I can’t say enough good things about her team.”