Inspire Implant Offers Down Syndrome Teens a Chance to Breathe and Sleep Easier

For the past decade, the Inspire Implant has allowed adults with nighttime breathing difficulties to have a more restful sleep, leading to improved lives overall. 

Now, the procedure has been approved for use by a group of patients particularly prone to tongue collapse leading to sleep apnea: teens with Down Syndrome. 

“Those with Down Syndrome have breathing difficulty due to multiple areas in the throat,” said Dr. Saied Ghadersohi, Director of the Complex Sleep Program at Ann & Robert H. Lurie Children’s Hospital of Chicago and an expert at treating pediatric sleep apnea. 

“As they grow into their teens, the problem becomes even worse, with the base of the tongue being larger than normal and collapsing the throat. This leads to breathing issues during sleep.” 

Dr. Ghadersohi, who sees patients at Lurie’s Silver Cross Hospital location in New Lenox, noted that Continuous Positive Airway Pressure (CPAP) machines are the first line of treatment for this problem. However, these machines can be hard to tolerate even for adult users. 

This then leaves many of these patients with poorly treated sleep apnea, he said, which can cause other health effects and further hamper the quality of life for these Down Syndrome patients and their families who care for them. 

Inspire Can Help

Thanks to clinical trials over the last few years, the FDA in 2023 approved the Inspire Implant for teens with Down Syndrome who could not tolerate a CPAP machine. The first implantation of the device for a Chicago-area, Down Syndrome patient was then performed by Dr. Ghadersohi and his team on March 14 at Lurie Children’s Hospital. 

The Inspire device system, implanted during a 1½-hour surgery, delivers mild stimulation to key airway tongue muscles, allowing the airway to open during sleep. 

Patients are given a controller, and when they are ready for bed, they turn on the device. Users say they can feel the stimulation move their tongues forward away from their throats. 

When ready for bed, the person activates the stimulator. They can feel the stimulation move their tongue forward away from their throat. The device then pauses, giving the person a chance to go to sleep without that sensation. In the morning, they turn off the device. 

Dr. Ghadersohi sees pediatric Down Syndrome patients at Silver Cross from birth to early adulthood, and sleep apnea is common in this group of patients. He has developed an interest and expertise in sleep apnea care in Down Syndrome patients.  

Not for All Patients

To qualify for the procedure, he said, the teens already must have had their adenoids and tonsils removed, have a certain level of nighttime sleep and breathing deprivation, and showed they can’t tolerate a CPAP machine. Following further testing, the parents and patients can decide whether to proceed with the procedure. 

“The key to success is forming a partnership with the patient and their families,” Dr. Ghadersohi said. “This procedure really has a chance to be life changing for Down syndrome patients and families.” 

In addition, he said that there are very preliminary studies that have shown increased IQs and behavioral improvement in Down Syndrome teens using the Inspire device.  

“A better night’s sleep, as for anyone, can be a game-changer in their lives,” he said. “I hope to see many more prospective patients at Silver Cross.” 

Dr. Ghadersohi’s office is located on the campus of Silver Cross Hospital in Pavilion B. Inspire surgeries for qualifying pediatric patients are then performed at Lurie Children’s Hospital in Chicago. 

For more information about the Inspire Implant procedure, contact Emily White, pediatric registered nurse in Otolaryngology at Lurie’s, at (312) 227-7830.