Expanding Treatment Options for Children with Persistent Complex Sleep Apnea

Experts at Cincinnati Children’s Complex Obstructive Sleep Apnea Center are deploying innovative nerve stimulator treatments and other therapies to improve outcomes for children with persistent complex obstructive sleep apnea (OSA).

The team places implants in children with Down syndrome who are unable to tolerate positive airway pressure (PAP) therapy. For some patients to tolerate continuous PAP (CPAP) or bi-level PAP (BPAP), desensitization training boosts adherence and comfort.

Nerve Stimulator Implant Reduces Sleep Apnea

Cincinnati Children’s researchers participated in a multicenter pilot study funded by the National Institutes of Health in 2019 evaluating the safety and efficacy of hypoglossal nerve stimulator implantation in children with Down syndrome. The device stimulates the tongue to prevent obstruction during sleep, says Christine Heubi, MD, surgical director of the Complex Obstructive Sleep Apnea (COSA) center.

In total, including all sites, 20 children with Down syndrome aged 13 to 17 years received the implant. The study showed the device’s safety, and 85% of patients saw a reduction in their apnea-hypopnea index (AHI).

Today the COSA team is part of an NIH-funded, multicenter effort studying the impact of the implant on cognitive and language outcomes in patients aged 10 to 21 years with Down syndrome and severe OSA.

“Surgery is well tolerated,” Heubi says. “We’ve had many parents report significant improvement in quality of sleep and daytime functioning.”

Novel Evaluation Process

Cincinnati Children’s uses a novel assessment process and surgical workup to evaluate candidates for the hypoglossal nerve stimulator implant. Children receive a Cine (cinematic) MRI and a drug-induced sleep endoscopy (DISE). Pulmonologists, otolaryngologists and surgeons work together to assess the airway and identify sites of obstruction. A shared decision-making process with the patient and family determines if and what surgeries are recommended.

The COSA team is analyzing its assessment data to see how effective its evaluation tools are in choosing the best implant candidates.

“We continue to do soft tissue surgery, but this implantable device is the future,” Heubi says. Cincinnati Children’s has implanted the hypoglossal nerve stimulator in 25 children.

The team hopes to expand indications for the implant’s use as it continues to refine evaluation tools. The implant is approved by the Food and Drug Administration for use in children 13 years of age and above with Down syndrome and OSA.

Management for Severe OSA

Caring for children with severe OSA also involves medical management—such as CPAP/BPAP use—and desensitization strategies to achieve good results. Most patients receive adenotonsillectomy as a first-line therapy. CPAP/BPAP is the next step if:

• Persistent OSA is present after adenotonsillectomy
• A child is not a good candidate for surgery
• The family would like to defer surgery

The team assesses the efficacy of CPAP/BPAP through PAP titration sleep studies, says Alisha George, MD, a pulmonary and sleep specialist. They try different CPAP/BPAP settings and measure the results to find what works best for each patient.

“It is difficult to expect patients—particularly those with neurocognitive and sensory differences—to suddenly acclimate to CPAP during sleep,” George says. “We normalize the idea that it may be three steps forward, two steps back. We ultimately want the patient to be completely comfortable using CPAP.”

The team uses desensitization strategies that begin with daytime practice. Here’s the general process:

• Desensitization with the mask alone. The patient wears the mask with headgear a few times a day during an enjoyable activity. They gradually increase the amount of time they wear the mask during each practice session.
• Wearing the mask at night. Once daytime use is tolerated, the patient begins wearing the mask at night.
• Desensitization with the mask + pressure. A few times a day, the patient wears the mask connected to a PAP device, always during a fun activity. They gradually extend how long they wear the mask with the air blowing.
• Wearing the mask + pressure at night. The child begins using the mask with pressure at night.

Barriers to CPAP/BPAP use are continually evaluated at follow-up appointments. Patients who need additional assistance with PAP adherence are referred to a sleep psychologist. Short-term sleep aids may be prescribed. If needed, inpatient desensitization is available; this involves working with respiratory therapists and Child Life specialists for a few days.

(Published December 2025)

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