Alex, a strong, brave, and smart patient with a passion for swimming, soccer, surfing, and music, has been on a long and challenging journey to find a solution for his sleep apnea. Living with Down syndrome, Alex’s struggle with sleep has been particularly difficult, often leaving him tired and unable to function well at school. Despite trying various treatments, including a surgery in October, Alex and his family were still searching for a breakthrough. That’s when Dr. Santino Cervantes, pediatric otolaryngologist at Nemours Children’s Hospital, Florida, recommended the Inspire implant—a groundbreaking treatment to help Down syndrome children with refractory severe sleep apnea. Alex, almost 14, became the first patient at the hospital to receive this innovative implant.
The Inspire implant is a device designed to assist with sleep apnea. When activated, the implant enhances the user’s breathing during sleep by giving gentle pulses to the airway muscles to keep the airway open, leading to better rest and improved overall function. It operates with adjustable settings, similar to a TV’s remote control. The user turns the implant on at night and off in the morning.
Before the surgery, Alex’s sleep apnea was having a great impact on his daily life. “Alex was always tired and not able to rest properly,” Kattia, Alex’s mom, explains. “He would sit up after a few hours of sleep and put his head between his legs, which made it difficult for him to use the sleep apnea machine.” This lack of rest was affecting his ability to function normally and pay attention at school. Kattia adds, “He was often tired throughout the day, and it was really hard to see him struggle.”
The procedure was a significant step forward, and Kattia was kept well-informed throughout. “Everyone was very friendly, explaining things in a beautiful way and always checking on our well-being,” she shares. The staff, including nurses and the anesthesia team, provided regular updates, ensuring that Kattia felt supported and at ease.
Dr. Cervantes, who led the surgery, was particularly praised for his exceptional care. “Dr. Cervantes was amazing,” Kattia says. “He and the entire team made us feel so comfortable and informed.” Alex was kept overnight for observation, a precautionary measure due to the novelty of the procedure and his specific condition. The following day, Kattia and Alex were able to return home, ready to embark on a new phase of Alex’s life.
The Inspire implant was activated a few weeks later, during a sleep study with Dr. Guerrero, and the results have been nothing short of remarkable. “It’s only been a couple of days, but I’m already able to operate the implant by myself at home,” Kattia shares. “Alex has gotten a good night’s sleep since activating the implant, his sleeping is much better. Today, he even slept until 7:45 AM; he normally is always up by 6:00 AM.”
Kattia’s hope for Alex’s future is clear and heartfelt. “I’m praying to God that he’s going to be able to sleep. I hope it will be a good way for him to go to sleep normally, so he can get rest, and he can breathe better and then he can go to school, pay attention, and have a beautiful life,” she shares. The positive impact of the surgery is already evident, and the family is optimistic about the long-term benefits. The implant is expected to last for 10 years before needing a battery replacement, providing Alex with a decade of improved sleep and quality of life.
Kattia also shares this advice for other parents considering the Inspire implant for their children, “Make sure your child stays overnight in the hospital after the surgery for safety. It’s important to be well-informed about the process, read extensively about it, and explore other treatment options before deciding on surgery. Understand your child’s specific needs and maintain open communication with the doctor. This will help you make the best decision for your child’s health and well-being.” The first Inspire implant surgery for a child with Down syndrome at Nemours Children’s Hospital, Florida is a significant milestone, reflecting the team’s expertise and dedication to improving children’s health. “I am honored that Alex and his family have trusted me and Nemours to perform his groundbreaking Inspire implant procedure,” shares Dr. Cervantes. “I know how challenging his sleep apnea has been, despite our best efforts with previous treatments and surgeries. Although Inspire is widely used in adults, I truly believe it will be revolutionary for Down syndrome patients with sleep apnea. I want all Florida Down syndrome patients and families to know about the program here at Nemours Children’s Hospital. This is exciting!” For families like Alex’s, this means a brighter, more rested future, and the opportunity to thrive in every aspect of life.
