Peter, a child with Down syndrome adopted from Hong Kong at the age of 3, has faced numerous health challenges throughout his life. His journey, including multiple surgeries and comprehensive care, is a testament to the importance of dedicated medical support.
Peter’s health issues were first identified when his parents noticed he wasn’t thriving. After consulting several specialists, a podiatrist with training at Nemours Children’s referred them to Nemours Children’s Health. After several tests, Peter received a critical diagnosis: his C1-C2 vertebrae were not fused, posing a significant risk to his spinal cord. In September 2017, Peter underwent a lifesaving C1-C2 fusion surgery performed by Dr. William Mackenzie and Dr. Jeffrey Campbell at Nemours.
Following the surgery, Peter showed remarkable improvements in various areas, including potty training, communication, and education. However, his journey was far from over as Peter was still experiencing complications with his foot. Further examinations with Dr. Mihir Thacker revealed issues with his left hip and right foot, leading to another surgery in January 2019. This procedure was followed by 8 weeks in a spica cast and 6 weeks of rehab. During this time, he was found to have additional complications including bladder issues that required surgical intervention.
Peter’s health journey continued with a second hip surgery in 2022, again followed by a lengthy recovery period in a spica cast and intensive physical and occupational therapy. In the years that followed, Peter experienced kidney events, feeding issues, and was eventually diagnosed with severe sleep apnea. Each of these challenges was addressed with comprehensive care at Nemours, involving a multidisciplinary team of specialists.
One of the significant milestones in Peter’s care was the diagnosis and treatment of his severe sleep apnea. After unsuccessful attempts with CPAP, Dr. Heather Nardone and Dr. Nicole Aaronson suggested the Inspire device, which was implanted in June 2024. 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. This intervention began a new chapter in Peter’s ongoing health journey, vastly improving his quality of sleep.
“Everyone we met at Nemours, from the doctors, nurses, technicians, therapists, housekeepers, cafeteria workers, security personnel, everyone was so friendly and focused on giving the best care to our son, and our whole family,” shares Peter’s mom. “They listened intently to our concerns and met our needs. There is nowhere else that we will ever take our son while he is still able to go.”
“We have asked for very specific help and have gotten it,” says Peter’s mom. “The teams have been very kind to follow-up with us and give us good advice as to how to proceed with care and honestly telling us when we completed the treatments prescribed.”
As Peter continues his health journey, his family is focused on several upcoming milestones. Regular yearly eye exams at Nemours will remain a priority. In the near future, Peter will undergo another sleep study to assess the effectiveness of his Inspire device. Additionally, his family is working with his nephrology team to monitor his kidney health. Plans are also underway to more permanently address Peter’s shallow left hip issue now that he is done growing. These ongoing medical check-ups and interventions demonstrate the continued commitment to managing Peter’s health needs.
To parents navigating complex health needs for their children, Peter’s mom shares, “You are the parents, and you do not need to feel intimidated by medical specialists. If they don’t listen to your concerns and take your child’s care in a direction that doesn’t seem right to you, come over to Nemours Children’s Hospital. Ask your questions, no matter how silly they may be, take notes, and send follow-up questions through the portals. The staff at Nemours has your backs and will do their utmost best to help you and your child throughout any crisis. Together, you can secure a bright future for your child!”
