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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 […]

When Lex was just a baby, his pediatrician noticed something was off about the shape of his head, leading to a diagnosis of craniosynostosis, a condition where the skull’s sutures fuse prematurely. Craniosynostosis is when one or more seams between bones in a child’s skull close too soon. When this happens, the skull can’t grow properly and develops a different shape. Despite facing multiple surgeries and challenges, Lex and his family have found unwavering support and care at Nemours Children’s Hospital, Florida. Through it all, Lex has shown incredible resilience.  “His pediatrician noticed that his head shape was not normal and immediately referred us to Nemours,” shares Lex’s mother, Courtney. At Nemours Children’s the medical team conducted a series of tests and scans. In addition to the craniosynostosis, Lex was also found to have elevated cerebrospinal fluid (CSF) pressure, pituitary gland shrinkage, and a host of symptoms, including severe headaches […]

Hudson’s persistent symptoms of pain, feeding difficulties, and faltering growth left his mother, Heather, and her husband, searching for an explanation. Hudson’s condition had taken a toll on the family’s daily life. Heather shares, “Hudson would cry and be unsettled for numerous hours in a day. He would throw up his formula, and we had tried seven different types, hoping one would make a difference.” The constant vomiting made it nearly impossible to leave the house, and Heather had to resign from her 18-year career in Special Education to focus on her son’s care. Every day was a struggle, but Heather’s unwavering dedication and advocacy for her son never wavered. Determined to find answers, Heather and her husband reached out to multiple healthcare providers. It wasn’t until a CT scan at 6 months revealed brain swelling due to severe malnutrition that the true extent of Hudson’s condition became clear. “Prior […]

Born with a unilateral cleft lip and palate, Dylan’s journey has been marked by numerous surgeries and dedicated medical care. But it’s also a story of staying positive and forming lasting connections. A cleft of the lip or palate happens when a baby is born with an opening in the upper lip or the roof of the mouth (the palate). A cleft happens when parts of the lip and/or palate do not fuse together completely. For Dylan, this diagnosis has always been a part of his life. “I can’t really remember much from before then,” he reflects. “I always had the cleft lip and palate, and as a child, I thought it was normal. Every kid went through it.” When Dylan was around 5 years old, his family moved from California to Delaware. This relocation marked the beginning of his long-term relationship with Nemours Children’s Hospital, Delaware. “My mother had to […]

At a New Year’s Eve party, Nicolas’s parents noticed something was off when he didn’t react to the loud fireworks. This moment was a turning point, leading to a diagnosis that would change their lives. This incident prompted Nicolas’s family to seek further medical attention for their son. As they delved deeper into Nicolas’s symptoms, it became clear that something more significant was at play. The diagnosis, which came when Nicolas was just two years old, revealed a complex set of challenges: deafness in both ears, Cytomegalovirus (CMV), autism, mixed receptive-expressive language disorder, and global developmental delay. Each of these conditions brought its own set of hurdles, but the impact on communication was particularly clear. The symptoms of congenital Cytomegalovirus (CMV) infection can vary. Most babies infected before birth show no symptoms after delivery, but they are at risk for hearing, vision, neurological, and developmental problems. Even babies without clear […]

From the moment he was born, Bodhi’s life has been full of determination and discovery. Shortly after his birth, he didn’t pass his newborn hearing screening. At just one month old, Bodhi was diagnosed as profoundly deaf in both ears. What came next was a journey of learning, adjusting, and celebrating milestones big and small. In the words of his mom, Tabitha, discover Bodhi’s story: Bodhi is a twin, and prior to receiving treatment at Nemours Children’s Ear, Hearing and Communication Center for cochlear implants and speech therapy, he felt out of the loop – different, and somewhat isolated in his own silent world. Since being referred to Nemours Children’s by our primary care physician, Bodhi can now hear and articulate his needs and desires. His life has completely opened up! He loves music and loves to dance to his favorite songs. He gets to talk to his brother, his […]