ARTICLES RELATED TO:
Nemours Children’s Health, Delaware Valley

Rayne, an active pre-teen, was participating in a fun day at school, playing a game of Capture the Flag. During the game, a sudden and unexpected fall resulted in Rayne’s leg hyperextending. The impact was severe, and her left tibia cracked at her knee. Her parents immediately rushed her to their local hospital in Lewes, DE. Upon arrival, the hospital staff performed an X-ray, which revealed the fracture. However, the fracture involved Rayne’s growth plate, a critical area that requires specialized care to ensure proper healing and prevent long-term complications. Recognizing the severity and the need for expert pediatric orthopedic care, the local doctors referred Rayne and her family to Nemours Children’s Hospital, Delaware. Without hesitation, Rayne’s parents packed up and made the two-hour drive to Nemours Children’s. Upon reaching Nemours, the family was greeted by a team of highly skilled and compassionate medical professionals. “We were terribly frightened,” Rayne’s […]

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 […]

18-year-old Chloe is preparing for her next chapter while continuing to manage a rare skeletal dysplasia with the support of her care team at Nemours Children’s Hospital, Delaware. Her medical journey began early, and has been shaped by expert care, community, and a team that understands her unique needs. During her mother, Cynthia’s, pregnancy, an ultrasound revealed that Chloe would be born with a form of dwarfism. These early signs prompted close monitoring and additional testing after birth. It wasn’t until she was about 1.5 years old that Chloe underwent genetic testing, confirming a spondyloepiphyseal dysplasia (SED) diagnosis. SEDs are disorders that involve both the spine and the ends of long bones. Patients with SED often experience musculoskeletal problems with the neck, spine, lower limbs, feet, and joints. As her family navigated the early stages of her diagnosis, they connected with Little People of America (LPA). While attending an LPA regional […]

When doctors delivered the diagnosis of a cleft lip, Jackson’s parents found themselves at the start of a journey they hadn’t anticipated. During Christina’s 20-week anatomy scan, they learned about the condition and immediately began exploring care options to ensure Jackson’s well-being. During this process, Christina’s previous professional background at Nemours Children’s Hospital, Delaware played a significant role in their decision-making. For 10 years, she had dedicated herself to the care and support of families at Nemours Children’s, including three years working in the surgery clinics as a Surgical Medical Assistant and had the privilege of collaborating with the cleft team. Her firsthand experience with the hospital’s expertise and compassionate care gave her a unique perspective. At Nemours, Jackson’s family discovered not just a hospital but a community of care and support. Dr. Mario Aycart, the surgeon responsible for Jackson’s cleft lip repair, was clear and reassuring in his communication. […]

For Latisha, osteogenesis imperfecta (OI) has always been a part of life. Diagnosed around age 6 after multiple leg fractures, she knew the challenges that came with the condition. When she became a mother, she was determined to find the best possible care for her children. That search let her to Nemours Children’s Hospital, Delaware – the same place she had come to trust for her own care. Her children, Emerson and Lilly, were both diagnosed with Type 1 OI at birth. “Without the care from Dr. Franzone and the entire OI team, I’m not sure where my kids would be,” Latisha shared. OI, commonly known as brittle bone disease, is a genetic disorder that prevents the body from building strong bones. For Emerson, those fractures started early – he broke his leg three times in just one year after learning to walk. Lilly also faced fractures within months of […]

During the first few weeks of her life, Sadie’s parents noticed that she wasn’t meeting growth milestones. After several visits with her pediatrician and other specialists, she was ultimately admitted to a local children’s hospital where she underwent multiple tests to determine the cause. “They found an ovarian torsion that had caused a large mass in her abdomen that was removed during emergency overnight surgery,” shares Sadie’s mother, Ashley. “We hoped that surgery would be the end of the road for her medical complexities, but it turned out to be only the beginning. While she was still in the hospital, she was also diagnosed with torticollis, and upon further orthopedics follow-ups, it was realized that she had both hip dysplasia and scoliosis. Due to the number of diagnoses she had already accumulated within her first six months of life, she was referred for further genetic testing. A whole exome sequencing […]