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Adopted from Colombia two years ago, Miguel’s congenital limb deformity had left him unable to stand or walk, relying on his knees and a wheelchair to navigate the world. “We were aware of his congenital limb deformity, but we weren’t exactly sure what that would mean for him in the course of his life,” his mother, Jennifer, shares. Life before treatment was a series of adaptations and challenges. Miguel had developed his own way of navigating the world. He would “walk” and crawl on his knees, using custom knee pads to cushion his movements. “He was amazingly active,” Jennifer shares, “but he did have frequent pain and skin issues from ‘walking’ on his knees.” His inability to stand or reach things independently made everyday activities a constant challenge. His family’s resolve to find a solution grew stronger with each passing day. “Because he also has shortened arms, we realized that […]

When Allison was 21 weeks pregnant, she and her husband, Chris, learned that their son, Jackson, would be born with diastrophic dysplasia, a form of dwarfism. After his birth and spending 37 days in the NICU at their local hospital near their home in Virginia, they began to see specialists for Jackson’s care. “Shortly after learning Jackson’s diagnosis, we connected online with another family whose son also has diastrophic dysplasia,” shares Allison. “They recommended we consult with the skeletal dysplasia team at Nemours Children’s. While Jackson was still in the NICU with feeding issues, we were in contact with Angie Duker, MS, CGC.” In May of 2016, when Jackson was just 3 months old, they made their first visit to Nemours Children’s Hospital, Delaware. “As diastrophic dysplasia is not as common as other types of skeletal dysplasia, we were looking to find care from medical professionals with specific and successful experience with the […]

At 17, elite soccer player, Anel, faced a daunting diagnosis of a torn acetabular labrum and femoroacetabular impingement (FAI), threatening his athletic dreams. For Anel, the first signs of trouble appeared during a significant growth spurt. “I initially had pain back in 2022 when I had a growth spurt and never thought anything of it,” Anel shares. Though he dismissed it, the pain persisted, and after months of intermittent issues, his athletic trainer at Jacksonville FC recommended he seek further medical attention. It was then that Anel was referred to Nemours Children’s Health, Jacksonville. When Anel started receiving treatment from Sports Medicine Director, Dr. Stephanie Pearce and Caitlin Schlosser, MHA, ATC, OTC, they quickly realized the severity of his condition. “They immediately found out the problem with an MRI scan, and we proceeded with a treatment plan,” Anel explains. The first approach was to try a less invasive method, a […]

Megan and Brian were overjoyed when they learned of their pregnancy with Emma. Like many expectant parents, they were filled with excitement and anticipation. However, their journey took an unexpected turn during a routine 24-week OB/GYN visit. Their doctor noticed that Emma’s growth had dropped significantly to the 3rd percentile, a development that immediately raised alarms. “It was recommended we see Maternal-Fetal Medicine specialists on account of the high-risk pregnancy,” share Megan and Brian. “After several more visits and an amniocentesis, we learned that Emma had achondroplasia, about one month before she arrived.” Achondroplasia is the most common skeletal dysplasia leading to disproportionate short stature. “We are both average height parents and do not have any family history of achondroplasia, so we did not know a great deal about the condition until we met our sweet Emma,” share Megan and Brian. In Emma’s case, her achondroplasia was caused by a […]

The advanced delivery unit (ADU) at Nemours Children’s Hospital, Delaware recently reached a major milestone — welcoming 300 babies into this world! Expectant parents can take comfort in the comprehensive multidisciplinary care model of the Nemours Advanced Delivery Program, which is designed for babies diagnosed with medical conditions before birth that require a post-delivery intensive care unit stay. This planning ensures that newborns’ medical needs are met, allowing access to nationally renowned pediatric specialists and providing families with necessary support and guidance during a critical time. The story of baby Ricky’s family illustrates the program’s benefits, as they chose to plan his arrival at the Nemours Children’s ADU after he was diagnosed with a congenital heart defect (CHD) before birth. When a Family Learns Their Baby Needs Extra Care Most commonly, families learn their unborn baby will need specialized care during a routine prenatal ultrasound. Ultrasounds during pregnancy are often […]

Nemours Children’s Health cancer research shows parents and providers may disagree on how to prioritize support The Emotional Side of Childhood Cancer Care When a child is diagnosed with cancer, parents and care teams share the same goal: making sure the child gets the best care possible. But pediatric cancer care goes beyond treatment. Children and families facing a cancer diagnosis often need psychosocial resources like mental and emotional support. New cancer research from Nemours Children’s Health shows that while both parents and healthcare providers agree that these resources are important, they don’t always agree on which ones should come first. Inside the Research: Exploring Priorities in Family Support In 2015, experts and cancer advocates, including Nemours Children’s researchers, published the first Standards for the Psychosocial Care of Children with Cancer and their Families. These guidelines define best practices for this area of pediatric oncology care and how to best […]