Nemours is world-renowned for providing early diagnosis and expert treatment of rare skeletal dysplasia conditions like diastrophic dysplasia. At Nemours Children’s Health System, we work as a team to maximize children’s mobility, correct deformity and prevent complications — today and for the long term. If your child has been diagnosed with diastrophic dysplasia, we’re here answer your questions, create a personalized treatment plan, and give your child the best possible chance for a healthy future.
Internationally Recognized Treatment and Gentle Care for Rare Skeletal Dysplasias
Services We Offer for Diastrophic Dysplasia
Nemours offers a full range of care for newborns, kids and teens with diastrophic dysplasia. Services vary by specialist and location, but may include:
- advanced medical imaging to monitor changes in the bones and joints, as well as organs
- assistive technology to help kids communicate, learn and get around
- genetic testing to assist with diagnosis and family planning
- neonatal care for expert infant medical care right after birth
- orthopedic surgery and care that includes innovative procedures in spine surgery, limb reconstruction and clubfoot
- orthotics and prosthetics shops that can be custom-made right in the hospital
- otolaryngology (or “ENT”) to care for hearing loss and other problems due to abnormalities in the ear and larynx
- pain management programs just for kids
- physical medicine and rehabilitation offer physical, occupational and speech therapy
- plastic surgery for reconstruction needed for function and appearance
- psychology and social work to help kids emotionally cope with their condition
- pulmonology care for newborns with laryngeal stenosis due to diastrophic dysplasia, and respiratory issues as they grow
- surgery by pediatric neurosurgeons for problems affecting the nerves or brain
- transition of care when it’s time for adult care and services
Why Choose Us for Diastrophic Dysplasia Diagnosis and Care
Nemours Children’s Health System has been recognized for delivering advanced pediatric orthopedic care since 1940. Families from all over the world travel to see our skeletal dysplasia experts. Our genetics doctors have the experience and training to diagnose even the rarest types of skeletal dysplasia. Once we’ve identified your child’s condition, we work together to create a personalized treatment plan.
Treatment is led by our world-renowned pediatric orthopedic experts, including Dr. William Mackenzie. Since skeletal dysplasia can evolve and change with time, Nemours has established one of the world’s top pediatric imaging programs to track and measure changes to children’s bodies.
Our care navigators coordinate appointments since most kids need appointments with different specialists, and some may need multiple surgeries. We also help kids with diastrophic dysplasia achieve the highest possible function and quality of life through access to Nemours experts and support services, including:
- clinical trials research opportunities
- support services and community resources
Regional Diastrophic Dysplasia Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete care for children with diastrophic dysplasia at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.) and select Nemours duPont Pediatrics locations.
duPont Hospital for Children is ranked among the best children’s hospitals in the nation for pediatric orthopedics and surgery by U.S. News and World Report .
We offer complete care for children with diastrophic dysplasia at Nemours Children’s Specialty Care, Jacksonville and our hospital affiliates, Wolfson Children’s Hospital and Mayo Clinic in Florida, with outpatient and follow-up appointments available at select Nemours locations.
Nemours orthopedic specialists provide the care and orthopedic surgery and hold dual physician leadership roles at Wolfson Children’s Hospital’s orthopedics team, ranked by U.S. News & World Report as one of the 50 best children’s hospitals in the nation for orthopedics.