Primordial dwarfism is a class of disorders where growth delay happens at the earliest stages of a baby’s development in the womb. Unlike other types of dwarfism, children with primordial dwarfism are born smaller than average. Nemours is world-renowned for diagnosing and treating skeletal dysplasias, including primordial dwarfism. We’re here to answer your questions, ease your concerns, and build a personalized care plan to help your child live life to the fullest.
Internationally Recognized Treatment for Primordial Dwarfism
Services We Offer for Primordial Dwarfism
Nemours offers a full range of care for newborns, kids and teens with primordial dwarfism. Services vary by specialist and location, but may include:
- advanced medical imaging to monitor changes in the bones, joints and organs
- congenital heart defect expertise that includes heart surgery
- fetal diagnostic testing in our perinatology and fetal medicine centers to help us diagnose and make a treatment plan for when your baby’s born
- gastroenterology helps with nutrition support
- genetic testing to assist with diagnosis and family planning
- neonatal care for coordinated, critical care immediately after birth
- orthopedic care from one of the largest and most widely respected pediatric programs in the world, providing innovative work in spine surgery and limb realignment
- orthotics and prosthetics that can be custom-made right in the hospital
- otolaryngology (or “ENT”) expertise for ear infections and early audiology needs due to structural differences
- pain management programs just for kids to help with symptoms or post-surgery pain
- 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 respiratory needs and ongoing infections as kids grow
- transition of care when it’s time for adult care and services
Why Choose Us for Primordial Dwarfism 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, like primordial dwarfism. Once we’ve identified your child’s condition, our care teams work together to create a personalized treatment plan that meets your family’s needs.
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 to see different specialists, and some may need multiple surgeries. We also help kids with primordial dwarfism achieve the highest possible function and quality of life through access to Nemours experts, clinical programs and support services, including:
- clinical trials research opportunities
- support services and community resources
Regional Primordial Dwarfism Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete care for children with primordial dwarfism 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 primordial dwarfism 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.