Osteogenesis imperfecta (OI), commonly called brittle bone disease, is a rare and lifelong genetic disorder that affects the formation and strength of bones. Children born with OI have bones that break easily, often with little or no obvious cause. With the proper medical management and supportive care, most kids with OI can reach their full potential. At Nemours' internationally recognized Osteogenesis Imperfecta Program, our goal is to help children develop increased bone mass and muscle strength, manage their symptoms, and become as independently mobile as possible.
Osteogenesis Imperfecta (OI) Program
World-Renowned OI Care
Osteogenesis Imperfecta Services We Offer
As one of the world’s leading programs for the treatment of OI, we provide a complete range of medical care and support services. And, if your child has multiple medical needs, you can have access to — and coordinated appointments with — more than 30 other medical and surgical specialties, all right within our hospital.
Every child is different, so our care is tailored to every patient’s very specific needs. Some kids will need more extensive care than others. Our program’s range of services, available on-site when needed, includes:
- top expertise in genetic evaluation and medical management, and orthopedic care/surgery — the program is co-led by two of the world’s foremost experts in OI diagnosis, management and fracture (broken bone) care
- radiology (medical imaging) — for advanced images of the bones and joints
- expansive diagnostic services — including fetal diagnostic testing and perinatal consultations while your baby is still in the womb
- comprehensive medical management — may include medication to delay the loss of existing bone, and decrease pain and fractures
- assistive technology and wheelchair clinic — to help kids communicate, learn and get around
- state-of-the-art cast room — using specialized casting material and techniques to allow movement of affected areas and minimize additional risks of fracture
- on-site brace fitting, orthotic and prosthetic shops — orthotics and prosthetics can be custom-made right in the hospital
- certified physical, occupational, hand and speech/language therapists — part of an integrated program accredited by the Commission on Accreditation of Rehabilitation Facilities (CARF)
- plastic surgery — for any reconstruction your child might need for function and appearance
- neurosurgery — for treatment of problems affecting the nerves or brain
- pain management — to assist with fracture and post-surgical care
- neonatal care — for expert infant medical care right after birth
- psychology and social work — to help your child emotionally cope with OI
- transition of care — to help teenage patients and their families prepare for and get the care they need as adults, once they transition out of our program
Why Choose Us
The Osteogenesis Imperfecta Program at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.) offers state-of-the-art medical and surgical care for children with mild to life-limiting OI. We provide comprehensive, integrated medical management and advanced orthopedic fracture care, using specialized casting material and techniques to allow movement of affected areas and minimize additional risks of fracture. Families from across the country and around the world come to us for our acclaimed OI expertise.
Meet Isaiah and his family, who have worked with our world-renowned osteogenesis imperfecta specialists since before he was even born.
Osteogenesis Imperfecta Program Highlights
We offer our Osteogenesis Imperfecta Program at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.).
- consistently ranked among the top 10 children’s hospitals in the country for pediatric orthopedics by U.S. News & World Report
- diagnosis and ongoing care from the top experts in the field
- full spectrum of services, offering everything your child with OI would need as they grow
- innovative work in fractures, spine surgery and limb realignment
- research-based care — member of the Brittle Bones Disorders Consortium (BBD)
- Nobel Prize-winning EOS imaging technology (for the lowest possible dose of radiation to make medical imaging safer)
- nursing excellence — our nursing program at duPont Hospital for Children earned Magnet status (the country’s highest nursing credential)
- Ronald McDonald House of Delaware right across from our hospital’s campus, offering an affordable home away from home