Osteogenesis Imperfecta Program

Osteogenesis imperfecta (OI), often called "brittle bone disease," is a genetic disorder that causes fragile bones that can break easily. People with OI are prone to many orthopedic issues including frequent fractures, bowed (or curved) bones in the arms and legs, and scoliosis (curvature of the spine). OI is also associated with bowed limbs, short stature, and hypermobile joints. Heart problems, dental issues, and hearing problems can also happen. With proper medical and surgical care, most kids with OI reach their full potential.

Our team is part of award-winning pediatric orthopedics centers in Delaware and Florida. In Delaware Valley, our OI care is world recognized. We offer the latest medications, clinical trials, and treatments that aren’t widely available. We work with your child at all stages of development to prevent or correct problems. We start early as possible, from before birth, and we're with you through age 35. Early care can mean improved mobility, activity, and strength as a child grows and develop. 

We have extensive experience in managing OI at different severity levels. We work with some families for many years, providing advanced medical and surgical services, bone fracture care, pain management, and more. This lifelong commitment means we understand each patient’s unique needs and tailor a care plan that adjusts with their progress. 

At Nemours Children's, you have access to a full range of care — including innovative clinical trial treatments — to help your child live their best, most active life possible, all in one place.

Every child living with OI is unique, and some may need more care than others. We’ll work with you and your child to ensure our plan meets your specific needs. Highlights of our care include:

• Perinatal care, including fetal diagnostic testing and prenatal consultations while your baby is still in the womb, and neonatal care right after birth. You may also give birth at our Delaware children’s hospital for immediate care. 
• Orthopedic surgery, including the treatment of fractures, rodding and reconstructive procedures, osteotomies, and spine surgeries. 
• Advanced care from experts who specialize in scoliosis and spine care and upper and lower extremity issues.
• Medication management to improve bone density, decrease pain or fractures, and assist with post-surgical pain management.
• Anesthesia care, including a dedicated pain service in the Delaware Valley specializing in regional anesthesia techniques to help reduce and manage pain after surgery.
• Advanced radiology (medical imaging) for assessing bone deformities and fractures.
• Comprehensive rehabilitation, including custom-made orthotics (braces), and certified physical, occupational, and speech therapists.
• Gait and motion analysis at our Delaware hospital, featuring advanced tests for customized treatments.
• Assistive technology and wheelchair clinic to help kids learn, communicate, and get around more easily.
• A state-of-the-art cast room using specialized casting material and techniques to allow movement of affected areas and minimize additional risks of fracture.
• Plastic surgery for any reconstruction your child might need for function and appearance.
• Neurosurgery for treatment of problems associated with OI, like hydrocephalus and basilar invagination.
• Feeding/nutrition counseling to maximize health and dietary needs.
• Psychosocial support services to help your child with coping and the day-to-day of living with OI.
• Care that extends beyond medicine, including helping caregivers with OI management education and independence strategies.
• Transition of care to help patients and their families prepare for and get the care they need as they transition out of our program.