Osteogenesis Imperfecta Program
Experts in Brittle Bone Disease
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 ѻƵ 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.
Our Services
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 alsogive birthat 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 careand upper and lower extremity issues.
- Medication managementto improve bone density, decrease pain or fractures, and assist with post-surgical pain management.
- Anesthesia care,including a dedicated pain service in the DelawareValleyspecializing in regional anesthesia techniques to helpreduce 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 analysisat 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 roomusing specialized casting material and techniques to allow movement of affected areas and minimize additional risks of fracture.
- Plastic surgeryfor 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 counselingto maximize health and dietary needs.
- Psychosocial support servicesto help your child with coping and the day-to-day of living with OI.
- Care that extends beyond medicine, includinghelping 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.
Two Leading Pediatric Orthopedic Centers
ѻƵ provides advanced care for newborns, children, teens, and young adults with the full range of orthopedic conditions, including complex spine disorders, neuromuscular conditions, sports injuries, and rare disorders affecting bone growth. Learn more about our extensive care and research.
Meet Baby Koa
A CBS News Philadelphia segment spotlights our groundbreaking care for osteogenesis imperfecta at ѻƵ Children’s Hospital, Delaware. The story follows baby Koa and his mother, sharing how early diagnosis and specialized treatment help him grow stronger.
“I love that they do not label us as incapable or weak. They believe in what we CAN do.”
“It was like taking a breath of fresh air,” she said. “I walk in here every time not worried about his care.”
“Having people that understand the stress and being able to eat lunch together or just meet in the hall for a hug gets you through that day.”
“We are proud to call the OI Care team at ѻƵ our extended family with all the warm and welcoming faces that we continue to see every day.”
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Conditions We Treat
We see many conditions related to osteogenesis imperfecta — far too many to list here. The conditions we treat vary depending on the location and providers selected. Don’t see a condition listed? Call us.
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LIST FROM BP:
Basilar Invagination
Bowed Bones
Broken Bones (Fractures)
Dentinogenesis Imperfecta
Hearing Loss
Joint Hypermobility
Kyphosis
Low Bone Density
Osteoporosis
Scoliosis
Short Stature
Related Specialties & Programs
Internationally Recognized OI Care in the Delaware Valley
ѻƵ Children’s Hospital, Delaware is ranked among the nation’s top 10 best in orthopedics care byU.S. News & World Report(2024-2025). Our program is co-led by two of the world’s foremost OI experts.
We have access tospecialists who care for the full range of conditions,including hearing loss, breathing problems, dental problems, kidney disorders, heart issues, and more.
As part of theand other OI groups, weoffer thelatest treatments availableand help advance research and care for kids everywhere.
We’re home to thefirst accredited pediatric gait and motion analysis laboratory of its kind,to better help us find ways to improve your child’s mobility.
Our orthopedic surgeons areexperts in thelatest, minimally invasive surgical proceduresfor fewer, smaller cuts and a faster recovery.
We’vecreated a vibrant community of support, connecting families along the same journeyfor inspiration, hope and shared learning.
Meet Our Osteogenesis Imperfecta Team in Delaware Valley
Our specialists are at the forefront of their fields. They work tirelessly to improve the quality of life for children, teens, and adults with osteogenesis imperfecta. < still manual - do with TAGS?> I don't know how, will have to ask Paul. I put in the list I was given by Dr. Franzone, the lead for the DV program. I don't think these are tagged.
Helping Kids With OI Through National Research
Our Delaware Valley team is part of theBrittle Bones Disorders Consortium (BBDC), a national research network focused on improving care for children with osteogenesis imperfecta and other rare bone disorders.
Through this partnership, our team contributes tonatural history studies, which track how OI affects children over time, and to research on new and existing treatments. This work helps doctors understand how the condition progresses and which therapies make the biggest difference. For families, it means access to care informed by the latest research, and the chance to be part of discoveries that may lead to better outcomes for their child and others.
Taking Care of Your Child from Day One
The care a baby born with OI receives early on can have great impact on the progress they’ll make as they grow. Our Advanced Delivery Program provides mothers the option to deliver their babies at ѻƵ Children’s Hospital, Delaware so they have immediate access to the OI specialists they’ll work with throughout their child’s life.
Care That Goes Beyond Medicine
Convenient Follow-Up Appointments by Video
We offer follow-up appointments through scheduled, live video visits. You can avoid waiting rooms and save travel time. Ask your doctor if this is an option for your family.