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Expert Care for Kids With Brittle Bone Disease

Families from around the world come to our program for life-changing osteogenesis imperfecta (OI) care. Our experienced team helps give kids and young adults the best, most active life possible.

Our program is led by renowned specialists in pediatric genetics and orthopedic surgery. We offer team-based care with experts in surgery, rehabilitation therapy, pain management and more. You get everything you need, all in one place.

At Nemours Children’s, we’re researching osteogenesis imperfecta and offering clinical trials, and treatments that aren’t widely available. We provide advanced care for bone fractures, spine problems, limb differences and more. That’s why our orthopedics program at Nemours Children’s Hospital, Delaware is ranked among the best in the country year after year by U.S. News & World Report.

We’re here for your family from the start, even before your baby is born. We coordinate services and guide you every step of the way.

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Watch Isaiah’s Story

Isaiah was diagnosed with OI before he was born. See how we help him live his best, happiest life.

The more you know, the better you can help your child succeed. Learn about osteogenesis imperfecta from our OI experts on Nemours KidsHealth.org.
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OI Services We Offer

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

Internationally Recognized Osteogenesis Imperfecta Care

Our osteogenesis imperfecta team is recognized for improving mobility, activity and strength. We watch your child as they grow and develop. We work to prevent and correct problems early, for better outcomes.

  • We’re advancing research and care for kids everywhere. We’re part of the Brittle Bones Disorders Consortium (BBD) . This means we offer the latest treatments available, and add to worldwide understanding and care for this rare disease.
  • We perform the latest, minimally invasive surgical procedures. Our surgeons are experts in methods that need fewer, smaller cuts, for a faster recovery. We offer advanced bone fracture repair and prevention techniques, spinal fusion procedures, and limb realignment and joint reconstruction surgeries.
  • We make life a little easier for you. From your first call, we take care of everything. We’ll make your appointments and help you know what to expect. We also schedule visits on the same day and at the same time as a team when possible. You always have someone to go to for answers and support.
  • We’re here for all your child’s needs. We know how OI affects a growing child. We look for signs of hearing loss, breathing problems, kidney disorders, heart issues, swallowing problems, emotional issues and more. And we'll bring in other Nemours specialists as needed.
  • 9 Clinicians on our team
  • 35 years The age to which we can care for your child
  • 50,000+ Orthopedic-related visits annually at Nemours

Answers and Guidance for Expectant Parents

Female doctor listens to expectant mom's tummy with stethoscope

Our Nemours Perinatal Program may use fetal imaging to diagnose OI while your baby is still in the womb. During pregnancy, we plan and coordinate care for after your baby is born.

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Support for the Whole Family

Young mom holds infant patient while male doctor engages infant and older sibling.

Our team helps you understand your child’s condition and how to support them. We offer counseling and help finding community and school services. And when it’s time, we help your child transition into adult health care.

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A Home Away From Home for Traveling Families

If you’re coming in from out of town, your family has access to a Ronald McDonald House located right across from our campus. This can help make your visit more convenient and affordable.

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Young boy who uses a wheelchair is hugged by his mom outside