Treatments for Osteogenesis Imperfecta in Children

LIke ThisLIke ThisLIke ThisLIke ThisLIke This

Contact the Orthopedic Center

  • 617-355-6021
  • International: +1-617-355-5209
  • Locations

Boston Children's Hospital's interdisciplinary team of sub-specialists provides comprehensive treatment for osteogenesis imperfecta—including evaluation, diagnosis, consultation and follow-up care.

To date, there's no known treatment, medicine or surgery that can cure OI, but treatment for the condition aims to:

  • correct and prevent fractures and deformities
  • allow your child to function as well and as independently as possible

Treatments for preventing or correcting symptoms may include the following:

  • surgery to manage:
  • recurring fractures
  • bowing of the bone
  • scoliosis (sideways curvature of the spine)
  • surgery to maintain your child's ability to sit or stand
  • rodding (minimally-invasive procedure to insert a simple or telescopic metal rod [Fassier Duval rod] the length of a long bone to stabilize it and prevent deformity)
  • assistive devices, such as wheelchairs, braces and other custom equipment
  • dental procedures
  • physical therapy
  • medications (for pain and for bone strength)
  • psychological counseling

Long-term outlook

Osteogenesis imperfecta is a serious lifelong condition that needs to be managed through an interdisciplinary medical approach to maximize a child's quality of life and ability to function. The condition presents complex challenges on anatomical, medical and socio-psychological levels.

Nevertheless, children with OI can grow up to lead full, productive lives. Some prominent figures who have OI include:

  • American actor Michael J. Anderson
  • British actress Julie Fernandez
  • Jazz pianist Michel Petrucciani
  • British actor Nabil Shaban
  • German actor, writer and ethicist Peter Radtke
  • Music producer Simon Eric Gilbert
  • Playwright Firdaus Kanga-Parsi
  • American Olympic bronze medalist Doug Herland

After surgery

If your child has had surgery, she'll probably stay in the hospital for a couple of days to a week and will receive pain medication. When she goes home, she'll need to limit her weight-bearing activities, and she might use crutches or a walker for a few weeks. Physical therapy will help her restore her muscle strength. Her doctor will advise on what activities she'll be able to resume, and when.

Lifestyle adjustments

The National Institutes of Health advise the following modifications to protect the bones and tissues of a baby, child or teen with OI—and to adapt her living spaces to her condition:

  • use spine-protecting techniques for standing, sitting and lifting
  • avoid activities that jar or twist the spine, such as jumping
  • modify the child's home and school environments to accommodate short stature or low strength and to promote independent function
  • keep floors free of obstacles that may cause the child to fall or have an accident
  • develop healthy lifestyle diet and exercise regimens to maximize bone mass, develop muscle strength and avoid obesity

Coping and support

At Boston Children's, we understand that a hospital visit can be difficult. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit the Center for Families for all you need to know about:

  • getting to Boston Children's
  • accommodations
  • navigating the hospital experience
  • resources that are available for your family

In particular, we understand that you may have a lot of questions when your child is diagnosed with osteogenesis imperfecta. Will my child need surgery? How long will her recovery take? How will the condition affect her long term? Boston Children's can help you connect with extensive resources to help you and your family through this stressful time, including:

  • patient education: From doctor's appointments to treatment to follow-up, our nurses and physical therapists will be on hand to walk you through your child's diagnosis, surgery and recovery. And once your child is home, we'll help you coordinate and continue the care and support she received at Boston Children's. 
  • parent-to-parent: Want to talk with someone whose child has been treated for OI? Our Orthopedic Center can often put you in touch with other families who've been through the same experience that you and your child are facing. 
  • faith-based support: If you're in need of spiritual support, we'll connect you with the Boston Children's chaplaincy. Our program includes nearly a dozen clergy—representing Protestant, Jewish, Muslim, Catholic and other faith traditions—who will listen to you, pray with you and help you observe your own faith practices during your hospital experience. 
  • social work: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial issues.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944