#1 Ranked Children’s Hospital by U.S. News & World Report
MyPatients provides referring primary care providers with secure access to their patients’ information.
Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
Innovation insider is a semi-monthly e-newsletter analyzes innovations at Boston Children’s, other academic medical centers and from industry.
Read the latest blog by a Boston Children's doctor, clinician or staff member.
There are many ways you can help children and their families get the care they need.
Right now, you probably have lots of questions: How serious is osteogenesis imperfecta? How will the condition affect my child’s life? What do we do next? We’ve provided some answers to your questions on this site, and our experts at Children’s Hospital Boston can explain your child’s condition in detail when you meet with us.
There are actually 13 different types of OI. But according to the Osteoporosis and Related Bone Diseases National Resource Center, part of the National Institutes of Health (NIH), the four major types of OI are:
Severe cases of OI can be detected in infancy, based on clinical evidence and testing. Milder forms can be difficult to diagnose in infancy and childhood.
The most common forms of OI are inherited and can usually be traced through the family.
Like the disease itself, the level of pain a child may feel is highly variable. Some children do experience chronic pain from their condition.
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.
Braces, custom-made equipment and other assistive devices can help a child with OI to function, but can’t lead to an improvement of the condition itself.
Tools for diagnosing osteogenesis imperfecta can include:
Yes. Boston Children’s follows our pediatric patients well into their adulthood.
As part of an extensive research study of OI in children and osteoporosis in adults, a team of Boston Children’s researchers led by Matthew Warman, MD, of Boston Children's Orthopedic Research Laboratories, has engineered mice with unusually dense bones using mutations in a gene called Lrp5 that cause high bone mass in people. Read more.
The clinical and basic science researchers in Boston Children’s Orthopedic Center are recognized throughout the world for their achievements in the field. Our breakthroughs mean that we can provide your child with the most innovative care available.
The most common forms of osteogenesis imperfecta are inherited and can usually be traced through the family.
Signs and symptoms of the most common forms of OI can present at birth, or later in childhood, and include:
If your teen or child is diagnosed with osteogenesis imperfecta, you may feel a bit overwhelmed. It can be easy to lose track of the questions that occur to you. Lots of parents find it helpful to jot down questions as they arise—that way, when you talk to your child’s doctors, you can be sure that all your concerns get addressed.
Some of the questions you may want to ask include:
If surgery is needed, the vast majority of surgeries for OI at Children’s are successful and occur without major complications. After surgery, patients are at a very small risk for infection, bleeding or poor bone healing (malunion).
Osteogenesis imperfecta is a serious lifelong condition that needs to be managed by an interdisciplinary medical team whose aim is to maximize a child’s quality of life and ability to function. The condition presents complex challenges medical and psychological challenges, but children with OI can grow up to lead full, productive lives.
Osteogenesis imperfecta glossary
To help teenagers take a more proactive role in their treatment and to have their needs recognized, Boston Children’s developed the Teen Advisory Committee. The group—made up of current Children’s patients, ages 14 to 21—serves as a team of peers who can listen to other patients’ needs, ensure their voices are heard.
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.”