Understanding Osteogenesis Imperfecta – Children's Orthopaedic and Scoliosis Surgery Associates, LLP

Understanding Osteogenesis Imperfecta

August 1, 2025:

Osteogenesis Imperfecta (OI), commonly known as brittle bone disease is a genetic bone disorder that can significantly impact a child’s life, but with proper understanding and management children with (OI) can thrive.

OI results from defects in genes that prevent the body from forming collagen, a crucial protein that provides support to our connective tissues and bones. These defective genes can be inherited from one or both parents, or sometimes they arise from a spontaneous mutation. While the majority of cases involve mutations in the COL1A1 or COL1A2 genes (which code for collagen type I alpha chains), remarkable advancements in the past decade have identified at least 17 other genes linked to OI.

Initially, OI was classified into four types (I-IV), but now it is classified with eight distinct types. It’s important to remember that even within the same type, individuals can present with varying characteristic features.

The Spectrum of OI Severity: A Closer Look at Types

Common Types

  • Type I is generally considered the mildest form. Children with Type I OI may experience very few fractures, sometimes so few that the condition goes undiagnosed for years. A common tell-tale sign in these individuals is blue sclerae (the whites of their eyes appearing bluish).
  • Type IV represents a moderate form of OI. Patients with Type IV typically experience more fractures than those with Type I. However, there’s a wide spectrum within this type, with some individuals presenting similarly to Type I, while others are closer in severity to Type III. Short stature is often a characteristic feature of Type IV.
  • Type III is the most severe form of OI among children who survive beyond the neonatal period. Infants with Type III OI often have mildly shortened and bowed limbs, small chests, and a soft calvarium (skull bones). Respiratory and swallowing problems are common in newborns, and they may present with multiple long bone fractures, including ribs. By adulthood, individuals with Type III typically do not grow taller than 3.5 feet.
  • Type II Osteogenesis Imperfecta is the most severe form overall. Sadly, infants with Type II OI usually succumb within weeks of delivery, often due to severe respiratory and cardiac complications.

Recognizing and Diagnosing OI

The symptoms of OI vary greatly, not only between types but also within types, ranging from very mild to profoundly severe. Some babies are born with noticeable signs like short arms and legs, a small chest, or even existing fractures. A baby might also have a larger-than-normal head, or a deformed face, chest, or spine. It’s crucial to understand that symptoms are unique to each child.

OI is present at birth, and diagnosis is typically made based on your baby’s current symptoms, coupled with a thorough family and pregnancy history. The milder forms of OI can be particularly challenging to diagnose as their symptoms may mimic other medical conditions. If OI is suspected, your physician may refer you to a geneticist, a specialist in genetic conditions.

Diagnostic testing can include:

  • X-rays to identify bone deformities or fractures.
  • A DEXA scan to assess bone density and check for bone softening.
  • A bone biopsy to examine changes in the concentrations of non-collagenous bone proteins.

Lifelong Management and Treatment Goals

OI is a lifelong condition, and treatment plans are highly individualized, depending on your child’s symptoms, age, general health, and the severity of their condition. Our primary goal in treatment is always to prevent deformities and fractures and help your child achieve the greatest possible level of self-sufficiency and independence.

Treatment

Treatment strategies often involve a combination of approaches:

Non-surgical interventions:

  • Bracing and splinting to provide external support.
  • Casting for fractured bones to promote proper healing.
  • Bisphosphonate medicines are often prescribed to help strengthen bones and reduce the frequency of fractures.
  • Physical and occupational therapy are vital for maintaining muscle strength, improving mobility, and teaching adaptive strategies for daily activities.

Surgical interventions:

  • Rodding surgery is a common procedure where metal rods are inserted into long bones to provide internal stability, prevent deformities, and reduce the risk of future fractures.

 

The COSSA surgeons are committed to working closely with you and your child to develop a comprehensive and personalized care plan. We are here to support you in managing OI and helping your child live a full and active life.

It is important to take your child to pediatric specialists who are experts in treating only kids. At Children’s Orthopaedic and Scoliosis Surgery Associates, LLP our board certified, fellowship trained, specialists provide the best child-friendly care using the latest cutting-edge technology that results in the safest and most accurate outcomes. Please call our office at (727) 898-2663 to schedule an appointment.

Medically reviewed by Daniel C. Bland, MD Board Certified Orthopaedic Surgeon.

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