Article published Open Source in: Current Osteoporosis Reports (2023) 21:779–786
Authors: Arundel, P., Borg, S.A.
Content:
What is This Article About?
The article discusses the management of Osteogenesis Imperfecta (OI) in infants, especially those with severe forms, during their first year of life. It emphasizes the importance of specialized, team-based care to address the medical and developmental needs of these children.
Key Aspects of Early Management:
- Planning Before Birth:
- In severe cases, OI is often detected during pregnancy. A care plan is created involving specialists in neonatal care and rare bone diseases.
- Families are informed about what to expect and introduced to the medical team before the baby is born.
- Postnatal Care:
- After birth, care focuses on breathing support, pain management, and safe handling to avoid fractures.
- Specialists assess the baby’s condition, including their chest size, breathing ability, and bone health, to guide treatment.
- Medical Treatments:
- Bisphosphonates: Medications to strengthen bones and reduce pain are often started early.
- Pain relief, usually with safe doses of opiates, helps manage discomfort from fractures.
- Safe Handling and Feeding:
- Parents are taught gentle handling techniques to avoid twisting or pressure on fragile bones.
- Breastfeeding or oral feeding is encouraged when possible, with support from specialists.
- Developmental Support:
- Babies with OI are monitored closely to ensure healthy growth and neurodevelopment.
- Care teams provide toys and activities to support learning and motor skills, even if mobility is limited.
Key Challenges and Solutions:
Breathing Problems:
- Infants with severe OI may need oxygen or ventilation support. Over time, as fractures heal and the lungs mature, breathing often improves.
Bone Care:
- Fractures are managed conservatively with soft bandaging. Surgery is rarely needed in the first year.
- Central venous access devices may be used for long-term medication delivery.