It is not possible to diagnose a newborn with EB by physical exam. While it’s true that the types have telltale signs, there is so much overlap within the clinical presentations during infancy that even experienced dermatologists will not attempt to diagnose without a biopsy.
Until the diagnosis is confirmed, parents are encouraged to focus on learning to care for their baby rather than on the types and subtypes and their potential challenges. It is understandable to feel overwhelmed. One strategy for dealing with the uncertainty is to try to learn as much as possible. But with a newborn, much of what you’ll read about EB types will not pertain to your baby, so the most productive way to channel this energy is to care for the child’s immediate well-being.
These needs fall into two categories:
- Skin and wound care
If possible, delegate a family member or friend to research EB and reach out to support groups.
Read more in the EB Nurse Newborn Care Guide (in PDF format for printing purposes).