I Had a Normal Pregnancy—Then Came His Heartbreaking Diagnosis After Birth
Summary
A baby named Ralph was born with a rare genetic skin condition called Junctional Epidermolysis Bullosa (JEB). This causes very fragile skin that can blister and is slow to heal, requiring constant care and special treatments to prevent injury and infection.Key Facts
- Ralph was born prematurely at almost 36 weeks.
- At birth, it was clear Ralph had serious skin problems, including blood on his hands and fragile skin patches.
- Doctors diagnosed Ralph with JEB after skin biopsies and family history checks.
- JEB causes skin to blister easily, even from minor contact, leading to chronic wounds.
- Ralph needed 16 days in the neonatal intensive care unit (NICU).
- His daily care involves careful planning of clothing, temperature, positioning, and wound dressing.
- His fragile skin limits his ability to move and explore normally.
- The condition also causes painful blisters inside the mouth, making feeding difficult.
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