Postaxial tetramelic oligodactyly

Postaxial tetramelic oligodactyly is an extremely rare congenital condition present at birth in which a person is born with fewer fingers and toes than normal, specifically affecting the outer (postaxial or pinky) side of all four hands and feet. The term 'postaxial' refers to the outer side of the limb (the side of the little finger or little toe), 'tetramelic' means all four limbs are involved, and 'oligodactyly' means fewer digits than the usual five on each hand or foot. Affected individuals typically have missing or underdeveloped fourth and fifth fingers and toes on both hands and both feet. This condition is apparent at birth and is usually an isolated finding, meaning it does not typically come with other major organ problems or intellectual disability. However, the reduced number of digits can affect hand function, grip strength, and fine motor skills. Foot involvement may affect balance or shoe fitting but usually does not prevent walking. Because this condition is so rare, there is no specific cure or targeted therapy. Treatment focuses on maximizing hand and foot function through occupational therapy, physical therapy, and in some cases reconstructive or adaptive surgery. Prosthetic devices or adaptive tools may also help with daily tasks. Genetic counseling is recommended for affected families to understand the chance of the condition occurring in future children.

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly

Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest

Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC

Bring these to your next appointment

• Q1.What specific bones or digits are missing or underdeveloped in my child's hands and feet?,Is this condition isolated, or could it be part of a broader syndrome?,Would genetic testing help us understand the cause and the chance of this happening in future children?,What therapies or surgeries could improve hand function?,When should we start occupational therapy, and how often?,Are there adaptive tools or devices you recommend for daily activities?,What accommodations should we request at school?

Common questions about Postaxial tetramelic oligodactyly