Overview
Split hand, bilateral is a congenital limb malformation present at birth in which both hands have a deep cleft or split running through the middle, giving them a lobster claw-like appearance. This condition is also known as bilateral ectrodactyly or bilateral split hand/split foot malformation (SHFM). In this condition, one or more central fingers are missing or fused, and the remaining fingers may be spread apart with a V-shaped gap in the center of the hand. Both hands are affected, though the severity can differ between the left and right sides. This condition occurs because of abnormal development of the hands during early pregnancy. It can appear on its own (isolated) or as part of a broader genetic syndrome that may also affect the feet or other parts of the body. The functional impact varies widely — some people have good hand function despite the unusual appearance, while others may have significant difficulty with gripping and fine motor tasks. Note: This specific Orphanet entry (295122) is marked as obsolete, meaning it has been retired or merged into a broader classification. Patients and families should look under the broader category of ectrodactyly or split hand/foot malformation for the most current medical information. Treatment is primarily surgical and rehabilitative, focusing on improving hand function and appearance. Occupational therapy plays an important role in helping individuals maximize the use of their hands for daily activities.
Also known as:
Key symptoms:
Deep cleft or split in the center of both handsMissing central fingers on both handsFused fingers (syndactyly)V-shaped gap between remaining fingersLobster claw-like appearance of both handsReduced grip strengthDifficulty with fine motor tasks like buttoning clothesAbnormal nail growth on affected fingersShortened or underdeveloped fingersPossible involvement of the feet as well
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Split hand, bilateral.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Split hand, bilateral.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to OBSOLETE: Split hand, bilateral.
Community
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Is my child's split hand isolated, or could it be part of a genetic syndrome?,Would genetic testing help us understand the cause and recurrence risk?,What surgical options are available, and when is the best time for surgery?,How can occupational therapy help improve hand function?,Are there adaptive devices that could help with daily tasks?,What is the chance that future children could have the same condition?,Are there support groups or resources for families affected by this condition?
Common questions about OBSOLETE: Split hand, bilateral
What is OBSOLETE: Split hand, bilateral?
Split hand, bilateral is a congenital limb malformation present at birth in which both hands have a deep cleft or split running through the middle, giving them a lobster claw-like appearance. This condition is also known as bilateral ectrodactyly or bilateral split hand/split foot malformation (SHFM). In this condition, one or more central fingers are missing or fused, and the remaining fingers may be spread apart with a V-shaped gap in the center of the hand. Both hands are affected, though the severity can differ between the left and right sides. This condition occurs because of abnormal de
At what age does OBSOLETE: Split hand, bilateral typically begin?
Typical onset of OBSOLETE: Split hand, bilateral is neonatal. Age of onset can vary across affected individuals.