Overview
Split hand/foot malformation (SHFM), also known as ectrodactyly or "lobster claw" deformity, is a group of rare congenital limb malformations present at birth. In this condition, the central fingers or toes (or both) are missing or fused, giving the hands or feet a split or cleft-like appearance. The severity can vary widely — some people may have only mild changes in one hand or foot, while others may have significant involvement of all four limbs. The condition can occur on its own (isolated) or as part of a broader genetic syndrome that affects other parts of the body. SHFM is caused by disruptions in the genes that guide limb development during pregnancy. Several different genes have been linked to this condition, and the inheritance pattern can vary depending on which gene is involved. Because of this genetic complexity, families may see very different levels of severity even among relatives who carry the same gene change. Note: The Orphanet code 294935 is listed as obsolete, meaning this entry has been reorganized into more specific subtypes in current medical databases. Patients and families should work with their medical team to identify the specific subtype that applies to them. Treatment is primarily supportive and may include surgery to improve hand or foot function, physical therapy, occupational therapy, and adaptive devices. Prosthetics may also be helpful for some individuals. While there is no cure, many people with SHFM lead full, active lives with appropriate support.
Key symptoms:
Missing central fingers or toesDeep cleft or split in the hand or footFused fingers or toes (syndactyly)Underdeveloped or shortened fingers or toesAbnormal shape of the hand or footReduced grip strengthDifficulty with fine motor tasksAsymmetric involvement (one side worse than the other)Nail abnormalities on affected digitsIn some cases, hearing loss (when part of a syndrome)In some cases, cleft lip or palate (when part of a syndrome)
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 or/and split foot malformation.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Split hand or/and split foot malformation.
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 or/and split foot malformation.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
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.What specific type of split hand/foot malformation does my child have, and is a genetic cause identified?,Would surgery improve function, and if so, what is the best age to have it done?,Should other family members be tested for the genetic change?,What therapies (occupational, physical) should we start, and how often?,Are there any associated conditions we should screen for, such as hearing loss?,Can you refer us to a multidisciplinary limb difference clinic?,What resources are available for emotional and social support for my child?
Common questions about OBSOLETE: Split hand or/and split foot malformation
What is OBSOLETE: Split hand or/and split foot malformation?
Split hand/foot malformation (SHFM), also known as ectrodactyly or "lobster claw" deformity, is a group of rare congenital limb malformations present at birth. In this condition, the central fingers or toes (or both) are missing or fused, giving the hands or feet a split or cleft-like appearance. The severity can vary widely — some people may have only mild changes in one hand or foot, while others may have significant involvement of all four limbs. The condition can occur on its own (isolated) or as part of a broader genetic syndrome that affects other parts of the body. SHFM is caused by di
At what age does OBSOLETE: Split hand or/and split foot malformation typically begin?
Typical onset of OBSOLETE: Split hand or/and split foot malformation is neonatal. Age of onset can vary across affected individuals.