Overview
Congenital absence of both forearm and hand, bilateral, is a rare limb difference that is present at birth. In this condition, both arms are missing from the forearm down, meaning the hands and lower portions of both arms did not develop during pregnancy. This is sometimes called bilateral transverse upper limb deficiency or bilateral below-elbow amputation. The term 'OBSOLETE' in the official name means this specific classification code is no longer actively used in current medical databases, and the condition may now be categorized under broader limb reduction defect categories. This condition can occur on its own (isolated) or as part of a broader syndrome that affects other parts of the body. When it occurs in isolation, the rest of the child's health and development, including intelligence, is typically normal. The cause can vary — it may result from genetic factors, disruptions in blood flow during fetal development (vascular disruption), amniotic band syndrome (where strands of tissue wrap around developing limbs), or environmental exposures during pregnancy. In many cases, no specific cause is identified. Treatment focuses on maximizing function and independence. This typically involves prosthetic devices fitted early in life, occupational therapy, and adaptive equipment. Modern prosthetics range from body-powered devices to advanced myoelectric (muscle-controlled) prostheses. Many individuals with this condition lead full, active, and independent lives with appropriate support and adaptive strategies.
Key symptoms:
Absence of both hands from birthAbsence of both forearms from birthArms end at or near the elbow on both sidesDifficulty grasping or holding objectsDifficulty with self-care tasks like dressing and eatingPossible residual limb sensitivityPossible differences in arm length between the two sides
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: Congenital absence of both forearm and hand, bilateral.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Congenital absence of both forearm and 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: Congenital absence of both forearm and hand, bilateral.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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 is the likely cause of my child's limb difference, and should we pursue genetic testing?,At what age should my child be fitted for their first prosthesis, and what type do you recommend?,How often will prosthetics need to be replaced as my child grows?,What occupational therapy services are available to help my child develop independence?,Are there any associated conditions or syndromes we should screen for?,Can you connect us with other families or support groups for children with limb differences?,What school accommodations should we request to support my child's learning and participation?
Common questions about OBSOLETE: Congenital absence of both forearm and hand, bilateral
What is OBSOLETE: Congenital absence of both forearm and hand, bilateral?
Congenital absence of both forearm and hand, bilateral, is a rare limb difference that is present at birth. In this condition, both arms are missing from the forearm down, meaning the hands and lower portions of both arms did not develop during pregnancy. This is sometimes called bilateral transverse upper limb deficiency or bilateral below-elbow amputation. The term 'OBSOLETE' in the official name means this specific classification code is no longer actively used in current medical databases, and the condition may now be categorized under broader limb reduction defect categories. This condit
At what age does OBSOLETE: Congenital absence of both forearm and hand, bilateral typically begin?
Typical onset of OBSOLETE: Congenital absence of both forearm and hand, bilateral is neonatal. Age of onset can vary across affected individuals.