Overview
Isolated congenital aglossia is a very rare condition where a baby is born without a tongue, or with only a very small part of a tongue. The word 'aglossia' comes from Greek and simply means 'without tongue.' When doctors say 'isolated,' they mean the missing tongue is the main or only problem — it is not part of a larger syndrome affecting many parts of the body, though some overlap with other conditions has been reported. The tongue plays a central role in eating, swallowing, speaking, and even shaping the jaw and teeth as a child grows. Without a tongue, or with a very underdeveloped one, babies and children face real challenges with feeding from birth, learning to speak, and developing normal mouth and jaw structure over time. Drooling and difficulty managing saliva are also common. Despite these challenges, many people with aglossia develop remarkable ways to compensate — some learn to speak in ways that are understandable, and with the right support team, quality of life can be meaningful. Treatment focuses on helping with feeding, speech therapy, and sometimes surgery or dental devices to support jaw and tooth development. There is no cure, but early intervention makes a significant difference.
Key symptoms:
Absent tongue or very small, underdeveloped tongueDifficulty feeding and swallowing from birthProblems with speech and articulationDrooling or difficulty controlling salivaAbnormal jaw development over timeDental problems such as misaligned teethDifficulty chewing solid foodsAltered facial appearance due to lack of tongue supportPossible breathing difficulties in newbornsChallenges with taste and oral sensation
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Isolated congenital aglossia.
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Specialists
View all specialists →No specialists are currently listed for Isolated congenital aglossia.
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 Isolated congenital aglossia.
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 specialists should be part of my child's care team, and how soon should we see them?,What is the safest way to feed my baby right now, and what feeding support is available?,When should we start speech therapy, and what outcomes can we realistically expect?,Are there any surgical options that might help, and what are the risks and benefits?,Should our family have genetic testing, and what might it tell us about the cause?,What dental or jaw problems should we watch for as my child grows, and how can we prevent them?,Are there any patient communities or support groups for families dealing with aglossia?
Common questions about Isolated congenital aglossia
What is Isolated congenital aglossia?
Isolated congenital aglossia is a very rare condition where a baby is born without a tongue, or with only a very small part of a tongue. The word 'aglossia' comes from Greek and simply means 'without tongue.' When doctors say 'isolated,' they mean the missing tongue is the main or only problem — it is not part of a larger syndrome affecting many parts of the body, though some overlap with other conditions has been reported. The tongue plays a central role in eating, swallowing, speaking, and even shaping the jaw and teeth as a child grows. Without a tongue, or with a very underdeveloped one, b
How is Isolated congenital aglossia inherited?
Isolated congenital aglossia follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Isolated congenital aglossia typically begin?
Typical onset of Isolated congenital aglossia is neonatal. Age of onset can vary across affected individuals.