Overview
Genetic facial cleft is a rare birth difference where a gap or split forms in the face during early development in the womb. The face normally forms when several tissue sections grow together and fuse between weeks 4 and 10 of pregnancy. When this process does not complete properly, a cleft — meaning an opening or gap — can remain. Unlike the more common cleft lip and palate, genetic facial clefts can affect other parts of the face, including the cheek, nose, eyelid, or forehead. These are sometimes called 'rare facial clefts,' 'atypical facial clefts,' or 'Tessier clefts,' after the surgeon who created a widely used classification system numbering them 0 through 14. The condition can range from a very mild notch in the lip or eyelid to a more significant opening that affects eating, breathing, vision, hearing, or speech. Some people have only a facial cleft, while others may have additional differences in the skull, brain, or other parts of the body. The severity and location of the cleft determine which body systems are affected. Treatment is focused on surgery to close the cleft and restore normal function and appearance. A team of specialists — including surgeons, speech therapists, and other experts — typically works together over many years to support the child's development. With good care, many people with genetic facial clefts lead full and healthy lives, though multiple surgeries and ongoing support may be needed.
Also known as:
Key symptoms:
A visible gap, split, or groove on the face — may affect the lip, cheek, nose, eyelid, or foreheadDifficulty feeding or sucking as a newbornProblems with speech or making certain soundsDental problems, including missing or misaligned teethHearing difficulties, especially if the ear or ear canal is affectedVision problems if the cleft involves the eyelid or eye socketBreathing difficulties in severe casesDifferences in the shape of the nose or nostrilsAsymmetry of the faceScarring or skin differences along the cleft lineIn some cases, differences in skull or brain development
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 Genetic facial cleft.
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Specialists
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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 Genetic facial cleft.
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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 type of facial cleft does my child have, and what parts of the face or body are affected?,Should we do genetic testing, and what might it tell us about the cause and recurrence risk?,What does the surgical plan look like, and how many operations might be needed over time?,Which specialists should be part of our care team, and how do we coordinate between them?,What early therapies — such as speech or feeding support — should we start right away?,Are there any risks to future pregnancies, and should other family members be tested?,What support resources or patient organizations are available for our family?
Common questions about Genetic facial cleft
What is Genetic facial cleft?
Genetic facial cleft is a rare birth difference where a gap or split forms in the face during early development in the womb. The face normally forms when several tissue sections grow together and fuse between weeks 4 and 10 of pregnancy. When this process does not complete properly, a cleft — meaning an opening or gap — can remain. Unlike the more common cleft lip and palate, genetic facial clefts can affect other parts of the face, including the cheek, nose, eyelid, or forehead. These are sometimes called 'rare facial clefts,' 'atypical facial clefts,' or 'Tessier clefts,' after the surgeon w
At what age does Genetic facial cleft typically begin?
Typical onset of Genetic facial cleft is neonatal. Age of onset can vary across affected individuals.