Overview
Paramedian facial cleft is a very rare birth defect where there is an abnormal gap or split in the face that runs alongside (but not exactly in) the midline of the face. This condition is present at birth and results from incomplete fusion of the facial structures during early development in the womb. The cleft can affect the upper lip, nose, and sometimes the area between the nose and the eye. The severity varies widely — some individuals have a subtle notch or groove, while others have a more obvious gap that can involve the skin, underlying bone, and soft tissues of the face. Paramedian facial clefts are classified within the Tessier classification system for craniofacial clefts, which helps surgeons and doctors describe the exact location and extent of the cleft. These clefts can occur in isolation or as part of a broader syndrome involving other birth defects. Affected individuals may have difficulty with breathing, feeding, speech, and facial appearance. Treatment is primarily surgical and often requires a team of specialists. Reconstructive surgery aims to close the cleft, restore normal facial structure, and improve function. Multiple surgeries may be needed over the course of childhood and adolescence. Speech therapy, dental care, and psychological support are also important parts of the overall treatment plan. Early intervention leads to the best outcomes for both function and appearance.
Also known as:
Key symptoms:
Visible gap or split in the face near the midlineCleft or notch in the upper lipAbnormal shape or structure of the noseWidely spaced eyes or abnormal eye positionDifficulty feeding as a newbornBreathing difficultiesSpeech problemsDental abnormalities or missing teethUnderdeveloped facial bonesAsymmetry of the facePossible involvement of the eye areaScarring or skin irregularities along the cleft
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 Paramedian facial cleft.
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Specialists
View all specialists →No specialists are currently listed for Paramedian facial cleft.
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 Paramedian facial cleft.
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 type of facial cleft does my child have, and how severe is it?,Is this cleft part of a larger syndrome, and should we do genetic testing?,How many surgeries will my child likely need, and when should the first one happen?,What feeding strategies should we use before surgery?,Will my child need speech therapy, and when should it start?,What are the expected cosmetic and functional outcomes after surgery?,Are there any support groups or resources for families dealing with craniofacial conditions?
Common questions about Paramedian facial cleft
What is Paramedian facial cleft?
Paramedian facial cleft is a very rare birth defect where there is an abnormal gap or split in the face that runs alongside (but not exactly in) the midline of the face. This condition is present at birth and results from incomplete fusion of the facial structures during early development in the womb. The cleft can affect the upper lip, nose, and sometimes the area between the nose and the eye. The severity varies widely — some individuals have a subtle notch or groove, while others have a more obvious gap that can involve the skin, underlying bone, and soft tissues of the face. Paramedian fa
At what age does Paramedian facial cleft typically begin?
Typical onset of Paramedian facial cleft is neonatal. Age of onset can vary across affected individuals.