Cleft lip with or without cleft palate

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Overview

Cleft lip with or without cleft palate (CL/P) is one of the most common congenital craniofacial anomalies, occurring when the tissues of the upper lip and/or the roof of the mouth (palate) fail to fuse properly during early embryonic development, typically between the 4th and 12th weeks of pregnancy. The condition may present as an isolated (nonsyndromic) birth defect or as part of a broader genetic syndrome. Nonsyndromic CL/P accounts for approximately 70% of all cases. The cleft can be unilateral (affecting one side) or bilateral (affecting both sides), and may range from a small notch in the lip to a complete opening extending through the lip into the nose and palate. Common synonyms include orofacial cleft and harelip (an outdated term). CL/P affects multiple body systems beyond facial appearance. Infants may experience significant difficulties with feeding due to the inability to create adequate suction, which can lead to poor weight gain and nutritional deficiencies. Speech development is frequently affected, with children often developing hypernasal speech or articulation difficulties. Recurrent ear infections and conductive hearing loss are common due to eustachian tube dysfunction. Dental anomalies, including missing, malformed, or misaligned teeth, are frequently observed. Psychosocial challenges related to facial appearance may also arise. Treatment for CL/P is well-established and typically involves a multidisciplinary team approach. Surgical repair of the cleft lip (cheiloplasty) is usually performed at approximately 3 to 6 months of age, while palate repair (palatoplasty) is generally completed by 12 to 18 months. Additional surgeries may be needed as the child grows, including alveolar bone grafting, rhinoplasty, and orthognathic surgery. Speech therapy, orthodontic treatment, audiological monitoring, and psychological support are integral components of long-term management. With comprehensive care, most individuals with CL/P achieve excellent functional and aesthetic outcomes.

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Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Cleft lip with or without cleft palate.

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No specialists are currently listed for Cleft lip with or without cleft palate.

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Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

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Community

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Common questions about Cleft lip with or without cleft palate

What is Cleft lip with or without cleft palate?

Cleft lip with or without cleft palate (CL/P) is one of the most common congenital craniofacial anomalies, occurring when the tissues of the upper lip and/or the roof of the mouth (palate) fail to fuse properly during early embryonic development, typically between the 4th and 12th weeks of pregnancy. The condition may present as an isolated (nonsyndromic) birth defect or as part of a broader genetic syndrome. Nonsyndromic CL/P accounts for approximately 70% of all cases. The cleft can be unilateral (affecting one side) or bilateral (affecting both sides), and may range from a small notch in th

How is Cleft lip with or without cleft palate inherited?

Cleft lip with or without cleft palate follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Cleft lip with or without cleft palate typically begin?

Typical onset of Cleft lip with or without cleft palate is neonatal. Age of onset can vary across affected individuals.