Overview
Familial median cleft of the upper and lower lips is an extremely rare birth defect in which a baby is born with a split (cleft) that runs down the middle of both the upper and lower lips. Unlike the more common cleft lip, which usually occurs on one or both sides of the upper lip, this condition involves a midline cleft — meaning the split is right in the center. The word 'familial' means that this condition runs in families, suggesting a genetic cause that can be passed from parent to child. This condition is present at birth and is usually noticed immediately. The cleft can vary in severity, ranging from a small notch in the lip to a deeper split that may extend toward the nose or chin. It can cause difficulties with feeding in newborns, because the lips cannot form a proper seal around a nipple or bottle. Speech development may also be affected as the child grows. In some cases, the cleft may be associated with other facial or dental abnormalities. Treatment is primarily surgical. Reconstructive surgery is typically performed in infancy to close the cleft and restore the normal appearance and function of the lips. Additional surgeries may be needed as the child grows. A team of specialists — including plastic surgeons, speech therapists, and dentists — usually works together to provide comprehensive care. With proper treatment, most children can achieve good cosmetic and functional outcomes.
Key symptoms:
Split or cleft in the center of the upper lipSplit or cleft in the center of the lower lipDifficulty feeding or breastfeeding in newbornsUnusual appearance of the lips at birthPossible dental abnormalities or misaligned teethSpeech difficulties as the child growsDrooling due to incomplete lip closurePossible notching or gap in the gum lineCosmetic concerns affecting the face
Clinical phenotype terms (10)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Familial median cleft of the upper and lower lips.
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Specialists
View all specialists →No specialists are currently listed for Familial median cleft of the upper and lower lips.
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 Familial median cleft of the upper and lower lips.
Community
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Caregiver Resources
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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.How severe is my child's cleft, and what surgical plan do you recommend?,At what age should the first surgery be performed?,Will my child need more than one surgery?,What feeding strategies should we use before surgery?,Should we pursue genetic testing to understand the cause and risk for future children?,Will my child need speech therapy, and when should we start?,Are there any other health problems we should watch for that might be associated with this condition?
Common questions about Familial median cleft of the upper and lower lips
What is Familial median cleft of the upper and lower lips?
Familial median cleft of the upper and lower lips is an extremely rare birth defect in which a baby is born with a split (cleft) that runs down the middle of both the upper and lower lips. Unlike the more common cleft lip, which usually occurs on one or both sides of the upper lip, this condition involves a midline cleft — meaning the split is right in the center. The word 'familial' means that this condition runs in families, suggesting a genetic cause that can be passed from parent to child. This condition is present at birth and is usually noticed immediately. The cleft can vary in severit
How is Familial median cleft of the upper and lower lips inherited?
Familial median cleft of the upper and lower lips follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Familial median cleft of the upper and lower lips typically begin?
Typical onset of Familial median cleft of the upper and lower lips is neonatal. Age of onset can vary across affected individuals.