Living with Median cleft of the upper lip and maxilla
A rare condition present from birth with a split in the middle of the upper lip and upper jaw.
Understanding Median cleft of the upper lip and maxilla
The split goes through the upper lip and the front part of the upper jaw. It can also involve the nasal septum and the brain. It varies widely, from a small notch to a wide cleft. Other features may include eye spacing differences, a flat or cleft nose, and skull differences.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet, but its summary describes these:
- Split in the middle of the upper lip
- Split in the front upper jaw bone
- Flat or split nose
- Eyes set closer or farther apart than usual
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include ear, nose, and throat specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists)
- Expert care
- Expert lists: World Craniofacial Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with World Craniofacial Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet. It describes a developmental difference that happens early in pregnancy.
Also known as: median cleft lip and cleft of alveolar process of maxilla
Patient organizations
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Median cleft of the upper lip and maxilla.
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