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Living with Tessier number 5 facial cleft

A rare condition present at birth in which a cleft runs from the upper lip across the cheek toward the eye.

Understanding Tessier number 5 facial cleft

Tessier number 5 facial cleft is a rare cleft on one or both sides of the face that runs from the upper lip across the cheek to the lower eyelid.

The cleft starts in the upper lip, crosses the cheek as a groove, and ends at the lower eyelid, where it can cause a gap in the eyelid (coloboma). The upper jaw and eye socket bones can also be involved. It may occur along with other facial clefts, a wide mouth (macrostomia), or a missing eye (anophthalmos). It is present from birth and develops during pregnancy.

Signs & symptoms

GARD doesn't list specific symptoms for this condition yet, but the summary describes these features:

  • Cleft in the upper lip
  • Groove across the cheek
  • Gap in the lower eyelid (coloboma)
  • Cleft in the upper jaw bone
  • Wide mouth (macrostomia) in some people

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include ear, nose, and throat specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect 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
Bring these questions to your next doctor visit
Which specialists should be on a cleft and craniofacial care team?
How might this cleft affect the eye and vision?
Is genetic testing or counseling useful in our case?

Quick facts

Symptoms usually startduring Pregnancy and as a Newborn

GARD doesn't describe a cause for this condition yet.

Also known as: infraorbital facial cleft - tessier cleft 5

Patient organizations

Source: NIH GARD · Tessier number 5 facial cleftGARD ID 19968 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Tessier number 5 facial cleft.

Explore the Tessier number 5 facial cleft blog

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Explore actively recruiting Tessier number 5 facial cleft studies with HealthSpark.

HealthSpark

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  • Recruiting studies from ClinicalTrials.gov
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  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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