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Living with Tessier number 4 facial cleft

A rare condition present at birth in which a cleft runs from the upper lip toward the eye, sometimes affecting the eye itself.

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Understanding Tessier number 4 facial cleft

Tessier number 4 facial cleft is a rare cleft on one or both sides of the face that runs from the upper lip up toward the lower eyelid.

The cleft begins at the upper lip, runs beside the nose, and ends near the lower eyelid. The facial bones can also be involved, including the area around the upper jaw and the bottom edge of the eye socket. The eye can be affected in different amounts, and in some cases it is very small or absent. 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, to one or both sides of the face
  • Cleft running beside the nose to the lower eyelid
  • Differences in the facial bones around the upper jaw
  • Differences in the eye, from small to absent

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 and genetic specialists.

  3. Consider genetic testing

    Changes in SPECC1L are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.

  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); Genetic specialists (geneticists)
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 FACES: The National Craniofacial Association 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
Can genetic testing of the SPECC1L gene help explain this?
Which specialists should be on a cleft and craniofacial care team?
How might this cleft affect vision, and who should check the eyes?

Quick facts

Symptoms usually startduring Pregnancy and as a Newborn
GenesSPECC1L

GARD lists the SPECC1L gene for this condition. It says changes in genes (variants) cause it.

Genetic

Also known as: facial clefting, oblique, type 1

Patient organizations

Source: NIH GARD · Tessier number 4 facial cleftGARD ID 16974 · 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

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Explore research for Tessier number 4 facial cleft

Explore actively recruiting Tessier number 4 facial cleft studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Tessier number 4 facial cleft with HealthSpark. Share your city to explore research near you.

  • 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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