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Craniofacial conditions

Hemifacial Microsomia & Goldenhar Syndrome

Asymmetric underdevelopment of one half of the face – the oculo-auriculo-vertebral spectrum (OAVS).

Summary

Hemifacial microsomia is, after cleft lip and palate, the second most common congenital facial malformation. Characteristic is an asymmetric underdevelopment of the lower jaw, ear and soft tissues of one half of the face. It belongs to the oculo-auriculo-vertebral spectrum (OAVS). Goldenhar syndrome is a variant of this spectrum with additional eye findings (epibulbar dermoids) and vertebral anomalies. Intellectual development is usually normal.

Cause

Hemifacial microsomia arises from a developmental disturbance of the 1st and 2nd branchial arches in early pregnancy, from which the lower jaw, ear and parts of the face arise. The causes are heterogeneous; most cases occur sporadically (without familial clustering). Among other things, an early circulatory disturbance in the facial region is discussed; in a smaller proportion, genetic factors play a role.[1] The frequency is estimated at about 1 : 3,500 to 1 : 5,600 births.[2]

Genetic counselling is useful, as the spectrum is very variable and milder forms occur in some families. A genetic work-up can contribute to classification.

Typical features

  • Unilateral (more rarely bilateral, asymmetric) underdevelopment of the lower jaw with facial asymmetry
  • Ear malformation (microtia to anotia) and anteriorly placed skin tags (preauricular tags)
  • Conductive hearing loss on the affected side
  • Weakness of the facial nerve (facial palsy) on the affected side possible
  • Macrostomia (laterally widened mouth opening)
  • Eye involvement in Goldenhar syndrome: epibulbar dermoids (benign tissue growths on the eye)
  • Vertebral anomalies (especially in Goldenhar syndrome)
  • Occasionally associated malformations of the heart or kidneys

The expression is very variable – from very mild to marked.

Goldenhar syndrome as a variant

The term Goldenhar syndrome denotes a more severe variant of the oculo-auriculo-vertebral spectrum, in which, in addition to the facial features, epibulbar dermoids of the eyes and vertebral anomalies occur. Hemifacial microsomia and Goldenhar syndrome are today understood as different expressions of the same spectrum.[1]

Functional priorities in the newborn

In case of marked underdevelopment of the lower jaw, breathing and feeding problems can exist – similar to Pierre Robin sequence. These take priority and require an early assessment. An early hearing work-up is just as important, as hearing influences language development.

Warning signs in the infant: laboured breathing, breathing pauses, bluish discolouration, feeding and growth problems – have assessed promptly by a doctor.

Treatment – step by step over years

  • Securing the airway and feeding in the newborn period, if needed mandibular distraction
  • Early hearing provision (e.g. bone-conduction hearing system) and regular hearing tests
  • Correction of the macrostomia (lateral facial cleft) in infancy
  • Treatment of the eye findings (e.g. removal of epibulbar dermoids) if needed
  • Lower jaw and midface reconstruction with distraction or bone grafts
  • Ear reconstruction (autologous rib cartilage, mostly from school age, or epithesis)
  • Orthognathic surgery for the definitive bite correction after growth completion
  • Soft-tissue augmentation (e.g. autologous fat or microsurgical flaps) to improve symmetry

The order depends on the airway, hearing and growth. Definitive procedures are mostly only completed in adolescence or early adulthood.

Diagnostics

The work-up includes: clinical examination by a craniofacial team, hearing test and ENT assessment, ophthalmological examination, 3D imaging of the facial bones, in OAVS imaging of the spine as well as work-up of heart and kidneys if suspected. Genetic counselling can be useful as a supplement.

Treatment in an interdisciplinary centre

Ideal is care by a team with oral and maxillofacial / craniofacial surgery, ENT and audiology, ophthalmology, paediatrics, orthodontics, speech therapy, physiotherapy, genetics as well as psychology.

Possible treatment roadmap

Newborn period
Securing airway and feeding, hearing screening, assessment of eyes and – in OAVS – spine / heart.
Infancy / early childhood
Hearing provision, macrostomia correction, if needed treatment of epibulbar dermoids; speech support.
School age
Lower jaw reconstruction / distraction, start of ear reconstruction, orthodontic treatment.
Adolescence
Definitive bite correction (orthognathic surgery), soft-tissue compensation, psychosocial support.

Prognosis

The prognosis is favourable: intellectual development and life expectancy are usually normal. Severity and individual course are however very variable. With early hearing and airway provision and staged reconstruction, most affected people achieve good function, symmetry and quality of life.

Key message: Hemifacial microsomia and Goldenhar syndrome belong to the oculo-auriculo-vertebral spectrum and affect above all one half of the face. Airway and hearing take priority; the reconstruction of lower jaw, ear and soft tissues is carried out step by step at a specialised centre.

References

  1. Tingaud-Sequeira A, Trimouille A, Sagardoy T, Lacombe D, Rooryck C (2022). Oculo-auriculo-vertebral spectrum: new genes and literature review on a complex disease. J Med Genet, 59(5):417–427. DOI
  2. Hartsfield JK (2007). Review of the etiologic heterogeneity of the oculo-auriculo-vertebral spectrum (Hemifacial Microsomia). Orthod Craniofac Res, 10(3):121–8. DOI

Typical treatment sequence

Very variable severity; treatment by severity (OMENS) over years.

SurgeryCheck-upTherapyAssessment
Newborn
Assessment

Assessment & classification

OMENS classification; secure breathing and feeding; hearing assessment.

Infancy
Therapy

Hearing provision & airway

Bone-conduction hearing aid; early mandibular distraction for severe airway narrowing.

Childhood
Surgery

Mandibular distraction

For marked asymmetry or airway narrowing; timing individual (often preschool to school age); orthodontic guidance.

approx. 6–10 years
Surgery

Ear reconstruction

Reconstruction of the outer ear (rib cartilage or implant) for microtia.

After growth
Surgery

Osteotomy

Definitive correction of jaw asymmetry (bimaxillary, chin correction if needed); soft-tissue augmentation.

Lifelong
Check-up

Follow-up

Hearing, teeth, facial nerve, psychosocial aspects.

Typical course – highly individual. Timing, order and type of procedures are always determined individually at the specialised centre and may differ markedly. This is based on established craniofacial treatment concepts (incl. ERN CRANIO). See also Treatment pathways and Craniofacial library.

Related topics

Further pages on this condition – diagnostics, treatment, cross-cutting topics and research.

Treatment & surgery

Further information

Selected authoritative external sources on this condition.

External third-party sites; linked, not hosted. Not a recommendation in individual cases; does not replace medical advice.

Note: The content on this page is provided for general information and does not replace individual medical advice, diagnosis or treatment. Information on insurance coverage is non-binding; the case-by-case assessment by the responsible insurer is decisive. Please consult your care team if you have any questions.