Goldenhar Syndrome

What is Goldenhar Syndrome?
Goldenhar Syndrome is a congenital birth defect which involves deformities of the face. It usually affects one side of the face only. Characteristics include:

  • A partially formed or totally absent ear (microtia)
  • The chin may be closer to the affected ear
  • One corner of the mouth may be higher than the other
  • Benign growths of the eye
  • A missing eye

Goldenhar is also known as Oculoauricular Dysplasia or OAV.

Why did this happen?
Doctors are uncertain why Goldenhar occurs. However, they do not believe it is the result of anything the mother did while she was pregnant. Environmental factors may play a part and there does seem to be an increased incidence of Goldenhar among the children of Gulf War Veterans.

Will this happen to children I have in the future?
The chances of having another child with Goldenhar is less than 1% or less. Your child has about a 3% chance of passing it on to his or her children.

What kinds of problems could my child have?
In addition to the physical characteristics common to Goldenhar, your child may have the following problems:

  • Hearing problems
  • Weakness in moving the side of the face that is smaller
  • Dental problems - the soft palate may move to the unaffected side of the face
  • The tongue may be smaller on the affected side of the face
  • Fusion of the bones of the neck

Will my child need surgery?
Depending on the severity of Goldenhar Syndrome, your child may have some or all of the following surgeries:

  • Lowering of the jaw on the affected side
  • Lengthening of the lower jaw
  • 3 to 4 operations to rebuild the outer ear
  • Addition of bone to build up the cheeks
  • Soft tissue may need to be added to the face

Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites. The listing below will get you started.

Zarina_scar_face
I would like to connect with those affected by goldenhar syndrome whether you are a patient or parent. I would like to showcase you on my blog as the Goldenhar Syndrome.