FAQs

Q.
What is Goldenhar Syndrome?
A.
Goldenhar Syndrome is a congenital (meaning present at birth) condition that deals with many different birth defects. Not all are present in each case and there are many varying degrees of its severity.

Q.
What is the difference between Hemi-Facial Microsomia and Goldenhar?
A.
Both are conditions in which one side of the face is smaller than the other, will include the jaw, ear and facial bony structures.. Goldenhar will also include issues involving the eye and the spine.

Q.
Why did this happen?
A.
Doctors are uncertain why Goldenhar occurs. However, it is theorized that some sort of in-utero trauma or exposure may have led to this condition. There is also some minimal evidence that there may be a weak genetic link. Environmental factors may play a part and there does seem to be an increased incidence of Goldenhar among the children of Gulf War Veterans.

Q.
What do they look for, physically, to make a diagnosis?
A.
A child with Hemi-Facial Microsomia or Goldenhar will have a difference in size between the two sides of the face - a small jaw, smaller on one side than the other, Microtia in one ear, and ear tags. The asymmetry of the face may become more pronounced as the child gets older.

Q.
Is it still Hemi-Facial Microsomia if both sides of my child's face seem to be affected?
A.
Yes. In fact, in approximately 15% of children with Hemi-Facial Microsomia, both sides of the face were affected - although the two sides were not affected equally.

Q.
When can they fix the asymmetry of the face?
A.
There is some controversy concerning the optimal time of surgical intervention. However, the recommendation by most craniofacial teams at present is to consider an early surgical correction, with distraction osteogenesis treatment as early as age 2.

Q.
Will this happen to children I have in the future?
A.
Most likely - no. Hemi-Facial Microsomia and Goldenhar seem to occur sporadically at a rate of 1/3,500 - 1/5,000. There is some evidence of a weak genetic link, but most believe it be more environmentally caused.

Q.
What kinds of problems could my child have?
A.
As the answers to this are quite extensive this information can be found on the Associated Conditions page.

Q.
Will my child need surgery?
A.
Depending on your child's associated conditions, they may require surgery to correct the various birth defects. Some of the more frequent surgeries among children with Goldenhar Syndrome are:

insertions of feeding tubes

repair of the palate and or lip

removal of skin tags

insertion of flex tubes (ear tubes to improve hearing and lessen the chances of blockages impairing the hearing.)

lowering and or lengthening of the jaw on the affected side

addition of bone to build up the cheeks

soft tissue may need to be added to the face

3 to 4 operations to reconstruct the outer ear

Q.
How do I get help for my child?
A.
You should be in contact with a geneticist who can refer you to various specialists who can help you with an surgeries needed. Be an advocate for your child. Demand the best treatment for your child. If you disagree with your doctors suggestions, get an outside opinion from another doctor. It is your and your child's right to fair treatment from all medical professionals. If you feel you are being mistreated, find a doctor that appreciates your informed opinions. Remember you live with your child and know what makes them happy and what doesn't, your doctor doesn't. Above all else, love and support your child through all their challenges. They are what you make them. Other organizations that may be of help can be found listed on the Reference page.

Q.
Am I alone?
A.
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Currently the Goldenhar Syndrome Support Network has 120 online members in our mailing list and 10 off-line members. If we don't have what you need in the means of support, we can help you find the right organization for you. You can join our online mailing list by registering at http://health.groups.yahoo.com/group/goldenharadults/ or by contacting Barb Miles, by email at support@goldenharsyndrome.org or by conventional mail at Goldenhar Syndrome Support Network; 9325 163 Street; Edmonton, Alberta; T5R 2P4 Canada.

New advances in procedures to correct the symptoms of Goldenhar Syndrome are constantly being developed. Be an advocate for your child and stay informed. I try to keep up with recent findings, and hope to soon list them here at this site.