questionsandanswers2

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 lesson 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.
* 3 to 4 operations to reconstruct the outer ear(if using own tissue to do so).
* 2 operations to implant the fixators for a prosthetic 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 any 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 childs 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.

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.

Q.
Will my child be mentally retarded?

A.
Probably not. Neither Hemifacial Microsomia nor Goldenhar Syndrome show mental ability to be a problem.

Q.
Will my child be likely to pass this condition on to my grandchildren?

A.
Most likely-no. Hemifacial Microsomia and Goldenhar Syndrome seem to occur sporadically at a rate of /3.500 - 1/5.000. There is some evidence of a weak genetic link, but most believe it to be more environmentally caused.