Golden-Har Syndrome

I have a 26 year old daughter with Goldenhar Syndrome. We have always been told it is not genetic. This is something that just happened. She has cranial facial, hearing, eye, vertabra's, spinal, problems. She lives a normal life after 18 surgeries, a lot of existing problems but works a full time job as a pharmacy tech.

i read all of the above letters and my great granddaughter has golden har and has all the symptoms that all these people have with one exception. No One mentioned having a feeding tube. She is 2 years old and has had a feeding tube since she was born.

I have a 28 yo daughter who has Goldenhar Syndrome. She too has cranial facial, hearing and spinal issues. She has had spinal fusions at the age of 4 and 15. She is short as a result. She is only 4 ft 4 inches. She recently graduated with her master's degrees in community counseling from TCNJ.

Hi, I am 53 years old mom who obviously was born with Goldenhar syndrome, I had a growth removed in my right eye when I was an infant, I have a crooked smile, tabs removed on both ears, heart on wrong side and a fused neck. I was born in Argentina and my mom never new what when wrong with me at birth and md's in argentina did not know this syndrome. After many years of not knowing what went wrong with my face and body I finally found out not long ago what I have. I have two handsome boys and they are both ok; but I worry about them having kids with this horrible syndrome. It's not easy growing up as a young lady having to cover my ears at all times and watching when laughing because my mouth would be so crooket. Also my jaw is very small. Now at 53, I am having severe neck and back pains. Went to see several rheumatologist and they are saying nothing is wrong with me take advil. I feel I am all alone I have never met anyone like me.

i have Golden Har syndrome. I hope you still check your email considering this was posted a year ago. I have been having back and neck problems.. I have the same problems. Please contact me. 

 ***this post is edited by moderator *** *** personal information are not allowed*** Please read our Terms of Use

MY name is Stacy.

I am a 48 year old with Goldenhar Syndrome affecting the left side of my face. I have partial paresis of the left side of the face, a small underdeveloped left outer ear, refractive amblyopia affecting the left eye, underdeveloped shortened left mandible, and developed chronic tinnitus in the left ear as an adult. I have mild scoliosis I was also diagnosed with autism spectrum disorder within the past year, though I had shown signs all my life. Make sure you get your kids screened for autism and refractive amblyopia. I was never screened for the things I should have been as my parents didn't have insurance to cover preexisiting conditions. If you wish to email me, I would be glad to answer your questions.

I"m a woman, borned with Goldenhar Syndrome. Have many of the disorder problems, most of them are fixed yet.

My daughter was born with the tag on her left ear and the benign cyst on her left eye also!! Strange! We were told everything is always on the same side of the body !! Her dad has one eye that is 3 different colors and a spot in his head tgat didn't quite develop. His mom has a huge birthmark on her face!! My daughter is 27 and so far her little boy doesn't have any signs other that a strawberry birthmark which Dr says will go away.

Hey I'm Cadee I have goldenhar. About the starring thing you can't physically do anything I'm 13 and am stared out anywhere I go. I was always told to smile and keep walking but my mom told.me to look them straight in the eye and smile then look the other way my mom could never do ajyth I Nguyen but tell me to ignore them and keep walking with your head held high. I know myself that's not an eazy task all they are is interested they don't see many people like me. Just talk to her and tell her they are just noise and want to know why she is so special. My niece will be three this year and I tell her they just want to know why I'm so special and she understands when I say that. I hope I was able to help you:).

Hi- my husband also has Goldenhar and we we're thinking of having children. We've seen a prenatal genetic counselor who wasn't able to help us.... were any of your brother's children affected or were they healthy and "normal"?

Hello my name is Haylee and I live in New Mexico. I was really touched by your story and I'm very glad that you are there for your family. I do have one question for you if you can help me with the situation. My husband was born with goldenhar and he is missing the lower part of his jaw bone. He has had numerous surgeries since he was 4 years old. We really want children but have actually had two miscarriages. I have a son who is now 13 with no complications during that pregnancy. I'm really wanting to know if I can have children with him or not. The babies can't seem to make it past 14weeks and if you have any answers for me I would sure appreciate it thank you very much.

You said you had a hard time in school
How so.. they said my grandson has goldenhar.. He's 5 month's old... waiting to fix his eye when he turns 3.. I'm just a worried grandma and don't want him in pain or to struggle with life..hes the cutest

I have hemi facial micro somia, also known as golden harrs, I'm an identical twin and my sister was fine

I have goldenhar syndrome, one ear and a malformed lower right jaw bone a d ADHD, I have a perfect 8 year old daughter, she has spina bifocal occulta meaning a little dent at the base of her spine where the hole would have been if I hadn't taken folic acid I'm guessing then it would have been an open hole that the fluid from spine and brain would leak from which would be spina bifIda, I don't mean to scare you and may be an unrelated thing but that is all is can say is wrong, she is still perfect and beautiful and has no spina bifida symptoms but she gets a little worried about people teasing me so I have to never criticise myself and show her how to be confident when you are different :) sorry it won't let me correct earlier typo.. was supposed to say spina bifida occulta is the dent at based of her spine and doesn't cause problems. Goodluck! I was just excited to have a child and never thought she would inherit anything

Im 45, and my daughter is 16. We have golden Har. We live in cullman, al. We used UAB genetics and craniofacial surgeon dr. John grant at children's. My email is ***this post is edited by moderator *** *** posting of private information such as name, phone number or email address is not allowed in order to protect your privacy*** Please read our Terms of Use​