Our Experiences
From the viewpoints of parents/siblings of and members with Craniofacial differences
People With Goldenhar Syndrome Experiences
Story 1
I was born with Goldenhar Syndrome affecting the right side of my face. In my case, this means I have an underdeveloped right ear and am missing part of my jaw. I am partially deaf and have scoliosis as well. So far, I’ve had 14 surgeries to improve my condition. This includes 4 major jaw operations, 2 ear reconstructions, a BAHA abutment surgery, spinal fusion surgery and various smaller procedures. Living with Goldenhar has been challenging at times. For example…
I missed a lot of school growing up due to various hospital appointments and operations, so I often fell behind academically and had to catch up in my own time. The operations themselves are also challenging to get through as they are very invasive, and the stress of complications arising can be very overwhelming at times. Being partially deaf is also difficult as I struggle to locate where sound comes from and often feel a little left out in social situations as I always miss parts of conversations. Even though living with Goldenhar can be difficult, it has given me a unique outlook on life for which I am grateful. It has also allowed me to meet some of my closest friends for life at the Goldenhar family weekends, and being able to fully relate to others is something I find extremely special.
Story 2
My form of Goldenhar is Hemifacial Microsomia. This form of Goldenhar affects the right side of my face. This means my right ear didn’t form an ear canal, an underdeveloped Jaw bone, an underdeveloped cheek bone and an underdeveloped eye socket.
Throughout my life, I have had 10 surgeries performed, which made huge improvements in my hearing and facial structure. One of the great benefits I have is that I don’t try to compete with others regarding education or career; I try to the best of my ability, and I don’t let my Goldenhar hold me back.
Goldenhar Syndrome has its positives but also its negatives. For me, hearing is a continuous problem, especially if I am receiving instructions; if there is too much background noise, I struggle to hear, and I begin doubting myself if I heard the full instruction and begin to feel embarrassed about having to ask to repeat what they had said. The best thing about Goldenhar UK is being able to connect with other people and hear their personal experiences throughout their lives with education and socialising.
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Parents, siblings & partners of people with Goldenhar Syndrome
Story 1
My daughter has Goldenhar among her many other diagnoses. As she has other medical issues, she cannot communicate how she feels about being different and having Goldenhar. However, as a parent who can see the differences, when she was younger, I felt like kids stared at her, and some would ask what was wrong. It was a scary time when she was a baby, the unknown and having never heard of Goldenhar syndrome, my sister researched and found Goldenhar UK
I got straight in touch and started to receive support from other parents who understood. We attended our first group, and it was great to see that I was not alone; there were kids further in the journey than us. So, the support it gave me was life-changing. Meeting up and being part of a group supports not only me but also my family. My parents, who help care for her, now have the community, too. As she got older, she still had no idea about the facial differences that she had with others like her peers or sister. But she can see there are other people wearing the Baha that she has.
Story 2
We didn’t know anything about Goldenhar syndrome until our son was born. 2 specialists came to speak to us within 2 hours of giving birth to explain everything. It was a shock and so much to take in, with many consultants involved from that moment. He has had 4 surgeries on his spine, a nasal dermoid removal through the craniotomy approach, and a magnetic plate put in for his Baha hearing aid.
He’s Now 9, doing really well, and has cheeky characteristics and an amazing imagination. We found the Gh family support group, which has been amazing for our extended family. Yearly get-togethers, including fun for all the family and specialists, come in to talk.