Information about Goldenhar syndrome and the impacts it can have on your appearance, as well as what we can do to help.
Goldenhar syndrome is an umbrella term for a range of conditions which affect the face and sometimes the vertebrae. It usually affects the development of one of the ears, as well as the jaw and cheek on the same side. This is typically accompanied by other features, which we’ll look at further down the page.
Goldenhar syndrome can affect the appearance in many different ways. However, it often causes the face to look different, usually on one side. Some people with Goldenhar syndrome may have surgery and this can also affect the way you look, leading to scarring and other visible differences.
Goldenhar syndrome is a congenital condition – meaning it is present from birth. It is a rare condition – occurring in one in 25,000 births or fewer. If you have recently found out that your baby has Goldenhar syndrome, you may be struggling to find information about it. You may be worried about how your child will be impacted by a condition which affects the way they look. If you live with Goldenhar syndrome yourself, you may be struggling with the impacts of the condition on your appearance.
On this page, we explore what Goldenhar syndrome is, as well as the different ways it can affect you or your child’s appearance. We also look at causes and treatments, and share information about the ways we can help you with the impacts of looking different on your mental health and wellbeing.
I have learned to love and accept my facial and body differences and I am currently on a journey of embracing my differences with confidence.
Goldenhar syndrome usually leads to underdevelopment of one ear, plus the jaw and cheek on that side of the face. On its own, this is known as “hemi-facial microsomia” (HFM). When HFM occurs alongside other features, the condition is described as “Goldenhar syndrome”. The condition gets its name from Dr Maurice Goldenhar, the ophthalmologist who first identified the condition in 1852.
Below, we’ve listed various features of Goldenhar syndrome affecting the face and other parts of the body, as well as other medical impacts which may occur. It’s important to stress that not all of these impacts occur in Goldenhar syndrome. It may be that only one of these features is present in addition to HFM.
Features affecting the face may include one or more of the following:
Other parts of the body may also be affected, with features including:
In some cases, Goldenhar syndrome can affect the internal organs, leading to problems with the kidney, lungs and sometimes the heart. Breathing difficulties can occur and sometimes a tracheotomy (a small hole made in the windpipe) is needed after birth.
Feeding problems sometimes occur in babies – for example, due to the shape of the mouth – and sometimes help is needed with feeding, for example, through the use of a feeding tube. Babies with Goldenhar may also struggle to gain weight during the first two years.
In most cases – about 70-80% – Goldenhar syndrome affects only one side of the face. Children and young people can experience barriers to learning due to hearing loss. However, Goldenhar syndrome itself is not usually associated with learning disability.
The underlying causes of Goldenhar syndrome is not known. You may hear doctors refer to it as “sporadic” – meaning it occurs randomly or “out of the blue”.
The condition arises between the eighth and twelfth weeks of pregnancy when different types of tissue grow together and meet to form the facial features. At this stage, the tissues that become the face and jaw start to separate from the upper part of the face. In Goldenhar syndrome, this process doesn’t happen in the usual way.
Goldenhar syndrome is not thought to be genetic, meaning it is not passed on by parents to their children.
If you are a parent with Goldenhar syndrome, there is no increased likelihood that your child will have the condition. If you have a child with Goldenhar syndrome, there is no greater risk that your next child would have it.
As Goldenhar syndrome is not a genetic condition, there is no DNA test for the condition. Instead, it is diagnosed clinically – in other words, by tests and examinations.
If Goldenhar syndrome is suspected, some of the following tests may be used to identify what features are present and whether treatment may be needed:
After his surgery, Liam started being bullied, leading to doubt and low self-esteem. But by embracing his difference, today Liam is much better able to handle negative reactions – and he shares his story with us in this post.
Read Liam’s storySome aspects of Goldenhar syndrome may need to be managed with treatment. Treatment varies from person to person, because the condition is different in everyone.
Common treatments include:
Sometimes, surgery may be needed. Here are some examples:
If you have Goldenhar syndrome, you may feel self-conscious about the way you look. You may experience unwanted attention from other people, including comments and questions.
If you’re a parent or carer of a child with Goldenhar syndrome, you should be aware that the condition may cause quite noticeable visible differences to your child’s face and potentially other aspects of their appearance. For example, some people with Goldenhar condition have a hunched appearance or are shorter than average, due to scoliosis. Surgery can also alter the appearance.
Living with a visible difference and dealing with other’s people’s reactions can have an impact on you or your child’s wellbeing and mental health.
Here at Changing Faces, we can help if you or your child are struggling with the impacts of Goldenhar syndrome on the way you or they look.
We offer counselling and wellbeing support to help with these social, emotional and psychological impacts of living with a visible difference. Our trained practitioners will listen and provide guidance to help you get through the challenges you are facing. Have a look at our dedicated page to see whether counselling and wellbeing support might be helpful for you.
We also have a selection of online self-help guides covering all aspects of life – from dealing with other people’s reactions and mental health and wellbeing, to dating and relationships with a visible difference. We also have a section for young people which includes topics such as school, making friends, social media and body image. Alongside this, we have guidance for parents and carers to help you support your child and manage the impacts on your own wellbeing.
We provide other services for people with Goldenhar syndrome and other visible differences:
Learn more by contacting our Support and Information Line. Our friendly team are here to connect you with our services. They also offer support calls so you can talk about the impact of Goldenhar syndrome on your life.
Guidance, support and advice is also available from other organisations. Please follow the links to their websites to learn more.
Goldenhar UK provides information and support services for families of children with Goldenhar syndrome. As well as providing up-to-date resources, Goldenhar UK holds annual family days so you can meet other people impacted by Goldenhar syndrome.
A national, highly specialist psychological service based at North Bristol NHS Trust, supporting adults (16+) with appearance-related distress. They can provide face-to-face and remote support via NHS Attend AnyWhere. Please speak to your GP or healthcare professional to discuss a referral.