Goldenhar Syndrome: a guide for new parents and families

This guide has been written for new families from a parental perspective. It is based on the views and outlooks of Goldenhar parents, adults with Goldenhar and a small cohort of teenagers. The guide aims to provide information, practical advice, hope and reassurance for families. It may also be useful for medical professionals, educational practitioners and the general-public.

As many of us know, being a new parent is exciting and challenging, but when a child is born with medical complications, additional needs and physical differences (which can be visible and invisible) this can present additional challenges and stress for new families. Please be assured that you are not alone, you are not the only one this has happened to, you are not to blame for these unexpected complications, and the future can be much brighter!

Just like any other child, a child with Goldenhar has every possibility of being able to live a fulfilling and enjoyable life and they have every chance of growing into a healthy, happy and successful adult, able to have a career and life they choose for themselves. There are many success stories of Goldenhar adults who are graduates, authors, graphic designers, digital creators, lecturers, musicians, business developers and owners; and many people who have gone on to have families of their own. There are no limits to what your Goldenhar child could achieve in life!