Optic Nerve Hypoplasia – Information and Support
Optic Nerve Hypoplasia (ONH) is a complex congenital condition associated with moderate to severe vision loss.
Whether your child is newly diagnosed or has been living with Optic Nerve Hypoplasia for a long time, understanding your options will help you find information and support and enhance their quality of life.
What is optic nerve hypoplasia?
Optic nerve hypoplasia (ONH) is a present-at-birth (congenital) sight condition where your optic nerve is small or underdeveloped (hypoplasia). Optic nerves are responsible for the sending of messages between your eyes and your brain. ONH can often lead to vision problems like vision loss and irregular eye movements. Optic nerve hypoplasia affects an estimated 1 in 10,000 children and is one of the leading causes of vision loss in young children. The degree of sight loss associated with this condition can vary from mild to severe.
What optic nerve hypoplasia?
Emily Davidson, UK based influencer and disability rights activist discusses how the condition effects her day to day life.
What are the symptoms of optic nerve hypoplasia?
The optic nerve structure is the eye sends visual information from the eye to the brain, these messages are how we ‘see’ the world. Nerves can be affected in either one of both eyes. If only in one eye and minor, vision can be almost normal, but if both eyes are affected in a more severe way, the person may only be able to see large objects and in serious cases they may not even have light perception. In the early years the first signs of ONH are irregular eye movements. Most cases of ONH occur randomly without any other family members being affected.
Other ocular features of ONH may include:
- nystagmus
- photophobia
- problems of peripheral vision
- poor depth perception
Can optic nerve hypoplasia be treated?
ONH is an uncurbable and a non-progressive condition, any sight that is gained in later years will not be lost. It is common for children to appear completely blind when very young, but using a range of techniques can help them to develop the useful sight they have, which will be exemplified by improved visual skills in later life.
Families and teachers can help children by providing appropriately sized books and toys. Children with ONH often have to learn aspects of vision, depth and perception to allow them to play and carry out many of the ordinary activities of childhood. Families can provide important assistance by teaching activities such as using slides, climbing stairs and water play.
Helpful Links and Organisations
ONH Awareness
Is a global organisation, their mission is to provide resources and support to families and individuals all over the world by providing grants, assistive equipment, educational programs, and social opportunities to individuals and families living with optic nerve hypoplasia.
Click here to find access family related resources
Click here to join the online support group
Through Piper’s Eyes
A parents blog page dedicated to her journey with raising her daughter Piper, who at birth was diagnosed with Optic Nerve Hypoplasia.
Click here to visit the Instagram page
Great Ormond Street Hospital
Great Ormond Street Hospital (GOSH) is one of the world’s leading children’s hospitals. Services at GOSH for children with a vision impairment include the Eye Clinic Liaison Service, Developmental Vision Clinic and Resource directory.
Click here to visit the hospitals website
Connect with other parents and find support with VICTA
Join the VICTA Parent Network – with almost a thousand members! You’ll find parents who have vision impaired children of all different ages and with various eye conditions. You can use the group to ask questions you may have and connect with parents of children with shared conditions or from your local area.
Visit the support section of the VICTA Parent Portal here to find out about support groups, both in your area and online.
VICTA activities
VICTA is a national charity supporting children and young adults who have a vision impairment from 0 to 29 years. We have a calendar of fun and engaging activities across the year to help young people make friends, grow in confidence and gain the skills they need for an independent future.
Visit the VICTA activity calendar >
Stay up-to-date with VICTA’s news and latest activities on social media @VICTAUK.
Optic Nerve Hypoplasia stories
Wobbly eyes, the tell-tale sign.
Nystagmus aka wobbly eyes, how this condition became the first noticeable symptom of my daughter's vision impairment- by Charlotte Mellor. I have written previously about my early diagnosis journey in discovering my daughter was vision [...]
Watching my child grow wings
Congratulations to Emily Woodhams-Beazeley who is the winner of December's Blog Factor competition with her celebratory post! My daughter Poppy is eleven and has the eye conditions retinal dystrophy and nystagmus, along [...]
Parent’s Perspective – Dad’s Voice
Dad’s Voice, by Dave Wood Being the parents of four means a busy life. We have three girls and a boy, each with their own challenges. Both my wife, Gill, and I play our part [...]
