Optic Nerve Hypoplasia Support Group

Optic nerve hypoplasia is a medical condition that results in underdevelopment of the optic nerves. Optic nerve hypoplasia can appear in one or both eyes, causing anywhere from a mild to serious visual impairment in the form of decreased visual acuity and visual fields.

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deleted_user 12/22/2011

recently i have just found out that my 3 month old daughter has optic nerve hypoplasia.
we don't know how much vision she has or hasn't got and we are very confused about what the future may bring for her. she is due for a brain scan and more tests after xmas and i am trying to stay positive so we can have a good xmas.

little is know at the moment but if any one can please help or give me any advice or let me know about their experiences it would be very much appreciated.

thanks.

deleted_user 12/30/2011

First off, if that's your girl in your picture, she's a cutie! :)

My daughter is 6.5 now and has ONH. As far as we know, and she can tell us, she has no vision. Prepare yourself for rough times ahead, but always hope for the best. I think not knowning was the toughest for me... All you can do right now is keep your chin up and wait to hear results.

If you want to, you can do a dark-room test to see if your girl reacts to light... Just take her to a dark room (for us it was our bathroom without windows) and use a flashlight to see if she reacts to you turning it on / off. I wouldn't put too much weight on the results if she's only 3mo old, though. Try it every once in a while and see if you can get any reactions. :)

Try to stay positive and just keep lovin on your little girl! Keep us posted and don't hesitate to ask if you have questions!

-Andrew

Noxx 02/06/2012

Hi. just wanted to drop in and give what comfort i can, if any. i know it's scary but having this from birth will in an odd way give her the best chance to adapt. children are amazingly resillient that way. while i'm no Nobel prize winner, I have had ONH since birth and while challenges still present themselves, i have a family that loves me, a beautiful home, loving partner and promising career possibilities. You and she will learn together, and it will be ok.
hugs
noxx

deleted_user 08/06/2013

Life is tough. She might get teased for her poor vision. Always, always, always be super supportive. If she is sad about her vision, don't get annoyed, ever. Comfort her in every way you can.

paigeclark 02/10/2016

I know this is a bit old but I just found out yesterday my 4 month old daughter has ONH. Same thing with us, we don't know exactly how much vision is lost and we are just waiting for the call to get her an MRI appointment. how did the tests go?

jazmineharrison 03/30/2016

I have had this my whole life and now I'm 18 years old and it has started to really effect me I'm blind in one eye and can't go into the Field I want to. Also I have no hand eye coordination... If you have questions ask me

musicfairy 11/03/2017

Don't give up hope for a normal life for your daughter. I have been totally blind since birth, and have a normal life. Some things may be done differently, some things may be harder, but it is by no means impossible. Currently, I'm going to college while working part time. I don't live with any family or friends, and do everything anyone else would. No one lives life the same, but assume anything is possible until proven otherwise.
Hoping for much vision and good luck, I'm always up for questions!

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