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Optic Nerve Hypoplasia- When does it stop hurting?

My daughter was diagnosed with ONH on Monday. Since three months old her eyes have constantly moved, never fixing on anyone or anything. She was three weeks premature, but only because I self induced. I've read up on it and prematurity could be a factor that causes ONH. I can't help but think I did this to her!

I had a battered and broken childhood. I was beat, sexually abused and neglected. I was one of the few saved by the system. I promised myself no person, myself included, would ever bring harm to my children. I hope and pray I didn't cause this! Can anyone tell me what it's like raising a child with ONH? Our doctor told us that our little Abigail was blind.

She'll be a year old Nov 29th, and this year on Nov 7th we'll be blessed with our second. How difficult will it be to raise them both, when each is going to need so much attention? Please if anyone has advice do not hold back!

Thank You!

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Re: Optic Nerve Hypoplasia- When does it stop hurting?

My daughter was born with ONH in 2004 and is fixing to celebrate her 14th Birthday??. It has been a total learning experience as she was my first child (I currently have 4). I can tell you that I felt the same way as you do when I first found out something was different and that she couldnt see out of one of her eyes. I can also give you some hope. My daughter lives a very normal life and does so well in everything she chooses to do. She is not hindered at all (which was my biggest concern). She playes sports, is in first chair of her orchestra playing her violin, takes pre-ap classes and does all the things 13yo girls do lol. She tilts her head a certain way to help her see more clearly at times but other than that you would never know she didn't have all her vision. I did have some trouble with the school when she was younger. They would always try to give her devices and different things to "help" that I didn't feel like she needed. I was up there many times making them stop all that. The way I saw it was if she gets to a point in her life that she needs assistance we will address it then. Praise God that day has never came. My advice would be to treat your child as if there is nothing different about them and they will grow up to be strong and independent. You are your childs advocate never forget that. I had my daughter when I was 15 and we have made it, im sure you can do it also. The guilt... I have felt that to. Thinking maybe this or maybe that but honestly no one knows how or why this happens so I just let it be.

Re:Optic Nerve Hypoplasia- When does it stop hurting?

When my daughter was 2 months, we noticed something off with her eyes. By 6 months, she was officially diagnosed with ONH. She's now almost 3. It's been hard at times but I think it's probably not much different than raising a sighted child. (I say probably because she is my only child so I haven't raised a sighted child, though I've babysat a lot.) Just know you're not alone and it gets better. Once the doctor visits get less and you get the hang of things it will be easier to deal with. Just rememer, your child can do almost anything a sighted thing can. Don't feel bad. It's not your fault. I have started a blog about my experiences with my own daughter. If you'd like, check it out and ask as many questions as you want.

Re:Optic Nerve Hypoplasia- When does it stop hurting?

Please don't blame yourself. You didn't do anything to cause it.

Re:Optic Nerve Hypoplasia- When does it stop hurting?

Its not your fault. I jas born 4 months premature and I have ROP.

Re:Optic Nerve Hypoplasia- When does it stop hurting?

I have a 2 1/2 year old son born with ONH. We found out he had it at the age of 4 months. Over the pat 2 !/2 years i have learned that the stuggles are not his but mine. We have been told by doctors and other parents when our children should be hitting milestones but a child with ONH will hit those milesstones at there own pace and trust me when they hit they they hit them running. There is nothing they cant do and and they know no differently. Dont give up about 3 months ago my son really started showing signs that he was able to see some things. Stimulate their vision as much as you can even if you are not sure if your child sees it. Because with them one day they may not see it and the next day they may. They will learn to use vision if they have it so keep encouraging. Nothing was your fault. Just keep encouraging and think of new ways to help them learn everything will come together!!!

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