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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Parents of Blind infants

Hi my name is Lisa and I am currently getting my master's in elementary education.. I am writing a paper about having a child who was born blind.. If anyone is comfortable just telling me a little bit about their experiences of having a blind infant, emotions they went through, how you and your family coped with the situation? Anything would be helpful.. thanks so much

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Re: Parents of Blind infants

Hi im from the philippines. I have 32 weeks premature twins. And they are now 6months. They have Phpv based on the result of the ultrasound. And all doctors said that twin1 had a catarac on her right eye and rop in the left eye stage 3-4 retinal detachment and twin2 got also rop and PhPV and VPhPV. All doctors said that they are blind. They need a surgery as soon as possible even that small chances at least we did everything we can make them seem. But the sad part is that we need support financially support for their surgery. Please help us.. I know as a mother we will do everything we can to have our baby a better life a normal life. Iv been posting like this on the other website seeking for help. Im a mother of a twin girls and verbally abused by her husband. It hurts me how my husband treated me this way. But right now i dont care about my husband all i care is my babies.. Please help us. To contact me:
Facebook: (Desiree Ruiz Canete) or (Desiree Tipdas)

Re: Parents of Blind infants

I have a 6 week old son who has been blind since birth due to Norrie Disease. During a routine check up at 2 weeks our pediatrician asked us to see an opthamologist due to seeing a cloudy reflection in one of my sons eyes. After a crazy week of seeing specialist after specialist we met with a surgeon who informed us that both of our sons retinas were detatched at birth, both eyes have PHPV and cataracts, and that he was blind with no light perception. A vitrectomy was attempted on the better of the two eyes but was unsuccessful. I think that my husband was hit much harder by the news than I was. He saw our son as needing to be fixed but I personally dont believe that he is broken. I immediately began researching everything that I could in order to provide him with a life as close to "normal" and productive as possible. Initially I went through a period where I blamed myself. I felt that there had to have been something that I did wrong while pregnant to cause this. Being told that it was a genetic disease and that I did nothing wrong by dr after dr didnt matter to me. I think that finding out that your child is afflicted by any disease or disorder brings out a lot of emotions, fears, hopes, desires. My husband kept crying and telling me, "there are so many things that I wanted to show my son." My 4 year old (sighted) son took the information in stride and caught right on to verbally cueing Hunter before touching him, making loud noises around him, etc. All he seems to see is a brother who he loves. I have been amazed by peoples reactions while in public. My 4 year old has told everyone that stops to look at the baby that he is blind and I have been asked some pretty rude questions. One woman asked me if I shook him, another if I did drugs while pregnant to cause the blindness, and another pulled her own child away when she found out as if blindness could be passed like the flu. Right now my immediate goal is to keep him developmentally on track and continue learning myself so that I can provide a world to my son in which he isnt disabled, just living with an inconvenience. Hopefully this helped with what you were needing a little.

Re:Parents of Blind infants

I ain't a parent, but I know my parents raised me very much just like a sighted kid, I had very little vision and lost it all around 7 or 8 but I was never treated too much differently then a sighted kid. I rode a tricycle around, drove a go cart, and most of how they taught me was like a sighted person with a few midifications, and it remains that way. they know I can't see, but they don't see it as any excuse, I am held responsible like any sighed person is with a few exceptions with sight. I am not treated very much differently.

Re:Parents of Blind infants

Dear Lisa,
I am an Orthopaedic Surgeon writing a story about how a single mother raises a blind child in a society which is very harsh towards them. Any inputs from you would be greatly appreciated . Thanks.

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