The challenges of raising a sight impaired

adorable baby basket child
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Shortly after I bought the twins home I went into Post natal depression and then  we noticed something was wrong with twin 2’s eyes. The kept rolling around and she couldn’t focus. I started seeing our regular gp and told her that there was something wrong with her eyes and was told they were normal at this stage she was only 3 weeks old. When there Immunisation’s came around I told the gp again that here eyes weren’t right and again I was told there was nothing wrong with them. So I left it for another few months and then she developed this rash that looked like measles so I took her back to the same gp and she couldn’t rule out measles as she was too young for the vaccine so we were sent to the local hospital and they saw her and then the doctor bought a paediatric doctor in and they said it was a viral rash. My Mum and I both said about her funny eye movements and we were both told they are normal. So when the girls were about 4 months of age I met up with my mum friends and one of the mother’s asked if I was doing anything about her eyes and I replied I have been trying and another mother told me about a new medical centre near where we live. So I took her up there with her twin sister and left my older child at home with my sister on a Sunday afternoon. I walked and told the doctor that her eyes were doing funny things and I noticed that she was getting frustrated with not being able too focus and he had a looked and agreed with me and so her rang the children’s hospital and they agreed  that it needed looking into. So he done a referral up and we got seen within 10 days. She was nearly 5months old. So the decided to do a mri in august to check all the connections were connected and then we waited for the results in September and all was normal and then they decided to do another test called evp where they put all electrodes on her head and under her eyes in January this year. I got a call from Vision Australia in early January to bring her out to them so they could asses her. So I took her out there and she had only just started crawling and the room had a trampoline in it and she bumped her head on it 3 times and she could only track the big balls.Our next appointment at the hospital was in February this year and the test results weren’t back and they just said to bring her back in 3 to 4 months time like it was nothing. So my psychologist and I drafted a letter of complaint as in 10 months I still didn’t have a diagnosis. Twins are now 1 years old.  I took her back to Vision Australia in March and they did there own testing and the next day I had a 5 page report and a diagnosis of mild optic nerve hyperplasia there is no treatment currently for the optic nerve hyperplasia and she has also got a Nystagmus that blurs her vision. the percentage of vision she has is 6/60 vision so is classed as legally blind. Knowing there isn’t any treatment for this condition hurts like hell. We are currently getting braille kits every 3 or so weeks from Vision Australia.  So Always trust you gut instincts. She is a very happy child and doesn’t let this disability keep her down. She is very strong willed little girl and she keeps me going on my down days. We have started going to a special playgroup on a Friday for the kids that are blind and we can also take her siblings too. No cost to us apart from a train fare.

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