Louise Brennan (paediatric orthoptist): A vision impairment is a diagnosed condition of the eye or the visual system that impacts on access to learning.
Sue Silveira (orthoptist and Research Fellow, Royal Institute for Deaf and Blind Children): There are multiple reasons why children can have a vision impairment, and it gets back to which part of the visual system has been affected. So it can range from the eye and the structures inside the eye being affected, to somewhere through the visual pathway which connects the eye through to the brain. It can even be within the brain, which is an area called the visual cortex which is at the back of the brain where the seeing occurs.
Louise: For example a problem with the eye itself may be cataracts. A baby can be born with cataracts. Or they could be born with, say, a coloboma, which is a cleft of the eye where the eye hasn’t formed properly. And, the other problem, say, with the visual pathways, maybe a baby was born with very small optic nerves. And maybe messages aren’t getting to the vision part of the brain. Sometimes that’s called cortical vision impairment.
Sue: We think about 40 to 50% of the brain uses visual information. So if there’s anything wrong with the eye receiving the image, passing it on to the brain, or the brain using it, that can result in a vision impairment in a child.
Fatima (mother of 2 children, 1 with vision impairment): My daughter Simra is four years old and she is vision impaired. Simra has Leber’s congenital amaurosis. It’s also known as LCA for short. She’s completely blind, so she has no vision in either eye.
Leah (mother of 3 children, 1 with vision impairment): This is Ivy; she’s almost 12 months old. In three days, she’ll be 12 months old. She was diagnosed with micropthalmia at eight weeks of age. Microphthalmia is a condition that affects the eyes. Micro means small, opthalmia meaning eyes. So she has very small eyes, and she had cataracts in both her eyes, and they were removed at eight weeks.
Ivy can see roughly about 30 to 50 centimetres in front of her. She wears contacts in both of her eyes. And occasionally, when we can get her to keep them on, she wears glasses as well.
Sue: The most common way a vision impairment will be diagnosed is by someone called an ophthalmologist who is an eye doctor. And that’s someone who has qualified as a normal doctor and has gone on and had specialised training after that. It usually begins with a parent, or parents or a family member having a suspicion that the child’s not seeing as they should be for their age.
Fatima: When Simra was a baby, she didn’t actually make direct contact with anyone – myself, my husband, anyone that took her. She didn’t follow anything with her eye, there was no tracking. Initially, for a week or so I thought, maybe it’s something that will come. Because I had read about how children’s vision is sometimes delayed. But then I had friends who had babies and their children were kind of more like this [opens eyes really wide], kind of posing for the camera the day they were born and I was kind of like: ’OK, there’s something definitely not right.’
Louise: One of the most important milestones visually is at about 6-8 weeks, we’re expecting a baby to be looking at their parents’ eyes, to be able to slowly follow faces, and starting to smile. So this is probably one of the big red flags for parents. If they are seeing their baby is maybe having trouble doing that, that’s one of the big ones that they will go to the GP with, a really big concern. Another one might be that the eyes actually look abnormal. They might look very large or very small, have an unusual appearance, they might be teary, be very watery, they might be very sensitive to light as well, so those are the sort of things to look for.
Leah: My husband and I did notice that her eyes were very, very small, but every child is different, so you sort of go on your merry way, and you’re in your little bubble of happiness with this perfect newborn baby. When she was about two weeks old I really started to get quite concerned. She wasn’t tracking. She was sleeping a lot – so, in a 24- hour period, she was probably asleep for 20 hours out of the 24. Not always in a sound sleep, in quite a restless sleep, and looking back I think she just didn’t know the difference between awake or asleep. She had no reason to open her eyes. She couldn’t see anything, her cataracts were really quite bad.
Louise: Usually once someone thinks something’s not quite right, they’ll actually refer to a paediatric ophthalmologist, which is a children’s eye doctor. Then usually from there, there’s a whole range of tests that are carried out.
Fatima: When we saw the ophthalmologist they did a whole range of tests on her eyes, trying to figure out what kind of vision she had. Then they referred us for an exam called an ERG, and they basically put little magnetic things all around her face and head to measure her vision. And that’s when they detected that her retina is not connecting to her brain, and vice versa. When we left the ophthalmologist and we were driving home, neither of us said a word to each other. We actually just drove home in silence. I came home and I saw my mum and I started crying and I think I went into my room. I didn’t even know where Simra was at the time, I just went into my room and I was in there for about the next four hours. I guess the one thing I did think of at the time was that she’s never had vision, so she doesn’t actually know that she’s lost anything. She’s learning life that particular way, as she was born. As far as she’s concerned, we’re like her; I’m like her. And she’s happy: she smiles, she laughs, she chats, she does lots of things that bring a smile to my face. We’ve come very far from where we were three-and-a-half years ago.