Baby with limited vision in one eye

[Sunflower1235]

Posting on here as a mother really struggling with post partum depression because of a diagnosis my son has received. We found out at 2 months that he has a coloboma of the optic nerve- basically his vision in his right eye is likely to be significantly reduced. We have been to Moorfields and seen consultants who have assured us that “his vision is normal with both eyes open” and that with vision in one eye you can lead a normal life. I’m really struggling to understand how- anyone out there with similar stories? Living with one eye that sees significantly less? Are you able to live normally? Drive? Play sports? His vision in the bad eye is not likely to be corrected by glasses patching etc so it’s an “it is what it is” situation. Would appreciate any insight from people really really struggling with this daily.

Sorry to hear this, op. I don’t have any direct experience, but can fully understand how devastating any news like this is going to be for you, especially at first. I’m sure as your baby develops and starts to do more, this will become less of an issue. Isn’t it the case that if one eye is weaker than the other, then the ‘good’ eye compensates? The DVLA states that you can drive with monocular vision, as long as the good eye meets the required standard.

You’ve said that you’ve been left with the impression that ‘it is what it is’ and there isn’t anything that can be done to improve the sight, but some specialists may have different approaches and suggestions. I never think it hurts to get a 2nd opinion, even from Moorfields. Maybe google official websites for the condition, as I have found sometimes the US approach is more informative and ‘hopeful’ for want of a better word, than the NHS. Also research any organisations which can give advice about babies and children with your ds’s condition, or sight impairment in general. I would have though things like high contrast black and white baby books would be a good start to encourage focussing, with both the weaker and stronger eye. I hope you get some reassurance and that things work out well for you and your ds.

Have you contacted any charities for your son's condition? I'm sure they can advise you.

I was a bit older (think it was around 5 months) when my parents discovered that I had problems with my eyes.

Yes, my son has very poor vision in one eye. The other eye is fine and so he can see normally. The only thing we were advised to avoid was rugby, in case of accident to the good eye. Accidents cannot be fully avoided though! He actually competes in a motor sport now and plays football. Life is normal for him.

I am blind in one eye. Most things I can do as normal. My aim is very bad and sometimes I struggle to see where things are so have to feel but this would be things like threading a needle. I can drive, I just need to be more aware of my blind spot. I'm not confident cycling in the road though as bike mirrors aren't great. I can't use a binocular microscope which i kept having to remind teachers and lecturers about. I couldn't be in the armed forces but I never wanted to anyway. So for the most part I can carry on as normal.

I have only 10% vision in my bad eye and full vision in my good eye. When both eyes are open, My vision is entirely dominated by my good eye. I am now 50. I drive and have lead an entirely normal life. I played netball for the county as a child and rowed for Cambridge University. I need to take slightly more care of my good eye and would not advise daily use of a contact lense, if vision needs correction. I do wear one for occasional use and look after my general eye health. I have never seen the world any diffently to how I see it so am never really aware of any disadvantage. Take the medical advice you are given and bring your child up as you intended. This is not something that needs to change their life experience.

I was under Moorfields from maybe 3/4, primarily because I had a squint, but vision in both eyes has always needed glasses.

One eye didn’t form as it should have, which can never be corrected, and although I can see out of that eye, when both eyes are open, it’s like one side of my vision field is in a lesser light. It’s hard to explain, but it hasn’t stopped me doing anything, except maybe having laser surgery on my stronger eye, as I don’t want to risk that eye at all.

Your child will be receiving the best care possible, I hope you can have confidence that he’ll live a good life. The brain is an amazing thing, and we adapt to what we’re dealt.

Thank you all for your replies! I didn’t think anyone would even respond so I am truely grateful. @Blasting that is really reassuring I was told it may affect things like depth perception but not really as he has been born with it and will adapt. Did you wear sports goggles for netball? And was this something you were born with if you don’t mind me asking?

A friend has vision in only one eye. I know only because he told me, there’s no obvious effect on his every day life. He is a keen birder, and regularly takes long trips into wild areas of S America, SE Asia etc.

@Threecraws thank yoh for sharing that. Glad to hear it hasn’t impacted too much of your life. The consultant also said people won’t be able to tell someone who has no vision in one eye- has that been the case for you as well?

Sorry to hear this.
My uncle when very young, think teen, was involved in a motor accident and he lost all vision in one eye. It is worse in way, as he hadn´t grown up with this I think, and had to adapt. He is a lawyer and was a judo champion. It didn´t affect him in the sense that he didn´t achieve his potential. We all would forget he didn´t have vision in one eye, because said eye look totally normal.

@Tubbyinthehottub thank you for replying ! Wow motor sports lol that’s really impressive has he had this since birth?

My eye veers off to the side so it does look a bit different but most people don't realise that I'm blind in it until i tell them and they still forget and don't realise i don't always see them if they approach in that side.

@maudelovesharold thank you! The consultant has said it doesn’t qualify as a visual impairment because his other eye is normal and fine they’ve said the only thing he will need to do is some patching maybe and sports goggles for when he’s older

@GinToBegin thank you! You’re right the brain is amazing at adapting. I need to have more faith he’ll be ok!

@Katiesaidthat thabks so much that’s really reassuring/ does the eye look the same as the other eye? And for sure that would have been harder as he had to adapt to monocular vision!

My DM is blind in one eye from birth. You would never know.

She was rubbish at sports but TBH she was never interested so it wasn't a hardship to her.

The only time anyone notices is when she sees a new doctor and they get fascinated.

My DH had such bad eyesight as a kid that they patched his bad eye, so he has very very limited vision in it. His brain essentially just uses his good eye.

Zero impact on his quality of life. Drives etc. Not an issue at all.

I'm sure your son will be absolutely fine.

My dad only had vision in one eye, it never stopped him in life. He flew in Lancaster planes in the second world war as a navigator and later trained as an architect. He drove, ran marathons and enjoyed hill walking. Having vision only in one eye never seemed to be a hindrance at all.

i surprising number of people have poor vision in one eye and they do really well visually.

He will have less good depth perception and he’ll not be able to be an HGV driver or a policeman or a pilot for example. But yes, he’ll learn to drive and lead a completely normal life.

He does need to be slightly careful with the other eye though.

@maudelovesharold unfortunately it’s a feral developmental condition which causes the eye part of the neural tube to not close properly (which is what creates the gap). You’d need to replace the eyeball and possibly the optic tract too, in order to solve the issue.

I have very limited vision in one eye. Like @Blasting my vision is completely dominated by my good eye, my brain only uses my bad eye if my good eye is covered. My life is almost completely normal and I am able to drive. However I can not play small ball sports like tennis and I have been scared of stairs with gaps in them since I was a small child (as a child I thought I would fall through the gaps due to depth perception). My eyes track together so no one can tell.

My husband has very poor vision in one eye but can see totally normally - drives plays sports etc. It’s from an injury that happened as a child so his other eye and brain have adapted to totally compensate for the damage and it’s only if he shuts his good eye he can tell. Your child will have even better compensation with it being from birth.

Also I have never worn sports goggles to play netball/basketball.

There are certainly things that are more difficult, I’m a good driver, but have always hated parking between cars in a car park - I always feel my weak eye struggles to gauge the gap. It’s not impossible, but I always park in the quiet end to make my life easier.

On the other hand, my depth perception is very good (though I was very slow to get the hang of catching a ball, and can no more play tennis than fly) and I can tell instantly whether an item is central (like a mirror on a wall) or off level.

Honestly, I’m sure he’ll find his way and work with what he’s got. Plus he’ll have you in his corner, never underestimate the power of that.

When this happens from birth or in utero, the remaining functioning eye compensates for the one with limited vision. This also happens if both eyes have limited function. It's not so much to do with the physical parts of your eye, but how the brain processes visual information. Your own field of vision is not actually what your eyes are picking up – it's your brain filling a lot of blank space. If you could see what your eyes were actually seeing, it would be black stripes alternating with strips of visual information.

My sister was born with very limited functioning parts of both her eyes and particularly in one. She leads 100% a normal life. She is also now an optician.

He can't register as partially sighted because he has one good eye. But he's classed as visually impaired in the sense that his visual impairment can't be corrected by glasses.