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Baby with limited vision in one eye

109 replies

Sunflower1235 · 06/11/2024 09:10

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.

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Sunflower1235 · 06/11/2024 14:37

@DustyMaiden oh wow that’s good to hear. Is it physically obvious?

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DustyMaiden · 06/11/2024 14:01

My DGD has no optic nerve on one side, so no sight. It has no noticeable effect on her. She’s 16 now.

Sunflower1235 · 06/11/2024 14:01

@InfoSecInTheCity thank you so much for your reply! So reassuring to hear you are able to do all the normal things despite that. You mentioned loads of ophthalmology apps when younger did you have glasses since being a baby? I’ve been told glasses can’t normally fix the vision in the eye with the optic nerve colonoma as it’s the structure of the eye that is wrong. So wonder if you had heard different although I know every case varies! Really appreciate you sharing the photo as well :) you have beautiful eyes!

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Sunflower1235 · 06/11/2024 13:58

@KnottyKnitting thank you for sharing that. Does he have to protect his eyes when playing sports etc?

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Onlyvisiting · 06/11/2024 13:57

Sunflower1235 · 06/11/2024 09:10

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.

Yes, I have very limited (extremely blurred, can't read the biggest letter on the chart) vision in one eye and have all my life.
I don't give it the slightest thought in everyday life, it gives me marginally less peripheral vision on that side but as I can still see movement it hasn't effected my life in any way. Main thing is I am aware that I don't have a spare and to take care of the eye I have!

Sunflower1235 · 06/11/2024 13:56

@MacaroniSaysShetlandPony thank you so much !! That’s really reassuring amazing you can ski with no peripheral vision on that side!!! I will def take that into account regarding the ball sports thing I want my son to be aware he needs to be a little more careful but also confident and not frightened to love his life!

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Sunflower1235 · 06/11/2024 13:53

@Milkmani8 thank you for that you’re right I really need to not overthink it! The images I’ve created in my head are a nightmare I’ve almost written off his future and it’s so wrong! Let hormones get the best of me! @AnnaMagnani totally different generation! They were so resilient and just got on with things!

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Dramatic · 06/11/2024 13:43

MacaroniSaysShetlandPony · 06/11/2024 11:33

I am blind in my left eye and extremely myopic in my right eye and it has never held me back. I can drive in the uk because my blind side is in my left but I’m not allowed to drive in the US or Europe because it’s more dangerous.

I am, as previous posters have mentioned, rubbish at fast moving, ball catching/hitting sports but I have still participated in sports to a high level which don’t have fast moving objects (think rowing, skiing, swimming).

One piece of advice I’d give to my parents, if I could: tell people that your DC can’t catch things thrown to them and can’t hit a ball. I was so frustrated at school when I couldn’t do this and no one told me it was because I couldn’t, not because I was rubbish at sport. You sound like you’ll be a brilliant advocate for your DC - well done!

I read a great deal and I’ve got brilliant visual recollection so I can still see vivid images in my head from childhood (holiday destinations, road trips I’ve been on, places I’ve been before) and - oddly - I’m much better at that than my fully sighted siblings. Absolutely no impact on my reading from my sight impairment.

It’s important to know that your DC will never know the difference and this is easier to deal with than if you are born fully sighted but lose sight in one eye in later life. I can’t see in 3D (obvious when you think about it because I have no binocular vision) but I just avoid 3D films. Same is true of virtual reality headsets.

I promise that your DC can and will lead a normal life. It’s not a hindrance when you can clearly articulate what you can do (and what you can’t). Trust me! I’m in my 50s and it’s never held me back - I live life to the full. I worry about losing my sight in my ‘good’ eye but not to the point where it stops me - I refuse to live my life worrying about injury around every corner - but I know I have to get myself to ophthalmology A&E within 24 hours if anything seems off with my ‘good’ eye because it’s high risk.

You've got this OP! Your DC will astonish you with their abilities, for sure!

You are still allowed to drive in the US or Europe even if you're blind in your left eye

Dramatic · 06/11/2024 13:31

I know a few people with very low or no vision in one eye, they all lead perfectly normal lives. It is usually a case of being all they've ever known. People who are blind in one eye aren't considered partially sighted so he won't have any problems driving or anything like that

Ellerby83 · 06/11/2024 13:26

Gordon Brown lost the sight in one eye playing rugby as a teenager. It didn't hold him back.

InfoSecInTheCity · 06/11/2024 13:26

And here you go, cropped to try to avoid identification but I don't think my eyes look any different because of the colobomas.

Baby with limited vision in one eye
InfoSecInTheCity · 06/11/2024 13:19

I have this exact thing.

Coloboma of the optic disc infringing on the optic nerve in my right eye, coloboma of the retina in my left eye.

Right eye has very poor visual acuity and the coloboma led to fluid building and receding behind my macular causing a serous macular detachment in my 30s.

So what does this mean in practice:

  • lots of opthamology appts throughout my childhood, and standard opticians in specsaver and the like tend to get a bit panicky and refer me back to the consultants whenever they can.
  • had eye surgery in my 30s to reattach my retina
  • not allowed to wear contact lenses because no one will risk me getting an infection in my good eye
  • absolutely no impact whatsoever on day to day life. I work, use computers, drive... my good eye makes up for the bad one.

Actually there is a day to day impact, despite the fact I've been like this forever I still bang into stuff on my right hand side frequently, walk into door frames and stuff because my peripheral vision is pants. Or it could just be because I'm clumsy and generally lacking in gracefulness 😂

SingingSands · 06/11/2024 12:34

My cousin lost an eye when he was 10.

He recovered, had a glass eye fitted and continued with a normal childhood. He travelled the world after school then went to university as a mature student, has a fantastic job earning a 6-figure salary, drives, rides motorbikes, is extremely active and lives a normal life as a dad of three.

Don't let your mind spiral into doom!

KnottyKnitting · 06/11/2024 12:24

My DH has very poor vision in one eye and has since he was tiny ( he was also under Moorfields) . The prescription he has in the bad eye does very little but he really doesn't notice it as the good eye compensates for it. It has never stopped him doing anything.

FlatStanley50 · 06/11/2024 12:11

Like others I have a lazy right eye, when both eyes are open my brain doesn't use it. When my left eye is shut my vision is awful with moving black splodges, can't read the eye charts etc. Have to explain it every time when I go to the optician. My left eye is very short sighted but corrected with glasses. I live a perfectly normal life. Can drive, am OK but not great at tennis and other ball sports. Have never worn sports goggles but was never allowed to play squash for fear of injuring the good eye. Can't park very well/ am terrible at things like snooker. Cannot see 3D which is slightly annoying. But overall it is not much of a hardship. I had surgery and patching as a child but it did not work and I HATED the patching. It was both uncomfortable and I could not see. So I'd investigate success rates on that before putting your son through it.

Elphame · 06/11/2024 11:46

Sunflower1235 · 06/11/2024 09:10

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.

I have a poorly treated strabismus with the result that although I have full vision in both eyes, I have full suppression of vision on my right side unless I close my left eye. Over the years though I have developed a limited ability to switch between eyes at will.

Essentially, I can only use one eye at a time though

It has a few minor disadvantages, the main one is the lack of any depth perception which means I am completely hopeless at any sports requiring hand/eye coordination.

I wish I had known this as a child as no one told me that was why I was terrible at racket sports.I thought it was just me failing.

I've been driving since 17 with no problems although I am a little more cautious than most when pulling out. You learn adaptive strategies ( like putting drinks in the middle of tables rather than trying to guess where the edge is!) very easily.

Although you must be devastated, your child will be absolutely fine. As someone else said, they will have never known anything different.

xILikeJamx · 06/11/2024 11:35

It's a very different situation, but I'm early 40s. Always had short sight in my left eye and got glasses aged 8, right eye generally fine. Never really wore the glasses until I got to mid 30s and couldn't read computer screen/phones anymore and since then have worn them constantly.

About 6 months ago I noticed flickering in my right eye and eventually vision went all blurry in it. Can't read anything with it and it now and feels like there's a 5p coin stuck on my glasses with a grey area right in the middle of my vision. Turns out it's CSR and should go away by itself in time.

My point is though it's not affected me at all really. Can still legally drive even with just my 'bad' left eye working properly and have got the font enlarged a bit on my computer / phone to carry on working as normal. A young child will no doubt be able to adapt even more so.

MacaroniSaysShetlandPony · 06/11/2024 11:33

I am blind in my left eye and extremely myopic in my right eye and it has never held me back. I can drive in the uk because my blind side is in my left but I’m not allowed to drive in the US or Europe because it’s more dangerous.

I am, as previous posters have mentioned, rubbish at fast moving, ball catching/hitting sports but I have still participated in sports to a high level which don’t have fast moving objects (think rowing, skiing, swimming).

One piece of advice I’d give to my parents, if I could: tell people that your DC can’t catch things thrown to them and can’t hit a ball. I was so frustrated at school when I couldn’t do this and no one told me it was because I couldn’t, not because I was rubbish at sport. You sound like you’ll be a brilliant advocate for your DC - well done!

I read a great deal and I’ve got brilliant visual recollection so I can still see vivid images in my head from childhood (holiday destinations, road trips I’ve been on, places I’ve been before) and - oddly - I’m much better at that than my fully sighted siblings. Absolutely no impact on my reading from my sight impairment.

It’s important to know that your DC will never know the difference and this is easier to deal with than if you are born fully sighted but lose sight in one eye in later life. I can’t see in 3D (obvious when you think about it because I have no binocular vision) but I just avoid 3D films. Same is true of virtual reality headsets.

I promise that your DC can and will lead a normal life. It’s not a hindrance when you can clearly articulate what you can do (and what you can’t). Trust me! I’m in my 50s and it’s never held me back - I live life to the full. I worry about losing my sight in my ‘good’ eye but not to the point where it stops me - I refuse to live my life worrying about injury around every corner - but I know I have to get myself to ophthalmology A&E within 24 hours if anything seems off with my ‘good’ eye because it’s high risk.

You've got this OP! Your DC will astonish you with their abilities, for sure!

AnnaMagnani · 06/11/2024 11:31

@Sunflower1235 it's my mum with the problem.

I don't think she even realises she's blind in the eye as it's all she's ever known.

Like @lizzyBennet08 it's a lazy eye and the vision never developed.

Her mum certainly never lost sleep over it but that's that generation for you.

Milkmani8 · 06/11/2024 11:31

@Sunflower1235 I had a severe stigmatism in my eye that I was born with. My eye was turned inwards and was gradually corrected with glasses and patching until the age of around 5. My eyes look normal and you wouldn’t be able to tell, sometimes I can have a slight lazy eye in photos but in person it’s not visible. But I can only see out of one and the other would be extremely blurry if I were to shut my good eye and try and look out of the bad one and after two mins the vision goes dark. I can drive no problem but do feel like I have to do a lot more mirror checks when on motorways. It has never impacted my day to day life or limited me from doing anything. I can imagine this is adding extra stress for you during an already stressful time. I’ve been there with postnatal depression and anxiety, please don’t let this add to it. Let the consultants reassure you that all will be okay. Take care of yourself and enjoy your baby boy 🥰

Sunflower1235 · 06/11/2024 11:31

@IbizaToTheNorfolkBroads thanks for the message! Ah sorry for your brother! Yea the consultant said it’s not classed as a visual impairment because his other eye is fine and with both eyes open his vision is normal! How is ur brother getting on?

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Gemstonebeach · 06/11/2024 11:26

@Sunflower1235 its very interesting as I have a colleague who lost vision in one of his eyes later in life and he would include himself in the disabled community now. Whereas for me being born with it, I would never consider myself disabled as it really has very little impact on my daily life apart from not being able to play tennis!

lizzyBennet08 · 06/11/2024 11:24

I had a missed lazy eye as a child so the vision in one of my eyes just stopped sending messages to my brain so vision is.very very limited in that eye. My other eye is perfect and it never really bothered me until now 47 and I need reading glasses.
I was told one to be careful of my good eye and make sure to wear safety glasses if welding! But that's been about it.

IbizaToTheNorfolkBroads · 06/11/2024 11:24

I'm wondering if the RNIB may be helpful ? I hade a friend who works for their education team. She works very closely with the children, family and schools of vision impaired children, from an early age.

As an aside, my brother (50s) has recently lost the vision in one eye and is allowed to drive.

Sunflower1235 · 06/11/2024 11:23

@spiderlight yhank you! Was she born that way? Is it obvious from the way the eye looks?

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