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.

@TigerRag thanks! Consultant has said that’s not the case because to be visually impaired it means you better eye cannot be corrected with spectacles so he wouldn’t qualify

@AnnaMagnani thank yoh for sharing that. How did you deal with that as a mother? I’m really struggling and feel very guilty like it’s something I did. So glad to hear it hasn’t affected her- has she had to have surgery on the bad eye to straighten muscles etc?

@BarbaraHoward thank you for that really reassuring! I guess it is the same as having a lazy eye that is never corrected so the brain just uses the strong one

@Namaqua wow that’s so impressive! I’m here worried about if he’ll ever be able to read properly let alone fly a plane! @theeyeofdoe yes ur right I guess a lot of people deal with vision that is poorer in one eye and they just crack on!

I have a friend in her 70s lost use of an eye following a stroke. That caused her to lose confidence in going anywhere, which she worked on, and after a year she simply doesn't let it stop her doing anything she did before. Other than be careful with wearing sunglasses / hat in strong light, getting eyes checked at opticians regularly etc.
So I would say it doesn't have to restrict you at all. Your son has the advantage he won't know anything different so will not have the lack of confidence in going places.

That's exactly what DH has - who knew it was possible to have two lazy eyes?!

@Gemstonebeach @Favour237 thanks both that’s super reassuring. I just want him to have a normal life and reach his full potential

@Didimum wow that’s so interesting! Good on your sister that’s amazing especially as it effects both her eyes

My friend is totally blind in one eye. I've known her for over thirty years and I only found out about a year ago when she mentioned it in passing. She lives a totally normal, active life.

Sorry you've had to deal with this shock - it must be very hard.

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

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.

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.

@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!

@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?

@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 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.

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!

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.

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.

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.

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.

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!

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 😂

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

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