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.

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

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

@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!

@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!

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!

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

@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!

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

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

I have quite reduced sight in one eye and no one (including me) even realised until I got some grit in my good eye aged 10 and suddenly could only see fuzzy blobs. It's correctable with glasses so not as severe as your DC but has had next to no impact and I rarely wear my glasses and rely on my good eye. The main problems are mild depth perception issues and getting annoyed when someone tall stands or sits in front of my good eye at the theatre or a concert and I don't have my glasses!

My daughter has bilateral retinal coloboma. It was discovered at 15 months after she started squinting badly. Her left eye has no useful vision, the coloboma covers the macular (the bit that sees detail), and her right eye also has a coloboma which roughly covers 50% of her retina, but the macular is fortunately not involved.
She also is severely short sighted and has nystagmus (her eye moves back and forth very quickly as she tries to focus).
She had glasses at 18 months which helped with the myopia in her right eye. We gave her as much stimulation as we could from when she was diagnosed.
She learnt very quickly to memorise writing as it was too hard to keep looking up at the board for the individual letters. She had input from the sensory team in school, and by year 4, needed some 1-1 time.
She is now a school business manager. It has not, and still isn't easy, and she compresses her hours to have a day a week off to rest her eye.
Her dad and I are phenomenally proud of her, as she has overcome so much and pushed herself to achieve.
Please don't think this is just a boast; we were told at diagnosis that she may never read or write. This is told to show you that your child can flourish, even with limited vision.
Feel free to PM me and look at a charity called LOOK. We had a lot of help from them

I like many of the other posters can drive and do lots of other things with only 1 functional eye.

Where I mainly struggle is depth perception on stairs, uneven ground etc. I had support when I was child to help me learn, as a toddler I thought all colour changes were steps.

Sorry you've had this news, OP, it is so distressing not to know how your child's health will work out.
I have sight only in one eye and know other people who have, and the experience is different for all of us.
I can't drive but I can get around independently on public transport and love walking. I've always worked and had some interesting jobs. I'm not good at sports that involve catching a ball but fine at throwing one; quite good at darts. My depth perception is not great but I manage.
Other people on the thread have fewer limitations and that could well be the case with your DS.
Even with the limitations I have, I'm sure that my life is just as happy as it would have been with 20/20 vision! Enjoy him.

@lovepets thank you for the reply! Wondering why you were told she wouldn’t be able to read or write? Was that due to coloboma being in both eyes? Or the short sightedness. Lucky it didn’t hit the macular on the other side!!

Please tell them not to worry. They will lead a totally normal life! I have very limited vision in one eye and perfect vision in the other. I'm 49 and people are shocked when I tell them. When both my eyes are open I feel like I see perfectly, my brain must ignore the dodgy side! It has honestly not affected me being able to do anything at all.

@chattygirlneedsacuppa thanks so much! Have you always been like that? Or is it corrected with glasses

I've lost a chunk of vision in one eye following brain surgery (not a majority share TBF but noticeable). You adjust and your baby won't know any differently.

My grandad lost an eye in an industrial accident- and he got on with his life just fine once recovered. Went back to work in an adjusted role, continued to win prizes in his many hobbies and lived to a ripe old age.

Yes, it was from birth. Her eyes both look totally normal. I have no idea which one is blind.

My uncle has always had mono vision thanks to a lazy eye that wasn't picked up. He didn't know until his teens that other people saw things differently, as there weren't many checks back then. Aside from the magic eye picture craze in the 90's, he has never missed out.

He could drive heavy vehicles for work, just had to retake the test every 2 or 3 years (can't remembering which) to prove his good eye was still doing a good enough job. He is retired now, but still driving a car.

There was a segment on sight loss morning live on BBC today, that you might find helpful. The man who always had vision issues was much more comfortable with things than the lady who was an adult when she had eye issues due to diabetes. He is now a doctor, so it hasn't held him back.

@SprigatitoYouAndIKnow that’s so interesting I will check that out. Thank you reassuring your uncle could drive heavy vehicles as well!

Ah shucks, thank you!

I did not have glasses till I was in junior years of primary school so around 7ish I think.

The opthamology appts were mainly because opticians panicked and referred me. Over my childhood I had people say they thought I had brain tumours, Morning Glory Syndrome, scarring from mites..... all sorts, each time they sent a letter to the hospital, hospital called me in, I had MRIs, more visual field tests than I can remember, photos of my optic disc, flouroscene injections, tests for muscle weakness, speed of processing, you name it they tested for it, and each time they discovered I had a colaboma of my Optic Disc.

Now I go for my yearly eye test armed with 20 years of letters and diagnostic results and if they look like they're about to hit the big red button I talk them down.

"There was a segment on sight loss morning live on BBC today, that you might find helpful. The man who always had vision issues was much more comfortable with things than the lady who was an adult when she had eye issues due to diabetes. He is now a doctor, so it hasn't held him back."

I was born with my sight impairment and had some issues in my teens and late 20s. I did get back some of the vision I lost later on in life (I woke up with a migraine and kept walking into things as I couldn't see at the sides) but it has been a struggle. I run with a guide and warn them every time (and apologise) if I elbow them because I can't see them whichever side they run on.

I had a lazy eye as a child, wasn’t picked up in time and so the corrective measures didn’t work. My left eye doesn’t focus at all so is no use for reading and I wouldn’t pass a driving test with that eye but the other one is fine. It has literally never bothered me as it’s all I’ve ever known. Only thing I’d say is it makes me very conscious about protecting the other eye.

@Chocolatecrispsandwine thank you! Yes for sure when doing sports it’s needed. Did you take any other measures? Or just for sports

I’ve taught children with the same diagnosis, or vision in one eye.
One main thing was protective glasses or googles in sport to protect the good eye.
Their depth perception was somewhat impaired, but their brains appeared to compensate well with other reference points. We did take the opportunity to(finally) paint the edge of outdoor steps to aid them, but it was more precautionary than an obvious need/