Concerns about outward facing eye/exotropia in baby

[HopefulMother1]

Hi all out there. Really need some reassurance as going out my mind. My baby was born with an outward facing eye (exotropia). At first I wasn't too worried as I read it can be corrected with treatment if it doesn't resolve itself. However, more reading resulted in me learning that infantile exotropia (as he has had it since birth) is commonly associated with neurological and developmental issues. I am literally besides myself at the thought. Please, please someone out there tell me that your child had the same and was fine in the end. My baby is 3 weeks old, and though his eyes sometimes straighten, most of the time the right eye is outward facing. Please reassure me someone, or tell me your experience.

I debated replying to this because I guess it’s exactly what you don’t want to hear but I just wanted to say that my son was also born with an eye condition (not the exact same but similar) and just before his second birthday he was diagnosed with a neurological condition, which shocked even the neurologist who seen him for the first time at 6 month and was sure he didn’t have one!!
I just wanted to say that my son is 4 now and you would literally never know. He is the most amazing little boy and it doesn’t hold him back at all. He hit some gross motor milestones late but he’s totally caught up. There is a chance that symptoms will worsen as he gets older but there is also a chance they won’t and we just enjoy him exactly as he is. He also had surgery this year to have his eye condition resolved.
Optomolgy should refer you to neurology as standard

Hi @Meand2Ls , thanks for replying. Oh wow. Well I am glad your son is doing well. Can I ask whether the eye condition went away during the first 4 months? You say it is not obvious, so does it only become apparent in certain situations or environments? How has it affected physical and mental development and social skills? Apologies for all the questions. Also were you immediately referred to neurology or was that only after a certain amount of time? Say at the 6 month mark.

Also @Meand2Ls , was the eye condition constant and consistent with your son? Sometimes my sons eyes align but only if focused on something more than a metre away, sometimes the left eye drifts outwards (though nowhere near as often).

Yes, his eye condition was constant and consistent and would have never improved itself which is why we chose to have it surgically improved. His eye condition was always obvious before he had his surgery, I mean the neurological condition he has been diagnosed with is not obvious. It had no effect on his social development or mental development. In terms of his physical he did have a gross motor delay. Never crawled or bum shuffled, walked around 19month, didn’t climb stairs until after 2 but he has mostly caught up now and since his eye surgery 6 months ago he’s had huge strides in his gross motor confidence. In terms of what his future holds his neurological condition can cause tumours in the nerves and the eyes are one of the most common places for these to grow so he has his eyes checked 4 times a year and sees neurology once a year as well. It can also affect blood pressure which he’ll have regularly monitoring on. But day to day he is literally just a normal 4 year old with tons of friends who can do everything his friends can

Sorry realised I missed a question. So his eye condition was noticed at 6 weeks, we were seen by optomology at the hospital around 10 weeks and they put a referral into neurology that day and the appointment was when he was around 6 months old

Thank you for answering my questions @Meand2Ls . I didn't think a referral to neurology was standard, so thank you for the head's up so I can be sure to ask for such a referral if it is not offered. I am glad that the eye condition is not impacting your son's quality of life, and truly hope and pray it remains so . My son's eyes seem to align at times, both ever so slightly deviate outwards sometimes, or one eye roams (usually the right). I am praying it is just ocular immaturity which I was told by a health visitor is common, but until I know, I am living in hell fearing the worst.

Thank you for answering my questions @Meand2Ls . I didn't think a referral to neurology was standard, so thank you for the head's up so I can be sure to ask for such a referral if it is not offered. I am glad that the eye condition is not impacting your son's quality of life, and truly hope and pray it remains so . My son's eyes seem to align at times, both ever so slightly deviate outwards sometimes, or one eye roams (usually the right). I am praying it is just ocular immaturity which I was told by a health visitor is common, but until I know, I am living in hell fearing the worst.

Just an update from me and hoping to compare it with your experience @Meand2Ls . I made an appointment today with the GP to get a referral to opthalmology. She observed his two eyes wander at different times, and dismissed it as ocular immaturity. She reluctantly agreed to refer me though said she has never done so so young (my baby is a couple days of 4 weeks), and said the most they will do at 8 weeks or so is observe. Is this your experience? It sounds like you had more of an early assessment, no?

We didn’t notice his at birth, it was picked up at his 6 week check and the referral was put in then and ophthalmology seem him about 10 weeks. His first appointment lasted about 1hr. He was first seen by a nurse who asked loads of family health questions and then got him to follow different lights etc and then put drop in his eyes which took 30m to work after those drop worked he was taken in to see the doctor. He tried to get a look at the back of his eyes but really hard to do with young babies so he did get pinned down my multiple people and the machine put on his face to be able to look but it was quick and he was over it quickly even if I wasn’t 😅

Thank you for providing such details. It really is us parents suffering the process 😅Goodness, I wish I hadn't noticed anything so early. I am not enjoying my baby as a result, and it has affected my milk. It is also why he has started to favour my hubby over me I think. Mum is stressful! Thank you for conversing here on this matter. Besides my husband who I don't want to burden, I have no one to talk about this with. You have helped immensely.

Timing wise isn’t idea because you are in the absolute thick of postpartum hormones as well. I know it’s hard but these mini humans are always causing you trouble and worry. I’ve had another child since and she has 0 medical issues and still causes me worry in her own way but honestly motherhood is my favourite thing in the whole world. My children are my best friends and so so much fun to hang out with. I’d do anything to have some newborn snuggles with them as well. I breastfed both my past a year and supply can go up and down loads in those first few weeks so put on a show and just snuggle and feed all day and it’ll soon go up. Whether they have an eye condition, neurological condition or (and absolutely most likely) no issues at all you will love them all the same

Thanks @Meand2Ls . I have two older sons and know exactly what you mean. They are so much fun! I had concerns with my first of autism when he was late to talk, etc - that one I completely worked up more than ever in my mind, and he isn't autistic turns out - then my second came along and the journey with him was so easy. This third child has reminded me of the struggles with my first. I pray that this turns out to be nothing more than the development of my baby's eyes and I can relax post the 3/4 month "deadline" for this to resolve itself, because it does just that.

My son who is now 2yrs 2months.. had extropia. I knew from about 2-3months that something wasnt right with his eyes. We were referred to ophthalmology, also had an mri just to rule any issue out.. as he’s got older his eyes have corrected itself. They do still drift out if he’s a little tired but apparently its just one of those things. We do have developmental delay.. he isn’t talking or walking. But theres progress. Hes pulling to stand and knows everything we say. I was dismissed by loads of people in the early weeks when I first noticed (mothers instinct i guess) but it became very obvious as he got bigger. But just know that they can correct themselves.. even the doctors were surprised when they had seen him about 6 months ago. We are now just under review with own paed doctor and discharged from ophthalmology.

Thank you @Thisishard25 for sharing your experience. I was in A&E recently with my baby for other reasons, and the doctor dismissed my concerns once again. I guess I'll just have to wait and see how all turns out. Hopefully it resolves itself as it has for your son. I pray that you move swiftly past the developmental delay and your son catches up. My first son was slow to talk so I know how stressful that can be. He is now 5, bright as a button, and you can't get him to be quiet!! Hold out for the reassuring times to come.

Oh, and for reassurance @Thisishard25 , I didn't talk for the first almost 3 years of my life, and I now lead an AI department and would like to think of myself as functioning as normally as anyone else. Not a social butterfly by any means (I have low tolerance for pleasantries or nonsense), but I can be if needs must. Hopefully that also gives some reassurance.

Regarding your son, was the eye turn almost always present or just occasionally? How did it track over time?

One of my DDs was born with one eye virtually closed and when she did open it it was clear things were not right. Tests showed that the faulty eye was very ling sighted and the other normal. At about 18 months she was given glasses to try and even things up and give her brain a chance to develop binocular vision.

It worked .... all is well now, but she has worn glasses all her life. The first few years of keeping glasses on a toddler were ..... interesting!

Thanks @Mischance for sharing your experience. Keeping glasses on a toddler sounds like a nightmare - probably because I am trying to imagine doing that with my toddler. I'd prefer that by far than surgery mind you. Glad to hear all worked out.

@HopefulMother1my sons eye was all the time. It was so noticeable and then as time has went on it got less and less noticeable. He would have had bother looking up and they would have went all squiggly(the only way I can explain it lol) you can still see it drifts out but not the way it used to. We had the special drops in his eyes to check vision etc which was all good. It couldn’t be explained to us accept my husband had a turn, wore glasses as a child and his dad also had an outward eye, so it may just have been an inherited thing.

thank you for your reassurance about the talking. It worries me. There is no words whatsoever, very little gestures. Doesn’t point but does clap hands & blow kisses. There is always something to worry about with kids 🫣

Its always a wait and see game 🥺 i feel you🙏🏼