Absent red reflex

Abs0luti0n · 2022-01-16T21:55:23+00:00

I took my 9 week old for his 6-8 week check last week and the GP has referred to opthalmology for an absent red reflex in one eye. Has anybody had experience of this? My husband and I are going out of our minds with worry and heartbroken about what this could mean.

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Jaagk · 16/01/2022 21:59

My 12 week old was born with absent red reflex in both eyes, he had a follow up appointment a week later at a specialist and was diagnosed with cataracts in both eyes, he had to have surgery to remove the cataracts

Poorenough · 16/01/2022 22:03

Hi, my dd has an absent red reflex due to a bigger condition. The good news is it doesn't effect her vision very much at all, there's no surgery for it and it's not the big c.
Hope everything goes well for you.

Original poster

Abs0luti0n · 16/01/2022 22:05

Thank you so much for replying, how is his vision now?

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Original poster

Abs0luti0n · 16/01/2022 22:16

@Poorenough

Hi, my dd has an absent red reflex due to a bigger condition. The good news is it doesn't effect her vision very much at all, there's no surgery for it and it's not the big c. Hope everything goes well for you.

Thank you for commenting.... forgive my ignorance but I thought the absent red reflex meant they were unable to see? Or is that just indicative that there's an issue that needs investigating?

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Jaagk · 16/01/2022 22:23

They said that everything behind his eyes are perfect and no damage at all but they can't say for certain how much vision he does have yet, he did have to go for a follow up surgery at the end of December as there was jelly strands coming through his pupil in his right eye which if left can cause infections but he's healing well

Poorenough · 16/01/2022 22:24

So the red reflex is when you shine a light at the eye, the light hits the back of the eye and shines back red. An absent reflex, or a white reflex can mean a whole number of things.

Babies are difficult and wiggly, it could mean absolutely nothing and the doctor was wrong. It could mean something is blocking the back of the eye. It could mean there's a hole in the back of the eye. And probably a load of other things. Definitely doesn't mean the child is certainly blind in that eye.

Please try not worry too much. I know that's difficult but it could absolutely be nothing at all.

Original poster

Abs0luti0n · 16/01/2022 23:05

@Jaagk

They said that everything behind his eyes are perfect and no damage at all but they can't say for certain how much vision he does have yet, he did have to go for a follow up surgery at the end of December as there was jelly strands coming through his pupil in his right eye which if left can cause infections but he's healing well

Oh bless him, I'm so glad it sounds like a successful outcome!

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Original poster

Abs0luti0n · 16/01/2022 23:07

@Poorenough

So the red reflex is when you shine a light at the eye, the light hits the back of the eye and shines back red. An absent reflex, or a white reflex can mean a whole number of things.

Babies are difficult and wiggly, it could mean absolutely nothing and the doctor was wrong. It could mean something is blocking the back of the eye. It could mean there's a hole in the back of the eye. And probably a load of other things. Definitely doesn't mean the child is certainly blind in that eye.

Please try not worry too much. I know that's difficult but it could absolutely be nothing at all.

Thank you and you are absolutely correct.... there is little point worrying until we know what we are dealing with but I suffer huge anxiety anyway (have recently started medication) and we have been through a lot of family trauma recently.... this just feels like the last straw

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Poorenough · 16/01/2022 23:16

I understand how you feel. The heavy feeling in the chest, the sht put on top of sht feeling. "I just know it's going to be bad" feeling.

We've been through it many times with dd. And the more years I parent the more I don't think it ever really goes away. So I simply do, as I tell dd: Big deep breath, say "I am brave." And just power on through it.

There's nothing you can do but hug your baby and carry on.

Original poster

Abs0luti0n · 16/01/2022 23:29

@Poorenough

I understand how you feel. The heavy feeling in the chest, the sht put on top of sht feeling. "I just know it's going to be bad" feeling.

We've been through it many times with dd. And the more years I parent the more I don't think it ever really goes away. So I simply do, as I tell dd: Big deep breath, say "I am brave." And just power on through it.

There's nothing you can do but hug your baby and carry on.

I'm so sorry you've had such health struggles with your dd.... life really does just throw some cruel sh*t at you sometimes. I am absolutely fine in front of the kids but when lying in bed listening to him happily snoring next to me my mind races and the panic just feels crushing. Thank you so much for your kindness and sharing your experience, I appreciate it so much 😊

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Rodders92 · 17/01/2022 19:34

Does he have very darkly pigmented eyes as this can be one reason that a red reflex isn’t seen . In lighter coloured eyes the retina is reddish and in very dark eyes the retina can also be much darker making it more difficult to see the reflex. So it doesn’t necessarily mean that there is something wrong. Some cataracts if they are significant enough can make the pupil look white this is called leukocoria. Hope you get an answer soon

Original poster

Abs0luti0n · 17/01/2022 20:15

@Rodders92

Does he have very darkly pigmented eyes as this can be one reason that a red reflex isn’t seen . In lighter coloured eyes the retina is reddish and in very dark eyes the retina can also be much darker making it more difficult to see the reflex. So it doesn’t necessarily mean that there is something wrong. Some cataracts if they are significant enough can make the pupil look white this is called leukocoria. Hope you get an answer soon

Thank you for replying. No he doesn't have dark eyes, they are actually a very light piercing blue so I wouldn't think that was an issue - plus one can be seen clearly and a junior doctor and a registrar have examined him and concurred with the GP 😔 When you look at his eyes you can't see any difference between the two at all - there's no cloudiness or different colouring or anything like that. I just can't stop thinking it is something really serious.

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Rodders92 · 17/01/2022 20:31

That obviously doesn’t apply to your son then , this will be treated as an urgent referral so you hopefully should have an answer soon , babies should have a newborn eye exam before the 6-8 week check looking for the red reflex. A cataract is one possible explanation, other worrying things are much rarer

LunaAndHerMoonDragons · 17/01/2022 21:06

One of our DC had this, he wasn't wriggly during the eye exam, mid brown eyes, not particularly dark. We were referred to a paediatric opthamologist, I was really worried. It took very little time for the opthamologist to say he was fine, no real explanation, she said sometimes it's hard to see, and if they're not sure they'll refer because better safe. We went straight from GP to opthamologist, they don't see a paediatrician inbetween here. I hope you get to see the specialist quickly.

Original poster

Abs0luti0n · 17/01/2022 21:16

@LunaAndHerMoonDragons

One of our DC had this, he wasn't wriggly during the eye exam, mid brown eyes, not particularly dark. We were referred to a paediatric opthamologist, I was really worried. It took very little time for the opthamologist to say he was fine, no real explanation, she said sometimes it's hard to see, and if they're not sure they'll refer because better safe. We went straight from GP to opthamologist, they don't see a paediatrician inbetween here. I hope you get to see the specialist quickly.

Oh my days I would give my right arm for this to be the case but I can't help but feel that it's unlikely with 3 doctors all agreeing. I'm so glad everything worked out well for you though and everything crossed that they tell me I'm panicking about nothing! I'm seeing the specialist tomorrow..... cannot think straight I'm so terrified!

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Original poster

Abs0luti0n · 18/01/2022 15:09

Thank you everybody for the messages, unfortunately opthalmology has confirmed that there is an issue and has referred us to the regional childrens' hospital. I just knew in my gut it was bad 💔

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Gladioli23 · 18/01/2022 15:14

Oh gosh OP, that must be so difficult for you. Do you have any ideas of next steps or timelines to see the regional hospital yet, or is it a waiting game for now?

Original poster

Abs0luti0n · 18/01/2022 16:55

@Gladioli23

Oh gosh OP, that must be so difficult for you. Do you have any ideas of next steps or timelines to see the regional hospital yet, or is it a waiting game for now?

It's just a bit surreal at the moment. I felt in my bones it wasn't good news but was also waiting for them to say it was all an accident and he is absolutely fine 🤷🏻‍♀️ They said I should get a call today or tomorrow with an appointment within the week so at least it won't be too long but I thought we would have an answer today so it feels a long way off!

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Gladioli23 · 18/01/2022 21:29

A week can feel like the longest time when you don't know what to expect, you can't help but wonder if it will be the worst news.

Little comfort, but at least if it isn't good news it's now being investigated and you have been referred to the specialists who will know what best to do to look after your little one.

Original poster

Abs0luti0n · 18/01/2022 23:14

@Gladioli23

A week can feel like the longest time when you don't know what to expect, you can't help but wonder if it will be the worst news.

Little comfort, but at least if it isn't good news it's now being investigated and you have been referred to the specialists who will know what best to do to look after your little one.

Yes you are right..... he's in the best possible hands. Right now I just wish I wasn't breastfeeding and could indulge in more than a small G&T!! Thank you for your kindness.

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Thinking2041 · 18/01/2022 23:25

Hi Op.
I am so sorry. I know there are a range of things it can be so I’m hoping it’s amongst the most minor of the options. I really hope the call comes soon and the appointment comes soon.

Original poster

Abs0luti0n · 19/01/2022 07:02

@Thinking2041

Hi Op. I am so sorry. I know there are a range of things it can be so I’m hoping it’s amongst the most minor of the options. I really hope the call comes soon and the appointment comes soon.

Thank you so much! I think that's the most difficult part, that we don't know what we are dealing with so your mind automatically jumps to the most serious which it sounds could be very serious indeed.

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Poorenough · 19/01/2022 09:48

Hi op, sorry to here this xx did opthalmology give you no idea what they had seen? We were told before hand why we were referred to the childrens hospital. Did the put drops in the little ones eyes to get a better look?

Original poster

Abs0luti0n · 19/01/2022 10:39

@Poorenough

Hi op, sorry to here this xx did opthalmology give you no idea what they had seen? We were told before hand why we were referred to the childrens hospital. Did the put drops in the little ones eyes to get a better look?

Hi, yes they put drops in then one Dr looked in then went to get his senior who looked but by then baby was a wriggly grump so he said there was an issue that needed looking at under a general anaesthetic. Their whole demeanors totally changed though (both husband and I agreed so not just in my head) and it felt very serious. I've just had an appt through for children's hospital Friday morning so I guess we don't have to wait too long at least.

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Abs0luti0n · 19/01/2022 10:43

We did ask what they thought but he stuck to the line that baby was wriggly so couldn't be 100% certain so wasn't going to say.

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