Sensitive post - apologies in advance - Not IVF / TTC related.

[lou79]

Firstly I don't mean this post to cause anyone any hurt or sadness or seem like I don't care about those of you on this site who are going through hardship or loss. I genuinely don't want this post to seem insensitive.

I had a surprise natural conception this year and last week gave birth to a beautiful baby boy. Needless to say, my husband and I are overjoyed. However, during the standard medical checks before leaving hospital the Dr checked our baby sons eyes and detected something called white light reflex. He didn't elaborate on this and simply said he would refer him to an eye specialist to be checked over as a precaution. I didn't give this much thought as the Dr himself didn't seem too concerned about it and to be honest I was quite tired etc and in discomfort after the birth so I wasn't as switched on as usual. Now that I am home I have had a chance to google white eye reflex and it can be very serious!! A symtom of childhood eye cancer and if not that then a whole heep of other nasty eye conditions needing urgent treatment all of which could lead to vision problems. Yesterday our referral letter arrived and the eye Dr appointment is not until 29th Oct. I am going out of my mind with worry and have been in floods of tears. I am fearing the worst for my little baby son. Again I am sorry to post on here but my hope is that some of you on here may have a medical background and know of this white eye reflex thing and be able to offer me some hope that it is not as serious as google is making it sound!! I know I am clutching at straws and this is not the correct forum for this type of thing. You are all such a lovely bunch of people and have been there for me during my journey to date. Thank you for taking the time to read this post xx

[Autumnmoon]

I'm so sorry you have all this worry about your little boy I hope you can get a better explanation and hope that all will be well for him what a shame his early days have been so stressful wishing you all the best x

[lou79 in reply to Autumnmoon]

Thank you, here's hoping it is nothing serious and I am worrying over nothing! Thanks for the reply and and the good wishes xx

[Hidden]

Hi. Firstly congratulations on the birth of your little boy. I'm sorry you're going through this. Unfortunately I don't have any words of advice but wanted to empathise. Our miracle cyclogest baby was born nearly 7 weeks ago, a beautiful baby girl. Unfortunately she was born with a congenital birth defect called unilateral Microtia. She has a very cute monkey nut ear and will need a bone conducting hearing aid for life. We won't know the full extent of her hearing loss for years, if ever. Of course, she'll always be perfect to us but I'd be kidding myself to think she won't have to face additional challenges (and potential bullying for looking different) throughout her life.

To go through all we've gone through with infertility to then immediately know that life won't be simple for our little ones is really hard. I'm sorry I don't have any words of advice, but as someone going through a tough time of multiple hospital visits and tests, I'm offering to be a shoulder to cry on/sister-in-arms as things develop for you. I hope you get some answers soon, and that things progress quickly from that first appointment xx

[lou79 in reply to Hidden]

Oh my goodness! I really feel for you all! Congratulations on her arrival into the world and I am so sorry to hear of her condition! I totally understand what you mean about them having to face challenges in their lives and as parents it is so heartbreaking to watch a child go through them and not be able to control it. Plus they don't understand why they have to go through them either which makes it all the more difficult. I sincerely hope your daughters hearing loss isn't bad and I am sure she will continue to thrive and be perfect in every single way. She is beautiful and unique and her different little ear shape won't ever hold her back.

Thank you for your support and understanding. Please feel free to message me anytime! We are both going to be visiting a lot of Drs over the next few months / years and can relate to each others worries and fears. xx

[E_05]

Sorry I don’t have any personal advice but could you ring the clinic and explain that you were given very little information and naturally have taken to google and are now terrified, maybe even ask if there is anyway his appt could be sooner. They may not be able to move his appt but might be able to offer some support about the condition x

[lou79 in reply to E_05]

Thank you. I think that is a good idea. I had been thnking of doing that but just wasn't sure where to ring as the appt for the eye specialist is in our hospital and the only telephone number provided is the appointments office. One of the websites I visited on google had a helpline for parents so maybe that os worth a call to. I just feel so worried that it will be something horrible for him to go through and end up effecting his vision or worse. Thank you so much for your reply and advice xx

[Hidden]

Congratulations on your baby! I’m a GP and also look for the red(which is normal) reflex at the 6-8 week check. There are lots of different reasons for the white reflex and I am sure the paediatrician is just being cautious rather than thinking it is retinoblastoma (the eye cancer you are worried about) - it can be related to ethnicity and other non-cancerous causes including a clouding of the lens (which is very treatable). Did they say one or both eyes were affected? The appointment is within two weeks (just, I know) which means it is being acted on urgently and things are unlikely to progress in that time frame. There is nothing else you can do in that time- just monitor his eyes so try to enjoy this special time. Xxx

[lou79]

Thank you so much for taking the time to reply. It is only his right eye which is effected the left eye is normal (apart from being sticky from a blocked tear duct!) When I googled white eye reflex I honestly thought I would see lots of completely harmless explainations for it but instead a whole list of horrible sounding conditions where listed, including the retinoblastoma you mentioned. I naively thought we would be given an antibiotics drop or something and sent home but now I am terrified he will have to go through intrusive painful tests and have problems his entire life. I have had eye issues since childhood and my worst fear is for my child to have to go through the same I agree that worrying won't change anything and I have been having severe words with myself about it! Roll on 29th Oct so that we know what we are dealing with and what the next step is. Thank you so much again for your reply. It has helped having a medical explaination of possible causes. I really appreciate you taking the time to respond xx

[genten]

Congratulations on the birth of your son.

Re the white eye refelx, I've never heard of it. But some ladies here may have.

I really hope that time flies until your appointment and that you can get some answers.

Xxx

[lou79]

Update - I rang the appointments office this morning to check if there was any possibility of a cancellation. By a complete miracle there was one today!! We are on our way to the hospital now so will hopefully have more information on his condition soon. Keep us in your prayers xx

[Cinderella5 in reply to lou79]

Hoping you get on ok!xx

[Hidden in reply to lou79]

Oh that is such good news!! Hopefully you will get some answers today. Will be thinking of you xxx

[lou79]

He is fine!! Nothing to worry about and no while light reflex detected!!! I can't begin to tell you how relieved we are. I burst into tears as soon as the consultant had finished her checks and confirmed that he was fine.

The paediatric dr who checked our son in the hospital after he was born had picked up a light reflecting from his optic nerve and that's what he had thought was the white light reflex, hence the referral!

Thanks to each of you for the support and advice given. I can't tell you how much it means to me. This really is an amazing forum. Xxx

[Cinderella5 in reply to lou79]

Awww brilliant news, so pleased to hear this anxious time is over for you!! Wishing you all the best.xx

[Lynnr54]

So glad he’s ok. Sometimes medical professionals really don’t think. We got a phone call a few weeks after my son was born from the HV saying there’d been an abnormality detected in his day 5 bloods and she was coming round to talk to us the following week with a specialist. Of course I googled it and got myself into a right panic as all the day 5 tests are serious medical conditions. I hardly slept between the call and seeing her and the specialist. Turns out my little one is a carrier for Cystic Fibrosis (as am I I found out after going for tests myself) and the fact he’d had a traumatic birth elevated the markers for it in his blood for longer than normal which is why it was detected (apparently being a carrier isn’t usually detected with the test). It has absolutely no impact on his health whatsoever - just means that before he has kids his partner needs to get tested to make sure she isn’t also a carrier. But the way they tell you these things and then keep you hanging is disgraceful sometimes!

[lou79]

That is awful, I can totally relate to how that must have felt for you! The wait must have been torture!! Thank goodness he is ok! I agree, sometimes the professionals are very 'matter of fact' and I understand it is their job to be that way but a bit of sensitivity and to offer some type of explaination when dropping potential bombshells wouldn't go a miss. It would save a lot of anxiety and upset. Glad your little boy is doing well and congratulations on his arrival into the world xx