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Newborn visually impaired

9 replies

Parentbutscared · 04/12/2022 01:18

At just 8 weeks old we found our baby was born with underdeveloped eyes and this would probably impact her vision. It’s a rare congenital disorder which isn’t usually picked up on scans. As you can imagine my world turned upside down and for
a good few weeks I was in shock and hardly had the energy function.

now at nearly 4 months she can’t see my face or doesn’t really respond to things around her and it’s likely she will only see light and dark.

I’m just devastated.

I go from emotion to emotion which I know is normal.

I’m mourning the baby/ life we thought we would have
I’m mourning that happy feeling I had throughout my pregnancy

but most of all
whenever I’m out I SEE everything she won’t be able to see and enjoy - nature / toys / shopping/ driving - practically the whole world and wonder how is this poor child going to live her life?!
I blame myself for bringing her in to this world and for causing her suffering

and genuinely don’t think I can do this.

i just want to be able to enjoy my baby and give her the best but I just don’t know how.

Has anyone been in this position? Please shed some light- I would be so grateful

OP posts:
Lysianthus · 04/12/2022 01:29

I didn't want to read and go. Firstly I think you should ask @mnhq to move this to the Health board where you will get much better responses.
I have no experience personally but my first thought was to contact RNIB if you are Uk based. They will be a huge source of support.
I also would say that you will navigate this one day at a time. Remember, your DC doesn't know any different and will adapt so whilst they may not have the vision you have, it doesn't mean that they won't be able to lead a great life. I hope you get this moved and more far wiser MNetters come along. All the best Flowers

Hungrycaterpillarsmummy · 04/12/2022 01:29

Oh gosh I don't have any experience at all but I just want to give you a cuddle.

I think in this day and age, tech is just getting more and more advanced and she will still have amazing opportunities in her life.
Children are a lot more resilient than we think and she will be ok

Imnotaslimjim · 04/12/2022 01:42

Oh you poor love that must be such a shock. I don't think anything you're feeling is out of the ordinary. Can I offer a small comfort? Unless the deformity is causing her pain she won't be suffering. Those born with a sensory loss don't know any different so won't be feeling the loss if that makes sense? Sending you lots of hugs, I'm sure you will get your head round it soon enough and be able to fully enjoy your little girl

LBFseBrom · 04/12/2022 01:52

I am so sorry, can understand how difficult this is for you.

However your daughter will be able to lead a normal life, albeit different to yours, and will experience joy like anybody else. There is no reason to believe she will suffer.

I agree with an earlier poster who suggested contacting the RNIB who will give you lots of information - and encouragement.

Good luck.

Subiedoobie · 04/12/2022 01:55

I have PMd you.

DoubleShotEspresso · 04/12/2022 01:58

Hello OP yes I've been in this situation (also London).....

It's truly terrifying at this point but the great news is there's a LOT of help out there.

Moorfields's children's eye hospital (The Richard Desmond and Sainsbury's buildings), are places we virtually earned loyalty cards for we had so many visits in the early days. The technology, expertise, range of support and sheer kindness has made this so much less life "limiting" than I'd imagined in first hearing our DC diagnosis.

The Family support service there is incredible.
RNIB are also a great shout, for all kinds of daily living info and advice but also with legal advice later fir things such as medical support, local help and support in accessing any benefits and services you may all qualify for.

You will quickly devise your own methods to share all there is to explore in the world and find yourself adapting your home life accordingly.

Our DC diagnosis (also very rare) led to a Certificate of Visual Impairment(CVI), which then opened the door for lots of access to support and recommended strategies etc...

If you'd like any further info please feel free to message me, but my general message is really , all will be fine in time, it's not easy but it is doable.


Remaker · 04/12/2022 01:59

No personal experience but I worked with an overseas equivalent of RNIB and I have met so many kids who live with vision impairment and are doing incredible things. Please reach out to them, or your local equivalent. There will likely be playgroups for families of children with vision impairment and probably specialist therapists who can help you learn how to teach your daughter. Our society ran a specialist preschool and also helped mainstream schools cater for children. Technology is amazing these days, your DD will experience the world through her other senses. There will absolutely be challenges but there are so many people who will want to help.

whathaveidonetomydc · 12/04/2023 11:36

How are you getting on {mention:parentbutscared}?@parentbutscared? My friend has 3 dc with severe visual impairment and they are registered blind. The eldest is 22 and at uni. Whilst no doubt it has had limitations, they have done very well and lead a very good life. They went to mainstream with assistance primary schools and for secondary attend a specialist school for VI pupils with all the technology. They have always attended RNIB play schemes and activities and met many friends through them.

Parentbutscared · 12/04/2023 12:09

we are okay..trying to enjoy
the baby stage and not over think things. We have got in touch with various organisations who are providing support. It’s good to know it’s not impossible and hear positive stories so thank you!

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