Newborn visually impaired

[Parentbutscared]

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 to 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 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

That sounds so hard OP I don't have experience but hopefully someone who does will be along soon. Are there any charities or organisations for your daughter's condition? They might be a good avenue for meeting other parents who have gone through what you are going through now.

I can't imagine the heartbreak you're experiencing. Nothing hurts like not being able to help your child.

But I have seen and heard experienced from people who are blind and the just seemed to be you can't miss what you never had.
Her life is exactly as she will have always known.
When you're put narrate. Tell her everything you see, everything you're doing. Introduce her to music, sensory things.
Have you joined Facebook groups? It must feel so isolating but you're not alone.

I am sorry to hear this - it is natural to grieve the experiences you hoped your baby would have.

But, she will explore the world in her own way, finding the sights you see using her other senses.

Take the time to feel sad but leave your heart open to the wonderful joy that she will bring you.

I think it would help to talk to other parents in your position. The most important thing your dd needs is your love and the gift of life and she already has both those.

Oh and this is not your fault. You shouldn't blame yourself at all.

Parentbutscared my heart goes out to you!
I don't have experience of impaired vision but our DD - only DC - had a life threatening condition at 6 months old which left her with severe learning difficulties, severe autism and refractory cluster epilepsy. Our world too collapsed when this happened.

However, 28 years on our DD lives in a gorgeous apartment in an excellent small supported living centre close to home. She only has the speech and function of a 3 year old and her epilepsy is very dangerous still but she is blissfully happy
with wonderful carers. She has a better social life than we do.😂

Yes it has been extremely hard as we have battled constantly to obtain the best help for her. She also had to move to special needs boarding school at 8 years old as none of the day schools could cope with her conditions. We have always spent loads of time with her despite having to travel great distances but now it is brilliant as we see her 4/5 times per week and speak on the phone daily.

Yes, it's heartbreaking knowing the things she has and will continue to miss out with.
However, she has never known the worry of passing exams, relationships, getting a mortgage, career etc. She is blissfully happy in HER world!

Medical science is improving all the time with sight impairment and you just don't know what treatment may be available in the future but, even if nothing can really help, you can build a different life with your DD and she WILL be happy with the right support I promise.

I completely understand your devastation, you are mourning the life with your gorgeous girl that you thought you would have before. However, as PP said, this doesn't have to define them. Try to get in touch with any charities relevant and support groups. I know it seems overwhelming now, but it really helps to find out how other people and their children have gotten on in similar circumstances. Wishing you and your girl the best. She already sounds like a warrior, as do you. You will get through this and feel free to PM if you ever need to talk, rant, anything!

I'm so sorry to hear what you're going through. It's so difficult not to worry about the future, I know what it's like to have a baby with health problems and that anxiety can be overwhelming.

I've not been through the same thing but I have worked with blind children and just wanted to say how well they adapted to life. They were normal children, who enjoyed and experienced life just like any other kids. They often had rich imaginary worlds and still enjoyed visualizing and imagining what things looked like, so you could still share everything you can see with your daughter. But they also introduce you to a whole new way to experience the world through the sounds, smells, textures, movements, proprioception.

It's hard now while she's so little but she'll already be getting so much from your warmth, smell, touch, and voice.

I've found the charity Sense to be helpful with children I've known, they run support groups, holidays and get togethers for families affected by sensory impairments.

What a huge shock OP and something you don’t expect when a healthy baby is born 💐 do you have any kind of prognosis for her? Are there any treatments?

Thanks all
not sure in prognosis yet as awaiting further tests

Please reach out to local groups via RNIB where you will find the most wonderful affirming stories and excellent support. Not sure where in the county you are but Angel Eyes are a fantastic charity in NI and hopefully there will be equivalent groups around the UK.

A diagnosis like this can be devastating but technology has transformed the lives of those who are blind or partially sighted and as someone above said it can be harder for those who have sight and lose it.

I have witnessed children born with sight loss who are genuinely amazing in their abilities to navigate in a sighted world. It hasn't prevented their enjoyment of life at all !

I’m so sorry op. I can’t imagine what you’re going through.

It might not be helpful right now as I know you’re still trying to process this, but focus on all the things she can do and will experience. On YouTube I follow a really beautiful, inspirational girl who was born blind. She’s travelled the world with her guide dog, and she has a brilliant and fulfilling life. Her name is Molly Burke. She can see light and shadow, but that’s all.

First of all my heart goes out to you. You are grieving the life you planned and nobody really can understand unless they have been through it. Assurances that life will be good if different seem cruel at this point but people mean well.

We went through a different process as it was autism that turned our life upside down, but that's a slow burn, not the shock you are dealing with.

Firstly get in touch with general sight loss charities, also seek out support groups for the specific condition, you are not alone - parents who are ahead of you in life's journey can be amazing support, more than health professionals often.

Secondly I recommend listening to in touch on bbc sounds, it's been going for a very long time and may have covered this condition but there's definitely programmes on congenital blindness vision impairment, education, family support etc. The presenter is Peter White, it's on at 8.40pm bbc radio 4. (I support several visually impaired older adults and found the advice invaluable).

The sen and disabilities board on Mumsnet is good too, do stop by - I've found lots of support there over the years and still use the parents of adults board as more relevant to me.

Whatever the time, here there's a listening ear, I find strangers care and support sometimes more than in real life.

Lots of hugs for you and your little one, take care

Oh and finally, dd is at music college and has a completely blind pianist on her course, I admit she's in awe of him and his memory, he has to memorise the braille music. He's getting far higher grades than dd (they are in a sen tutor class together)

I’m so sorry or your daughter’s diagnosis. I don’t post much on here but I needed to respond to you as we have been in your position - our DS was diagnosed with a genetic eye condition at 8 weeks old and registered with a visual impairment.

It was one of the most difficult times of my life and I fully understand and empathise with what you are going through. I can’t even put into words how utterly devastated I was. It is so unbelievably hard to receive a diagnosis that will impact your child for the rest of their life and that cannot be “cured”. I think this is also impacted by receiving a diagnosis when they are so young as they are yet to develop skills, so all kind of thoughts go through your head and you imagine the worst. As you say, you also mourn for the life you thought your child would have.

My son is now a preschooler and I think the most valuable thing I can say to you is - everything will be ok! My little boy is amazing in every way. Yes he has a visual impairment and we still don’t know for sure how much he can see, but he can do everything every other child his age can do and is such a happy little boy. He sees his consultant regularly and he has input from a visual impairment teacher who gives us strategies to help him and also works with his nursery to help them adapt the environment and activities to support him in the best way they can.

I was so fixated and worried about the future, I did stop enjoying things and it took me a while to stop thinking about it every second of every day so I know exactly how you feel. Do you have anyone you can talk to? My DH is amazing but we had different coping strategies in that he didn’t want to talk about it much at all. I met someone on social media whose child was the same age with the same diagnosis and I found that incredibly supportive and helpful xx

Visually impaired person here

Have you contacted Look UK? Not so much now (and I personally found them unhelpful) but social services might help. I was contacted by then when I was registered partially sighted in 2007.

You've posted this in General Health too I think? I have posted advice in there and don't want to repeat myself!

A friend's son sounds like he has similar amount of vision as your daughter. He's 18 and has been selected for the GB swim team

Hi, I know you posted a few weeks ago but came across your post and wanted to share and support.

My son was diagnosed with a genetic eye condition when he was a baby. He's registered severely visually impaired. He is now 9. It's like a shot to the heart when you find out. And I'll be honest, it never really leaves your thoughts. I try to push the "he'll never drive, or see colours, or the beautiful views, or a football match" away when they creep in. BUT DS is fantastic. He attends mainstream and gets on fab at school. He has full time TA funding and the specialist advisory teacher is amazing. The school have been so engaged with making adaptations. He does well academically speaking and is now touch typing. He rides a bike, his class mates are lovely (they'll say things like oh your mums there by the gate-so intuitive :-) ) and he plays football in the local team. He's amazing (although I'm biased!)

It's all the parts of a person that make them who they are. I'm starting to feel that what might be deemed a "weakness" can actually create great strength in other areas.

Hope you're okay. We all wonder about the future but one day at time and try enjoy the baby months for now. X

I’m so sorry to hear that you are going through this. I’ve no experience of this myself but I do follow prevailandbraillemama on instagram who has a baby and older child with visual impairments in case there’s something there that’s useful to you 💐.

I follow prevailandbraillemama too, for no reason! She’s fab and such a great advocate for her children.