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 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

Can you try to reframe it? You’re looking at all the things she ‘can’t enjoy’ but she doesn’t know about any of those things. Try to focus on the things she CAN enjoy. Music, sensory play, your voice. Maybe she can’t ‘see’ nature as you can, but she can hear the wind through the trees, feel the sun or coldness on her skin, smell the rain etc. Is there anyone you can talk to? I know when my son was small (he is autistic so not quite the same) I went through a period of grief for the difficulties he would have. We all want our kids to have the easiest life they can. But meeting other mums of autistic kids changed that.

I was 5 months old when my parents noticed that I have a visual impairment. (It's only obvious if you look really close)

Nothing useful really to add as your baby's visual impairment sounds totally different. Have you contacted RNIB or Children's Blind Society?

The hospital may have someone you can talk to about your concerns?

Hi @Parentbutscared

Take a breath. You are coming to terms with something hugely unexpected. Dd1 was born with a condition undiagnosed in pregnancy. Completely different but also life altering. I was devastated for my baby (and myself) and felt very angry.

I would strongly recommend counselling. Your hospital might be able to recommend someone. I had a counsellor provided by the nicu and saw her every week for months.

I would also recommend finding other parents in the same position- either with babies with the same condition, or with sight impaired babies. I found having a support network of people that understood really helpful.

Good luck. This is just the beginning and finding your feet with your dc’s condition will help you support them to lead a happy life.

My friend is registered vision impaired, and has been since birth. She's found ways to adapt, and uses her other senses to adapt.
She grew up rurally, without the modern technology.

She still went to uni, and has always worked. It's a different way of life, and she will amaze you with how she adapts and navigates the world.

I would apply for DLA, so that you can provide her with all of the tech that she needs to make her life easier.

And also make sure she meets other adults and children who have vision impairments. As having role models and knowing of others living great lives is so Important. And Important for you, so that you understand that she can live an amazing life.

Practical advise: you need to speak to the ECLO at your child's eye hospital and if they don't have one, you need to call the RNIB to speak to one.

I'm sure others will have some good emotional advice here, but please ask for the professionals who are trained for this xx