my new baby has brain damage

[madmouse]

Visual cortex damaged, will likely never see. Also likely have epilepsy and possibly other issues. Anyone else out there?

madmouse - Congratualtions are on the birth of your baby though I'm sorry to hear your news.

Are you both at home or is baby still in hospital?

Oh, I am sorry to hear that. No experience but couldn't pass the thread without offering some sympathy.

Not in your situation madmouse but wanted to help by bumping - goodluck and stay strong for the both of you.

Hi madhouse. My daughter was dx with brain damage at birth. How old is your little one?

I don't know what the doctors have told you but they can't tell. Not at birth. They can't make any true prognosis. This isn't to say everything will be fine and hunky-doery, its wait and see.
My daughter has damage to basal ganglia, motor and visual cortex. We were told she would be a deaf/blind vegetable. Nonesense. She has severe cerebral palsy. She has epilepsy and she has cortical visual impairment. CVI changes over time and from being almost blind she can now see and recognise all her family.
I could burble on but maybe its best if there's anything you want to ask?

Agree with nmc. Whatever the doctors tell you remember it's the doom mongering scenario- they can't help themselves.

Love to you and your babyxx

madmouse

Congratulations!

I agree, they have no way of knowing how much a baby will see so early or what other problems might or might not turm up - it's just guesswork. They either say nothing and leave parents floundering endlessly or they give you a terrible-sounding worst-case scenario and scare you senseless, it seems to be one extreme or the other.

I recommend you get in touch with the NBCS (National Blind Children's Society) - it's a good first point of contact whatever your child's level of visual impairment.

Start by just enjoying your baby and getting to know him or her.

My DS has a visual impairment and I know a couple of people who have DCs with VI and epilepsy, and it's not the disaster it seems at first I promise. DS is absolutely the best thing that ever happened to me, having him has changed my life profoundly and very positively. It really will be OK.

congratulations on your baby
Agree win nmc. my dd suffered brain damage at birth and has cp and epilepsy.

Congratulations on your new baby. I am in similar situation, my daughter is 17 months and has a rare brain disorder which has caused a whole range of problems for her including epilepsy. So far she cannot see although there is nothing wrong with her eyes, the problem is the messages from the brain aren't getting through. There are
other people out there you're not alone.
Love to you both.x

Congratulations on the birth of your beautiful son, madmouse.

It seems like the end of the world now, I remember I felt like I had walked through a door into a parallel, terrifying universe when my DD2 was whisked away from us at 6 hours old, fitting.

The doctor's gave us a really dire prognosis, but she's had no more fits since the first few days after birth, and she's an absolute joy. She's a sunny natured little girl (13 months now), who takes enormous pleasure in life and in her family.

Don't focus on the "brain damage", focus on your darling boy, give him lots of love, and it really will be ok.

You still have your baby, you know x

Congratulations on the arrival of your son Madmouse.
I have no experience of this, but remember when my DD3 was born with Down syndrome, how fearful I was of the future.
I believe that whatever happens, nothing will be as bad as that initial realisation that there are problems. As Coco has said, I know you really feel you've entered a parallel universe.
But be brave, nothing is set in stone at this stage. I'm sending love to you and your lovely new boy. Give yourself time to get to know him. And keep us posted of how you get on xxxx

Thanks for all the helpful responses. It is great to know that there are others out there with beautiful babies with the same problems.

We are happy with our consultant (Nathan I guess was luckily enough to start fitting in the John Radcliffe, Oxford ). She has made it clear to us that what she is giving us is a worst case scenario and she spends lots of time with us, carefully explaining what she knows and thinks and answering all our questions. He had a CT scan yesterday as his brain scan seems to look more normal than expected, so we hope to hear about that soon.

If I have further specific questions I will definitely post them, knowing that there are some seasoned veterans on here! Thanks

hello madmouse

Congratulations on the birth of Nathan . I have never had to experience what you are going through so I cannot begin to know how you are feeling right now. But what I can say is that if Nathan grows up visually impaired it will not te the end of his world.

I have been blind since birth (also told I have corticle blindness, although no actual diagnosis was ever given) and the effect on my life has been everything but devostating.

I am fully independent, there is nothing I can't do apart from drive a car, and there are some occupations I probably couldn't do (pilot/taxi driver/surgeon ) but other than that my life is no different to someone with sight.

I am married with a 5 year old son (who is also called Nathan) and the fact I can't see is just one of those things.

I cook, go swimming, look after a home and a child, help out 1 day a week at my ds' school, am on the PTA and will be running the cake stall at the upcoming fate, and am in the process of becoming a school governor.

Only time will tell you if Nathan will have any other issues, but just remember that the doctors will often give you the worst case senario.

If I can help you in any way please don't hestitate to shout, my email is [email protected].

Love to you all xx

There's a Yahoo group for Cortical Visual Impairment that might be useful for you. There are methods to help the brain learn to see despite the damage. dd has CVI and it varies day to day. When she's having a lot of sub-clinical seizures in her visuall cortex she's practically blind. Must be like seeing through static! But other days, and since we started the keppra, she can see about a foot and recognise us and pictures and stuff.
We're doing everything for her vision we can cos she can't use her hands to see like someone with just a visual impairment.