Spina Bifida-please sign the petition to help prevent SB x

[klee1988]

I went for my 20 week scan on Tuesday. Thought everything was going to be okay but it showed my baby has spina bifida. I feel cheated as I took my folic acid. I have done everything in this pregnancy i should have. I haven't even touched a drop of alcohol. Me and my oh have been pretty upset about it all week. I don't know how to feel.

I have got an appoinment with a specialist next Tuesday...which is dragging in atm.

has anyone suffered from or knows someone who has suffered from spina bifida. I'm praying my baby is okay and hasn't been affected by it badly. Any information would be great

 

[Manda&Thomas]

hiya hun,
just wanted to say sorry it wasnt what you wanted to hear but it doesnt always have to be bad.
channel 4 did a documentry on kiddies born with problems and spina bifida was one of them but the little girl was very happy and did everything every other kid did she was doubly inconinent though but was going to have an op to fix it.
also sometimes the babys actualy dont have it when they are born.
am wishing you all the luck though hun and hope it turns out well in the end
manda xx

 

[klee1988]

Thanks...but i have been told the baby will def have it.
It wasn't a test for Spina Bifida...it was picked up on the scan.
There is a big curve sticking out off the bottom of its spine and its head is measuring small.
I hate myself because the main thing I was concerned with was if it was going to be a boy or girl...i just assumed everything was going to be alright.
Iv tried reading up info on the internet but too be honest its just making me feel worse.
I love my baby so much, I am just scared for it!

 

[Babylicious]

 

[Manda&Thomas]

oh i dint relise that hun.
they should be able to talk threw with you what will be avalible for your baby after its born. they can do magical things nowadays.
dont punish yourself though hun its not your fault at all.
the internet is a terrible place for finding out info always seems to make a bad situation look worse
have you looked up any numbers for surport groups there should be one about somewhere maybe ring them they may be able to advice you more
manda xx

 

[ella]

Firstly want to say I have met lots of people with severe Spina Bifida and everyone one of them was an amazing person. I also know two people at work who have the condition and they both function totally normally. There are many degrees of it, I can only imagine how worried you are for your little baby - but try to stay posititve things are often not as bleak as they seem, scans/tests can be inaccurate, my aunt was told her last child had Downs Syndrome and she didn't.

 

[Emma58]

I'm really sorry to hear your news.

I don't know a great deal about Spina Bifida to be honest.
Don't hate yourself for just being worried about whether you are having a boy or a girl everyone does that.
You have time to prepare before your baby is born at least you know now.

It's totally different and in no way the same as you, but at my 20 week scan they found his kidney was measuring 1mm bigger that it should be and i have to go back at 28 weeks for another scan. I don't know what the implications are but i'm glad they have picked it up early.

I really feel for you and what you must be going through.

 

[debecca]

Sorry to hear this klee, sounds like you are still in shock

Hope everything works out well, like you I know next to nothing about spina bifida but please do keep in touch on the forum so we can find out and hopefully see pictures of your beautiful LO when they are born.

You know, I am sure you will love him/her so much regardless of any condition they may have - and I bet you'll be a great mum

 

[debecca]

Irrelevant probably, but did you find out the gender? xxx

 

[mary70]

Hi hun i am really sory for your news but i have worked with a few children with spina bifida and they have been the most loving kids in the world, there are lots of brill organizations out there that will put you in touch with parents going through the same thing and be able to offer lads of advice

 

[floppit]

One of the climbers in my old uni climbing club had spina bifida (sp?). He might have been an inch or two shorter than he ought to have been - I remember his arms always looked long but he was one of the best climbers, not to mentioned one of the most fancied!! He told me that they closed the opening on his back when he was a baby and there were no consequences since then.

Edit - god I'm crap! I really hope you have good support round you and that you get to find out a little more soon.

 

[Tillytots]

oh hun So sorry to hear this

 

[DebbieM]

Just want to give you a

 

[timsmom]

I am so sorry to hear that your baby has a problem. Modern medicine is amazing and as spina bifida varies in severity so much, perhaps it won't be too serious or at least something that can be operated on. You are in my thoughts and prayers and let us know how you get on next week.

 

[muppetmummy]

I'm really sorry to hear this

I used to work with a guy with Spina Bifida in my old office. He led a very full life and was always going out to gigs and the theatre, and had the most amazing personality I've ever come across, he was always so positive about everything and was really popular. I think he had a more severe form than some because although he could walk, it wasnt very fast or for long distances and he had a limp, he got around ok though.

It doesn't mean your child can't lead a happy fulfilled life.

There were also a couple girls at my secondary school who had the condition, though I didn't know them personally. They walked with sticks but were mobile. They always seemed happy and had lots of friends around them.

There are a lot of organisations out there who can give you support

 

[BeckyJ]

really sorry to hear your news

 

[Kylie1007]

I have a friend with Spina Bifida and she has led a perfectly normal life - she is mobile and not wheelchair bound, had a baby a year ago. You wouldn't know that there is anything wrong with her - she has a disabled badge for the car but you wouldn't say that she needed it. I think that she had to have a few operations throughout her childhood. Saying that, i think that there are different degrees of severity.

 

[lauramumof2]

Im so sorry that this was discovered in the scan, it must have been an enormous shock. Nobody goes for a scan expecting to be told something like this.

Keep us updated, we are all thinking of you and oh and especially your baby.

 

[Fluffy Bunny]

First of all

My cousins little girl (well not so little 12years old now!) has spina bifida. She was also told at her 20wk scan that her baby had this condition which came as such a shock. You would never know it now, all that she has is that one of her feet turns inwards slighty so she is a bit 'pigeon toed' but she leads a completley normal, active life.

I hope you get the support you need and keep asking questions, easier said than done, but try not to stew over it. At least the condition has been picked up and your little baby will get all the help available.

 

[Nicola g]