Anyone have any experience of Spina Bifida?

[hannpin]

We had our 20 week scan today, and it was picked up that they think our little boy has spina bifida. They were unable to tell us the severity etc and we have to meet with a consultant on Fri. Just wondering if any one else has experienced this???

Thanks

 

[Emmea12uk]

Yup me! I also run support groups and am vice chair of an sb charity.

Sorry you have been given this news. If you have done what I did you have probably googled it after getting a worse case scenario from someone at the hospital. First of all don't google it and don't panic!

If you have any questions I will be happy answer them for you honestly and realistically. Sb is not so rare any more or as debilitating as it was 20 years ago. These kids usually lead happy lives and most of the medical problems are treatable and livable.

What do you know about your scan?

 

[BabyBoo36]

We were also told this at our 20 week scan, so I know how you feel. The best thing I can say to you at the moment is listen to your paediatric neurosurgeon if there is one there when you have your next scan. The hospital were extremely pessimistic with us after our 20 week scan, however we had a specialist scan in Manchester 2 days later where they were very positive and told us the most likely scenario for our little one, not just the worse case one.

Thinking of you x

 

[Emmea12uk]

Great advice!!

Stay positive, don't panic until you know everything and come and chat to other parents of kids with sb! https://www.facebook.com/group.php?gid=34787529880 - a word of warning though - in the pictures section there are hundreds of pictures of kids along with some pictures of defects - you might not want to look at the defects!

 

[abc123x]

Didn't want to read and run. No personal experience, but I did have a childhood friend with SB. She was quite lovely and "normal," besides the wheelchair.

I hope everything works out. I'm sure your LO will be lovely.

 

[mafiamom]

dont have any advice but just wanted to offer my hugs and prayers for you and your little one.

 

[Emmea12uk]

How did it go today with the consultant? I hope you are ok!

 

[petitpas]

EDIT: Just seen your post on another thread regarding your consultant visit. I'm so sorry and hope you have a lot of support right now. Thinking of you

 

[Emmea12uk]

I hate to say it - but I think it's too late. She hasnt been back since her consultant appointment