Anyone here have a baby with Spina Bifida?

[wellyboot]

Hi all,

Am desperately hoping that I don't need to join you on this forum (no offence!), but I went with my 9 month old little boy to a specialist child development appointment today because he is delayed at sitting up independently and he has a protruding verterbrae on his spine.

Lots of the questions she asked me seemed to be bizarre - his poos, whether he had a good stream of wee, about my scans when I was pregnant etc. She also was bending his feet around a lot and kept tapping at his lower legs. She was also very interested in a tuft of hair that he has on the base of his spine, and referred us for x-rays and an ultrasound.

I came home, googled the tuft of hair thing, and found that this is a sign of spina bifida. Lots of the other questions she was asking and the things she was doing with the baby relate to this too.

Has anyone else had a baby diagnosed with spina bifida after birth? If so, can you share your experiences, either on the forum or by PMing me? I know it's not the end of the world, but am still worried sick.

Thanks,

Welly

 

[Ozzieshunni]

You might want to speak to Tegan'sMum. I hope she doesn't mind me mentioning it , but her wee one has spina bifida

 

[SwissMiss]

I was just going to write that too. I'm sure TegansMum would be a great resource, she even has a parenting journal about raising her lil' princess with spina bifida and hydrocephalus...
I hope ev is ok hon

 

[Emmea12uk]

My son has sb too and I run an organisation for parents with kids with it. Can I help you?

 

[Tegans Mama]

Hiya Wellyboot

I'm sorry I've not noticed this thread before now!I just came across it randomly. My little girl has SB quite severely and we've known about it from birth. Please feel free to PM me if you need any advice or just want to talk.