pregnant with baby girl who has diastomatomyelia????

hi, can someone please help me? im 27+4days pregnant with a girl who has diastomatomyelia. due to problems picked up on my 20wk scan i've had 2 MRI scans and was told this awfull news 2days ago..the doctors have offered to terminate my baby! the split cord is at her neckline. they say they wont no how bad she is till shes born. does anyone no any info as to what treatment she could have or whether she would be paralyzed or lead a normal life? we dont no what to do..i cant bring myself to kill her yet how can i bring her into this world knowing she could suffer all her life???..has anyone experienced this or advise us how bad it would be for my baby?

thanks beci

[selmaS]

  Hi....Have u read ne info on this condition?

This condition is closely related to chiari malformation which I was also born with and not dx'd until age 48.....

There is no way to know, and yrs ago u would not have known until she was born....u can place this in GODs hands or listen to drs.

  Read up on just what this is......

Just a little info on myself while pregnant with my DD, I was told she had a physical deformity and they had to do more tests, they wanted to do a amneio which could have caused me to lose her, I said no...turns out she didn't have the deformity, and I think what they were picking up was my own deformity we did not know about.....

Tests r not always right.....and u have to decide this for urself....

  Sending prayers for u both

     "selma"

[beciuk]

Iv researched and researched and can't find anything similar, there's loads lower down the back but not at the back off there necks like my baby has..may I ask wer it is on you and how its affected your life?

Thanks beci