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About Spina Bifida Genetics Research Project

The Spina Bifida Genetics Research Project is seeking women of children with Spina Bifida to participate in a study that will help determine the causes of Spina Bifida and lead to its prevention.

Hi, my name is Kristal Louie.  I am a study coordinator for this exciting research project and I am an American and Canadian Board certified Genetic Counselor. 

Spina Bifida Genetics Research Project

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Giving Life Mom with Spina Bifida

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Giving Life - Moms with Spina Bifida

I recently read an encouraging article published November 2009 in Cerebrospinal Research.  A group of researchers from Europe followed four women throughout their pregnancies and deliveries.  Two of the mothers had shunts and neither had any problems throughout the study.  Of the four, none experienced any significant problems other than one mother with urinary tract infections (which she had experienced prior to pregnancy as well).  All of the infants were delivered successfully by elective cesarean section.   Although this was a small study, with only 4 participants, the conclusions were quite positive.

After reading that article I decided to find out more.  I was discouraged by the lack of recent data available.  However I found an abstract in the September 2000 issue of Journal of Reproductive Medicine.  Researchers from Australia completed a retrospective (that means after the fact) study on 17 women with spina bifida who had a total of 29 pregnancies.  Similar findings were reported in that the only significant problems reported were recurrent urinary tract infections in women who previously had urinary tract infections and worsening of pre-existing pressure sores.  Of the five women who participated that were wheelchair bound, four had cesarean sections.  Of the 24 women who were independently mobile, 8 had cesarean sections.  Other than minor post-operative complications, the pregnancies and deliveries were very successful.

I learned some very interesting and encouraging findings from the articles and I hope you are able come away with your own interpretation whether it is the same as mine or not.

Kristal

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