# Can we talk about "a family history of neural tube defects"?



## justKate (Jun 10, 2008)

So we have just started TTC #2, and as with my last pg, I'm taking a multivitamin and folic acid. From what I see, 400 mcg is the minimum recommended amount for all women. With the supplement, that's 800 mcg I'm taking, plus whatever I get in my diet.

My second cousin was born with spina bifida in the late '60s and died from complications in the '90s. Everything I read say "women with a family history of neural tube defects" should be taking more, consult doc, etc. Is that a close enough family relation that I should be taking more folic acid? Obviously I'll ask my health care provider when the time comes, but I was just wondering what others thought. During my last pg my midwife told me not to worry about it--probably had to do with poor nutrition back then, etc.

Any thoughts?


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## nickelsworth (Jun 25, 2011)

According to this website (http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2644841/k.6B78/Folic_Acid_For_Your_Family.htm), "most babies born with the birth defect Spina Bifida are born to parents with no family history of the birth defect."

From what I understand about genetic links to problems like cancer, family history generally only extends to the mother/father and sister/brother and the grandparents on each side. I don't know if that's the case in neural tube defects or not.


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## LionessMom (Mar 12, 2008)

my older brother was born with spina bifida and lived for a few months. every preg i have ever had i have taken double doses of folic acid. it was the first spina bifida baby born to anyone in my family. since then i have learned that me, my children and my mother have fructose intolerance that is linked to our genetic connective tissue syndrome. it only takes on parent to pass it down. bc of this issue we have malabsorption issues, we are always low on everything. to top it off, my mom was pregnant during the time it was ok to smoke and eat very unhealthy. my mom drank lots of pepsi. bc of her issue it caused her to be deficient in folic acid. if she had been one generation before she would have been fine. bc the generation before lived off their own farm and didnt drink pop or eat lots of sweets.

to me a second cousin would be close enough that i would take the extra folic acid. you never know why it happened then. it could be something as complicated as my family or it could be something as simple as poor diet. it would not hurt to take it. the most important time to take it is before pergnancy and up to the 12 or 14th week. after that the neural tube is closed.


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## justKate (Jun 10, 2008)

LionessMom, thanks for the response. I'm sorry that you lost your brother; I really appreciate the info. I see you're in Iowa--my cousin and her family lived in Keokuk. I'll keep up with the extra supplement. Thanks again.


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## Monkey Keeper (Nov 20, 2009)

Quote:


> Originally Posted by *LionessMom*
> 
> ...bc of this issue we have malabsorption issues


From my understanding, there are quite a few inherited syndromes that create these sorts of malabsorption issues. For me, while I have had 3 healthy children, I definitely have become more conscious of folic acid supplementation since my sister had a neural tube related loss. I fell that it is one of those "can't hurt, may help" things to take a bit more than the minimum.


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## loveangel (Jul 21, 2011)

really sorry you lost your brother


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## LionessMom (Mar 12, 2008)

Quote:


> Originally Posted by *PinkBunch*
> 
> From my understanding, there are quite a few inherited syndromes that create these sorts of malabsorption issues. For me, while I have had 3 healthy children, I definitely have become more conscious of folic acid supplementation since my sister had a neural tube related loss. I fell that it is one of those "can't hurt, may help" things to take a bit more than the minimum.


yes there are. extra folic acid doesnt hurt anything as far as i know. i take it all the time just to make sure i have enough.


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## Katie T (Nov 8, 2008)

My sister and I have spina bifida occulta. No one else in the family that we know of has it and my sister and I are one of 6 siblings. They think it is genetic but I have 3 children and my sister has 2. They all seem to be fine. We did have to have level 2 ultrasounds so that if the spinal cord is exposed a c sec can be performed.

I don't think it is genetic and believe it was a fluke/something environmental.


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## justKate (Jun 10, 2008)

Interesting. Two days ago I took DD to the pediatrician and mentioned a spot on her tailbone that sort of goes in (but you can see the bottom of it). The doc mentioned that it might be spina bifida occulta, but said that it usually isn't diagnosed unless an x-ray is done for other reasons. I only brought it up because I've been TTC and thinking of spina bifida. Turns out I am pg, so I'm grateful that I've been taking the folic acid.

Katie T, you're in IA too! How strange. How did you and your sister get diagnosed, if you don't mind me asking?


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## Katie T (Nov 8, 2008)

As long as I can remember I had back pain. My mom said I started complaining about it when I was around 3yo. She brought it up to my dr when I was in middle school and it is in my records that he noticed a deep sacral (sp?) dimple when I was born. I was refered to Ia City and had lots of tests run. I am missing a vertebrae and a half in my back and my muscles are not attached where they should be so my belly protrudes. I was on anti inflam. pills and took myself off of them when I found out I was pg with DD1. I had the most severe pain ever the first trimester of my pg. But the weirdest thing is after that I have had no pain.

I think my girls will get diagnosed as well because they have the dimples and budda bellies as we lovingly call them when they are toddlers. My DS does not have the dimple or protruding belly. My sister had pain as well and since I had already had tons of tests they "knew" what to look for and hers was a one day thing. She has not had the pain as bad or long as I did. Hers was a short lived thing.


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## justKate (Jun 10, 2008)

Katie T, thanks for the info. Glad to hear the pain subsided, too. I really appreciate it.


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