Hi guys My Fiance has Spina Bifida

[SO102508]

Hey everyone... My fiance was born with Myelomeningocele, to this day he can walk and talk perfectly normal, but it still scares me because i found out it can be genetic. We're getting married in October, and want to start a family right away. Does anyone have any words of advice or comfort? thank you so much

[Dodger67]

Helo and Welcome!

Go for professional genetic counselling. They will take a complete family history of both of you and be able to give you good advice.
At what level is his lesion? If he walks normally its probably very low (sacral). Does he have continence problems?
You should supplement with folic acid (one of the B vitamins) a few months before you start trying to get pregnant - or even sooner, in fact there's no reason not to start right now. Its cheap, harmless, good for you anyway and does really help prevent SB.

I am an adult male with SB.

Regards
Roger:cool:

[milliondollarcowgirl]

hi S0102508,
i understand your fear! im very new to the spina bifida thing as well. i jsut got married in august, and my fiance has 2 siblings with SB, and he has spina bifida occulta himself, but is unaffected in every way. at first i was very nervous about the possibility of having children with SB, and still am to some extent, but i have been doing a lot of research, and just understanding more about it. so here is what i know:

my fiance and i went to genetics counselling before we were married at the cleveland clinic. the gist of what i learned was that spina bifida is believed to be caused by genetics + environment of the baby (ie... the uterus) + factor X (an unknown factor). so basically, you cant change genetics, but you can change the environment, so the best way to do that is to take folic acid supplements for at least 3 months prior to when you are trying to get pregnant. Because of the family history of SB, you should take more mgs than what they prescribe to just normal women of childbearing age.

I take prenatal vitamins and a folic acid supplement everyday, and we are not trying to get pregnant. but they said that unless you are on birth control pills (which im not) you should take folic acid even if you are not planning on gettign pregnant soon, because other methods are not perceived as as reliable as the pill. and the most crucial time for formation of a baby's brain and spinal cord are in the first few weeks of pregnancy--when you dont even know youre pregnant.


also, some uplifting info--the genetics counselor said that it is good that the family history comes from the father's side rather than the mother's, because the environment is in the woman's body. and most cases of spina bifida occur to people who have no family history of SB. and people with SB themselves can produce healthy babies.

sorry for being rambly, i just wanted to tell you everything i know! so i would say, start taking prenatal vitamins/folic acid, and give yourself a few months to get a stockpile of it in your system before you start trying. and congratulations! and dont be too stressed out about it, my sister-in-law has SB and is a beautiful, smart, talented girl. she just cant walk. and, to the people who say to me "so did you guys decide to have your own children, or adopt, or not have any children at all" i want to say, "Did YOU and your husband decide to have YOUR own children?" because there is a risk any time you bring a child into the world that they may have some kind of disability/birth defect, but you will love any child you have and think its perfect.

ok, a novel later, and im done. :)