Interesting findings…

So as I was researching for a new blog post, I decided to check out the wonderful research of the great CDC and their information on Spina Bifida. Wow!! Thinking of how well they handle outbreaks and other diseases it shouldn’t surprise me on how they also handle Spina Bifida.

Under their facts tab they state “We do not know all of the causes of spina bifida”! However then they lead into folic acid and how much you should take while pregnant to prevent your child from having SB. Yes, it says prevent! Is that kind of an oxymoron, or am I reading it wrong?? Now I am not a doctor of any kind, however when a birth defect develops within the first few weeks of pregnancy, how are you sure that it is because of a deficiency of folic acid? They do not post the folic acid study on their website, however I would love to know if you have tested every mother that has a child with SB to determine this prevention method during the first month of their pregnancy. My opinion is they throw this at women of bearing age a little too much. there is more to developing SB than folic acid. I cannot wait to shake the hand of the geneticist whom discovers the true cause of SB.

My issue is that if you, meaning a doctor, tells a new mother that it is totally her lack of sufficient amounts of folic acid caused her child to have SB (which they do quite often) it is absolutely damaging to this new mother. Especially if the mother has no idea what SB is let alone what she is already feeling because they have rushed her baby off to another room. Spina Bifida is not covered fully in medical school unless you specialize in neurology and neurosurgery. It is covered slightly more in the OBGYN and pediatric field but not like the neuro fields.

My next issue with this CDC site is under the Living with Spina Bifida tab. Here are their links:

Newborns and Infants(http://www.cdc.gov/ncbddd/spinabifida/infant.html)

Toddlers and Preschoolers(http://www.cdc.gov/ncbddd/spinabifida/toddler.html)

School-Aged Children(http://www.cdc.gov/ncbddd/spinabifida/school-age.html)

Adolescents and Teenagers(http://www.cdc.gov/ncbddd/spinabifida/teen.html)

Young Adults(http://www.cdc.gov/ncbddd/spinabifida/adult.html)

Now can you tell me where the Adult tab/link is?????????? Hello, anyone??? Now I am starting to understand why all these young adults on Facebook have a negative outlook towards their diagnosis!!!! Then they direct you to the SBA for support and information, which is an organization that focuses their primary attention on the youth with SB and has no real information or support for adults with SB.

Also their articles and key findings tab (CDC website) has mostly to do with babies to young adults with SB. It’s almost nauseating because on their home page they want to develop a national SB registry. Now I understand how this would help future studies and SB patients, however I don’t know if I really want this group of people to keep tabs on me. Just kind of creepy!

I think my whole point of this particular blog post, is I’m glad I didn’t have access to the internet (well didn’t have internet) when I was growing up. I think if I did my outlook on my life would be totally different and I don’t know if I would have ever been able to talk about having SB as openly as I do now. The stuff out there is not all correct nor does it really give you information about all of those that live with SB. I pray one day that it does but then again it is the CDC and government funded!!!