Wednesday, October 18, 2017

spina bifida awareness - pt. 2

Back at it again with some basic spina bifida facts to tuck away in your brain. The cool thing? These are applicable to all! 

Yes! Any woman! The thing about spina bifida is that it is considered a multi-factorial condition. That's a fancy way of saying that they don't usually know what has caused it. There is a genetic link (though if you have SB in your family you'll know) but most causes are completely out of the blue. Like Eliza! 

It's super important that women who could potentially become pregnant take an appropriate amount of folic acid. This is something that should also be included in any prenatal vitamins! By taking that small amount, you will reduce the chances of having a child with a neural tube defect (such as spina bifida or anencephaly) by 70%!! Think of how impactful that could be if all ladies knew this! 

Spina bifida defects take place within the first couple of weeks of pregnancy. That's why it's so important to be on top of this ahead of time. Typically when you find out you're pregnant, it's much too late. 

This is always the hardest fact for me to share. To be aware that the majority of babies with spina bifida are never allowed a chance at life is absolutely crushing to me. 

A large reason this statistic is so high is because realistic information about spina bifida really isn't out there. Most mothers see a high risk fetal specialist to receive a SB diagnosis for their child, and unfortunately, many of those professionals paint a very bleak, uneducated picture of what life with a spina bifida kiddo is like. Words like "poor quality of life", "vegetable", and "forever depending" are tossed around. And termination is often placed on the table as the best option. 

I think you all have been around my girl long enough to have a taste for what spina bifida life is really like. Is it some extra appointments? Maybe some surgeries? Yup. Is it a few alternate ways of doing life? Yup.  But more so than anything else, Eliza is a normal, happy, well adjusted little girl. She can do anything she wants and be anything she wants. She is smart and sassy and fun! 

I'm praying hard for a day that simple posts like this and every day interactions can change the hearts and minds of the ignorant folks that make a 65% abortion rate a reality. 

Tuesday, October 10, 2017

October and Spina Bifida Awareness

Hi friends! October is Spina Bifida Awareness Month!

It's an awesome time to remind folks what spina bifida really looks like. i.e. not something horrible and ugly but rather an awesomely cute little girl on the left side of your screen there!

So today... some basics!

Spina bifida is considered a birth defect. It takes place in utero typically before a woman even realizes that she is pregnant (week 3 or 4). And spina bifida is permanent. There are surgeries to repair the defect, but science has no created a way to regenerate the nerve damage lost. So, if your cousin's brother's wife's friend's hair dresser had spina bifida once but is fine now, then she was maybe healed by a guy that walks on water...

Having said all that, there definitely are varying forms of spina bifida. Some are extremely mild and people lead completely ordinary lives! Did you know that 1 in 4 people actually have spina bifida occulta and don't even know it?! Seriously!

However, the most common form is myelomeningocele (my-lo-my-nin-ja-seal) and it is also the most severe form. Bummer. 

Myelo spina bifida means that the nerves of the back are wiiiiide open and receiving full damage until repaired. They are protected by nothing. Unfortunately, this is the type of spina bifida that Eliza has. And her lesion begins at the T12 vertebrae (the last vertebrae in your thoracic area, about belly button level), which is relatively high. From that point down, things are questionable at best, but typically fully paralyzed. 

That's enough facts for now, but let me leave you (today and each day) with the most important thing...

They don't suffer from spina bifida. They aren't defined by spina bifida. 
Having spina bifida definitely means you might do a few things in a different way, and that's okay!
Inclusion is the new cool, friends!