I've never been much of an activist. I tend toward the conservative in most of my views, with a few bizarre left-wing outbreaks. I do vote regularly, but otherwise my political action runs to watching the evening news and bitching about my state's illegal funding of public schools. If that counts. Recently, however, I did something that made me think about the power of the individual. Specifically, me.
A little background. Frequently -- I should rather say, daily -- I am on the Internet researching something to do with Maddy's spina bifida. It's a two-edged sword, as I wrote about in my last post: Often I find information I wasn't looking to find, that causes pain or worry. (For anyone who's wondering, I've confirmed with a geneticist that obese women are twice as likely as normal-weight women to have children with spina bifida. I'm dealing with it, in my two-steps-forward, one-step-back way.)
When I do my research, I usually start with the Google search engine. I will cop to the charge of being a compulsive googler. And I noticed that whenever I typed "spina bifida" as my search criterion, the same advertisement would display in the top right part of my screen. Something like, "Your baby's spina bifida could have been prevented by using folic acid." To add insult to injury, sometimes this ad would display on my own blog.
Once a person has learned to read, she can't help but take in something that hits her eyes. You'd think I and all other readers would become numb to the onslaught of words. But I noticed that advertisement every time I saw it. And every time, I felt a sickening twist of pain.
Nobody knows the true cause of spina bifida, and it's proven that even women who supplement with folic acid (as I did) can have spina bifida babies. To an admittedly thin-skinned new mother, it's offensive to state categorically that folic acid could have prevented what happened to Madelyn. The dark subtext is one of blame: "Attention please, Mommie Dearest. If you'd taken enough folic acid, your baby wouldn't have spina bifida. Click here now." That advertisement was salt in the festering wound of my guilt.
For months I ignored the ad as it jabbed my eyes over and over, like a paparazzi flash bulb. I told myself it was really no skin off my nose because I did take my prenatals and there was nothing I could do about either the ad or Madelyn having spina bifida. But one day, without really knowing I was going to do it, I found myself clicking on the ad, the way you'll scratch a mosquito bite even though you know you're going to draw blood.
The destination was www.spinabifidalaw.com, which purports to be the Spina Bifida Advocacy Network. Sounds very philanthropic, no? But a few more clicks revealed that this was the web site of a law firm inviting spina bifida parents to sue their doctors for not telling them the benefits of folic acid ("Do I Have a Case? FIND OUT NOW!").
Yeah, I know. You see it on TV all the time: Class-action lawsuits, negligence cases, and the like. Let's all sue for something, right? But this was personal. I was outraged. They were causing pain for spina bifida parents -- at least, for one of us -- with their insensitive advertisement, even as they sought to make money off us.
Full of righteous wrath, I did three things. I emailed my sister-in-law...well, I should say I ranted at my sister-in-law...who will soon be a lawyer herself, wondering if, indeed, I had a case against these lawyers, for adding even one jot to my anguish over Madelyn. I also emailed the lawyers themselves, telling them exactly why their advertisement was false and insensitive. And I wrote to Google about the ad.
And then, having irrevocably hit "Send" on these three emails, I commenced feeling foolish. Temper tantrums will tend to turn on you, and bite you on the ass. Why had I let a little advertisement bother me so much? For the next few days I dreaded opening my email, wondering if I'd get flamed but hoping I'd be ignored. (Cindy Sheehan, I ain't.)
My sister-in-law kindly wrote back to tell me that to sue for damages you have to have damages, and not just of the intangible kind. She said I should consider writing to the bar association in the state where these lawyers practice. I was already feeling so shamefaced about my tantrum that I let that slide. Neither the lawyers nor Google ever responded.
But lo! A few days later, back to my Googling ways, I found there'd been a change to the ad in the top right corner of a "spina bifida" search:
Could Your Baby's Spina Bifida Have
Been Prevented By Using Folic Acid?
Holy Eats, Shoots & Leaves, Batman! One little word, moved from one end of the sentence to another, plus a question mark. And it makes all the difference.
Did the law firm or Google change the advertisement because of my email? I'll never know for sure. But now, when I see that ad (and it still pops up regularly), I no longer feel pain. I feel a little glow of pride, and a tiny seed of confidence that I can take care of Madelyn and myself. Whether it's taking on a school board to get Maddy services, arguing with doctors who know loads about children with spina bifida but zip about my baby, or just firing off a few snippy emails, I'm beginning to think I really can do this special-needs parenting thing.
For today, anyway.
That's awesome. To know that your words had that effect -- to know that you stood up to the world on your daughter's behalf -- very cool. Very cool.
Great Post! Like our parents always told us if you do write to voice a complaint they usually statistically believe there are more out there who feel the same way so every time we do write to complain it has an effect. Like you said you'll never know if it was your letter that did it but you can know it played a part.
My family has recently become frequent googlers as well. One of my sisters gave birth to a beautiful baby girl with Spina Bifida. This week, at 3 months, she had the same brain decompression surgery that you have talked about in your blog. We had done our research on the Chiari II Malformation, but all the information we've found just goes through the surgery. We're in frantic search of information about what to expect after surgery. Any help you can give would be much appreciated - whether it be websites or personal experience. You can reach me at email@example.com.
hi there...i found your site through a comment you left on another blog, and i'm glad i did. you've got a lot information here. thank you for compiling all that.
i am pregnant through DE and cautiously happy -- there is a non invasive test on the fetus we need to do before we're in the clear.
anyway, just wanted to say it's nice to find another resource and to read your thoughts about DE.
I chanced across your blog in my egg donor research. I haven't had a lot of time to dig in, but I was instantly pulled in. See, I am a young 21 year old. I desperately want children of my own some day, just not yet. I read an article on egg donation about a month ago and it stirred something inside of me. I know how much I long for children someday; I can't imagine not being able to conceive. Because of that thought, I am very seriously considering becoming an egg donor. I am looking forward to reading more of your posts. If you have any advice for me as I look around and research this more, please pass it my way. (my email is firstname.lastname@example.org) Sincerely, Emily
Hi! I came across your blog and was wondering how things worked out for you.
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