I'm part of a group on Facebook called Spina Bifida Fetal Surgery. It consists of mamas and dadas whose children have spina bifida, and most of whom had fetal surgery. Like me. Over the past few days my Facebook feed has just exploded with spina bifida awareness picture, stories, quotes, memes, statistics, complaints, and blog posts. I feel so overwhelmed with all the information. I think, "Oh, I need to like that," and "Yeah, I feel the same way," and "I've got to share that," and "I wish I thought to post my feelings in that way."
How can I best spread awareness? What do I really want people to be aware of anyway? Why does it matter that everyone else is aware? They don't live with spina bifida so why should they care?
Here's why you should care.
Something like 64% of pregnancies with spina bifida are terminated. About 64% of kids like Evan are killed.
Doctors, OBs, other moms who terminated, and false information on the internet tell uninformed parents that people with spina bifida will have a "poor quality of life." They will not be "normal." They will need several painful surgeries. They will have brain damage.
The parents can't imagine causing their child to live such a "terrible" life. So they end their pregnancy and end their child's life.
Does this look like a poor quality of life to you? (You better say no.)
Is our life always easy?
NO! But guess what? It's not easy for anyone--with or without spina bifida.
Are there challenges we have specific to spina bifida?
YES! Evan had brain surgery at 3 months old. That's kinda scary. But guess what? I have two cousins who had heart surgery as infants. That's scary too.
What does spina bifida really look like? That's hard to answer. Some people are cathed and get frequent UTIs. Evan is not currently cathed and has had zero UTIs. Some people use wheelchairs, some walkers, some orthotics, some nothing. Evan uses a walker and has a goal to take independent steps soon. Some people have shunt surgery. Evan did. Many of his friends didn't. Most people have developmental delays. Evan sure does. Delays in gross motor, fine motor, speech, cognitive, social/emotional... (am I missing any areas?) Everyone avoids latex in an effort to prevent a latex allergy which is common to people with spina bifida. Many adults can live independently. Some get married and have children. Evan isn't there yet. :)
So what does spina bifida look like? What would I want my newly diagnosed, terrified mamas to know? I want them to know that I am happy. And Evan is happy. And people who meet Evan get happy. And I guess Evan isn't "normal" but hey, who is? Most of the time I feel like life is normal. Going to therapy is normal. Bringing along the golden walker is normal. Understanding medical terms like hydrocephalus and heterotopia, and abbreviations like SMO/AFO is normal. Discussing bowel management programs with strangers online is normal. And quality of life? It's what you make of it and ours is amazing.
My Facebook friends have really been showing me over the past few days what spina bifida looks like. Search #embracethebif on Facebook to see "This is what spina bifida looks like." For me, this is what spina bifida looks like. We embrace the "bif"--spina bifida.