Ok, I realize October is almost over by now, but this has been bugging me, so I have to say it. October is Breast Cancer Awareness Month, so for the past three weeks we’ve all been walking past big pink displays in the groceries stories and seeing our beloved NFL players wear pink shoes and gloves as they play. I need to be careful how I word this next part, because I do care deeply about a cause like breast cancer that has so strongly impacted so many lives. But we are aware. And as it turns out, October is the “awareness month” of more than just breast cancer. Maybe some of these other causes could get a turn in the spotlight?
Every time I walk by a pink display, every time Susan G. Komen’s name pops up on my TV screen, part of me is glad one issue is getting so much support, but another part wants to remind the world that there are so many other under-funded, under-publicized causes out there. I try very hard not to be bothered that one issue is getting so much widespread interest and publicity while others go unnoticed. I really don’t want to take away what the breast cancer movement has accomplished; I just wish my cause didn’t have to compete with it for attention, because that’s some tough competition. You see, among other things, October is also National Spina Bifida Awareness Month. Spina bifida has been a part of my regular vocabulary since I was four years old, but every time I say it, most people respond “what’s that?” It’s the reason my brother can’t walk. It’s the reason he’s had more surgeries than I can count. Spina bifida is the reason my family had a skewed sense of normal, why my parents developed a system of alternating nights at the hospital, and one of the reasons why I cried in school on a regular basis.
And it happens to share its national awareness month with breast cancer.
For those who don’t know, spina bifida is a congenital birth defect that happens when the embryo’s neural tube fails to close completely, damaging the spinal cord. The technical term for my brother’s form of spina bifida is Myelomeningocele, meaning the spinal column didn’t fuse and the spinal cord protruded out through the opening in the spine. Babies with spina bifida must be delivered by c-section and are immediately sent into surgery to close the opening in their backs. However, the damage has already been done. The nerves that were exposed to the amniotic fluid are damaged, causing paralysis and loss of feeling below the damaged nerves. My brother has never had any feeling or control from the waist down. He has never walked.
And if paralysis isn’t enough, spina bifida can come with a plethora of complications. Common problems include tethered spinal cord, severe scoliosis (curving of the spine), hydrocephalus (fluid on the brain), Arnold Chiari II malformation (the back of the brain is displaced down into the upper neck area), orthopedic abnormalities, bladder and bowel problems, and severe latex allergies (possibly as a result of the amount of surgeries done with latex gloves these children experience at very young ages).
My brother somehow avoided an extreme latex allergy, but otherwise, he has all of the above. I lost count of the number of surgeries he’s had somewhere after 25 operations (he’s only 23 years old). At first all the surgeries were planned out well in advance, but when he was 14 the trips to the emergency rooms began, and with them emergencies surgeries. Some of them saved his life, but that begs the question… What if we don’t catch the next problem in time?
It bothers me how much isn’t known about spina bifida, especially the causes, treatments, and life expectancy. I’ll admit that I haven’t spent hours reading the scientific articles about the research being done. All I know is what I’ve seen in my experience, and what I see makes me really uncomfortable. For instance, not much is known about the causes. Most doctors attribute it to insufficient folic acid in the mother, while some researchers say that there’s a genetic element, too, but they don’t know what it is yet. A year ago my sister gave birth to a son with spina bifida. Thankfully, his case isn’t as serious as my brother’s, but it’s hard for me to believe it doesn’t “run in the family” when I have two cases of it looking back at me from the family Christmas photo. It makes me worry for my future children. All doctors can say is that I should take extra folic acid with my daily vitamins, but I promise you my sister was taking her folic acid when my nephew was conceived. Also, there isn’t a defined life expectancy for people with spina bifida, but my family knows at least one teenager that has died from complications. I’ve met adults with the condition, but I don’t remember ever meeting an elderly person with spina bifida. So how long will my brother be around?
I know research is happening. The first surgery performed on a baby still in his mother’s womb was an operation to close the opening in the spine on a child with spina bifida. That is super cool. I just would like to know more. I would like to be a little less scared.
I support breast cancer research, but I don’t think it’s too much to ask that breast cancer share the spotlight with another cause that also desperately needs more research. And while I was thinking about it, I took a quick journey through Google and found a few other issues that share October as their awareness month. I thought I’d close with the issues that jumped out at me.
To my teen readers – you have so much power for good in the world, I’m speaking directly to you now. Please do not let these and other vitally important causes go unnoticed and unsupported. Educate yourself on where your time and money can do the most good. Finally, I know some of you have had personal experience with the tragedy of breast cancer. Please know that my heart goes out to you, and I really am glad such a devastating disease is getting so much support.
In addition to Breast Cancer and Spina Bifida, October is also…
This is far from a complete list. In fact, it’s just a small handful that I found in a quick Google search. Do you have experience with one of these? Do you know of other causes that claim October as their awareness month? How can we give them our support and voice, just like we have rallied around those with breast cancer?