Living with Spina Bifida: In Honor of Spina Bifida Awareness Month

October is a celebration month. We celebrate cooler weather, pumpkin everything, and the start of the holidays. October is equally special in our home because we celebrate Spina Bifida Awareness month. For us it is truly about celebration.

Spina Bifida is a birth defect that stems from the neural tube in utero. It occurs when the spinal cord does not close properly. The severity of the defect affects each individual outcome and prognosis. Your obstetrician usually tests for these neural defects around the 20-week anatomy scan, but signs and symptoms can appear earlier in pregnancy or even later in your child’s life all the way into adulthood. The actual neural tube closes before most women even know that they are pregnant (at about three weeks), the reason that it is important to be taking prenatal vitamins or folate daily while in those fun baby-making years.

Some important facts to know about Spina Bifida:

  • Spina Bifida is still labeled as a “rare” disease, but about 2,000 babies are born with it each year in the United States.
  • The three main types of Spina Bifida are occulta (mild), meningocele, and myelomeningocele (most severe).
  • Since the spinal cord is responsible for nerves and function through the body, including loss of sensation in lower limbs, urinary and bowel problems are common. Kidney function is compromised, and fluid can build up in the brain.
  • Genetics plays a strong role, and requires more supplementation of folate (folic acid).
  • Surgery to close the spinal cord is performed in-utero today if the spinal defect is severe.
  • There is currently no cure for Spina Bifida, but treatments to control the symptoms and medical problems that arise from it are available.

Facts can seem daunting, but here is the truth, my truth, our family’s reality. I was born with Spina Bifida before it was a birth defect that was screened for. My parents didn’t get a plethora of black and white pictures of little pea-sized me. A pediatric surgeon saved my life and my ability to walk, something that many born with the disease are not given.

Leading a “normal” life as someone with an invisible illness to the general public is and will be hard. At times, Spina Bifida means weekly doctor’s appointments and days of fatigue that cannot be cured with caffeine. It means having pain that carries into the night and prevents sleeping of any kind. It means never being able to be without premium insurance because co-pays are expensive.

Up until a few years ago, I never told anyone. When asked about the huge scar on my back during swimsuit season, I just told friends that I had back surgery. I grew up ashamed of the battle I fought daily. Despite having a great support system at home, I was embarrassed to even talk about it with anyone I knew. All of that changed when I joined the Spina Bifida Association support group online and met other women who had familiar struggles. I met my husband, he fell in love with the whole me, and not the parts I chose to show before that. It was freeing to embrace what I could be because I had Spina Bifida, not despite it.

Fear is hard to overcome when preparing and planning a family. Add a genetic disorder to the cards, and all I wanted to do was fold. We followed all the recommended steps, and in 2013, we welcomed our rainbow baby (our first was an ectopic loss). Our sweet baby came full-term and was perfectly healthy. Three years later, we welcomed our second, a successful VBAC. Spina Bifida forces my mind to be as strong as the body I was given.

Having Spina Bifida has given me a voice to help others dealing with birth disorders, illness, and invisible pain. I have no other option but to be strong and persevere. It has made me stay in tune with my body, a gift that all women need. I may not get that marathon sticker on the back of my car, but I gladly accept the “best mom ever” coffee mugs in the cabinet.

For additional resources, please visit the Spina Bifida Association.

Emily
Emily lives in the hill country with her husband of over a decade, two young children and an array of animals. Texas has always been home but she loves to escape it( and the heat) frequently. Road trips were the excuse to buy a minivan, even though she still cannot park it in the lines. Emily is passionate about keeping our planet clean and it’s citizens happy, and instilling these values to her children. Happiness for herself is eating good food, playing games and quiet time to read, or at least go to the bathroom alone.