When You Receive A Spina Bifida Diagnosis

by Nikki Nardell for The Mighty
spina bifida
Nikki Nardell

Well, you didn’t see that coming. Odds are you’re a few hectic weeks into your new mommy-to-be glow, and suddenly, you’re told two words: spina bifida. Spina what? You’re probably feeling completely overwhelmed. As if the thought of having a new baby wasn’t overwhelming enough, you’re suddenly faced with all of these issues: the doctors, the screenings, the unknowns, the fear.

But you’ve got this, Mama. Your world may feel like it’s upside down right now, but it will get better. It will get so much better than this. Here are four things you need to know:

1. It’s Not Your Fault

I remember lying on the ultrasound table and hearing the words for the first time: spina bifida. My mind went completely blank. All I could think about were the things I had done wrong in my life. Surely, this was my fault. Did I have too much morning sickness? Did I not have a healthy diet? Did I diet too much in my early 20s? Did I miss my vitamin last Tuesday?

Listen to me, Mama, spina bifida isn’t your fault. All the orange juice and bananas in the world may not have prevented this diagnosis. According to the Spina Bifida Association, there is no single cause for spina bifida. You didn’t do this. Daddy didn’t do this. You shouldn’t blame yourself. You may have been thrown a curve ball, but lucky for this baby, Mommy and Daddy know how to dig deep and stay in the batter’s box and keep their eye on the ball.

2. Enjoy Your Pregnancy

I wish I reminded myself of this when I was pregnant with my twins. For 16 weeks, I was basking in my pregnancy glow. I was carrying not one but two humans in my belly. I thought I was a rockstar.

And then at week 16, I learned one of the twins had spina bifida. I immediately went from rockstar status to compulsive worrier. I attributed every bout of morning sickness, every minute of heartburn, and basically every twinge, to the baby’s spina bifida. I was a complete disaster. I was always tense. I fought with my husband all the time. How could he possibly know what I was going through? I felt completely robbed of happiness. Even worse, I felt guilty. How dare I celebrate my pregnancy with so many unknowns on the horizon?

Looking back, I wish I had done things differently. I wish I could tell myself to enjoy those final weeks of pregnancy, to enjoy those final weeks of having an only child, to enjoy that beautiful time of feeling not one but two babies growing inside of me. But hindsight is 20/20. And while I can’t go back and relive that time, I can urge you not to make the same mistakes I made. Enjoy this time. Rock your maternity clothes. Rub your baby bump with confidence. Smile and, most importantly, relax. This is an amazing time in your life. Don’t let two little words cast a shadow over your moment in the sun.

3. Don’t Try to Figure Out Spina Bifida All at Once

You just got your diagnosis, and you are feverishly Googling it on the ride home from your ultrasound. You’ll spend sleepless nights mentally building wheelchair ramps in your house and wondering if you can replace your staircase with an elevator. You’ll reach out to your local Spina Bifida Association chapter, and John Mellencamp will become your new favorite singer.

A few days ago, your biggest worry was whether or not to paint the nursery a neutral green or go with the standard blue or pink. Now you find yourself trying to correctly pronounce hydrocephalus and myelomeningocele. Stop yourself right there, Mama. You don’t need to become a spina bifida master before your little one is born. You don’t need to have all the answers. Right now, you probably don’t even know what questions to ask. You have plenty of time to learn all of this. First things first, you’re about to bring a new life into the world so prepare yourself for the road of motherhood ahead. The lessons will come in due time. Remember to breathe.

4. You’re Not Alone

Give yourself a minute to digest the news, give yourself a minute to be emotional, and then get your bearings and get ready for your baby. Perhaps you’ve never met a person with spina bifida or any mother of a child with special needs. Their lives seem foreign—and challenging. But I can promise you, you’re about to enter a community of extraordinary people. You’re about to meet little ones who will steal your heart and parents who want nothing more than to help you succeed. You’re not alone in this journey. The amazing people you are about to meet—kids, parents, therapists, doctors, nurses, people in online communities—will give you hope and confidence.

I know where you’re at right now. You’re overwhelmed and scared. You’re unsure if you can handle this unknown life ahead of you. But for every adult and kid out there with spina bifida today, there was once a terrified mother or father standing exactly in your shoes. Someday you will look back at this time and wonder why you were so scared. Someday you will look back and chuckle at those sleepless nights. You may not believe me now, but you will. And someday you may share your story with another mom with that familiar nervous look in her eye.

Hang in there, Mama. You got this. We got your back. Welcome to the club.