By Shanna Smith
Big ol’ belly, fragile emotions, glowing skin, interesting cravings, aching back, joy, indigestion…no, I am not describing your crazy Aunt Morine.
Pregnancy. It is quite the unique affair.
I have experienced pregnancy four times, and each had its very own script. My first pregnancy was so delightful, and I am not being facetious. I was annoyingly happy and felt better than ever. My second pregnancy was slightly less delightful, due to terrible heartburn, but still pretty wonderful overall. The third pregnancy was full of nausea and ended with miscarriage…the deepest pain I have ever felt, a pain that left me with absolute certainty that I would never again risk having such an experience.
So, my fourth pregnancy came after much prayer and healing and filled me with emotional reserve for the first trimester. Each symptom and discomfort of this pregnancy brought a gentle joy and appreciation as they were simple reminders that this baby was still growing inside of me.
But this pregnancy would prove to be very different from any other…neither delightful nor the grieving pain I had felt before, but somewhere in between and all around those.
At 23 weeks pregnant, I was scheduled for an in-depth ultrasound. I was 30 years old at the time, and that, coupled with the previous miscarriage, put me on the close-watch list.
But I had become confident that this pregnancy was a healthy one, so my husband and I wanted to share the experience of the ultrasound with our 4- and 6-year-old children. And what began as a beautiful family moment quickly became a life-altering discovery.
As we all oohed and ahhed over the blobs that resembled body parts of our sweet, precious, growing baby brother, I started to notice the tech was paying close attention to the baby’s head and feet, taking multiple measurements and pictures of each area. I pushed aside my fears and chalked her actions up to the thoroughness of this special ultrasound.
We soon found out, though, that there was cause for her behavior. Our doctor informed us that our baby’s head was slighty malformed—lemon-shaped—and that there was evidence of a build up of fluid in the ventricles in his brain (a condition called hydrocephalus). Furthermore, his feet seemed to be clubbed.
Not wanting to cause unnecessary worry, the doctor did not list out all possible causes of hydrocephalus, as the symptoms could be as simple as fluid levels that would adjust on their own or they could be as severe as spina bifida. We were scheduled to meet with a genetic specialist for further testing two and a half weeks later; but, in the meantime, I turned to my best friend/nemesis: Google.
My head was filled with so many possible causes and diagnoses by the time we saw the doctor. My husband and I had prayed fervently for healing, and we went in that day with confidence that we would be leaving with much lighter hearts, having discovered that our baby was, in fact, so much healthier than we expected. I mean, we prayed; we planned this pregnancy; I was taking my vitamins and eating really healthy foods; I was exercising; I was drinking water…I was living sans Dr. Pepper since the day we decided to try to get pregnant! I just knew Google was wrong. Those stories were not mine.
I was wrong. I was ignorant and arrogant to think I somehow controlled life.
We saw the specialty doctor, and he not only confirmed what my OB/GYN told us, he gave us a grave depiction of what our child’s life would be like. “Your son has spina bifida, a neural tube defect in which the spine does not fully form, leaving part of the spinal cord exposed, causing irreparable nerve damage. Your child’s defect is very high on his spine, one of the highest I’ve ever seen. He will not walk; will not sit on his own; will not have bowel or bladder function; may not talk, breathe or eat on his own. His quality of life will not be very good. You should consider abortion while you still have the opportunity.”
People ask me what it was like to hear this news. I will tell you that it was unreal, terrifying, and just plain hard to hear. There is a grief with getting news like this. I was in unchartered territory in my life. I thought I was too prepared for this to happen to me. I wasn’t taking this pregnancy for granted. I was appreciating the morning sickness and feeling genuine gratefulness with each sleepless, indigestion-filled evening. That should mean something, right? Maybe earn a stress-free, no-mishap pregnancy this time around?
Learning that my child had spina bifida, honestly, felt scary, unfair, and bigger than me, initially. I also felt shame, but not of my son or his disability; that is so very far from the truth. I felt shame because I—like so many other mothers—wondered if I caused this defect for my child. There is a guilt that comes with this kind of news. What did I do to cause this hardship for my baby? I analyzed every choice I had made over the last year, and I second guessed every choice I made every day after.
I was asked about 50 zillion times if I had been taking folic acid. Yes. I had been taking prenatal vitamins since even before conception. Had I been drinking or taking recreational drugs? No. Nothing at all. Even still, the fact that these questions were asked of me from some nurses, researchers, friends, and even strangers, whether for good reason or just out of accusation, made my heart fill with guilt. It was obvious to everyone else that I had done something to cause this, so I must have.
This was a lie that pierced my heart to the core and still rears its shaming head from time to time. God reminded me (and reminds me still, when I need it) that I am not in control. He is the Author and Creator of Life. He created this child in His image, with a purpose and plan to prosper. God brought healing to my heart, peace to my soul, and replaced worry and guilt with joy and excitement.
Over the final weeks of my pregnancy, we returned many times to our genetic specialist for close monitoring. We read mounds of material. We received encouragement, occasional discouragement, advice, and support. We prayed. A. Lot.
We prayed with peace now, though…not just for healing. We prayed for God’s will in our son’s life and in ours, without our own motives driving our words, with the knowledge and understanding that our sovereign God had our son in His hands all along.
And God surprised that doctor when our beautiful baby, Sawyer, was born with a lesion that was almost as low as it could be. Sawyer was not healed by the world’s standards, but was made whole and welcomed into our lives with joy and excitement.
God continues to surprise us in our journey, not just in how He works in our youngest son, but how He has changed the perspectives, hearts, and character of the rest of us.
Spina bifida brings challenges, but the greatest personal growth comes from the biggest challenges. And I am so very grateful for the beautiful blessings this life has given us.