“Your quad screen results came back abnormal.” Who knew that seven words would dictate and shape the future for my husband and me.
My husband and I married in December 2010. Excited to start a family, I visited my OB/GYN, soon after, and started a regimen of daily prenatal vitamins. After all, we’d read many journals and articles about the importance of maintaining my health for pregnancy. We knew it might not happen, right away, but even when it approached six months, we refused to give up.
When I began to experience daily nausea, in September of 2011, I couldn’t help but grow excited. When a test confirmed pregnancy, we were overjoyed! The next few months were filled with brainstorming names, managing nausea, and well, just enjoying pregnancy.
Things changed a few weeks into my second trimester. While at work, one day in December, I began to feel tightness in my stomach, which eventually turned into cramps. When I went home that night, I decided to stay at my parents to rest. Unfortunately, what I thought was cramps turned out to be what an ER doctor describes as a threatened miscarriage. I was put on bed rest for a week and told that a large blood clot had formed in my placenta; miraculously, despite bleeding for over a week, our baby was determined to stay strong.
It was at that point, during a follow up, the next week, I decided to take an optional quad screen test. I figured, after the scare we had, I may as well take it. Then, our lives changed.
It was three days before Christmas. We were slated to fly out the next morning to California, to stay with my immediate family for the holidays. Instead. I got a call from my OB’s nurse saying we had abnormal test results. “Don’t worry,” she said. “These tests can have false positives.” Yet, she wouldn’t answer me when I asked what a positive meant. Instead she referred me to a perinatologist for an extensive ultrasound.
I called, telling the office about the results and our travel plans, so we were thrilled when they asked if they could see us in less than an hour. My husband and I quickly accepted and arrived in less than 30 minutes.
After waiting less than five minutes, we were seen by the specialist. They took us into a room where several people began doing an ultrasound. All I kept hearing between them were words like “lemon shaped” “definitely positive.” They kept giving us quiet, somber looks, except for one nurse who said, “Would you like to know the baby’s sex?” When we said yes, she said, “That’s your daughter.” She then began to comment on how wiggly she was, and how she wouldn’t cooperate with their machines. I thought, “Everything must be okay, right? Look at her! She can’t stop moving.”
About half an hour later, the perinatologist grabbed my hand and said, “Well, the ultrasound confirms my suspicion.” I asked, “Is she okay?” He then proceeded to tell us that our daughter, the miracle who survived a threatened miscarriage has Spina Bifida with hydrocephalus. But I’d been taking prenatal vitamins, I said. I eat healthy. He kept telling us, “You did absolutely nothing wrong” and “This is NOT your fault.” He continued, “You just happened to be that 1 in 30,000 that this happens to.”
After that, all I remember were words like, “worse case scenario,” “vegetable, “die soon after birth.” He offered abortion, as well. But then something else happened. I asked him, “What’s best case scenario?” After a pause, the doctor said, “Well, she may end up wheelchair bound for the rest of her life” with possible intellectual or learning disabilities. At that point, I didn’t know what to say. But after watching my daughter refused to let them scan her, I refused to give up on her. My husband… well, I wasn’t so sure.
We drove home in silence, and being the pragmatic person I am, I immediately began researching Spina Bifida. Knowing how scary Google can get (I’m a librarian, in case you might not know), I began reading up on SB in medical journals and support groups. Into the late hours of the night, while my husband slept, I read story after story of adults and children thriving with SB, and am forever grateful for the now defunct Spina Bifida Connection website (I believe it’s now on Facebook). In less than two hours, I had people from all over the world reassuring me that my daughter was going to be okay. I finally fell asleep believing them.
The next morning, my husband solidified my thoughts. With tears, he said, “This is our baby. God chose us for a reason. I can’t give up on her.”
With that, we returned to our perinatologist, and told him, “We’re keeping our daughter. We believe, in our hearts, that she’s going to be okay.” Surprisingly, he nodded and said, “Okay. Then, let’s make sure she’s delivered as safely as possible.” For the next five months, he and my extremely supportive OB ensured that our daughter stayed safe, as I was still recovering from the threatened miscarriage and in danger due to the blood clot.
My daughter is turning seven and a half, this month. If anyone were to meet her, they would never guess that she spent her first year of life in and out of the hospital with surgeries and other complications. Today, she’s a brilliant, witty, precocious girl who loves to play sports and sing along to her favorite songs.
Looking back, I wished I had enjoyed more of my pregnancy. Instead I spent the entire second and third trimester waiting for the other shoe to drop, kept second guessing what I could have done to prevent her SB, and refused to tell anyone in my extended family what was going on. As a result, I spent those last months scared, stressed, and fearful. And for what? It didn’t change anything.
Now, if I meet any families or moms pregnant with a child with SB, I beg them to enjoy the pregnancy. Enjoy everything. I’ll never get those moments back, and I wish I had embraced those moments more.
As for your child? Let him or her surprise you. Let him or her tell you what she or he can do. Treat him or her like you would any other child. They can do all the same things—just differently and on their own timeline.
Christopher Reeve once said, “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Yes, it’s not easy, and yes, it’s going to be challenging and yes, definitely exhausting, but your child WILL astound you. Only he or she can dictate what he or she can achieve, not a doctor or a statistic.