When David and I were first told that our baby has anencephaly, we were told that she would never exhibit normal fetal behavior and would not survive. We were told that she was, for all intents and purposes, a vegetable. I was told she would not move like a normal baby in utero and later told all of her movements were merely reflexes. I was also told she would never hear or develop any of her other senses. At barely 20 weeks, I had no idea what to believe. I had felt Brielle move, and it hadn’t felt like a reflex, but then again, I’d just started feeling her move. The week after her diagnosis I attempted to test her ability to understand, I read to her, I smelled flowers, I played her music, and I spoke to her. And here is what I found:
She repeatedly perked up when I said the word Daddy. She had immediate responses to smell, such as flowers, onions, and pineapple (some of her favorite things). She was incredibly quiet and still when I played her some music, her first song she danced to was on Father’s Day to Third Eye Blind’s “How’s It Going To Be.” Later that evening she went crazy dancing to OMI’s “Cheerleader” she especially liked the trumpet part. The more music I played to her, the more I learned that she preferred specific instruments or rhythmic beats. I read her books, and she remained quiet on nearly all of them except for “The Silver Slippers” by Elizabeth Koda-Callan, to which multiple times she would move around and kick me. Since then, we have continued to read to her Bible stories and she has, seemingly, found some more interesting than others. For a week, when David would come home and open the garage door, she would start kicking. She likes to be active for a few hours at a time in the mornings, late afternoon, and late evening, the rest of the day she prefers to sleep…and she’s a heavy sleeper like her Mommy. When I deny her a craving she will kick for hours and will not cease until I indulge that craving. When I wake up from a nap and say something, she jumps with excitement. During our second opinion ultrasound she rubbed her feet together, just like I do as I fall asleep, and just like my Papa did as he fell asleep.
When I asked the second doctor we spoke to about her, this doctor told me all of these things were just reflexes and she laughed at me for thinking that a fetus could respond to a book. And yet there has been plenty of research that shows that a fetus does in fact prefer some stories over others, although they don’t know why.
Based on my time with Brielle, I’ve learned she is not a vegetable, she can hear, she has likes, she’s stubborn, she likes music, and she loves to hear my voice. She even knows when I am speaking directly to her, she kicks in response to some of the things I say, I don’t understand it, but this is what I’m observing. I’ve seen my baby girl’s head twice, and each time it was missing a skull. There is no doubt that she has anencephaly. What I doubt is how well the medical community understands this disability. Am I missing something? Could this all just be a reflex? I find my personal doubts hard to believe as I feel her now moving to one of her favorites by The Killers “All These Things That I’ve Done.” Why do I feel all of these things and how is she so cognizant, if she is lacking a brain? And why can’t anyone save my baby? She is so sweet and gentle, why does the medical community not find her worth saving?