Diagnosis: Anencephaly

By Allison

Previous to the date of May 16th 2011, I had never even heard the medical term Anencephaly. Oddly enough, if one were to not know it was a medically related term, you might find some beauty in it...like maybe it is the one of many stages a butterfly goes through, or a word like epiphany, with an equally romantic meaning. But it wasn't. It was (when first spoken to my inquisitive ears as pertaining to the tiny being growing inside of me) the most horrific word I had ever heard. It may have originally sounded pretty but the definition soon turned ugly.

I looked up at the ultrasound screen seeing beautiful formed feet, so tiny and delicate...tiny and perfect hands, torso, beating heart and then,and then I thought maybe the baby was just super squirmy and not allowing the doctor a good full view of her head. I had made the nervous remark, "she looks like a little alien!" in an attempt to make a joke before the something bad that was coming became bad, but it didn't make the news to come any easier.

I had said what I did in hopes I was buying myself some time while the doctor who I had grown to trust found his bearing and was able to give us a good, clear image of her head. When he looked down and sighed, I knew. I knew my baby was not OK. I have not often heard good news accompany the sigh of a doctor. When he started speaking my mind was racing with the constant thought, "will my baby be OK, is my baby going to be OK, is my baby healthy, will she make it though this and have a good life?" over and over those were the words I could only hear until the doctor said, "anecephaly."

I wanted to think it was something angelic, safe, out of this cruel world. That it was a word associated with all things great. But as he kept talking, I knew that wasn't the case and had to let myself accept that. I squeezed my boyfriends hand harder and harder and sent him silent words that said, "please fix this" as he could fix anything. He just squeezed back with a voice I'd imagined to say, "we will get through this babe."

When we left the doctor's office I begin to feel an inner pain that I will NEVER be able to describe in a way that would ever begin to do it justice. I felt the feeling of an unnatural thing, the mothers ability to make her child better, was not there. But the pain she may or may not feel was mine. I couldn't grasp how to tell the little being in my body that we would do all we could to make it right. I felt that I was failing as a mother.

We were sent to a specialist the following afternoon. The hours before the appointment are a blur. My mind raced. I knew in my heart of hearts that my baby girl was not OK but I still allowed myself to fantasize that she was or would be. I remember thinking that it was a must that her hair be in pigtails for her Kindergarten picture, tearing up thinking of my baby growing up. But the specialist confirmed my doctors suspicions and then we were faced with a decision I never could have dreamt of having to make.

Our options were to abort. That was instantly not an option for me. I could feel my tiny baby kicking and whirling about in my womb and her life meant more to me then that. Meant more to me then a procedure that would not allow her to be as whole and complete as I pictured her to be in my mind. Our second option was to carry her to term, knowing she would not make it more than a few hours at best. I was fearsome that if I carried her to term she would suffer. She would feel pain. And as her mother I wanted her to feel no pain. I would not be able to live with myself if I had anything to do with causing my child pain. I was her mother and would do all that I could to protect her from all things that would hurt her. I was also scared of what it would do to me mentally and emotionally. If I carried her to term and felt her kick and grow, I knew I would love her more and more every day and allow myself to think that the doctors had been wrong and fill my self with hope. My final option was to be induced for labor* and deliver her naturally. I chose to deliver. I wanted to feel the pain. She was worth that to me. Her life was worth that to me.

We were sent home after making our choice and scheduled to come in at 6 the following morning. I had never been more scared in my life. Not only had I never experienced natural labor but I was also trying to prepare myself to bring my baby girl into the world, only to have her leave right away. I don't know how I got through it, but not once did my boyfriend leave my side. When I was hurting, he was hurting. We both delivered her in a sense as the pain was so evident in the both of us. He was my rock. He was my strength, my hope and my rock. I battled with feeling like I had failed him. That I had let him down. That I couldn't even give him a healthy baby. If those thoughts ever crossed his mind, he never spoke of them.

We held our baby girl who died during birth and breathed her in. We tried to memorize her perfect, tiny and delicate features as we knew our hello was goodbye. She was so very beautiful. I didn't want to let her go, but it hurt so deeply to see her born before she was due and knowing I couldn't make her better. I will never forget the face of my daughter. I will never forget her beautiful angelic face. I will never forget the way it felt as she somersaulted inside of me. And though our time was short, I will always be her mother and I will never forget that.

The past week has been the worst of my life. All I have are black and white pictures of my child and her remains in a box. There seems to be no end to my tears and I feel a void that I don't know if it will ever be filled. As crazy as it sounds I miss my baby. I miss all the could-have-beens and I miss the sweet smell I only was able to inhale for a small period of time. Days later as I began to lactate it became worse as it was my bodies way of reminding me that my baby needed me. That I was her survival, yet, she was gone.

At this point I can not say much to lean towards optimism, but I am so much more in love with my boyfriend than I ever dreamt I could be. And if you knew the love I had before the loss of our child, you would not see it possible to love him more. Experiencing what we have together, I have no doubt he is the man I am destined to spend the rest of my life with. He stifled his pain for me. He put his emotions aside to show me strength. He encouraged me, loved me and held me when I felt my world ending. I thank God for him. One day I will give him another beautiful child who we will raise in a house of love. But Harper-Grace will always be our daughter. And we will always love her sweetly.

Three weeks later and when I cry I have to cover my mouth to keep from screaming. I feel gutted and empty and consumed with guilt. I feel stuck in a bubble, I have trouble leaving the house as there are reminders everywhere. Foods remind me of being pregnant with Harper-Grace, putting maternity clothes away...it's all so very hard. I tried to take one day at a time, but that is too much, so I take it hour by hour and just try, try, try to have hope.

*Editor's note: Preterm induction is considered an Induction Abortion and is a medically induced abortion.


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