Anencephaly - What is it?

There are many things that I regret about my pregnancy with Grace.  One of those things happens to be sharing her diagnosis with others. I mainly use Facebook as a way to keep connected with people that I do not get to see regularly.  I enjoy looking at pictures of my friend's growing families and trying to post more encouraging things, rather than stories about what I'm doing or eating for the day (no offense).  After having our first miscarriage, I was very reluctant to post anything about my pregnancy in fear that I would have to share with everyone that I lost my baby...again.

I actually never enjoyed being pregnant initially with Grace because of the fear that existed from my previous loss.   After hearing her diagnosis, I become even more reluctant (if that's possible) to share my heartache.  I truly regret not sharing her story earlier and making more people aware of what Anencephaly is.  I feel like I hid her because of the devastating news and didn't want people thinking differently of me and what my decision was in carrying her.  Why did I care what others thought?  Why did I not rejoice in the fact that the Lord placed it on our hearts to give her a chance despite all odds.  Why did I not share her story with more people to show how blessed we felt with her?  I feel so ashamed of myself as a mother.

After hearing, "The ultrasound tech couldn't get an image of your baby's head because she has a fatal birth defect called Anencephaly," I wanted to curl up in a ball and die.  My daughter has what?  Of course, I went home and tried to research everything there possibly was to know about Anencephaly.  Naturally, people will tell you NOT to do this because of the graphic images and sometimes inaccurate information, and I get that. I needed to wrap my mind around what this really was. The images did startle me and I was so nervous as to what Grace was going to look like.  Looking back, why did I even care?  The moment I locked eyes with my baby, I didn't even see her with her birth defect...she was perfect, and still is!

Although this is still very hard to stomach, here is what Anencephaly is (according to multiple sites):  Prior to even knowing one is pregnant, between the 24-28 day of pregnancy, the top portion of Grace's neural tube failed to close properly.  This results in partial or the complete absence of the cerebellum part of her brain and the top part of her skull.  Grace had a brain stem, which allowed everything else to function properly.  However, since Grace's brain tissue remained exposed, it was not being protected from the amniotic fluid. Grace was either expected to pass in utero, be born still, or not live for very long after her birth.  She was a fighter and lived for two hours. What a blessing!

My doctor came into my hospital room prior to discharging me. She asked if I would do "it" again.  I'm surprised she didn't motion to help pick my mouth off the ground.  I was in utter amazement that I was being asked this question right after I just lost my baby.  I responded, "Yes, of course.  No doubt in my mind!"  And I meant every single word.

I thank you to all those mamas out there for giving their baby a chance.  Thank you for not playing "God" and taking your child's life before it was intended.  Although the journey was rough, and still is, I am so thankful that He chose US to carry such a blessing.  



Here is a very helpful website to investigate Anencephaly: http://www.anencephalie-info.org/e/index.php


1 comment:

  1. Dear Grace's Mom: I hope you change doctors. I know that sounds cruel but you have a choice in finding a more caring soul to take care of you as you bring future children into this world. Please don't subject yourself to her care (I use that term sarcastically) any longer. Your faith is an inspriation to me. Thank you for sharing your thoughts, feelings and journey.

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