I was asked a really tough question on a "mom" forum today. 
"This isn't a bash but a question I've always wondered the answer to and the answer may help make me a better practitioner....I've known what anencephaly was for a while but what I don't understand, and forgive my ignorance, why, given the 100% mortality rate, would they not terminate the pregnancy and allow you to carry on this pregnancy?"

I answered on the forum and many of you are probably wondering this here as well. We had the option to terminate my pregnancy. We were going to. THEN it hit us, this sweet sweet child living inside of me cannot help what is going on. We stayed up talking ALL NIGHT that night. The following day,  I joined a support group on Facebook and lurked a little and read about their stories. Not one of the women that carried regret carrying. They took pics and met their little ones. Some pass away before birth and some right after.Some live for hours and some live for days. BUT they passed naturally. Some people regret terminating because they will always wonder what their baby looked like. It is not my place to judge someone because they chose that decision. 
Why? Because until you are faced with the hard decision like we had, you don't know what you will do. YES, it is easy to look in from the outside and say " Hey!I would do this, blah bla " Well let me tell you something, when you are sitting in that ultrasound room and they tell you that the Dr needs to see you immediately, and they tell you that your child is going to die because of the condition. You break down. You cry. Your world just came crumbling down on you. IT SUCKS! I hurt EVERY SINGLE DAY. My husband hurts every single day. It hurts our family.
They allowed me to carry this pregnancy because my child is ALIVE. What are they going to do? FORCE me to get rid of my child? NO! I had two options- Go to planned parenthood and terminate ( because this is a catholic hospital they do not do early inductions to terminate) OR Carry this sweet baby. When we told our Dr that we wanted to carry, she was THRILLED!  
We are carrying this baby because we want her to go peacefully. They say that Anencephaly babies do not feel pain, that may be true. They also say that they they can't respond to things. This is where many of us think that doctors are wrong. My baby kicks when I push in on my belly. When we talk and even when I eat!  We cannot wait to meet her. We will enjoy every moment of this pregnancy as if nothing is even going to happen. I am carrying an angel! She will go when she is ready, until then she will be safe inside of my womb then in our arms. 
After reading my blog post, if you know someone that is carrying a baby that has a fatal birth defect or even if they have already had a baby and their child has passed...please think before you speak. Words may be words. BUT sometimes when you don't word them right, THEY DO HURT.

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  1. I just wanted to comment on a couple of statements for you and your readers (I followed your link for the aneninfo fb page).

    First a bit of background . . . my daughter Faith was diagnosed with anen early in my pregnancy. She was a twin. We chose to carry to term not only for the health of our other baby (selective reduction has risks- greater in my opinion than the risks of carrying an anen baby to term) but also because she was our child and we didn't believe it was within us or our right to choose when she died.

    Faith lived for 33 days (1/15/07-2/17/07). I wanted to specifically comment on your statement about whether or not anen babies can feel and if they can respond.

    Our Faith's defect was closed meaning that skin and hair covered her head though her skull stopped at her eyebrow line. And there was a small bubble of clear fluid that was on the very top of her head. We bandaged her head to protect the bubble. When we would change Faith's bandage it pulled her hair (as you can imagine). What do you think she did? She cried. It hurt and she felt it. We only changed the bandage when we absolutely had to because I couldn't stand hurting her.

    She also cried when she was hungry and rooted for food. Since I was nursing her very hungry brother and she had to use a special bottle to feed my husband gave Faith most of her bottles. Well when she was hungry and he would get close to her or come in the room after being gone she would start rooting around looking for the bottle. She knew daddy meant food! Same thing if she got close to my breasts. She knew the smell of my milk.

    I know Faith was not the typical anen baby but her diagnosis was confirmed by MRI before she died. Yes, my baby had anencephaly and was missing part of her brain but my baby felt pain and my baby was aware at least to some extent.

    I know that this didn't change the eventual outcome of events. But she lived. She was not a vegetable. She was a baby. My baby. For those that just don't understand why we choose to carry to term please consider how you could number the days of a three year old diagnosed with a terminal illness.

    What if you knew when in utero that the baby would have such an illness and you knew they would die when they were three. Would you terminate? Or would you treasure the three years you get to spend with that baby? How is it any different for us. I got thirty-three wonderful days with my baby. Others get hours, still others get only their pregnancy. How do you measure the value? Is three years worth more than thirty-three days or thirty minutes?

    Hugs to you and your family as you continue this journey.

    Carrie - Mom to Faith 1/15/07 - 2/17/07


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