Monday, January 26, 2009

My thoughts on anencephaly

According to the scientific/medical community babies with anencephaly are blind, deaf, unconscious, and unable to feel pain. They believe that breathing and responses to touch and sound are just reflexes. Don't assume that this is what I think also. I don't believe that babies with anencephaly can't see or hear. I don't believe that they are totally unaware. I do think they can feel pain. I don't believe that when they move in response to touch or sound that it is just a reflex. The word anencephaly itself means "no brain". This is really a false statement as many anencephalic babies have some sort of brain tissue present. There is so much that is unknown about anencephaly. I think most of what is known about these babies are just "best guesses". The human brain is an amazing thing. There are people who are missing half of their brain but are still able to function. Why? Because the rest of the brain takes over the functions of the brain that is missing. So why can't this be possible for babies with anencephaly?

It is a fact that most babies that are diagnosed with anencephaly are ultimately terminated-around 95%. The thought of this is just so unbearable. Are the lives of these babies worth any less than a baby who is "normal"? The question of terminating never even entered my mind when we found out about Carleigh. Why would I choose to end the life of someone I love very much? I wonder how many parents are pressured into ending their babies' lives when it's not what they really want. So many doctors and people think it is best to terminate the pregnancy because of the outcome. Why is it best? Carleigh is no mistake. She is God's plan for me and I faithfully chose to accept His plan. So many others reject God's plan for them. I wonder how many of those families regret their decision to terminate. Out of all the stories I have read and people I have encountered who have carried to term not one of them has ever regretted their decision....NOT ONE!!!! They cherish the brief moments they spend with their baby and wouldn't trade those moments for anything in the world. I'm not judging those who made a different choice than I because I know that no matter what decision is made it is a difficult one. I think it is a decision often made in haste and with no support. I find it so very sad.

Even today babies with anencephaly are thought of as monsters or aliens. (Can you believe that!?) They are far from these things. They are blessings!! Just because they are not "perfect" or "whole" does not mean that they are not beautiful. They are very precious in God's sight and in mine. I wish very much that Carleigh did not have this defect. I wish that God would perform a miracle and heal her. But I also know that God can do great things through Carleigh and through me. I've accepted His gift graciously and without question. How can I not question God? Because I know that He knows better than I. He sees the bigger picture when I can't. I will never get all the answers I want here on earth. So why torment myself with 'what ifs' and 'whys'? All I can do is be the best mommy I can be to Carleigh while she is with us. I won't lie-it hurts. I have my moments when all I want to do is cry. I think any mommy would cry for their child.


Betty said...

And that last paragraph is why you have not completely lost your mind over all this. Yes, it hurts. Yes, it's hard, but you understand why. Not the exact why, but you trust that God is in control.

You know, I have been reading a lot of women's stories since Carleigh was diagnosed, and I cant help but wonder if the medical world isnt saying the things about anenchephalic babies just to make it "easier" for parents and family. Like they think it helps if you believe your baby is numb and not in any pain...describe it as a vegatable and maybe they will just terminate. That is the impression I get.

Lisa Dean said...

I, too, have been following yours and others blogs about this disorder and others. My oldest daughter will make me a 1st time grandma this summer. As of now, her pregnancy is normal. We thank the good lord for that. My cousin, Rachel Elliotte has gone through tremendous loss in the past year losing her two daughters. She has made me realize how precious life is be it in the womb or after the birth. no matter what, it is still a life the parents along with God has created. I applaud everyone strong enough in their faith to trust their Angel with God.
With that being said, for the mothers not sure what to do, I wish there was a way to educate them in all of their options, termination not being an option. If they are unsure of things, one thing they can do is to donate their precious organs either to another baby that can't ultimately benefit or to research to find out what, how, & why.
You are an awesome mom to give Carleigh the life you have given her, which began at conseption. You are in my prayers everyday and night. Lisa

bobbi318 (cafemom) said...

Holly, I am constantly reminded of a part of the poem you put on this page that said something to the effect of "I will not be part of deciding your death". I think that is basically what it comes down to is that as parents we do not want to outlive our children. Accepting that one may have to is something that you can live with, not making the choice to end the child's life.

Nothing can take away the pain & hurt you feel, but I am still praying for Carleigh & for your strength.

stitchndeb said...

I love what you said. You are such a good mom!!

Heather said...

I agree with with this completely. Very well put, Holly.

Anonymous said...

I can't tell you how proud of you I am. I read your words and swell up with pride. I know I had such a little part in your upbringing and Spiritual education, but you obviously have taken that education and truly applied it to your life and spirit. You are touching so many lives through this blog and even encouraging me, God still comforts, leads, cares...
I love you Holly ~Dawn

HP_Twilight_Freeek said...


You amaze me with your strength in every post. I can only pray to be as strong as you are during my next pregnancy.

I agree that these doctors shouldn't be pressuring their patients into abortions or anything, and I am so proud that you have chosen to be one of the few, rather than the many. Anencephaly is so unfair and you have seen it as a beautiful thing, rather than something that will tear your family apart. I commend you and pray for you daily.

God Bless,


HomeschoolMama said...

Well spoken. Every little baby is a gift from God - a blessing from above. All of our little ones are precious in His sight. You are right to carry your baby to term and give her the full extent of the life God ordained for her. What amazing love - God for you and your love for her. I believe I would do the same. Our children, even those that grow into adulthood, are only ours for a time. They belong to God.

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