Decisions, decisions

So there we were, an hour or two after receiving life changing news, sitting across the table from a genetic counselor. (If you missed my introduction, you can read it here.) She gave us some basic information about anencephaly, including the facts that there is no chance of long-term survival for the baby, but also very few risks to the mother in carrying an anencephalic baby. The main risk for the mother is polyhydramnios, which is the development of excess amniotic fluid and is relatively harmless. Armed with this set of facts, my initial and immediate reaction was that based on our beliefs as Christians, this little beating heart was a life, and we would not make the choice to stop that heartbeat. It was almost an auto-pilot answer, as if I was answering a question on an ethics test. The genetic counselor was satisfied with this answer, and didn't even present us with the other options.


As we left the hospital shortly thereafter, I completely broke down. I can still vividly picture the spot - right at the bottom of the main staircase in the middle Magee-Womens Hospital. (And no, that's not a typo, there's no apostrophe in "Womens"!) Until that point, I had been quietly processing the news internally, but all of a sudden, the enormity of what this all would mean hit me and I literally didn't know if I could do it. I started sobbing right there as we hurried off to the parking garage. It was starting to hit me that this was not a theoretical answer to an exam question but a decision that I would have to live out. Having been pregnant before, I knew the strangely public nature of a pregnancy. Contrary to me telling this story for all the world to read, I am a private person and I knew that this would be a public trial. Unless you're one of those people on "I Didn't Know I Was Pregnant," a pregnancy is not something that can be hidden and so I knew this was not a crisis I could weather silently and privately. I'd also been through labor and delivery before, and I knew it was not a walk in the park itself. Liam had been born only 18 months before, so the pain of childbirth was not just theoretical, it was pretty clear in my mind. And of course this time, the pain of labor would not be overshadowed by its typical reward - a healthy baby.


With those thoughts and many others in mind, diagnosis day and the next few were the hardest of the coming months...dare I say of my life so far. I've heard the same thing from many others who have faced the same impossible situation. It's at this point that you are not only facing a big decision, but are mourning the hopes and dreams of what could have been for your child, and for you as a parent to them.


In all honesty, the next day, I was tempted to call the genetic counselor back and find out the other "options." I was sleepless (and if you know me, that's saying something!), didn't feel like eating, and was unsettled, wrestling over what to do. There was an internal battle between what seemed to be the easy/private way out or what I felt was right. The problem was that there wasn't a "good" answer...


Eric had planned to go away that weekend on a ski trip, but he stayed home with me and we spent our days thinking, talking, praying, and seeking wisdom from a few pastors. We did receive good counsel, but this isn't the kind of situation that someone else can solve or even suggest the correct answer to you. This is when we began to see God's hand at work "behind the scenes" of this story.


One month earlier, on "Sanctity of Life Sunday," our pastor had preached a sermon based on Jeremiah 1:4-5 entitled "I Knew You." When he preached the sermon, I knew I was pregnant, but had no reason not to believe that our baby was healthy. It was a beautiful sermon regarding life - I'd encourage you to listen to if here if you get a chance (the first few minutes deal with some denominational issues, so you can skip that part to get to the good stuff.). The theme of the sermon was that “God knew you, made you, called you, consecrated and appointed you – before you were born”. Listening to this with a growing life inside, I was touched by the beauty of the words and by God’s love and care for even the littlest of us. Of course I had no idea of the significance these words would take in coming days.


So in those confusing days post-diagnosis, one of the things that I came back to was the sermon “I Knew You”. The scripture on which it was based is Jeremiah 1:4-5, which says "The word of the Lord came to me, saying, “Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.”" Listening to this sermon again, it took on a whole new level of meaning. Some of the quotes from the sermon I had heard just a month before:




“Every unborn child in the womb is intentionally formed and personally know by God and is purposefully set apart by and for God”
“Every child is consecrated for a purpose, whatever that might be”
“God is sovereign in the life of the unborn child – He is the owner and maker of all that is”
“The life of an unborn child should be protected, regardless of quality, while he or she has life”
“Practical applications of biblical truths are not something we make up or embrace emotionally – it’s something God revealed to us in His word. We may like it; we may like it not”
"Part of living in obedience is following what God has revealed in His word”

It was amazing how applicable this sermon was to us...you really can't get a more direct message that this! Interestingly, no such sermon has been preached at our church on "Right to Life Sunday" in the three years since then. It was just the beginning of God revealing Himself to us.


There was one other passage that was integral to our decision making - Psalm 139:13-16, which states:
For you created my inmost being;

you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.



When I read this passage, it was just like an arrow in my heart...the thought that kept going through my mind was "Who am I to cut short the number of our daughter’s days?"

The other thought that I kept coming back to was the idea of regret. I knew that if I chose to carry our daughter to term, it would be a hard few months. But if I chose to end the pregnancy, I was worried I would wonder "what if" months or years later. In a few short days of internet research about anencephaly (which I don't recommend googling unless you are prepared to see some graphic images), I knew that although it is a terminal diagnosis, there are babies that live hours, days, and in a few cases, even months with anencephaly. What if our daughter would be the one that lived a day, or a month, or a year? I didn't want to live with regrets over a decision that I couldn't change.


After a few agonizing days, God used these scriptures and sermon and the idea of "what if" to confirm our initial decision –we would carry and love our daughter as long as she had life. I should add here that I'm not passing judgment on others who have decided otherwise, but for us, the decision was made clear. I thought of it this way - if I somehow knew that I would only have a few more days or weeks with Liam, of course I would take advantage of every moment we had left. And so we would do the same with our daughter.



Our pastor often uses this definition of love - “love is giving all of yourself so that the object of your love may thrive”. Carrying our daughter to term was the most loving thing we could do for her – it was a sacrifice of myself (on many levels) for her to thrive. And so we made the choice to love our daughter the best that we could as long as she might have life.


Once we made the decision and it was public, it was as if a weight had been lifted. We began to experience the “peace that passes understanding” (Phil 4:7) It's not that there wasn’t a deep sadness, but my mind truly felt at rest. I sincerely believe that this peace came directly from God.