What Kind of Choice Is That??

It's been two weeks since Emilee's death and that's given me a lot of time to think about a lot of things.  It's also given me the time, against my better judgement, to read some of the other blogs and comments that have been posted regarding Emilee, Leila Grace, anencephaly and suicide.  I will never cease to be amazed at how, from beneath the cloak of anonymity, some people will say the cruelest, most heartless things I have ever seen or heard.

I will only briefly address those types of people, because I don't honestly know that I can say anything that will heal whatever deep hatred or pain that they are feeling.  I can only say that I hope one day they will realize the sorrow they cause others with their own despair and begin working toward healing themselves.

More on my mind have been the comments I've seen where well-meaning people have said something to the effect of "If only her family had known the pain that choosing to continue carrying her baby would have caused her, they would have urged her to reconsider."

I want to be very clear here... the choice given to a parent when they find out that their baby has a fatal birth defect is this:  "Your baby can die now or your baby can die later."  Sound harsh?  That's because it really is.

Whether the parents choose to carry the baby to term or choose to terminate, the end result is going to be devastating. The pain that Emilee was feeling, the pain that all of us who have been in her shoes feel...that's the pain from losing a child.  It is not a pain specific to whether we choose to carry to term or whether we choose to terminate. Both options are heart-breaking because either way, all of the hopes that we once had for the little life growing inside of us change. We don't get get to dream about watching our babies grow up, get married and have babies of their own...instead, we are left hoping that we get at least a few precious moments of life to gaze into those little eyes or feel the squeeze of tiny fingers on our own.  That is the pain we face.

If you talk to a community of moms who have felt that pain...rarely will you find one who regrets her decision to carry to term but you will find many more wishing that they had decided not to terminate. (I am not, by any means, saying that all will regret their decision but I have seen more than I can count that I have said "I wish...")

I hope that if someone in your life is unlucky enough to have to face that "choice" that you will support them no matter what they decide.  It is not your job to talk them into one or the other...unless you are a parent of that child, you don't get a say.  At the end of the day, those parents need your support...not your opinions, not your criticisms and certainly not your judgement.

That First Decision

One of the first decisions with which we found ourselves faced was also the most important; I don't know if I would say it was the most difficult though. Basically, we had to decide - what do we about the diagnosis we just received? We will be meeting with a specialist on Monday to discuss our official options, but I know enough to already know what paths we are facing. And really, none of them are especially appealing.

The first option is to elect for an immediate termination of the pregnancy.  We discussed this option and quickly discarded it.  Despite the fact that our baby has no chance for survival, he or she is still our child. We knew that this wasn't a decision that we could wake up and face every morning.

The second option is to carry to term and hold our child for as long as we are able before he or she passes. Obviously this means another four or five months of pregnancy during which I know that we will never get to bring this baby home from the hospital but it means a few minutes or a few hours of holding him or her in our arms.

The third option, and one that we aren't even sure will be offered, is to have an induction done and deliver now.  With this option, there is no guarantee that the induction will work at twenty weeks.  We may end up with a c-section or having to wait to term anyway.

The fourth option, and another one that we aren't sure will be offered, is to carry to term and make the decision for tissue donation.  If it is offered (or if I can find somewhere close where it is offered), this will be our first choice.  As difficult as the next five months would be, we could at least take some small comfort in knowing that our child helped spare other families the pain that we are feeling right now.

Please know and understand that I am not asking for anyone's thoughts or opinions on what choice we should make.  We are the only ones to make that decision and we are the ones who will have to live with that decision for the rest of our lives.  My brother said it best in response to another family member who was feeling helpless - "She isn't looking for anyone to give advice or tell her what to do.  She is just looking for support for whatever decisions she makes."  He couldn't be more right.