This blog was started as a way to work through the grief of losing my baby March 9, 2011. I found reading stories of other women comforting while I've been going through this and hope that I can help anyone else experiencing the same thing.

Monday, April 4, 2011

Statistics

Mark Twain was the one who was credited with the saying "Lies, Damn Lies and Statistics." I've been obsessing over the statistics like you wouldn't believe.

When I got pregnant with Bear I was only a tiny bit worried about age related problems. I take care of myself, don't drink excessively, don't smoke, I exercise and I'm generally pretty healthy. I just didn't think it was anything to worry about. I even looked up the difference in odds of having twins or a baby with Down Syndrome. The odds of twins were 1 in 89. The odds of a baby with Down Syndrome were 1 in 350. Yeah. I was more likely to have twins than a baby with Down Syndrome. So why worry?

Fast forward 5 months. I was the 1 in 350. My baby had Down Syndrome. My baby died in utero somewhere between 17 and 19 weeks because of complications from Down Syndrome. So let's talk about odds now.

1 in 350. Let's do the math and turn that into a percentage. 1 divided by 350 = .28%. Read that number again. .28% is not a very big number. If you were given odds of .28% for just about anything you would probably not be too worried. If someone told me I had a .28% chance of getting hit by lightning when I walk outside, I would definitely walk outside. The odds are sooo small. I mean that seems barely possible. Yet, we were the .28%. I guess someone has to be. With all of the billions of people in the world the numbers mean that someone actually ends up as a statistic.

What is most frustrating to me is that after having a baby with a chromosome problem your odds actually go up not down. Doesn't it seem like once you become the bad news statistic your odds would go down in the future. It doesn't work like that. My odds of having a baby with a chromosome problem are now 1%. So it went up from .28% to 1%. So now instead of 1 in 350 my odds are 1 in 100. It doesn't seem too bad does it? But once you are the 1 in 350---1 in 100 seems like an inevitability to me. Well of course I'll be the ONE. Someone has to be right? It was me last time. Why won't it be me again?

Now I have all sorts of decisions to make in a future pregnancy. Will I get screenings for chromosome issues? Will I get diagnostic testing for issues? Will I find out if something is wrong? Will I be able to relax and just enjoy my pregnancy? Will I enjoy my next pregnancy if I don't know for certain if the baby has chromosome problems or not?

I'm 35 and this was my first pregnancy. What are the odds of that? Did I become a statistic because of my age? Was it just a random fluke? Girls in their early 20's have babies with Down Syndrome. Not just women over the age of 35. So was I a fluke or was I the age related issue? Or doesn't it even matter?

Will I get a healthy baby? I think after this experience I would take whatever I was given. At first when we were given the bad news that we had received a positive risk screening for Down Syndrome (1 in 10) and T18 (1 in 55), J and I did discuss termination. What if the baby had a T21 or T18 that didn't appear compatible with life? What if the baby would die in utero anyway. This was obviously all before we knew that the baby no longer had a heartbeat anyway and that there were no decisions to be made (at least not by us).

I feel so bad about ever thinking that I could terminate my baby due to health problems. I guess now my opinion is that I would love and nurture that baby for as long as I could. Whether that amounted to 19 weeks in utero or years and years after being born. I will love and take care of any baby that graces my life. I can't stand the idea that I would be the one to choose to take my baby's life. I know that people do make that decision, and I actually get it. It's just after this experience and not having the choice and having my baby taken from me, I know that I couldn't make that choice.

It's been 4 weeks. I should be 23 weeks pregnant now. I should be picking out baby furniture and clothes. I should be making a list of guests for my baby shower. Instead I'm worried about when my period will show up post D & E. It will be 4 weeks since the D & E in two days. My doctor said it could be 4 weeks, 6 weeks or even up to 12 weeks. There is no standard. The body just does what it does. I'm hoping for sooner rather than later. I need 2 cycles before I can start trying again.

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