My husband has always said that statistics don't matter when it's you. I never really understood that sentiment. I'm a woman of reason, and I've always found statistics reassuring. I get it now.
I've driven myself crazy with statistics, at one time hoping to find one that would offer Sarah a real chance. All I've found is how unlikely this was to happen to her in the first place. Holoprosencephaly (her main but not only diagnosis) turns out not to be a neural tube defect as I'd thought. And it only occurs in 0.02% of babies. Of babies whose only diagnosis is HPE (again not Sarah's case, but it gave some perspective) only 3% make it to term. That means 97% of babies with just HPE die in utero. Of the 3% who survive, most of them are gone within a very short period of time. Those who do survive (babies with a less severe form of the disease than Sarah had) have incredible difficulty. But you combine the severity of her HPE with the other brain abnormalities, and problems in her GI system, and that 3% chance she had just dissapears. Very often HP is linked with one of the Trisomy disorders. We'll have to wait and see if it was in her case. Oddly enough, she got the good end of the statistical roulette game with her facial features. Her face looked normal, when generally babies with HPE have severe facial deformities, consistant with their level of HPE. Only 17% are born with normal facial features with the more severe forms of HP.
All these statistics make me think about another baby, and I wonder, would we want an amnio done? I mean there's a 1 in 200 chance of miscarriage with an amnio which sounds tiny, but it's huge compared to the chances of having HPE, and Sarah had that! It's like the statistic that says you have a one in a 5 million chance of ever being in a plane crash. But if it's your plane, your chances are 100%!
I know that all of the research that I keep doing to understand what happened to Sarah doesn't really make a difference. What happened to her is never going to fit neatly into a little box which just makes sense in my realilty. In my reality my babies are all born healthy! I also know that there are reasons to not rush into another pregnancy. But I just can't help feeling that I'm filled up with the gone-ness of her. And I don't want to be filled up with gone-ness. I want to be filled up with life. I miss being pregnant. I want to hold a healthy baby in my arms, one that no one is going to take away from me. I also know that there are no guarantees in life. And I know that I have to put the welfare of my children in God's hands, because ultimately He is in control and I am not.
I will never again put my faith in the numbers that seemed so reassuring before. I will never again have a carefree pregnancy where I just assume everything will go well. I know that putting my faith where it belongs will be even more of a struggle. But to be honest, I really look forward to trying.