One thing that hit us hard about our baby’s diagnosis is that we were completely in the dark. We knew what downs syndrome was but we didn’t know it was a trisomy or even what that was. We were prepared to deal with anything, to raise our child as long as we could raise a child that wouldn’t have to endure insurmountable suffering. I really thought that if I made it to the second trimester without miscarrying that we would be ok and could handle anything else that happened.
My midwife did ask if I wanted a first trimester screen or a quad screen. When I asked what that was she told me it was to test for downs and two other syndromes that were similar but rare. She did not say what they were or that they were fatal! I thought I was turning down a test that would tell me I had a downs baby and I knew the information wouldn’t change my decision to have the child so I turned down the test. She reassured my decision by saying “that’s good, most of our patients don’t.”
Now that I have had a pregnancy diagnosed and terminated for tri 18 I have looked back and gone through the gamut of what ifs. First, I was mad that the midwife didn’t tell me more about the test or the possible outcome. Then, I was mad at myself for not looking into the test and learning more before I turned it down. But now I have come full circle and I still think the test results wouldn’t have been enough to end my pregnancy. Because I didn’t know what I know now, and what I know now is that I went as far as I could. A test telling me that I had a 1:5 chance wouldn’t have been enough, an amnio telling me for sure my baby had it wouldn’t have been enough. I would have always wondered if somehow my baby was going to beat the odds. It took an ultrasound and a confirmed list of problems my baby was already facing for me to make that impossibly tough call.
Partly this is just the person I am. But part of it I think is that I had no idea. I had no idea what trisomy 18 was or what it meant or that it even existed. I had never heard of this terrible possibility. We don’t talk about these kinds of things. Even as common as miscarriage is, women don’t talk about it. And I think it should be talked about. I don’t think every pregnant woman should have to take a detailed, nightmare inducing class on all the things that can go wrong with a pregnancy. But I think there should be some awareness, an honest look at what the reality is. Just as I advocate for people to learn about their bodies and the many ways infertility can affect couples, I want to advocate for potential parents to be informed, to know what is out there. So when they are asked if they want a particular screening or test they can reply with a yes or a no and have the confidence to feel good about their choice and not have to rely on what the stinky midwife says.
I was inspired to write this post because I was intrigued by the badge on Elizabeth’s blog. When I clicked on it I was taken into a whole world of people that also want to get this message out. Thanks Elizabeth!
I am the face of loss.