Let’s Talk About It

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.

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4 thoughts on “Let’s Talk About It

  1. Thank you for the recognition, although I feel the need to say that while I am proud to present myself as “the face” here in blog-land, in real life, I have talked to nobody other than just a few close friends. (Some of whom are now less close friends, given their responses.) Which I think only reinforces the point behind the “I am the face” campaign – that we need to talk about this stuff.

    Among all my friends, I only know of two who have in some way been touched by loss or infertility. One lost her baby in a chanceless cord encounter just before birth – so sharing the news was unavoidable – and one has in passing admitted to seeking fertility treatment but didn’t want to discuss it further. Surely this does not mean that I am surrounded by overly lucky, overly fertile people, as much as it may seem that way some days – surely it means instead that my friends are not talking about it.

    I think that the image of pregnancy generally presented is one of ease and risks that don’t have any real meaning, and I fully support your idea of educating and advocating and increasing awareness of what the truth really is, and what exactly is behind those risks. Thank you for sharing this thoughtful post!

    • I struggle with it too. It’s painful to talk about. In real life I don’t give a very educational look into what happened, I usually just blubber something about losing the baby and then there is awkward silence or I’m sorries and we move on. I’m never sure how much people want to know. I’m thinking it is mostly the IF and newly pregnant crowd that needs to be the first to be talking about it. Maybe I could go into the prenatal yoga class I was taking and talk about it.

      In any case, I think it helps to talk about it on the internet where we may not show our face but can represent none the less. The curious can find words written from the heart of real people who have been there. So I think you are the face, or the font maybe 🙂

  2. I completely agree… there’s not enough information out there and not enough awareness. Everyone seems to live in the bubble that pregnancy is bliss and that you always get a healthy baby at the end… at any age ! I wish I knew more a few years ago about what can happen… and agree with you that the word needs to get out there. Love always xoxo

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