Why We Didn’t Test for Down Syndrome
We were shocked when our son, Cedar, was born with Down Syndrome. It was an overwhelming and all-consuming shock if I am totally honest. One that makes me look back on those first few pictures we have and still get choked up sometimes. My eyes were glassy and red-rimmed in those pictures when I should have been smiling and joyful. I still stick by why we didn’t test for Down Syndrome.
I wouldn’t change the way we learned of the diagnosis of Down Syndrome.
I vaguely remember in my early twenties being offered lots of tests when I became pregnant the first time and asking what they were for. I was told that I would be able to have screens for all kinds of genetic issues but being young and healthy I didn’t see a reason for the tests and they did let me know that there were false positive rates.
That right there was what always led me to decline the tests, because I know me.
I cannot handle the worry involved in fearing there is something wrong in a pregnancy. My husband and I have actually conceived 10 children but lost 4 pregnancies. Just the worry going into a pregnancy when HCG levels are not what they are supposed to be or there is spotting or cramping or any other part of a pregnancy that is “not normal” terrifies me. That and I just really want to enjoy being pregnant without the worry that comes with having a test performed and the anxiety of waiting for results.
The ironic thing is that I had the same OB/GYN for all of my pregnancies and she would dutifully offer the testing but follow up her words with…”I know you aren’t going to want it, but there are prenatal tests we offer.” She may have offered more than once with my last 3 pregnancies as I was over the magic “35” mark at that point, but nonetheless she never pushed.
My last few pregnancies were so wonderful as I had committed to being a full time mommy and left my 15 year career as a social worker. I no longer had the added stressors of work life and family life combined and I could fully focus on being mom. My pregnancy with Cedar was no different other than I was much more tired throughout the pregnancy, I attributed that to just being older going into this pregnancy. We made the switch to homebirths and using a midwife and doula after our 4th child was born so even though I continued to see my OB/GYN through our 20 week ultrasound, I planned a more natural approach to our birth.
I did have ultrasounds, I did have prenatal care, and yes, I took my vitamins. I did decline the blood tests that would have likely picked up on Cedar’s little extra chromosomal surprise and I am so glad that I did.
Had I had those tests I know I would have been a mess for the entire pregnancy.
I had a taste of that when our 20 week ultrasound made a tech think Cedar had clubbed hands and feet (he does not). We were referred to a Level 2 ultrasound/anatomy scan where we were told that all looked good and there was no cause for concern, there were not clubbed hands and feet or any other anomalies visibly present. However, that 7 day wait between one ultrasound and the next and the emotional rollercoaster I was on worrying about everything that could go wrong was more than I ever care to experience again. When the high risk OB offered blood tests and/or an amnio due to my age I declined rather vehemently and never looked back.
I am so thankful that God allowed Cedar’s surprise to be hidden until he was safely here in my arms because I know me, and God knows me, it would have been bad.
I declined the testing not so much just because it wouldn’t have changed anything (and it wouldn’t have changed the outcome- we never would have chosen to do anything but give birth to Cedar) but because for me, I didn’t want the added stressors of waiting for results, worrying about false positives/negatives, and so many more fears that it seems when you crack the door open, they flood in the room. Like I said, I know me and I didn’t want to do that to myself.
I know many people say they want to have testing done so that they can prepare but I don’t know if you can ever truly prepare to become a special needs parent. It isn’t a path that any of us anticipate and initially navigating this new path can be kind of hard, however, I was glad that Cedar was my instructor from day 1 and not his diagnosis before I laid eyes on him.
I fully educated myself on Down Syndrome once Cedar was here in my arms and once I no longer had to fret about everything that could go wrong prenatally, he was here, he needed his mama and I was going to do this as best as I could.
We all chose to test or not to test based on our own reasons, I am so glad for the choice I made not to test.
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