Friday, May 31, 2013

The Future of Down Syndrome

I’ve sat in front of my computer screen debating just how to start this topic, or whether I even should because I’m about to ruffle some feathers. But this blog isn’t here to magically align with everyone’s beliefs, and I refuse to shy away from controversy just to avoid offense, so I’ve decided to power through and get my thoughts down here. It’s not to make myself feel better, but to educate the public about what I see as an emerging civil rights issue, and one that affects my family deeply. You see, I am and always have been pro-choice, but everything I thought I knew and believed in regarding a woman’s right to choose has been turned on its head since entering the Down syndrome community. I know to most outsiders this may seem like a strange connection, but abortion and Ds are closely intertwined and becoming even more so with the advent of noninvasive prenatal testing.

When I was pregnant with both my boys, I remember being offered first trimester screening, which included blood tests and ultrasounds to check for chromosomal abnormalities. Because we wanted as little intervention as possible, we declined these tests and continued the pregnancies as normal. Had I done these screenings, they would have likely raised a red flag with Quinn and I would have been referred for more tests. For most women, this would be an amniocentesis or chorionic villus sampling (CVS), both of which are invasive, painful, and slightly risky. They do, however, carry a rather high accuracy rate in detecting chromosomal anomalies like Down syndrome or other trisomies. Since we opted out of the first screening, we never detected anything unusual until Quinn’s anatomy scan at 20 weeks. This is when the ultrasound technician noticed his slightly enlarged kidneys and referred us to a genetic counselor. 

Our GC, who was amazing by the way (this is worth mentioning because many of them are not…I’ll get to that later), introduced us to a test called Maternit21. It was a ground-breaking, noninvasive blood test that analyzed fetal DNA in the mother’s blood for the presence of extra chromosomes. It was over 99% accurate and carried no risk to mother or baby, unlike an amnio or CVS. We agreed and waited for the results, which you all know came back positive for Down syndrome. At this point, we were devastated, an emotion that I feel somewhat silly for feeling in retrospect. But we were new to this world and had preconceived and outdated notions about what Ds could mean. And we were left with an agonizing decision: do we terminate this pregnancy?

In the end, we chose to carry our little man to term, but not entirely for reasons you would expect. To terminate a pregnancy at 24 weeks (which was where we were once all diagnostic results were in) meant an induction of labor and a full vaginal delivery. I would see my baby and he would not be breathing. And it would be my fault. I knew that would be an image that I could never erase from my mind, even if I lived to be 102. So I chose life. It was my choice. 

Thursday, May 9, 2013

I Might be Mediocre, But at Least I'm Honest.

Being a parent makes me mediocre at everything, even parenting. It’s something I’ve known for a while, but this is the first time I’m making the confession public. And I would argue most parents aren’t very good at much else either, because being a parent is tough, especially a working parent, and once the day is over and the kids are tucked in bed, all I really want to do is drink a glass of wine in my pajamas and watch mindless TV. Being a parent also makes me a vidiot. And a late-night drinker (although “late-night” for me is 9pm). I guess my attempt to be my best self takes a backseat to making sure my kids’ needs are met; it doesn’t really bother me much because I am happy and my children are in good, albeit sometimes frazzled hands.

So why is it that we parents feel the need to hide our realities from the world, especially social media? Check any mom’s Instagram or Facebook feed, including my own, and it looks like we are running a regular Montessori. The kids are smiling and sun-kissed. There’s paint and legos and fresh fruit dripping from their chins. We play guitar and sing songs and frolic in the mud with abandon, only to curl up together on the couch for a midday weekend nap while the turntable plays Cat Stevens records and we read Where the Wild Things Are in monster voices. Hilarity ensues. All is right with the world. And the photos we capture are as grainy as our memories of these moments will be, because they are only a small and somewhat dishonest slice of the day.