Prenatal Testing: Knowing and Not Knowing
Today baby Tres is 14 weeks in the womb. I’m bumping out a smidge, feeling appropriately frustrated with my wardrobe options, and I spent the morning rearranging furniture (mostly small/lighter pieces, don’t freak out). Seems pretty normal. Earlier this week I visited the lab and sent in some blood for prenatal testing. I’m not sure how to explain how taking this step is both a big deal for me and yet also something I’m not really sure I want to give weight to at all. So I’ll try to sift through these thoughts a bit.
When pregnant with Whitney I didn’t give prenatal testing much of a thought. Tyler wanted us to get information, so we loosely planned to do the California Prenatal screening program. I say loosely because I got distracted and missed the first trimester testing and only picked up the 2nd trimester Quad screen lazily well within my 2nd trimester. It was that screen that flagged us as a higher risk for Down syndrome. At that point we decided to get an Amniocentesis to confirm and voila, we found out. Knowing our baby had a diagnosis was a huge deal. It was challenging, scary, life-changing…well, you can read more about Finding out here if you want.
We decided to do the same Quad screen test when we were pregnant with Dylan. We thought knowing ahead of time made embracing Whitney at her birth so much easier so we opted to test. Also, some say having a child with Down syndrome puts us at higher chance than typical for having another. The thought of having two children with special needs was daunting, even though we had a reasonably good idea by that time of what having a child with Down syndrome was like (Whitney was 7 months old when we found out we were pregnant), but given our experience of knowing things don’t necessarily go as planned we wanted a head’s up. It came back with no indication of Down syndrome (or any other abnormalities).
Now that we are on to our third baby, we have one with Down syndrome, one without, and two amazing and crazy kids for different reasons. I still am glad we knew for Whitney, and almost for that reason alone we are doing testing again. What’s different is that I realize now more than ever that knowing a diagnosis is a piece of scientific data. It may tell me some bits about likely aspects of the future, but there is a whole host of other things that prenatal testing has nothing to do with. Prenatal testing knows nothing about tonight when I held my daughter at her request in front of the Christmas tree and her eyes lit up and she gasped and smiled with glee, my heart filled with joy and I couldn’t help but marvel at how beautiful she is. Testing says nothing about when I put her to bed and she offered “I luff you, Mommy” in the sweetest little voice. It also doesn’t know how attempting to parent a very clever and active “typical” little boy would do everything from amaze me, humble me, and take me to the edge of my sanity. (It is not necessarily true that diagnosis = difficult and “typical” = easy…I’m pretty sure there is no such thing as “easy”). Prenatal testing doesn’t predict lifespan, or injuries, or even experiencing heartache or trauma. It can’t promise my kids won’t be teenage punks or predict whether or not they’ll be popular. It doesn’t predict personality, or creative genius, or generosity. There is so little about our kids that we can control. Genetics certainly make their mark, and our environment matters, but really we are at the mercy of fate, prayer, and our best efforts to influence and interpret experiences as they come.
I have had wonderful mommy moments with each of my children, and they each have driven me nuts. It seems silly on this side to think that a prenatal diagnosis has any bearing on my future happiness or experience, it merely gives me some scientific data. When we found out Whitney had Down syndrome we thought we had been opened to a world to understanding our child and had time to prepare appropriately. It seemed like the most important thing at that moment. But I assure you it’s not. In some ways we knew about our future and what to expect (early intervention, various delays and health likelihoods to look out for). In other ways, it opened a world of freaking out for things we wouldn’t have to worry about – or at least certainly didn’t need to worry about at that point – or for at least months, or years from that moment. I freaked out about how she would survive middle school….let’s be honest, we’re all probably freaking out about how ANY of our kids (and ourselves) – typical or not – are going to survive middle school. There’s not much we can do about it right now, best not to think about it. The prenatal test gives us a little bit of knowledge, but there is so much that it does not know, that we won’t know, until time passes on. And I think it’s that stuff that we don’t know that is really what ends up mattering more.
I fear for our society that often prenatal testing is considered a means of controlling our future – trying our best to make sure we have a happy successful family. So find out early if you’re not having the kid you’re expecting and if so, start over. How are new parents to know that no kid is what you expect? If you’ve thought you’ve protected your kids future by screening for diagnoses how are you to handle the challenges (medical, emotional, academic, accidental) that prenatal testing can’t make sure you avoid? I’m saddened that Whitney’s diagnosis is generally considered reason enough to the vast majority of parents to choose to terminate a pregnancy. So much of my happy family comes from my little girl with the diagnosis. Yes, there are challenges we face related to Down syndrome and there are sure to be more, but the past 4 years have proven that the benefits of our whole daughter – diagnosis and all – outweigh the challenges by light years. I don’t have prenatal screening to avoid certain futures. But I do still like knowing what I can about potential future challenges, even if that information is sometimes overwhelming or brings excessive worrying.
So we tested Tres for prenatal info. This time instead of the Quad screen we did the Panorama blood test that tests for genetic abnormalities with 99% accuracy and hope to find any other potential abnormalities in the 20 wk ultrasound. Of course we hope everything is healthy and normal…but we’re also keeping in mind that there’s so much the tests don’t know.
For those who want to read more about prenatal testing, Amy Julia Becker, a fellow Princetonian with a daughter who has down syndrome has written a lot about prenatal testing here.