PTSD + Prenatal Screening + Science + God
It has been two years since a test result that launched me into the most horrific ten weeks of my life, and here I am sitting in a laboratory about take another one. Today’s prenatal screening test appointment has been on my calendar for weeks and honestly it hasn’t really caused me much stress. That’s until today when I was sitting in that cold grey chair getting my blood drawn and the feelings of fear and confusion started to flood back. I puked in a brown paper bag while I watched the blood fill clear tubes. I’m not sure if I puked because that’s somewhat normal these days or if the thought of getting a bad test result came rushing back from the last time I went through this process.
About this time two years ago I was taking a similar prenatal screening test for my son Miles. I think a lot of women go into these screenings blissfully naive. For most of them, that’s probably better. Chances are they will get a good result. If they don’t and they choose to test further, still chances are that it is a false positive. I knew my chances for almost every condition. I have had too many close friends get bad results and see those results confirmed as well as friends that have gotten bad results but have then seen false positives, so I did my research. In hindsight I am not sure if knowing as much as I know now helped me or hurt me but I tend to lean more towards truth and information than ignorance. I like answers. So, two years ago when I got the call from my doctor that our baby had a 1 in 10 chance of having DiGeorge syndrome, I was somewhat surprised but honestly already had a feeling something might go wrong. It was likely my anxiety preparing me for worst case scenario.
It’s a much longer and complicated story from here and you can listen to all of the details on a podcast that my husband and I recorded about it if you want to learn more. To sum it up I got a CVS (similar to an amnio), we found out that Miles did not have DiGeorge syndrome but did have some other micro-deletion in chromosome 1 that they had never seen before. We were immediately told that micro-deletions were really bad. After a ton of tests and ultrasounds, around 20 weeks all of the doctors involved came to the conclusion that Tripp, my husband and Miles’ father, had the same deletion and passed it on to Miles. Before they tested us they told us it was less than a 1 in a million chance that one of us had the same deletion! Because Tripp was normal then most likely Miles was going to be fine, but each person who carries the micro-deletion can carry it differently so they couldn’t give us any kind of concrete answers for Miles or our future children and all of our children will have a 50/50 chance of having it. The sudden onset of anxiety and nervousness makes sense. I probably suppressed a lot of things I went through while I was going through them to just get to the other side.
So here we are now, almost out of our first trimester with baby #2 and I’m getting a prenatal screening and starting a process that could result in so much unnecessary anxiety. I have already been questioned on why I would even go about getting the testing again. I am not sure I have a great answer. Well, my first answer would be, this is my body and my baby and my choice. Of course it’s more complicated than that. There is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about everything in the universe, it’s called Science. It’s the thing that has made me question everything but given me some of the only real answers I have. Science is giving us longer to live and a higher quality of life. There is so much more to learn and in some regards we know too much and too little all at the same time. But that can’t stop us from moving forward and helping the world continue to be a better place. My world mainly consists of my family and a few good friends. But the actual world consists of billions of stories of families and babies and chromosomes and abnormalities and complications and science is the only thing helping us as a whole to figure it all out.
After our testing with Miles, we were a part of a case study that tracked Miles’ progress. They were so astonished that he had a micro-deletion and was normal. Do you have any idea what kind of fire that lit under these doctors and scientists who were trying to learn more about micro-deletions? Sure, I could have not had any of the testing and blissfully walked through my pregnancy that ended with a perfect chubby little baby. Twenty weeks of my life was spent worrying and freaking out while brilliant people dug into everything they knew about chromosomes and DNA to discover a miracle. Meanwhile I joined a group of hundreds of moms who have children with similar deletions and have learned so much from them. Most of their children will never be able to walk or feed themselves. Weekly I get to be a part of little celebrations when their children make progress on a milestone. We celebrate with each other. They celebrate Miles not having to go through what their children have had to go through. They celebrate me. It’s a harsh reality that my story could have ended so differently. The research and the information is moving us toward something; Something that is so much bigger than just me and my story. I don’t want to belittle the value of one life. I love Miles with every ounce of who I am. I would die for him without thinking twice. And that’s what I think life really is supposed to be about. Loving at a level that exceeds your selfishness that makes life just about you.
For those of you reading that have known me, and know that I grew up as a Pastor’s kid, I’m sure you are wondering “Where does God fit into all of this testing.” My view of God has definitely changed over the years. I think that my view of God has expanded. However, if you went to my Baptist church from when I was a kid, we may not see eye to eye on theology. But I promise you that God is not left out of all of this. I think he is everywhere in it. In the Doctors, in my husband, in my child, in the science, in the pain and the joy… he is all of it. And while I might pray for the things that I want and desire for our children and our future, I don’t pray thinking that God is changing any of that as much as I just think praying is changing me.
Today after leaving my appointment I sent Tripp a text and told him that I thought I was having PTSD. He told me I should try to find ten minutes today to be quiet and reflect on the good that came from last time. (I married a smart man.) So, I want to share all this in the hopes that someone who might be going through similar things feels like they have someone on their side. Or that if someone reading this isn’t sure what to do and is struggling with whether or not to screen or do further tests, you aren’t alone either. It’s confusing and scary and there is not one right way. Life (especially as a mother) is precious and so fast, and there just isn’t enough time for judgement. Do your research, find a doctor you love, take the time to seek out people who have been through similar things. And last, if you have strong opinions about these types of decisions, I encourage you to choose grace. It’s a safe bet to assume that a Mother is trying to make the absolute best decision for her family. The weight of carrying it all can be unbearable, there is no room for added pressure. Let’s support each other, even in our differences, and keep celebrating this life.