To Test or Not Test--That Is The Question.

Rachel at 28 weeks

I have thought a lot about where to start on this blog, and after much mulling I decided to begin the way that our journey with Down Syndrome began—to test, or not to test.  Pre-natal genetic testing tends to be a hot topic in the pregnant community, up there with home birth vs. hospital birth, drugs or no drugs and the immunization controversy.  Before I share my experience and opinion, I want to be sure that I am CRYSTAL clear that this is my opinion.  Some will agree, some will disagree—and that’s OK!  I don’t feel the need to convince anyone to step over to my way of thinking because the decision is deeply, intimately, intentionally very personal.  So please, read on with the glasses of compassion and open-mindedness.  Thanks. J

Throughout the beginning weeks of the pregnancy there were all kinds of screenings for this, that, blah blah blah…I honestly didn’t really pay attention to any of them because *of course* I knew that  my baby was going to be perfectly healthy and normal so I didn’t much care what they were checking my blood for.  I do recall at week 12 being asked if we wanted to do the early Down Syndrome genetic testing, which we declined simply because it was an extra appointment in the office and, again, we knew that was something that we didn’t need to worry about.

So, needless to say, it was quite a shocker when I was sitting on that crinkly paper-lined table 10 weeks later being told that the results of the latest random blood test came back with an elevated risk for Down Syndrome—it reported a risk of 1 in 24.  I didn’t think that sounded too high until the doctor informed me that for my age a “normal” risk would be 1 in 900.  *gulp*  The doctor gave me a bunch of pamphlets with pictures of kids with the “Down Syndrome” face on different subjects, as well as a pamphlet on amniocentesis, which she informed me was an option if I wanted to know for sure.  She also mentioned that the amnio did come with some risks that I could read about in the pamphlet, if we chose to go that way.  Otherwise, we could just wait it out and find out after delivery if she had it or not.

This is where the social battles begin on the subject.  I had no idea that so many people had so many strong opinions on this matter!  We asked a number of people what they thought and I think I got every answer possible.  I was told by one well-meaning person that if I was even entertaining the thought of having an amnio then I was basically admitting that I was willing to abort my baby.  I was told that it shouldn’t matter to me whether she had it or not, so why go find out now?  I was also told that the amnio wasn’t nearly as risky as many made it out to be and that it was really the best way for me to prepare. 

Patrick and I prayed a lot about what was best for us, for my body and for this tiny baby being formed within me.  Finally we decided that the right answer for us was to have the amniocentesis done.  Did we do it so that we could decide whether or not to abort the pregnancy?  Not at all--for us that was not an option.  We chose to have the test done because we wanted to be able to emotionally prepare for the arrival of this baby.  Though we had not traveled the path yet, we had a feeling that if the test came back positive there would be a WHOLE lot of emotions to be dealt with and we wanted to get as much of the “negative” out of the way before she arrived.  We did not want her birth day and all the joys that come along with the first few moments of parenthood to be overshadowed by grief.  Further, if it came back positive we wanted time to research, learn, prepare, reach out and get involved with resources.  So, we did the test.

This photo was taken the morning that we went in for the amnio

Obviously, you know how the test turned out and I must say that *for us* having the test done was one of the wisest decisions in our parental career.  As anticipated, we went through a wringer of emotional upheaval in the weeks and months following the results of that amnio—but as time passed, so did the initial sorrow.  As we came to grips the loss of the child we had “dreamed up” in the first 20 weeks of pregnancy, we were able to embrace the beautiful new dreams for the baby in my womb and become excited in a plethora of different ways for her very special arrival.  When I was in labor I remember taking a moment to mention to the nurses that we knew our little one had Down Syndrome and were ready for that so when she came out no one would have to do the whole silent-concerned-exchange-of-looks-around-the-delivery-table thing and just be happy with us.  We were ready, we were excited, we were parents of a child with Down Syndrome.

Yeah...it's not my best photo...but it's part of the journey!  Here I am all ready to bring my special girl into the world.

In conclusion—if I’m ever asked for my opinion or advice on this subject by someone in the same boat, I would share my story and why finding out early was the best choice for us.  However, the choice belongs to each person and they may choose another path—which is the beauty of our God-designed free choice.  We are each given a journey to experience, and this was ours.