Down Syndrome Awareness

You may have noticed the new button I added to the blog recently (and will soon be removing). October was Down Syndrome Awareness month. It's already November but I am just now finding the courage to write some thoughts I've had on this subject. I felt compelled to participate in a small way by sharing with others some of what I've learned this year about this condition. Most of you are already aware of the many months of uncertainty that Jeff and I went through during the pregnancy with Kaitlynn. But here's a recap and some previously unmentioned thoughts during that difficult time.

Warning: long post ahead!

It's no secret that Jeff was finished having kids after Connor. It was the plan all along: after Connor, we were done. But unfortunately, I just couldn't abide by the plan. I had such a longing for another baby. In addition to just feeling done, Jeff had many concerns. So many things can go wrong in pregnancy and childbirth. What if we had a child with an illness or disability? I, of course, always dismissed those concerns. Long story short...another little Courtright was on the way.

At 17 weeks along, I got the dreaded call from my ob-gyn doctor. Every woman knows that your ob-gyn doesn't call you personally unless there is something amiss. Sure enough, the quad screen blood work they performed came back with an elevated risk for Down syndrome. My risk was 1:180, which isn't that high and therefore didn't concern me that much. In fact, if anything I was a bit excited because the doctor was sending us for an ultrasound sooner than expected. All I cared about was that I would get to see my baby and learn the gender. Jeff, on the other hand, was nervous. He immediately assumed the worst.

So we went for our ultrasound appointment, but before the scan we were asked to attend genetic counseling. Anyone who has ever sat through this counseling knows how scary and emotional it is. The whole point is to educate people about the risks and possibilities based on the blood work and other factors like age, history, etc. But sitting in that office felt anything but educational. It was so difficult to digest my emotions as the counselor explained all about Down syndrome and what that might mean for our baby. She stressed that the only way we would know for certain whether our baby had the extra 21st chromosome was to do the amniocentesis. That is the test where they insert a needle into the womb to withdraw amniotic fluid and then get it tested for any chromosomal abnormalities. I knew all about that test beforehand, and to be honest I never thought I would need that test because I assumed the ultrasound would prove that everything was perfectly normal.

Unfortunately the remaining months of my pregnancy were anything but normal. I had about 10 ultrasounds between 17 and 38 weeks, and each one of them indicated "soft" markers for Down syndrome. In addition to the abnormal quad screen, the baby was shown to have an abnormal umbilical cord (2 vessels instead of the normal 3) and the baby's arm and leg (humerus/femur) bone measurements were also extremely short. Each of these were considered soft markers for Down syndrome, but we wouldn't know for sure unless we did the amniocentesis.

Several years ago, my sister was in the same situation with her 2nd pregnancy when her blood work indicated a 1:32 chance for Down syndrome. She was offered the amniocentesis and declined. I was shocked. How could you not get the test to know for sure? I asked her. I could NEVER go on not knowing, I said. Isn't it funny how things change? Here I was 3 years later and I found myself in the exact same situation. And despite these multiple ultrasound markers that continued to show up, I just couldn't get the amnio. With my history of miscarriages, I didn't want to take a chance in harming the baby. But it was more than that. I don't know how to explain it except I truly felt that it was a test of faith -- by getting the test, I would be doubting God. His plan would be revealed soon enough. Sounds so much easier than it was, though. Those months were some of the longest, most anxious, and most stressful I've ever experienced.

During those last few months, Jeff and I largely avoided deep discussions about how we would handle a baby with special needs. I was terrified to address the subject and he was mostly in denial. A week before the baby was due, however, we had a brief conversation about our baby. Jeff admitted that he would be surprised if she didn't have Down syndrome. And I had to agree. Both of us knew that this baby would be loved no matter what. But neither of us knew how to prepare for that outcome.

I don't think I was ever worried about how I would feel if I had a baby with Down syndrome. I was in love with that baby from the moment I learned of her and felt extremely blessed to be given another chance to be a Mom. But I did have great fears about how others would react to her. I was terrified that Jeff would resent her; that her older brothers wouldn't be mature enough to accept her; that others would pity our family and our daughter. I kept a private journal during the pregnancy and more than once I wrote about how I wanted to wrap my arms around my daughter and protect her from any negativity she might be subjected to -- and she wasn't even born yet! The Mother Hen in me emerged in full effect.

The moment Kaitlynn was born, the doctors in the room immediately declared her "perfect." They used that word to reassure me that Kaitlynn did not appear to have the typical characteristics of babies with Down syndrome. Of course, Jeff and I were overwhelmed with relief. I mean, who wouldn't be? But days later it would occur to me how strange it seemed to be given a "perfect" baby, when in fact she would've been perfect with or without Down syndrome. Obviously God had other plans for us and for Kaitlynn, but I admit I've often wondered how different our lives would be today if our fears had been realized.

One of the statistics I learned during my research into Down syndrome is that 90% of parents who receive a prenatal diagnosis of Down syndrome choose to abort their babies. I was truly shocked. It never occurred to me for a single second to consider that option. I said many times throughout the pregnancy, who am I to argue with God if He felt I needed a child with Down syndrome? I certainly wouldn't judge another person who made that decision, but it just wasn't for me. That's not to say that I wouldn't be resentful, scared, angry, or any number of other emotions. In the end, it didn't matter. She was our baby, a blessing from God.

I won't deny that I'm extremely thankful for Kaitlynn and for the fact that she has turned out to be a typical baby. I am in awe of those special mothers that have endured the same fears and challenges in their pregnancies but with very different outcomes. Raising a child with Down syndrome, as with any other special needs child, introduces a whole new set of challenges that elevates parenting to the next level of "hard." But I would guess that with these challenges also comes great blessings. And even though we haven't had to face it in our own family, I now possess a much greater awareness about Down syndrome. Thanks for letting me share it with you.